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End-of-life care in the critical care setting: Nurses...
Transcript of End-of-life care in the critical care setting: Nurses...
End-of-life care in the critical care setting:
Nurses’ practices and factors affecting these practices
Kristen Louise Ranse BNurs (Hons) MCritCare Nursing
Submitted in fulfilment of the requirements of the degree of
Doctor of Philosophy (PhD)
School of Nursing and Midwifery
Institute of Health and Biomedical Innovation
Queensland University of Technology
February 2013
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Keywords
End of life, practices, critical care, intensive care, nurse, PARIHS framework,
context, evidence, facilitation, survey, mixed methods, descriptive statistics,
exploratory factor analysis, general linear model, palliative values, patient and family
centred care, preparedness
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Abstract
Background
Critical care units are designed and resourced to save lives, yet the provision of end-
of-life care is a significant component of nursing work in these settings. Limited
research has investigated the actual practices of critical care nurses in the provision
of end-of-life care, or the factors influencing these practices. To improve the care
that patients at the end of life and their families receive, and to support nurses in the
provision of this care, further research is needed. The purpose of this study was to
identify critical care nurses’ end-of-life care practices, the factors influencing the
provision of end-of-life care and the factors associated with specific end-of-life care
practices.
Methods
A three-phase exploratory sequential mixed-methods design was utilised. Phase one
used a qualitative approach involving interviews with a convenience sample of five
intensive care nurses to identify their end-of-life care experiences and practices. In
phase two, an online survey instrument was developed, based on a review of the
literature and the findings of phase one. The survey instrument was reviewed by six
content experts and pilot tested with a convenience sample of 28 critical care nurses
(response rate 45%) enrolled in a postgraduate critical care nursing subject. The
refined survey instrument was used in phase three of this study to conduct a national
survey of critical care nurses. Descriptive analyses, exploratory factor analysis and
univariate general linear modelling was undertaken on completed survey responses
from 392 critical care nurses (response rate 25%).
Results
Six end-of-life care practice areas were identified in this study: information sharing,
environmental modification, emotional support, patient and family-centred decision
making, symptom management and spiritual support. The items most frequently
identified as always undertaken by critical care nurses in the provision of end-of-life
care were from the information sharing and environmental modification practice
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areas. Items least frequently identified as always undertaken included items from the
emotional support practice area.
Eight factors influencing the provision of end-of-life care were identified: palliative
values, patient and family preferences, knowledge, preparedness, organisational
culture, resources, care planning, and emotional support for nurses. Strong agreement
was noted with items reflecting values consistent with a palliative approach and
inclusion of patient and family preferences. Variation was noted in agreement for
items regarding opportunities for knowledge acquisition in the workplace and formal
education, yet most respondents agreed that they felt adequately prepared. A context
of nurse-led practice was identified, with variation in access to resources noted.
Collegial support networks were identified as a source of emotional support for
critical care nurses.
Critical care nurses reporting values consistent with a palliative approach and/or
those who scored higher on support for patient and family preferences were more
likely to be engaged in end-of-life care practice areas identified in this study. Nurses
who reported higher levels of preparedness and access to opportunities for
knowledge acquisition were more likely to report engaging in interpersonal practices
that supported patient and family centred decision making and emotional support of
patients and their families. A negative relationship was identified between the
explanatory variables of emotional support for nurses and death anxiety, and the
patient and family centred decision making practice area. Contextual factors had a
limited influence as explanatory variables of specific end-of-life care practice areas.
Gender was identified as a significant explanatory variable in the emotional and
spiritual support practice areas, with male gender associated with lower summated
scores on these practice scales.
Conclusions
Critical care nurses engage in practices to share control with and support inclusion of
families experiencing death and dying. The most frequently identified end-of-life
care practices were those that are easily implemented, practical strategies aimed at
supporting the patient at the end of life and the patient’s family. These practices
arguably require less emotional engagement by the nurse. Critical care nurses’
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responses reflected values consistent with a palliative approach and a strong
commitment to the inclusion of families in end-of-life care, and these factors were
associated with engagement in all end-of-life care practice areas. Perceived
preparedness or confidence with the provision of end-of-life care was associated with
engagement in interpersonal caring practices. Critical care nurses autonomously
engage in the provision of end-of-life care within the constraints of an environment
designed for curative care and rely on their colleagues for emotional support. Critical
care nurses must be adequately prepared and supported to provide comprehensive
care in all areas of end-of-life care practice. The findings of this study raise important
implications, and informed recommendations for practice, education and further
research.
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Contents
Keywords .................................................................................................................... ii Abstract ...................................................................................................................... iii Contents ..................................................................................................................... vi List of Tables .............................................................................................................. x List of Figures .......................................................................................................... xiii List of Abbreviations .............................................................................................. xiv Statement of Original Authorship .......................................................................... xv Grants and Publications ......................................................................................... xvi Acknowledgements ................................................................................................. xvii 1 INTRODUCTION ............................................................................................ 1
1.1 Purpose ............................................................................................................... 5 1.2 Structure of this thesis ........................................................................................ 6
2 LITERATURE REVIEW ................................................................................ 8 2.1 Introduction ........................................................................................................ 8 2.2 Critical care nurses’ end-of-life care practices ................................................... 8
2.2.1 Patient and family centred decision making ............................................... 9 2.2.2 Communication and continuity of care .................................................... 10 2.2.3 Emotional and practical support .............................................................. 11 2.2.4 Symptom management and comfort care .................................................. 12 2.2.5 Spiritual support ....................................................................................... 12
2.3 Factors influencing the provision of end-of-life care ....................................... 13 2.4 End-of-life care in the critical care setting—Context ....................................... 15
2.4.1 Organisational culture ............................................................................. 15 2.4.2 The physical environment ......................................................................... 17 2.4.3 Staffing ...................................................................................................... 18
2.5 End-of-life care in the critical care setting—Evidence .................................... 19 2.5.1 Research ................................................................................................... 19 2.5.2 Nurse practice knowledge ........................................................................ 20 2.5.3 Patient and family preferences ................................................................. 22
2.6 End-of-life care in the critical care setting—Facilitation ................................. 23 2.6.1 Emotional support for nurses ................................................................... 24 2.6.2 Nurses’ end-of-life care values and beliefs .............................................. 25 2.6.3 Coordination of care delivery ................................................................... 25
2.7 Summary........................................................................................................... 27 3 METHODOLOGY ......................................................................................... 28
3.1 Introduction ...................................................................................................... 28 3.2 Mixed methods ................................................................................................. 28 3.3 Ethical considerations ....................................................................................... 32 3.4 Summary........................................................................................................... 33
4 PHASE ONE METHODS .............................................................................. 34 4.1 Introduction ...................................................................................................... 34 4.2 The setting ........................................................................................................ 34 4.3 Participants ....................................................................................................... 35 4.4 Method of data collection ................................................................................. 35 4.5 Procedure .......................................................................................................... 36
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4.6 Data management and analysis ........................................................................ 37 4.7 Summary........................................................................................................... 39
5 PHASE ONE FINDINGS............................................................................... 40 5.1 Introduction ...................................................................................................... 40 5.2 Participant characteristics ................................................................................. 40 5.3 Category: Beliefs about end-of-life care .......................................................... 41
5.3.1 Value of participating in end-of-life care ................................................. 42 5.3.2 Complexity of end-of-life care .................................................................. 43
5.4 Category: End-of-life care in the intensive care context .................................. 44 5.4.1 Organisational support ............................................................................. 45 5.4.2 Modifying the bedside environment .......................................................... 46
5.5 Category: Facilitating end-of-life care ............................................................. 49 5.5.1 Uncertainty and ambiguity ....................................................................... 49 5.5.2 Emotional intensity ................................................................................... 50 5.5.3 Comfort care ............................................................................................. 54 5.5.4 Humanising the patient ............................................................................. 55 5.5.5 Facilitating the family’s experience ......................................................... 57
5.6 Discussion......................................................................................................... 65 5.7 Summary........................................................................................................... 66
6 PHASE TWO METHODS............................................................................. 67 6.1 Introduction ...................................................................................................... 67 6.2 Development of the survey instrument............................................................. 67
6.2.1 Critical care nurses’ end-of-life care practices ....................................... 68 6.2.2 Factors influencing the provision of end-of-life care ............................... 70 6.2.3 Demographic information ........................................................................ 72
6.3 Expert panel ...................................................................................................... 72 6.3.1 Participants .............................................................................................. 72 6.3.2 Procedure ................................................................................................. 73 6.3.3 Data management and analysis ................................................................ 74
6.4 Pilot test ............................................................................................................ 74 6.4.1 The setting and sample ............................................................................. 75 6.4.2 Procedure ................................................................................................. 75 6.4.3 Data management and analysis ................................................................ 76
6.5 Summary........................................................................................................... 76 7 PHASE TWO RESULTS ............................................................................... 77
7.1 Introduction ...................................................................................................... 77 7.2 Expert panel ...................................................................................................... 77 7.3 Pilot test ............................................................................................................ 84
7.3.1 Demographic information ........................................................................ 88 7.3.2 Critical care nurses’ end-of-life care practices ....................................... 91 7.3.3 Factors influencing the provision of end-of-life care ............................... 98
7.4 Summary......................................................................................................... 108 8 PHASE THREE METHODS ...................................................................... 110
8.1 Introduction .................................................................................................... 110 8.2 The setting and sample ................................................................................... 110 8.3 Procedure ........................................................................................................ 111 8.4 Data management and analysis ...................................................................... 112
8.4.1 Descriptive statistics ............................................................................... 113 8.4.2 Exploratory factor analysis .................................................................... 114 8.4.3 Bivariate statistical analysis ................................................................... 118
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8.4.4 Multivariable statistical analysis ............................................................ 119 8.5 Summary......................................................................................................... 121
9 PHASE THREE RESULTS ........................................................................ 122 9.1 Introduction .................................................................................................... 122 9.2 Phase three participants .................................................................................. 122 9.3 Demographic characteristics .......................................................................... 123 9.4 Descriptive statistics ....................................................................................... 127 9.5 Exploratory factor analysis ............................................................................. 129
9.5.1 Exploratory factor analysis: Critical care nurses’ end-of-life care practices .................................................................................................. 129
9.5.2 Exploratory factor analysis: Factors influencing the provision of end-of-life care ............................................................................................... 136
9.6 Bivariate analysis............................................................................................ 145 9.6.1 Bivariate analysis of critical care nurses’ end-of-life care practices
summated scales and demographic variables ........................................ 147 9.6.2 Bivariate analysis of critical care nurses’ end-of-life care practices
summated scales and factors influencing the provision of end-of-life care summated scales ............................................................................. 153
9.7 Multivariable analysis .................................................................................... 156 9.7.1 Information sharing practices model ..................................................... 156 9.7.2 Environmental modification practices model ......................................... 157 9.7.3 Emotional support practices model ........................................................ 158 9.7.4 Patient and family centred decision making practices model ................ 159 9.7.5 Symptom management practices model .................................................. 160 9.7.6 Spiritual support practices model ........................................................... 162
9.8 Assumption testing ......................................................................................... 166 9.9 Summary......................................................................................................... 167
10 DISCUSSION ................................................................................................ 168 10.1 Introduction ............................................................................................ 168 10.2 What are the most frequently reported end-of-life care practices of
Australian critical care nurses? ....................................................................... 168 10.3 What are the factors influencing the provision of end-of-life care as
perceived by Australian critical care nurses? ................................................. 174 10.3.1 Context ............................................................................................... 174 10.3.2 Evidence ............................................................................................. 177 10.3.3 Facilitation ......................................................................................... 181
10.4 What factors are associated with Australian critical care nurses’ end-of-life care practices? ..................................................................................... 186
10.4.1 Facilitation ......................................................................................... 186 10.4.2 Evidence ............................................................................................. 188 10.4.3 Context ............................................................................................... 190 10.4.4 Demographic explanatory variables .................................................. 191
10.5 Strengths and limitations ........................................................................ 194 10.6 Summary ................................................................................................. 201
11 RECOMMENDATIONS AND CONCLUSIONS ..................................... 203 11.1 Introduction ............................................................................................ 203 11.2 Recommendations for practice ............................................................... 203 11.3 Recommendations for education ............................................................ 206 11.4 Recommendations for research .............................................................. 208 11.5 Conclusions ............................................................................................ 210
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12 REFERENCES ............................................................................................. 213 13 APPENDICES............................................................................................... 232
13.1 QUT research ethics approval—Phase one ............................................ 232 13.2 QUT research ethics approval—Phases two and three ........................... 234 13.3 ACT health ethics approval .................................................................... 236 13.4 Email indicating support for phase three of the study from the
Australian College of Critical Care Nurses .................................................... 238 13.5 Phase one bulletin board advertisement ................................................. 239 13.6 Phase one information sheet and consent form ...................................... 240 13.7 Email invitation to experts to participate in the survey review panel .... 242 13.8 Information sheet for expert panel .......................................................... 243 13.9 Phase two pilot test email invitation, email reminder and email retest
invitation ......................................................................................................... 245 13.10 Phase three email invitation and email reminder .................................... 247 13.11 Information sheet attached to email invitation to participate (phase
two pilot test and phase three) ........................................................................ 249 13.12 Final version of survey instrument (Word document version) ............... 251 13.13 Participant responses as a percentage of the sample, means and
standard deviations for each item in the Critical care nurses’ end-of-life care practices section of the survey instrument (n = 392) ............................. 262
13.14 Participant responses as a percentage of the sample, means and standard deviations for each item in the Factors influencing the provision of end-of-life care section of the survey instrument (n = 392) ....................... 265
13.15 Structure matrix for exploratory factor analysis with oblique rotation—Critical care nurses’ end-of-life care practices ............................. 269
13.16 Structure matrix for exploratory factor analysis with oblique rotation—Factors influencing the provision of end-of-life care .................... 272
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List of Tables
Table 5-1: Phase one participant characteristics ........................................................ 40
Table 5-2: Categories and subcategories developed from phase one interview
data ............................................................................................................ 41
Table 6-1: Comparison of Clarke et al.’s (2003) domains of end-of-life care,
subcategories developed from phase one interview data and initial a
priori scales in the Critical care nurses’ end-of-life care practices
section of the survey instrument ............................................................... 69
Table 6-2: Domains and associated a priori scales in the Factors influencing the
provision of end-of-life care section of the survey instrument ................. 70
Table 7-1: Expert panel members .............................................................................. 78
Table 7-2: Content validity index for each item (I-CVI) in the Critical care
nurses’ end-of-life care practices section of the survey instrument ......... 78
Table 7-3: Content validity index for each item (I-CVI) in the Factors
influencing the provision of end-of-life care section of the survey
instrument .................................................................................................. 80
Table 7-4: Items deleted from the survey instrument following review by the
expert panel ............................................................................................... 83
Table 7-5: Additional items included in the Critical care nurses’ end-of-life care
practices section of the survey instrument ................................................ 85
Table 7-6: Additional items included in the Factors influencing the provision of
end-of-life care section of the survey instrument ...................................... 86
Table 7-7: Demographic characteristics of pilot test participants (n = 28) ................ 89
Table 7-8: Pilot test participants’ current workplace and participation in nursing
work (n = 28) ............................................................................................. 90
Table 7-9: Items in the patient and family centred decision making scale ................ 92
Table 7-10: Items in the explaining and providing information scale ....................... 92
Table 7-11: Items in the continuity of care scale ....................................................... 94
Table 7-12: Items in the emotional and practical support for patients and families
scale ........................................................................................................... 94
Table 7-13: Items in the comfort care—environmental factors scale ........................ 95
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Table 7-14: Items in the symptom management and comfort care scale ................... 96
Table 7-15: Items in the spiritual support scale ......................................................... 97
Table 7-16: Internal consistency and test-retest reliability of the a priori scales in
the Critical care nurses’ end-of-life care practices section of the
survey instrument ...................................................................................... 98
Table 7-17: Items in the organisational culture scale ................................................. 99
Table 7-18: Items in the resources scale .................................................................. 100
Table 7-19: Items in the patient and family preferences scale ................................. 102
Table 7-20: Items in the nursing education and experience scale ............................ 103
Table 7-21: Items in the nurse practice knowledge scale ........................................ 104
Table 7-22: Items in the emotional support for nurses scale ................................... 105
Table 7-23: Items in the nurses’ end-of-life care values and beliefs scale .............. 106
Table 7-24: Items in the coordination of care delivery scale ................................... 107
Table 7-25: Internal consistency and test-retest reliability of the a priori scales in
the Factors influencing the provision of end-of-life care section of the
survey instrument .................................................................................... 108
Table 8-1: Items reverse scored prior to factor analysis .......................................... 113
Table 9-1: Demographic characteristics of phase three participants (n = 392) ....... 124
Table 9-2: Phase three participants’ location, workplace and participation in
work (n = 392) ......................................................................................... 125
Table 9-3: The mean and standard deviation for the 10 items in the Critical care
nurses’ end-of-life care practices section most frequently undertaken
based on their mean score (n = 392) ....................................................... 127
Table 9-4: The mean and standard deviation for the 10 most strongly agreed
items in the Factors influencing the provision of end-of-life care
section of the survey instrument based on their mean score (n = 392) ... 128
Table 9-5: Factor loadings for exploratory factor analysis with oblique rotation
of Critical care nurses’ end-of-life care practices section of the survey 132
Table 9-6: Factor correlation matrix of Critical care nurses’ end-of-life care
practices section of the survey instrument .............................................. 135
Table 9-7: Final factors, labels and Cronbach’s alphas for Critical care nurses’
end-of-life care practices section of the survey instrument .................... 136
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Table 9-8: Factor loadings for exploratory factor analysis with oblique rotation
of Factors influencing the provision of end-of-life care section of the
survey instrument .................................................................................... 139
Table 9-9: Factor correlation matrix for the Factors influencing the provision of
end-of-life care section of the survey instrument .................................... 143
Table 9-10: Final factors, labels and Cronbach’s alpha for the Factors
influencing the provision of end-of-life care section of the survey
instrument ................................................................................................ 144
Table 9-11: Psychometric properties of the summated scales from the Critical
care nurses’ end-of-life care practices section of the survey
instrument (n = 392) ................................................................................ 145
Table 9-12: Psychometric properties of the summated scales from the Factors
influencing the provision of end-of-life care section of the survey
instrument ................................................................................................ 146
Table 9-13: Spearman’s rho correlation coefficients between outcome variables
and explanatory factors ........................................................................... 154
Table 9-14: Parameter estimates for information sharing model ............................. 156
Table 9-15: Parameter estimates for environmental modification model ................ 157
Table 9-16: Parameter estimates for emotional support model ............................... 158
Table 9-17: Parameter estimates for patient and family centred decision making
model ....................................................................................................... 160
Table 9-18: Parameter estimates for symptom management model ........................ 161
Table 9-19: Parameter estimates for spiritual support model .................................. 162
Table 9-20: Comparison of practice models and contributing parameters .............. 164
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List of Figures
Figure 3-1: Three-phase exploratory sequential mixed methods design (adapted
from Creswell & Plano Clark, 2007) ........................................................ 31
Figure 9-1: Flow chart of participants in phase three .............................................. 123
Figure 9-2: Scree plot of eigen values for factors in the Critical care nurses’ end-
of-life care practices section of the survey instrument ........................... 130
Figure 9-3: Scree plot of eigenvalues for factors in the Factors influencing the
provision of end-of-life care section of the survey instrument ............... 137
Figure 9-4: Histogram of information sharing summated scale............................... 146
Figure 9-5: Boxplot of years of experience in nursing and information sharing
practices .................................................................................................. 148
Figure 9-6: Boxplot of years of experience in nursing and emotional support ........ 149
Figure 9-7: Boxplot of years of experience in nursing and symptom management 151
Figure 9-8: Residual plot of emotional support practices model ............................. 166
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List of Abbreviations
ACCCN Australian College of Critical Care Nurses
AACN American Association of Colleges of Nursing
ANZICS Australian and New Zealand Intensive Care Society
CCU Coronary care unit
CFA Confirmatory factor analysis
CVI Content validity index
DAS Death Anxiety Scale
DoHA Department of Health and Ageing
EFA Exploratory factor analysis
EOL End of life
EOLC End-of-life care
ESHF End stage heart failure
FTE Full-time equivalent
HDU High dependency unit
ICU Intensive care unit
I-CVI Item content validity index
KMO Kaiser-Meyer-Oklin
MSA Measure of sampling adequacy
NHMRC National Health and Medical Research Council
NiPCAS Neonatal Palliative Care Attitude Scale
PAF Principal axis factoring
PARIHS Promoting Action on Research Implementation in Health Services
PCC4U Palliative Care Curriculum for Undergraduates
PCQN Palliative Care Quiz for Nursing
PEPA Program of Experience in the Palliative Approach
S-CVI Scale content validity index
QUT Queensland University of Technology
URL Uniform resource locator
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Statement of Original Authorship
The work contained in this thesis has not been previously submitted to meet
requirements for an award at this or any other higher education institution. To the
best of my knowledge and belief, the thesis contains no material previously
published or written by another person except where due reference is made.
Kristen Ranse
February 2013
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Grants and Publications
ACT Nursing & Midwifery Board 2008, Novice Researcher Grant, AU$3000.
Ranse, K. (2009, October). Intensive care nurses’ end-of-life care practices and
beliefs. Paper presented at the 34th Australian and New Zealand Annual Scientific
Meeting on Intensive Care, Perth, WA.
Ranse, K., Yates, P., & Coyer, F. (2012). End-of-life care in the intensive care
setting: A descriptive exploratory qualitative study of nurses’ beliefs and practices.
Australian Critical Care, 25(1), 4–12.
Ranse, K. (2012, October). Factors influencing the provision of end-of-life care in
critical care settings. Paper presented at the 37th Australian and New Zealand
Annual Scientific Meeting on Intensive Care, Adelaide, SA.
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Acknowledgements
This thesis was edited by Elite Editing, and editorial intervention was restricted to Standards
D and E of the Australian Standards for Editing Practice.
This PhD journey would not have been possible without the assistance and support I
have received from many people. First, I would like to acknowledge my principal
supervisor, Professor Patsy Yates, and my associate supervisor, Dr Fiona Coyer, for
their expert advice, continuing support and encouragement. I greatly appreciate and
value the time and effort that they have contributed to this PhD research project and
my research training during candidature.
I would like to thank the critical care nurses that contributed to each phase of this
study. Without their enthusiasm for this study and their willingness to share their
personal experiences of the provision of end-of-life care in critical care settings, this
research would not have been possible.
Thank you to Dr Laurie Grealish, Dr Jan Taylor and Professor Paul Morrison, who
encouraged me to undertake a PhD and continue to contribute to my development as
a nursing academic. Thanks also to Professor Mary Cruickshank and my colleagues
in the Disciplines of Nursing & Midwifery at the University of Canberra for your
interest in my work and ongoing support.
This PhD would not be possible without the love and support of my husband, Jamie,
and parents, Stuart and Marion Storey. Thanks for all of the emotional and practical
support over the last six years. Finally, I would like to acknowledge my children,
Charlotte, Sadie and Lucas, who have shared their lives so far with Mummy’s PhD. I
hope that I can inspire and share a love of learning with you.
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1 INTRODUCTION
The term ‘critical care’ encompasses a range of clinical units, including general and
specialty intensive care units (ICUs), combined intensive care/coronary care units
(CCUs), paediatric ICUs, emergency departments and aeromedical retrieval units
(Drennan, Hicks, & Hart, 2010). These units have developed in response to advances
in medicine and technology that have enhanced the ability to save lives and delay
death. Patients are admitted to critical care units with traumatic injury, critical illness
or an acute exacerbation of a chronic illness. Increasingly, patients have multiple
comorbidities creating prognostic difficulties. The potential benefits of critical care
for the patient and their likelihood of survival to discharge are just some of the
admission criteria considered by the medical team in the allocation of critical care
services (Judson & Fisher, 2006). The critical care setting is dominated by a culture
of cure, and critically ill patients are monitored and treated using advanced
technology and specialised care aimed at treating critical illness and saving lives.
Despite this curative focus, death remains an inevitable part of life. A review of the
Australian and New Zealand Intensive Care Society (ANZICS) adult patient database
revealed average overall Australian ICU mortality rates of approximately 10%
(Moran, Bristow, Solomon, George, & Hart, 2008). Internationally, ICU mortality
rates of between 15% and 35% have been reported (Seymour, 2001). The death of a
patient in a critical care unit can occur suddenly during the provision of active
treatment or following the withdrawal or withholding of life-sustaining treatment. An
incidence of death following the withdrawal of life-sustaining treatment of between
49% and 90% has been reported in the literature (M. J. Bloomer, Triuvoipati,
Tsiripillis, & Botha, 2010; Le Conte et al., 2010; Luce, 1997). Thus, despite
difficulties in determining patient prognosis in the critical care patient population,
more than half of all patient deaths in critical care are expected following a decision
to withdraw or withhold life-sustaining treatment. Although critical care is
dominated by a curative focus, the mortality rate of patients results in the provision
of end-of-life care comprising a significant component of nursing work.
2
The National Palliative Care Strategy 2010 (Australian Government Department of
Health and Ageing [DoHA], 2010) acknowledges that definitions of end of life vary
from the final days to the last two years of life (p. 19). In contrast, the definition
proposed by Palliative Care Australia (2008) is not time bound. Instead, Palliative
Care Australia defines end of life as ‘that part of life where a person is living with,
and impaired by, an eventually fatal condition, even if the prognosis is ambiguous or
unknown’ (p. 8). In the critical care environment, in which goals of care are
predominantly focused on cure, limited attention has been given to defining what is
meant by end of life. In practice, however, end of life is often considered the period
of life following a decision to withdraw or withhold life-sustaining treatment, as
death of the patient is an expected outcome. It is this phase of care that is the focus of
the present study.
Previous authors have acknowledged the philosophical tensions that exist between
palliative care and critical care (Davidson et al., 2002; Davidson et al., 2003; Wotton,
Borbasi, & Redden, 2005). In particular, the holistic approach of palliative care can
be at odds with the reductionist curative focus of critical care. Critical care units are
designed and resourced to save lives, and the imposing technological imperative
creates an environment that could disrupt the provision of a natural death
incorporating patient and family centred holistic care. In fact, in this context, death
can be viewed as a professional failure (Beckstrand, Callister, & Kirchhoff, 2006;
Cartwright, Steinberg, Williams, Najman, & Williams, 1997; Halcomb, Daly,
Jackson, & Davidson, 2004; McKeown, Cairns, Cornbleet, & Longmate, 2010). The
provision of end-of-life care to patients and their families in the curative context of
critical care thus presents unique challenges and important opportunities for critical
care nurses engaged in this work. For example, patients are admitted to critical care
units during an acute phase of illness or following traumatic injury, limiting the time
for the critical care nurse to establish a relationship with the patient and the patient’s
family (Beckstrand, Smith, Heaston, & Bond, 2008; LeConte et al., 2010; Nelson &
Meier, 1999). This is further complicated by the fact that up to 95% of critically ill
patients are cognitively impaired as a result of their illness, injury and/or medical
management (Truog et al., 2008). In addition, the length of time between the
withdrawal of life-sustaining treatment and subsequent death of the patient is
relatively short (Efstathiou & Clifford, 2011). In a chart audit undertaken over a 12-
3
month period in an Australian metropolitan ICU, the majority of patients (44%) died
between one and six hours following withdrawal of life-sustaining treatment (M. J.
Bloomer et al., 2010). This is consistent with figures reported in epidemiological
studies in ICUs internationally (Hall, Rocker, & Murray, 2004; Wunsch, Harrison,
Harvey, & Rowan, 2005). Thus, critical care nurses have limited time to establish
relationships and provide comprehensive care to the patient at the end of life and to
the patient’s family. This presents a unique challenge and stressor for critical care
nurses engaged in this work (Efstathiou & Clifford, 2011).
Despite the limited time frame available for the delivery of end-of-life care, critical
care nurses are in a unique position to control the timing and experience of death and
dying for patients and their families (Seymour, 2001). The timing of removal of
treatment and the dying trajectory can be controlled to create a natural death,
whereby the demise of the patient appears unrelated to the removal of treatment
(Seymour, 2001). Thus, death occurs naturally rather than as a result of the actions or
inactions by medical professionals directly involved (Seymour, 2001; Timmermans,
2005). Previous research also suggests that implementation of a decision to withdraw
life-sustaining treatment and the subsequent death of the patient can be delayed to
enable family to accept the situation and/or relatives to gather at the patient’s bedside
(Calvin, Lindy, & Clingon, 2009; Fridh, Forsberg, & Bergbom, 2009; Heland, 2006).
However, these practices can subject the patient to prolonged and unnecessary
suffering and place burden on finite critical care resources (Burns, Jacobs, & Jacobs,
2011; Crump, Schaffer, & Schulte, 2010).
Nurses in critical care tend to work alongside their medical colleagues (Seymour,
2001). They practice with a degree of autonomy and work in a context that supports
high nurse-to-patient ratios. This context presents important opportunities for nurses
to deliver skilled, comprehensive care to patients at the end of life and their families.
Despite the frequency with which nurses provide end-of-life care in critical care units
and the opportunities provided by the critical care practice context, evidence
indicates nurses are not adequately prepared to provide care to patients at the end of
life and their families. In a recent survey completed by 475 critical care nurses in the
United States, only 15.5% of participants reported that their nursing training included
compulsory content pertaining to withdrawal of life-sustaining treatment and 44% of
4
participants indicated that they had attended in-service about withdrawal of life-
sustaining treatment (Kirchhoff & Kowalkowski, 2010). Limited coverage of end-of-
life content in critical care texts has also been reported (Kirchhoff, Beckstrand, &
Anumandla, 2003).
The ageing population combined with the institutionalisation of death in hospitals,
rather than natural death at home, has contributed to a lack of exposure to death and
dying in society. New nurses may have no prior experience with death and dying
until confronted in their workplace with the expectation to care for a patient at the
end of life. Conversely, experienced critical care nurses can develop a blunted
emotional response to death and dying in their work whereby death becomes
normalised through frequent exposure (Badger, 2005b; Shorter & Stayt, 2010).
Inadequate preparation and support of nurses providing end-of-life care, in addition
to the stress associated with the provision of this care, can compromise the quality of
care afforded to patients and their families and contribute to poor retention of critical
care nurses. Identification and development of resources and strategies to prepare
and support nurses in the provision of end-of-life care are needed.
Limited research has been conducted in Australia on end-of-life care in critical care
settings from a nursing perspective. Previous research has explored intensive care
nurses’ perceptions of medical futility and their role in decision making and
withdrawal of treatment (Heland, 2006) and the lived experience of intensive care
nurses caring for patients having treatment withheld or withdrawn (Halcomb et al.,
2004; Jones & FitzGerald, 1998). Each of these studies was undertaken from a
qualitative approach, using small non-probability samples. These studies provide
some insight into the issues but the ability to generalise the findings beyond the
settings of the studies is limited. More recently, the findings of audits of medical
records of patients who had died in an Australian ICU have been published (M.
Bloomer, Lee, & O’Connor, 2010; M. J. Bloomer et al., 2010). The audits described
the frequency of not-for-resuscitation orders, attendance at family meetings,
treatment withdrawal and the specific interventions withdrawn. While these studies
provide important information regarding end-of-life care practices in Australian
ICUs, the use of chart audit as the primary source of data is limited because it
assumes that such practices are consistently documented by care providers. Indeed,
5
the authors noted the absence of documentation regarding communication between
the nurse and family in their setting (M. Bloomer et al., 2010). Similarly, a
documentation audit undertaken in the United States found limited presence of
critical care nurses at the end of life, but noted that it was likely due to a lack of
nursing documentation rather than a lack of nursing care (Kirchhoff, Anumandla,
Foth, Lues, & Gilbertson-White, 2004). Further research to identify the actual end-
of-life care practices of Australian critical care nurses using alternative methods is
needed.
Internationally, qualitative research exploring various aspects of critical care nurses’
experiences of end-of-life care has been reported (Calvin et al., 2009; Espinosa,
Young, Symes, Haile, & Walsh, 2010; Fridh et al., 2009; McKeown et al., 2010;
McMillen, 2008; Vanderspank-Wright, Fothergill-Bourbonnais, Brajtman, &
Gagnon, 2011). In addition, research conducted in the United States using both
qualitative and quantitative approaches provides insight into critical care nurses’
perceptions of barriers to and facilitators of end-of-life care (Beckstrand et al., 2006;
Beckstrand & Kirchhoff, 2005; Kirchhoff & Beckstrand, 2000; Nelson et al., 2006).
However, several differences exist between the critical care environments of the
United States and Australia, including in nursing roles, staffing structure and patient
acuity (Ogle, Copley, Bethune, & Parkin, 2004).
To evaluate and improve the care that dying patients and their families receive and to
support nurses in the provision of optimal end-of-life care, a better understanding of
the end-of-life care practices of critical care nurses and the factors influencing these
practices is required.
1.1 Purpose
The purpose of this three-phase exploratory sequential mixed methods study was to
identify the end-of-life care practices of Australian critical care nurses, the factors
influencing the provision of end-of-life care and the factors associated with specific
end-of-life care practices. Phase one involved a qualitative exploration of the end-of-
6
life care experiences and practices of critical care nurses through semi-structured
interviews at an Australian tertiary teaching hospital. The findings of phase one,
combined with a review of the literature, contributed to the development of a survey
instrument in phase two. The survey instrument was reviewed by an expert panel and
pilot tested with a convenience sample of critical care nurses to obtain preliminary
evidence of the reliability and validity of the tool. The quantitative phase of this
study, phase three, utilised the survey instrument to survey a national sample of
critical care nurses to identify the frequency of select end-of-life care practices and
the factors influencing these practices.
Specifically, the key research questions in this study are:
1. What are the most frequently reported end-of-life care practices of Australian
critical care nurses?
2. What are the factors influencing the provision of end-of-life care as perceived
by Australian critical care nurses?
3. What factors are associated with Australian critical care nurses’ end-of-life
care practices?
1.2 Structure of this thesis
This chapter has provided a brief introduction to the key issues surrounding end-of-
life care in the critical care context and significance of this study to nursing practice.
The purpose of this study was identified and three key research questions presented.
Chapter Two provides a critical appraisal of nursing and sociological literature
related to end-of-life care in critical care contexts. Clarke et al.’s (2003) domains of
end-of-life care and the Promoting Action on Research Implementation in Health
Services (PARIHS) framework (Kitson, Harvey, & McCormack, 1998; Rycroft-
Malone et al., 2002) are discussed and then used as conceptual frameworks to
organise the literature reviewed and presented in Chapter Two.
7
Mixed methods is introduced in Chapter Three as the methodological approach used
in this study. The key strengths and criticisms of mixed methods are discussed and
the three-phase exploratory sequential mixed methods design utilised in this study is
described. Chapter Three concludes following a discussion of the ethical
considerations pertinent to the study.
Chapter Four describes the methods used in phase one of this study to interview a
small sample of critical care nurses. The findings of analysis of phase one interviews
are presented in Chapter Five.
Chapter Six describes the methods used in phase two of the study to develop and test
a survey instrument. Chapter Seven documents the results of phase two that provide
preliminary evidence of the validity and reliability of the survey instrument.
Phase three consisted of a national survey of critical care nurses’ end-of-life care
practices and the factors influencing the provision of end-of-life care using the
survey instrument developed in phase two. Chapter Eight describes phase three
methods, including the sample and setting, procedure, data management and
analysis. The results of descriptive statistics, exploratory factor analysis (EFA) and
multivariable analysis of data obtained from responses to the national survey are
presented in Chapter Nine.
Chapter Ten provides a discussion of the key findings of this study pertaining to each
research question. This chapter concludes following a discussion of the strengths and
limitations of this study. The findings of this study raise a number of important
implications. Recommendations for practice, education and research are outlined and
concluding remarks are presented in Chapter Eleven.
8
2 LITERATURE REVIEW
2.1 Introduction
This chapter provides a review of nursing, critical care and sociological literature
related to end-of-life issues in critical care contexts to provide a contextual base for
this study and situate the contribution of this study within existing nursing
knowledge and practice. The chapter will first provide a critical appraisal of the
literature pertaining to the end-of-life care experiences and practices of critical care
nurses. Clarke et al.’s (2003) six domains of end-of-life care will be introduced and
then used as a guiding framework to present empirical evidence related to critical
care nurses’ end-of-life care practices. The PARIHS framework (Kitson et al., 1998;
Rycroft-Malone et al., 2002) will then be described, and its role as a conceptual
framework to identify the factors that influence the provision of end-of-life care in
critical care settings will be discussed. Each of the key elements of the PARIHS
framework—context, evidence and facilitation—will then be defined and a critical
review of the literature for each element as it relates to the provision of end-of-life
care in critical care settings will be presented.
2.2 Critical care nurses’ end-of-life care practices
Few studies have explored actual nursing practices undertaken in the provision of
end-of-life care in the critical care setting. Clarke et al. (2003), using a modified
Delphi approach involving 36 expert clinicians in the United States, identified seven
domains of end-of-life care and their associated quality indicators for the intensive
care setting. The seven domains identified were patient and family centred decision
making, communication, continuity of care, emotional and practical support,
symptom management and comfort care, spiritual support, and emotional and
organisational support for intensive care clinicians. The domains and quality
indicators were then reviewed by 15 nurse-physician teams to identify interventions
and behaviours that could be implemented to improve these indicators (Clarke et al.,
2003). Although Clarke et al.’s findings provide some insight into the end-of-life
care practices of critical care nurses, the sample was limited to participants
9
considered clinical experts, and empirical testing and validation of behaviours
identified with larger samples was not undertaken. The practice of expert nurses
differs to those of nurses with less experience in and knowledge of end-of-life care.
In an Australian study that compared the practice behaviours of specialist intensive
care nurses with those of generalist nurses working in intensive care, a qualitative
difference was noted in the knowledge and practice of these nurses (Fairweather &
Gardner, 2000).
The domains of end-of-life care identified by Clarke et al. (2003) broadly identify
relevant areas of critical care nurses’ end-of-life care practices. As such, the domains
were selected as a framework to present the literature review related to end-of-life
care practices for this thesis and inform the development of the survey instrument.
Specifically, a critical review of the literature related to critical care nurses’ end-of-
life care experiences and practices was undertaken and is presented as it relates to the
domains of patient and family centred decision making, communication, continuity
of care, emotional and practical support, symptom management and comfort care,
and spiritual support. The domain emotional and organisational support for intensive
care clinicians will not be addressed in this section as it does not relate directly to the
care of the patient; however, this domain will be addressed later in this chapter when
the factors influencing the provision of end-of-life care are considered.
2.2.1 Patient and family centred decision making
Although most people state that their final wish is to die at home, the reality is that
most die in a hospital or other health care institution (Kellehear, 2008). Critically ill
and dying patients are admitted to acute care hospitals, where a cascade of
intervention can occur in an attempt to treat illness, postpone death and prolong life.
The institutionalisation of death and dying through admission of critically ill and
dying patients to hospital affords health care professionals increased social control
over these processes (Hart, Sainsbury, & Short, 1998). Practices related to patient
and family centred decision making can assist critical care nurses to share control of
death and dying with the patient and family.
10
Position statements published by the ANZICS (2003) and the American College of
Critical Care Medicine (Truog et al., 2008) provide support for the participation of
the patient and family in decision making. The ANZICS position statement
acknowledges that, when considering decisions to withhold or withdraw treatment,
the preference of the patient (if known) or their likely preference as expressed by
their next of kin should be considered. The ANZICS position statement does not
specifically address the role of the nurse or the care to be provided following the
withholding or withdrawal of treatment except to state that an alternative, comfort-
focused care plan should be implemented. The statement published by the American
College of Critical Care Medicine provides recommendations for the withholding
and withdrawal of treatment, the provision of end-of-life care and the continued care
of the family following the death of the patient (Truog et al., 2008). This statement
(Truog et al., 2008) supports the participation of the patient and family in decision
making regarding withholding and withdrawing treatment and the subsequent care
provided, highlighting family-centred care as a ‘comprehensive ideal for managing
end-of-life care’ (p. 953). The inclusion of the patient and family in decision making
regarding withholding or withdrawing life-sustaining treatment and the provision of
end-of-life care, as well as their involvement in the provision of this care for the
patient at the end of life is important (Kirchhoff et al., 2000) and can influence the
experience of end-of-life care for the patient and family. Patient and family centred
decision making is thus accepted as an important component of care.
2.2.2 Communication and continuity of care
Communication between health care providers and patients at the end of life and
their families and continuity of care are important practices in the provision of end-
of-life care. Providing and explaining information to patients and their families have
been identified in previous research as practices undertaken by critical care nurses
(Borbasi, Wotton, Redden, & Chapman, 2005; Fridh et al., 2009; McClement &
Degner, 1995). However, the actual content of this information can vary. Fridh et al.
(2009) found that critical care nurses communicated with families about the
withdrawal of treatment and dying process, yet communication with patients was on
11
a more superficial level, such as who was in the room and the physical nursing care
they were receiving. Although continuity of care has been cited as a component of
good end-of-life care (Hov, Hedelin, & Athlin, 2007; Kirchhoff et al., 2000) and lack
of continuity as a barrier to the provision of end-of-life care (Kirchhoff et al., 2000;
Vanderspank-Wright et al., 2011), little discussion of the practices that comprise and
support continuity of care for patients at the end of life and their families in the
critical care context have been provided.
2.2.3 Emotional and practical support
The provision of emotional and practical support to family members has been
recognised as important to quality end-of-life care (Halcomb et al., 2004; Kirchhoff
& Beckstrand, 2000; Puntillo et al., 2001). Halcomb et al. (2004) found that during
the provision of end-of-life care, the presence of family shifted the nurse’s attention
from the patient to the family. Nurses provide emotional and practical support to
patients and their families just by being there, providing a physical presence (Hodde,
Engelberg, Treece, Steinberg, & Curtis, 2004; Thompson, McClement, & Daeninck,
2006) and providing support and time for families to be alone with the patient after
death (Beckstrand & Kirchhoff, 2005; Bloomer, Morphet, O’Connor, Lee, &
Griffiths, in press). However, these practices could be constrained by the pre-existing
relationship between the nurse and family, and the nurse’s personal comfort with the
provision of end-of-life care.
In addition to physical presence, emotional and practical support can be provided
through interventions designed to create positive experiences and memories for the
families of a patient at the end of life. Although reflective accounts have been
published in the literature documenting nurses’ engagement in memory making,
positive experiences for patients at the end of life and their families (Faas, 2004), few
empirical studies have reported this area of practice (Coombs, 2010; Hansen,
Goodell, DeHaven, & Smith, 2009; Vanderspank-Wright et al., 2011). Recently,
Vanderspank-Wright et al. (2011) identified a theme providing memories in which
12
nurses organise or create positive and memorable experiences for the patient and the
patient’s family.
2.2.4 Symptom management and comfort care
Clarke et al.’s (2003) symptom management and comfort care domain incorporates
the physical care of the patient at the end of life. Maintaining patient dignity and
managing patient pain are two factors that have been identified as important to end-
of-life care in previous studies (Beckstrand et al., 2006; Halcomb et al., 2004;
Kirchhoff & Beckstrand, 2000; Kirchhoff et al., 2000). In a national survey of a
stratified random sample of 906 American critical care nurses’ (response rate 30%)
knowledge, beliefs and practices related to end-of-life care, 78% of respondents
believed that patients sometimes or frequently received inadequate pain management
(Puntillo et al., 2001). Similarly, an Australian study of 17 registered nurses’
perceptions of providing end-of-life care to patients with end stage heart failure
(ESHF) in acute care and community settings, difficulty in managing pain and
breathlessness was identified (Wotton et al., 2005).
Other interventions such as positioning, pressure area care and hygiene practices
including mouth care and eye care are important practices in the provision of comfort
care to the patient at the end of life (Latour, Fulbrook, & Albarran, 2009; Puntillo et
al., 2001). Moreover, the continued use of interventions that do not provide comfort
such as cardiac monitoring must be reviewed (Mulligan, 2005; Truog et al., 2008). In
the generally short period between withdrawal of treatment and death of the patient,
critical care nurses must provide comprehensive symptom management and comfort
care to meet the physical care needs of the patient at the end of life.
2.2.5 Spiritual support
Spiritual support is widely recognised as a component of holistic care and is included
as a domain of care in Clarke et al.’s (2003) framework. Exley (2004) states that the
13
provision of spiritual support is ‘one of the most difficult “needs” to assess and meet’
(p. 117), with today’s multicultural society and the large number of religions
contributing to the challenge of providing spiritual support. The practices undertaken
by critical care nurses in the provision of spiritual care to patients at the end of life
and their families were not identified in the literature reviewed.
2.3 Factors influencing the provision of end-of-life care
In addition to identifying the current end-of-life care practices of critical care nurses,
this study aimed to identify the factors influencing the provision of end-of-life care,
and the relationships between these factors and specific end-of-life care practices.
Due to the limited research in this field and the broad range of social and personal
factors that could potentially influence end-of-life care practices, an overarching
framework was used to guide and organise the literature review to identify the
important variables to be examined to achieve this aim. Specifically, the PARIHS
framework was used to capture the complexity of context, evidence and facilitation
factors that can influence nursing practice.
The PARIHS framework describes the factors influencing the uptake of evidence in
clinical practice (Kitson et al., 1998). The PARIHS framework consists of three key
elements: context, evidence and facilitation (Rycroft-Malone et al., 2002). In
comparison to linear practice models in which component factors are considered in
isolation, the authors of this framework suggest that each element should be
considered simultaneously, acknowledging the interdependence of the elements and
capturing the complexity and reality of clinical practice (Kitson et al., 1998). Each
element is measured on a high–low continuum. Most successful implementation of
uptake of evidence or a specified change in practice occurs when each element is
rated as high. When an element is rated as low, the influence of this element may be
overcome if other elements are rated highly (Kitson et al., 1998).
An assumption implicit in this conceptual framework is that implementation of a
specified change in practice—the outcome variable—will improve the quality of
14
patient care. In the context of the current study, the outcome variable is critical care
nurses’ end-of-life care practices as described by nurses themselves. This study is
limited, therefore, to the perspective of the critical care nurses providing this care. It
does not consider the perspectives of the recipients of this care, or attempt to define
good end-of-life care.
A further assumption of the framework is that each of the elements and subelements
defined in the framework are discrete yet equally important variables influencing
practice (Kitson et al., 1998; Kitson et al., 2008). Since the framework was originally
developed, conceptual analyses based on a critical review of the literature has been
undertaken on each element of the framework (Harvey et al., 2002; McCormack et
al., 2002; Rycroft-Malone et al., 2002). The findings of these analyses and a critical
synthesis of the published literature pertaining to the PARIHS framework (Helfrich
et al., 2010) indicate that some elements and subelements within the framework lack
conceptual clarity and that overlap between subelements exists. Although the
framework’s original authors have suggested that the key elements of the framework
are interdependent (Kitson et al., 1998), schematic representation of the elements on
a dichotomous continuum alludes to linearity, rather than multidimensionality
(Helfrich et al., 2010). Reported use of the PARIHS framework in empirical research
mainly includes the use of the key elements of the framework as a guide to change
practice or evaluate changes in practice post hoc (Helfrich et al., 2010; Rycroft-
Malone et al., 2002). Further empirical research is needed to test this conceptual
framework (Rycroft-Malone, Seers, et al., 2004). Specifically, testing of the
relationships between the elements of the framework is required to understand the
importance of the individual elements and the relationships between these elements
(Rycroft-Malone et al., 2002). In the current study, each of the elements and
subelements (that is, factors influencing the provision of end-of-life care) are
examined as discrete concepts. However, the relationships between these factors and
the relative importance of these factors from the perspective of critical care nurse
participants are examined through multivariable analyses.
The key elements of the PARIHS framework—context, evidence and facilitation—
thus provide an organising framework to capture the complexity of factors that can
influence nursing practice. In the following section, a definition for each of these
15
elements and the relevance of each element to the study of factors influencing the
provision of end-of-life care in critical care settings is examined.
2.4 End-of-life care in the critical care setting—Context
In the PARIHS framework, the element context includes all aspects of the setting
where ‘practice takes place’ (McCormack et al., 2002, p. 94). Conceptual analysis of
the element context identified culture, the physical environment, leadership and
evaluation of performance as factors contributing to the context of the practice
setting (McCormack et al., 2002; Rycroft-Malone et al., 2002). The critical care
setting is a practice context that has a number of unique features. Three specific
aspects of the context that could influence the provision of end-of-life care by nurses
in the critical care setting are discussed below: organisational culture, the physical
environment and staffing.
2.4.1 Organisational culture
The organisational culture of critical care is dominated by a curative focus, yet
practice is surrounded in uncertainty and ambiguity related to patient prognosis and
treatment decisions. Patients can be admitted to critical care units for a trial of life-
sustaining treatment, sparking a cascade of interventions implemented through
decisions by the medical team. The decision to withdraw these interventions appears
more difficult, requiring consensus among the health care team and between the
health care team and the patient’s family (Timmermans, 2005).
Critical care nurses can experience stress and dissatisfaction related to the curative
treatment of a patient that they perceive will not recover. Heland (2006) interviewed
seven intensive care nurses to obtain their perceptions and experiences of medical
futility. The findings of the study identified that medical futility was not a concept
that could easily be defined and nurses participating in the provision of treatment
16
deemed futile may experience moral distress and frustration (Heland, 2006).
Similarly, in a survey of problems with decision making by critical care nurses, the
continuation of curative treatment when the patient is dying (poor prognosis) was
identified as a major source of dissatisfaction (Bucknall & Thomas, 1997). For some,
the provision of futile treatment is considered inflicting harm on the patient
(Halcomb et al., 2004). Other studies have also captured nurses’ expressions of the
provision of futile treatment through use of emotive terms by participants such as
torturing and flogging the patient (Badger, 2005a; Halcomb et al., 2004; Kirchhoff et
al., 2000; McKeown et al, 2010).
Despite this curative focus, death remains an inevitable part of life. The death of a
patient can be viewed as a professional failure by medical staff in a culture focused
on cure (Beckstrand et al., 2006; Cartwright et al., 1997). Halcomb et al. (2004) also
identified the perception of death as failure by intensive care nurses in the findings of
their study. Perceived professional failure following the death of a patient and the
provision of futile care have been identified as possibly contributing to stress and
burnout among critical care nurses (Badger, 2005a; Borbasi et al., 2005; Cartwright
et al., 1997; Davidson et al., 2002; Halcomb et al., 2004; Heland, 2006).
Qualitative studies undertaken in Australia have reported the exclusion of nurses
from decision making related to withdrawal of life-sustaining treatment (Halcomb et
al., 2004) and in some units, unilateral decision making by medical staff (Heland,
2006). Nurses who are experienced and able to clearly articulate their thoughts are
more likely to contribute to the decision-making process (Heland, 2006). Despite a
general lack of participation in the decision-making process, when a decision is made
to withdraw or withhold life-sustaining treatment, critical care nurses report that they
are left to manage the withdrawal of treatment and care of the patient at the end of
life (Halcomb et al., 2004; Heland, 2006). These perceptions are supported by the
findings of a survey of critical care nurses in the United States in which 45% of
participants identified that doctors were rarely or never present at the patient’s
bedside during treatment withdrawal and 30.3% of participants identified that doctors
were sometimes present (Kirchhoff & Kowalkski, 2010).
17
2.4.2 The physical environment
The physical environment of the practice setting is important to the delivery of
nursing care. The provision of end-of-life care in non-palliative care settings such as
acute medical and cardiac wards has been identified as being difficult (Nordgren &
Olsson, 2004; Wotton et al., 2005), as these settings are designed to support the care
of acutely ill rather than dying patients. Generally, the physical environment of
critical care units is designed to be open plan to permit the observation of critically ill
patients and improve staff access (Bloomer et al., in press). Critical care units are
noisy environments with constant activity. The health care team and ancillary staff,
the provision of patient care and technological interventions utilised in monitoring
and treating critically ill patients are some of the factors that contribute to noise
(Christenson, 2007; Monsen & Edell-Gustafsson, 2005) and activity levels.
Several studies have identified lack of space and privacy as barriers to end-of-life
care by nurses in acute and critical care settings (Bloomer et al., in press; Borbasi et
al., 2005; Calvin et al., 2009; Fridh et al., 2009; Jackson, Purkis, Burnham, Hundt, &
Blaxter, 2010; McKeown et al., 2010; Thompson et al., 2006). The care of a dying
patient in a single room has been identified as important in maintaining patient
dignity, providing privacy for the patient and the patient’s family and allowing
unrestricted visiting. However, placing patients in a single room can isolate them
from nursing staff and pose a barrier to nurses being with dying patients (Davidson et
al., 2003). The availability of facilities for use by the family, such as a quiet room to
congregate, has also been identified as important (Kirchhoff et al., 2000), yet these
facilities are often lacking in critical care units (Bloomer et al., in press). In addition,
previous Australian research has identified that non-palliative care areas lack
appropriate physical resources such as specialised mattresses and pillows, to provide
optimal care for dying patients (Davidson et al., 2003).
18
2.4.3 Staffing
Staffing is another aspect of the practice context that is unique in the critical care
setting. High nurse-to-patient ratios exist in critical care settings in Australia. These
patient-care ratios are supported by position statements from both the Australian
College of Critical Care Nurses (ACCCN, 2003) and the Joint Faculty of Intensive
Care Medicine (JFICM, 2003) that outline that ventilated patients require a nurse-to-
patient ratio of 1:1 and patients classified as high dependency are cared for in a 1:2
nurse-to-patient ratio. These high nurse-to-patient ratios provide a staffing
environment in critical care in which patients at the end of life and their families can
receive comprehensive care and support (Campbell, 2006; McKeown et al., 2010).
Lack of staff and time constraints have been identified as barriers to end-of-life care
in acute and critical care settings (Beckstrand et al., 2006; Thompson et al., 2006). In
acute medical wards, lack of staff can compromise nurse-patient ratios if patients that
are dying are not afforded the usual staffing ratio (Thompson et al., 2006). Ciccarello
(2003) recommends that quality care of a dying patient requires a full-time nurse and
warns against nurse managers allocating care of the dying patient last, based on the
belief that they require little care. Other authors support this view, highlighting that
palliative care is not implemented when ‘nothing more can be done’ (Thelan, 2005,
p. 34), but requires extensive nursing care focused on the holistic needs of patients
and their families (Davidson et al., 2002; Rushton, Williams, & Sabatier, 2002;
Thelan, 2005).
Although staffing levels in critical care are supported by position statements, critical
care units in Australia are experiencing nursing staff shortages and poor retention of
experienced nurses (Ogle et al., 2004; Morrison, Beckmann, Durie, Carless, &
Gillies, 2001). The staffing skill mix can result in the allocation of casual or junior
nurses to care for the dying patient while experienced nurses are allocated care of
critically ill patients (Beckstrand et al., 2006). This allocation could be influenced by
the curative culture of critical care with care of the patient at the end of life provided
by a junior nurse to enable experienced critical care nurses to focus on the care of
patients whose lives could be saved.
19
2.5 End-of-life care in the critical care setting—Evidence
Although some nurses equate evidence with research (Rycroft-Malone, Harvey, et
al., 2004), within the PARIHS framework, the evidence element is broadly defined to
include all types of evidence that inform clinical practice, including research
evidence derived from scientific studies, clinicians’ practice knowledge and the
patient’s experience and preferences (Rycroft-Malone, Seers, et al., 2004). Evidence
drawn from these different sources can be conflicting and it is important that
evidence be critically appraised prior to changing or implementing the evidence in
practice (Rycroft-Malone, Seers, et al., 2004). Research evidence, nurse practice
knowledge and patient and family preferences are sources of evidence that inform
critical care nurses’ end-of-life care practices.
2.5.1 Research
Guidelines and policies developed from research evidence or expert opinion are
important in maintaining minimum standards and providing guidance for clinical
practice. The ANZICS (2003) position statement on withholding and withdrawing
treatment, the NSW Department of Health’s (2005) Guidelines for End-of-Life Care
and Decision Making and Palliative Care Australia’s (2005) Standards for Providing
Quality Palliative Care for all Australians are three documents that provide guidance
for critical care nurses regarding end-of-life decision making and the provision of
end-of-life care. Although the ANZICS position statement is specific to the intensive
care setting, it only provides broad statements around the withdrawal and
withholding of treatment and does not specifically address the role of the critical care
nurse or provide guidance for the management of a patient at the end of life. The
NSW Department of Health Guidelines and the Palliative Care Australia standards
are broad high-level standards developed to guide end-of-life decision making and
end-of-life care across community and acute settings. In addition, the Australian
Government National Health and Hospitals Reform Commission (2009) provides
broad recommendations regarding end-of-life care, supporting the provision of end-
of-life care, including specialist palliative care across all care settings. Thus, end-of-
20
life care needs to be available where people need it. Critical care is a unique practice
context and further specific guidance, including best practice guidelines and policies,
to support the provision of end-of-life care in critical care settings is required
(Davidson et al., 2002; Halcomb et al., 2004).
From an organisational perspective, the development of policies and guidelines that
are contextually relevant at a local level are also important in maintaining minimum
standards and improving the quality of care provided. Policies and guidelines can
assist clinicians by providing prompts or cues for their practice. In two separate
interventional studies that utilised a standardised order form to guide end-of-life care,
nurses reported satisfaction with the form in guiding their practice, although no
change in the quality of end-of-life care was identified in the findings (Hall et al.,
2004; Treece et al., 2004).
Previous research has identified lack of guidelines as a barrier to providing end-of-
life care (Nordgren & Olsson, 2004). In a study undertaken in 15 ICUs in North
America, all policies, protocols, guidelines, standing orders and forms for
documenting end-of-life care were analysed to identify content and how they could
be altered to improve the quality of end-of-life care (Clarke et al., 2004). Clarke et al.
(2004) found that the content of most documents was related to symptom
management and comfort care and few documents considered patient and family
decision making, communication, emotional support or spiritual support. In a recent
survey of a random sample of critical care nurses undertaken in the United States, no
use of clinical practice guidelines was reported by participants (Kirchhoff &
Kowalkowski, 2010).
2.5.2 Nurse practice knowledge
The Australian Council of Healthcare Standards Guidelines for Intensive Care Units
(ACHS, 1997) state that a minimum of 50% of registered nurses employed in an ICU
21
should have postgraduate critical care qualifications. The ACCCN (2003) advocate
that 75% of nurses with qualifications is ideal. Although the majority of nurses
employed in critical care units hold postgraduate qualifications, knowledge of end-
of-life care can be limited. Campbell (2002) argues that, despite the frequency with
which nurses in critical care units provide care for patients at the end of life, critical
care courses maintain a curative focus and end-of-life content, including comfort
care of the dying patient, is largely absent. This view is supported by a content
analysis of graduate nursing education curricula in the United States that identified a
lack of end-of-life care and/or palliative care content in graduate programmes (Paice
et al., 2006). Paice et al. (2006) suggest that lack of content of end-of-life care in
graduate programmes affects the quality of end-of-life care. Although specific
research has not been undertaken in Australia in regard to end-of-life care content in
postgraduate critical care curricula, a study of critical care courses provided in higher
education institutions in Australia identified inconsistencies in course content (both
practical and theoretical) (Aitken, Currey, Marshall, & Elliott, 2006).
In addition to postgraduate education, continuing professional development and
critical care textbooks are key resources used by critical care nurses to enhance their
knowledge base (Kirchhoff et al., 2003; Paice et al., 2006). Continuing professional
development opportunities in critical care settings focus on curative interventions
and lack end-of-life content. Kirchhoff and Kowalkowski (2010) reported that only
33.8% of critical care nurses that responded to their survey identified content related
to withdrawal of life-sustaining treatment in their critical care unit orientation
program and 44% of respondents reported attendance at in-service related to
withdrawal of life-sustaining treatment.
A content analysis of critical care nursing texts using the American Association of
Colleges of Nursing (AACN) end-of-life content areas as a framework revealed that
end-of-life care content was also lacking in texts (Kirchhoff et al., 2003). Ethical and
legal issues, brain death and organ donation were content most commonly covered in
texts; however, less than half of the 14 texts reviewed covered these topics. Three of
the texts reviewed did not include any content related to end-of-life care. Similarly,
in the ACCCN’s Critical Care Nursing textbook (Elliott, Aitken, & Chaboyer, 2012)
apart from an organ donation chapter, end-of-life care content is limited to just a few
22
pages that provide a broad overview of key issues in end-of-life care for the patient,
family and nurse and a discussion of end-of-life decision making. The lack of content
in regard to end-of-life care reflects the dominance of the medical discourse and
curative focus of critical care and can influence critical care nurses’ end-of-life care
knowledge and associated practices.
Nurses can also draw on their personal knowledge and experience to inform their
practice. Several studies have identified that nurses learn through personal
experience in the provision of end-of-life care (Fridh et al., 2009; Zomorodi & Lynn,
2010b). Beckstrand and Kirchhoff (2005) reported that nurses draw on their own
personal experiences of death and dying of a family member or friend to inform their
practice. Others studies have identified a lack of experience in caring for patients at
the end of life and a lack of knowledge as barriers to end-of-life care (Davidson et
al., 2003; Nordgren & Olsson, 2004; Rodriguez, Barnato, & Arnold, 2007;
Thompson et al., 2006).
2.5.3 Patient and family preferences
Patient (and family) preferences should be considered when reviewing evidence to
inform practice in the clinical setting (Kitson et al., 1998). Although the patient’s
preference is considered important evidence informing practice, it can be difficult to
ascertain the preferences of critically ill patients due to cognitive impairment as a
result of illness, injury or medical management. In these circumstances, the health
care team seeks an understanding of the patient’s potential view, as expressed by the
patient’s next of kin or significant other (ANZICS, 2003). Once consensus is reached
among the medical team to withhold or withdraw treatment, agreement of the next of
kin or legal authority is sought (ANZICS, 2003). Although the burden of end-of-life
decision making should not rest with the family, some participants in Halcomb et
al.’s (2004) study perceived that families are sometimes over involved in decision
making and feel responsible for any decisions made.
23
Several studies have identified that families misunderstand the meaning of the
patient’s illness (Badger, 2005b) and life-support/life-saving measures (Beckstrand
& Kirchhoff, 2005; Kirchhoff & Beckstrand, 2000). In addition, lack of acceptance
of a patient’s prognosis by family members and family requesting additional
treatment despite the patient’s wishes pose barriers to end-of-life care. It has been
suggested that keeping families informed of the patient’s condition, treatment plan
and possible outcomes of treatment options facilitates transition to end-of-life care
(Badger, 2005b; Borbasi et al., 2005; Norton, Tilden, Tolle, Nelson, & Eggman,
2003).
The concept of timing in relation to withdrawal of life-sustaining treatment and the
family’s preferences and experience has also been noted in the literature (Calvin et
al., 2009; Fridh et al., 2009; Heland, 2006; Jones & Fitzgerald, 1998; Seymour,
2001) Previous research suggests that implementation of withdrawal of life-
sustaining treatment and the subsequent death of the patient can be delayed to enable
family to accept the situation and/or relatives to gather at the patient’s bedside
(Calvin et al., 2009; Fridh et al., 2009; Heland, 2006). However, this practice can
subject the patient to prolonged and unnecessary suffering and place burden on finite
critical care resources (Burns et al., 2011; Crump et al., 2010).
2.6 End-of-life care in the critical care setting—Facilitation
Facilitation within the PARIHS framework is narrowly defined as ‘a technique by
which one person makes things easier for others’ (Rycroft-Malone et al., 2002, p.
177). This definition focuses on the role of one person, an appointed facilitator, in
supporting others to change practice through processes of ‘enabling and helping
rather than telling or persuading’ (Harvey et al., 2002, p. 585). Helfrich et al. (2010)
identifies that the limitation of this definition of facilitation is that it does not capture
other possible facilitators of practice change, including interventions that may
support implementation of a specified practice. In a conceptual analysis of the
element facilitation, Harvey et al. (2002) found varied descriptions and uses of the
term facilitation in the existing health literature. For the purpose of the current study,
24
facilitation was more broadly defined as the process of making things easier. The
transition from curative to comfort-only care and the provision of end-of-life care in
the critical care setting may be facilitated by the emotional support provided to the
critical care nurse, the beliefs and values of the nurse and factors influencing the
coordination of care delivery.
2.6.1 Emotional support for nurses
Nurses in critical care units are frequently exposed to human suffering and death not
experienced in other workplaces. Previous research has identified coping strategies
used by critical care nurses (Badger, 2005a; Espinosa et al., 2010). In a recent study
involving interviews with eight critical care nurses, Shorter and Stayt (2010)
identified that critical care nurses were complacent towards death and they suggest
that this may be a coping strategy for these nurses. Alternatively, nurses who are not
comfortable with the provision of end-of-life care can cope by focusing on technical
aspects of care, avoiding interpersonal interaction and compromising the care
provided to the patients and their families (Badger, 2005a; McClement & Degner,
1995; Shorter & Stayt, 2010). For a nurse to be there for patients at the end of life
and their families, they need to feel comfortable with being there themselves
(Thompson et al., 2006).
The provision of end-of-life care in critical care units can contribute to stress and
burnout among critical care nurses (Shorter & Stayt, 2010). In addition to personal
coping strategies, critical care nurses can seek emotional support from informal and
formal support mechanisms in the workplace. Several studies have identified that
critical care nurses draw on informal support provided by their colleagues (Halcomb
et al., 2004; Jones & Fitzgerald, 1998; Kirchhoff et al., 2000; McClement & Degner,
1995; Shorter & Stayt, 2010), rather than formal support such as debriefing
(Halcomb et al., 2004; Jones & Fitzgerald, 1998). A national survey of critical care
nurses undertaken in the United States found that counselling and debriefing rarely
(38%) or never (49%) occurred (Puntillo et al., 2001). Identification and
implementation of strategies to support nurses are required to maintain quality care
25
for patients and their families and to minimise stress and eliminate burnout among
critical care nurses (Davidson et al., 2002).
2.6.2 Nurses’ end-of-life care values and beliefs
Nelson (2006) identified that personal attitudes and behaviours are the most
important barriers to end-of-life care and also the most difficult to change. Nurses’
values and beliefs could be influenced by the dominant medical discourse and
curative culture of critical care, as well as their personal knowledge and past
experiences (Nelson, 2006). The values and beliefs of critical care nurses influence
the facilitation of end-of-life care and nurses’ engagement in select practices. Two
alternate views of end-of-life care in critical care settings have been identified in the
current literature. Some critical care nurses share the perception of death as failure
and this perception could pose as a barrier to end-of-life care (Beckstrand et al.,
2006). Previous research has also identified that some critical care nurses view the
provision of care to patients at the end of life and their families as a privilege
(Calvin, Kite-Powell, & Hickey, 2007; Fridh et al., 2009; Vanderspank-Wright et al.,
2011). Strategies targeted at changing personal attitudes rather than the broader
organisational culture may be more effective in reducing barriers and improving the
provision of end-of-life care in critical care settings (Nelson, 2006).
2.6.3 Coordination of care delivery
Issues related to the coordination of care delivery are pertinent to the care of patients
at the end of life and their families in critical care. Previous research has identified
lack of communication in relation to prognosis, lack of information and conflicting
information from different health care providers as sources of dissatisfaction for the
families of patients dying in hospital (Rogers, Karlsen, & Addington-Hall, 2000).
Poor communication and lack of consensus have also been identified as barriers to
end-of-life care in research undertaken in critical care settings (Espinosa et al., 2010;
Vanderspank-Wright et al., 2011).
26
Fragmented care delivery occurs as a result of the critical care team, the patient’s
primary medical team, nurses and allied health care providers independently
reviewing the patient and outlining a treatment plan. The consistency of information
provided to the family can also be threatened by the number of care providers
involved in the care of a critically ill patient (Nelson & Meier, 1999). Lack of
consensus around treatment goals and the provision of different information from
different care providers can create distress for the family (Nelson, 2006) and the
critical care nurse (Vanderspank-Wright et al., 2011). Previous research suggests that
the medical team withdraw their involvement with the patient following a decision to
withdraw life-sustaining treatment (Halcomb et al., 2004; Heland, 2006), indicating
that the provision of care to the patient at the end of life is delivered by critical care
nurses with limited input from the medical team.
In addition to the coordination of care by bedside critical care nurses and the health
care team, the inclusion of palliative care experts and consults within critical care
units can assist in facilitating the provision of optimal care for dying patients. In one
study that compared the care of a retrospective cohort of patients who died in an ICU
with a cohort of patients following the inclusion of palliative care consults and
palliative care strategies when treatment goals change to comfort only, the length of
time before the implementation of comfort care following identification of poor
prognosis, the length of hospital stay and the cost of care was reduced (Campbell &
Guzman, 2003). Although this study only considered patients with global cerebral
ischemia and multi-organ system failure, it provides some support for the active
implementation of an end-of-life care strategy to improve the quality of care for
patients at the end of life in critical care. Other papers have described the use of
training of intensive care nurses as end-of-life care opinion leaders to act as role
models and promote changes in end-of-life care attitudes (Treece et al., 2006) and the
inclusion of palliative care specialists on intensive care ward rounds to provide
consultation and initiate end-of-life care conversations (Billings et al., 2006). No
evaluation data of these interventions is provided in these papers (Billings et al.,
2006; Treece et al., 2006).
27
2.7 Summary
The domains of end-of-life care practice identified by Clarke et al. (2003) provides a
framework for identifying and describing the practices of critical care nurses in the
provision of care to patients at the end of life and their families. The key elements of
the PARIHS framework—context, evidence and facilitation—provide an overarching
framework to examine the factors that influence the provision of end-of-life care in
critical care settings. Identification of current practice and the factors influencing the
provision of end-of-life care provides a platform for practice development to improve
the care that patients and their families receive and support nurses in the provision of
this care. The current study aims to (1) identify the end-of-life care practices of
Australian critical care nurses, (2) identify the factors influencing the provision of
end-of-life care, and (3) identify the factors associated with specific end-of-life care
practices of Australian critical care nurses. The next chapter provides a description of
the methodology for the study.
28
3 METHODOLOGY
3.1 Introduction
A mixed methods approach was used for the current study. This chapter will define
mixed methods research and discuss key strengths and criticisms of the mixed
methods approach. A three-phase exploratory sequential mixed methods design will
be introduced as the design selected for the current study. Ethical considerations
pertaining to this study will then be discussed.
3.2 Mixed methods
The mixed methods approach has gained prominence as the third methodological
approach, alongside the traditional qualitative and quantitative research approaches
(Johnson & Onwuegbuzie, 2004; Johnson, Onwuegbuzie, & Turner, 2007).
Proponents of the mixed methods approach do not consider it a replacement, but
rather an approach that complements the traditional qualitative and quantitative
approaches (Johnson & Onwuegbuzie, 2004). All three research approaches are
considered valuable in answering different research questions in different
circumstances and contexts (Johnson et al., 2007).
Following analysis of 19 definitions provided by leading scholars in mixed methods,
Johnson et al. (2007) broadly defined mixed methods research as:
the type of research in which a researcher or team of researchers combined
elements of qualitative and quantitative research approaches (eg. Use of
qualitative and quantitative viewpoints, data collection, analysis, inference
techniques) for the broad purposes of breadth and depth of understanding and
corroboration. (p. 123)
As identified in Johnson et al.’s (2007) definition, a mixed methods study includes
both qualitative and quantitative research strands that are combined or mixed in some
29
way. The rationale for using a mixed methods approach is that the strengths of both
qualitative and quantitative research approaches complement each other and, when
combined in a single research study, a comprehensive investigation of an area of
interest can be undertaken (Creswell & Plano Clark, 2011). Specifically, in a mixed
methods approach, both exploratory and interpretative research can be undertaken in
a single study. This is advantageous in multidimensional complex areas of research
interest, such as those that arise in nursing practice (Tashakkori & Teddlie, 2010).
Traditionally, qualitative research approaches acknowledge that multiple realities
exist and explore phenomena of interest in depth using small non-probability
samples, limiting the ability to generalise findings. In contrast, quantitative research
approaches employ larger samples to test hypotheses and causal relationships,
allowing generalisability of the findings. The mixed methods approach values both
subjective and objective knowing. The transferability of knowledge generated is not
limited by the methods used, but by consideration and appropriate use of the findings
in relevant situations (Morgan, 2007). In addition, consideration of areas of
convergence and divergence between the qualitative and quantitative findings can
provide further insight into the area of research under investigation (Teddlie &
Tashakkori, 2010).
While the quantitative research approach dominated much of the 20th century,
during the so-called paradigm wars of the 1980s and 1990s, there was renewed
attention to the place and value of the qualitative research approach to social science.
Key proponents of the value of the qualitative research approach aligned their
arguments with the philosophy of knowledge to provide credence and strength (see
Morgan, 2007). Criticism of the mixed methods approach stems largely from the
view that the philosophical assumptions underpinning the qualitative and quantitative
research approaches are incompatible and, thus, it is inappropriate to mix qualitative
and quantitative research methods.
Morgan (2007) states that the incompatibility of methods thesis ‘fails at every level
except for debates about the nature of reality and truth’ (p. 64). The mixed methods
scholarly community has rejected this incompatibility of methods thesis, instead
arguing for methodological eclecticism (Teddlie & Tashakkori, 2010). Teddlie and
30
Tashakkori (2010) define methodological eclecticism as ‘selecting and
synergistically integrating the most appropriate techniques from a myriad of
qualitative, quantitative and mixed strategies to more thoroughly investigate a
phenomenon of interest’ (p. 8). The research purpose or research questions are of
central importance and the most appropriate methods are selected to achieve the
research purpose or answer the research questions (Johnson & Onwuegbuzie, 2004),
as opposed to a mono-methodological approach and adherence to methods
traditionally associated with these approaches.
The mixed methods research approach requires the researcher to have knowledge and
skills in both qualitative and quantitative research methods. Although this can
present a challenge, those that engage in this work can become ‘methodological
connoisseurs’ and have a broader range of knowledge and skills in research methods
that can then be utilised to select and use the most appropriate methods in future
research projects (Tashakkori & Teddlie, 2010, p. 275; Teddlie & Tashakkori, 2010).
Several authors have developed mixed methods research design typologies to assist
researchers to select and combine the most appropriate methods to address their
research purpose and questions (see Creswell & Plano Clark, 2011; Johnson &
Onwuegbuzie, 2004). Mixed methods research designs vary in their timing, weighing
and mixing of qualitative and quantitative approaches (Creswell & Plano Clark,
2011). Specifically, a three-phase exploratory sequential mixed methods design was
utilised in this study (see Figure 3–1). In exploratory sequential designs, timing is
sequential with one methodological strand undertaken, followed by another, and the
strands are unequally weighed with one approach receiving a greater emphasis
(Creswell & Plano Clark, 2011). In the current study, a qualitative approach was
used first, followed by a quantitative approach, with a larger focus placed on the
quantitative approach.
31
Figure 3-1: Three-phase exploratory sequential mixed methods design (adapted
from Creswell & Plano Clark, 2007)
Phase 1 Phase 2 Phase 3
The mixing of the qualitative and quantitative research strands, termed the point of
interface, in exploratory sequential mixed methods designs occurs when the two
approaches are connected with the analysis of the findings from one strand informing
the development of the next strand (Creswell & Plano Clark, 2011). The point of
interface occurs in phase two of the current study, when the findings of phase one
(the qualitative strand) inform the development of a survey instrument for use in
phase three, the quantitative strand.
As previously identified, limited research has been undertaken to identify and
describe the practices of critical care nurses providing end-of-life care to patients and
their families and, therefore, a qualitative approach is appropriate for exploring this
phenomenon. Phase one of this study involved individual interviews with a small
convenience sample of critical care nurses from a single critical care setting to
explore their end-of-life care experiences and practices. The point of interface
between the qualitative and quantitative research strands in this study occurred in
phase two of this study, when the findings of phase one, combined with a review of
the literature, informed the development of the content of the survey instrument, for
use in phase three of this study (the quantitative strand). In addition to developing the
survey instrument, phase two of this study included a review of the survey
instrument by an expert panel and a pilot test of the survey instrument with a
convenience sample of critical care nurses. The findings of phase two provided
preliminary evidence of the reliability and validity of the survey instrument. The
survey instrument was then used in the larger quantitative phase of this study—phase
32
three—to conduct a national survey of critical care nurses to answer the three
research questions posed in this study. Analysis of participant responses to the survey
in phase three identified the frequency of practices undertaken in the provision of
end-of-life care, critical care nurses’ level of agreement with factors influencing the
provision of end-of-life care and the factors associated with specific end-of-life care
practice areas.
3.3 Ethical considerations
This study used humans as participants. Care was required in the planning and
conduct of the study to maximise the benefits of the study and minimise any
potential risks (National Health and Medical Research Council [NHMRC], 2007b).
Ethical considerations specific to this study include consent, anonymity and
confidentiality, the pre-existing relationship between the pilot test participants and
the associate supervisor, security of data and dissemination of findings. Potential
participants in this study were informed about the requirements of participation,
expected benefits and risks. Participants in phase one had an opportunity to ask
questions prior to signing a consent form to indicate that they were informed about
the study and had voluntarily agreed to participate (NHMRC, 2007b). In phases two
and three, submission of the completed survey implied consent.
Participants were assured anonymity and confidentiality. Consistent with NHMRC
guidelines (2007b), identifying information within the data was deleted from the data
set. The survey maintained the participants’ anonymity by not requesting their name
or contact details. Some demographic information was collected and, although
unlikely, this could result in a response to a survey in which a participant may be
individually identified (NHMRC, 2007b). If a response could potentially identify a
participant, this information was withheld from publication of the results of this
study. Pilot test participants in phase two of this study were recruited from a
postgraduate nursing subject at an Australian university. Although the researcher
does not have an existing relationship with the participants, the associate supervisor
of this PhD study is the course convener for postgraduate nursing students enrolled in
33
this subject. Participant confidentiality was maintained by restricting access to data
sets that identify participants and their responses to the researcher.
Research data is stored in a locked filing cabinet and will be retained for a period of
five years following submission of the results for publication (NHMRC, 2007a).
Electronic files are stored on a password-protected computer. Stored data is
periodically checked to ensure integrity and access to data is limited to the researcher
and supervisory team. The findings of this study have and will be disseminated to the
profession through conference presentations and publications in peer-reviewed
nursing and critical care journals. In addition, some participants voluntarily provided
contact details to the researcher and requested copies of findings as they are
published. Personal emails will be sent to these participants as requested.
Ethical approval to undertake this study was obtained from the Queensland
University of Technology (QUT) Human Research Ethics Committee (see
Appendices 13.1 and 13.2). In addition, ethical approval from the ACT Health
Human Research Ethics Committee was obtained for phase one of this study (see
Appendix 13.3) and the ACCCN agreed to support phase three of this study. A copy
of an email from the ACCCN secretary indicating support for this study is attached
(see Appendix 13.4).
3.4 Summary
A mixed methods approach using a three-phase exploratory sequential design was
utilised in this study. This chapter has provided a broad overview of this
methodological approach and the ethical considerations relevant to the current study.
Subsequent chapters address the methods used in each phase of this mixed methods
study.
34
4 PHASE ONE METHODS
4.1 Introduction
The first phase of this mixed methods study employed a qualitative research
approach. The research question guiding this phase of the current study was: What is
the experience of end-of-life care as described by critical care nurses? In answering
this question, the experiences and practices of critical care nurses in the provision of
end-of-life care were identified. As noted in the previous chapter, the purpose of this
phase was to explore dimensions of critical care nurses’ end-of-life care experiences
and practices, to assist with development of content for a survey instrument to be
used in later stages of the study. This chapter will outline the methods used in phase
one of the current study including the study setting, participants, method of data
collection, procedure and data management and analysis.
4.2 The setting
A 500-bed tertiary level referral centre and teaching hospital, providing health care
services to a population of approximately 500,000 in one Australian city and
surrounding region, provided the setting for phase one of this study. This hospital has
a 22-bed general ICU, providing intensive care services to medical and surgical
patients (Drennan et al., 2010). The unit includes two cardiothoracic surgery beds
and provides intensive care services to paediatric patients. Patients requiring high
dependency services are cared for in the unit, while coronary care services are
provided in a separate unit of the hospital.
The Joint Faculty of Intensive Care Medicine (JFICM, 2003) provides definitions of
standards required by ICUs for accreditation. Three levels of intensive care services
are identified by these standards with level three facilities providing the highest level
of critical care ‘including complex multisystem life support for an indefinite period’
(JFICM, 2003, p. 1). Patient care in a level three ICU is managed by an intensive
care specialist and level three units contribute to education and research (JFICM,
35
2003). The ICU that provided the setting for phase one of the current study was
classified as a tertiary level three intensive care facility.
4.3 Participants
In January 2009, the ICU that provided the setting for phase one of this study
employed approximately 60 full-time equivalent (FTE) registered nurses (J. Rochow,
personal communication, November 20, 2009). The unit employs both generalist
registered nurses, including new graduate nurses, and registered nurses who have
completed postgraduate education in intensive care or critical care nursing. There
were no enrolled nurses employed in a clinical position within the unit. This phase of
the study aimed to include experiences of both junior and senior nurses. During
recruitment of potential participants, it was acknowledged that the researcher was
interested in ascertaining the experiences and practices of both junior and senior
nurses. A purposive sampling technique was used to select a small sample of critical
care nurses employed in the ICU in the study setting to participate in an individual
semi-structured interview to discuss their experiences of providing end-of-life care in
the ICU.
4.4 Method of data collection
A semi-structured interview format was chosen to provide junior and senior nursing
staff privacy to openly share their personal experiences of providing end-of-life care
to patients in the ICU. Semi-structured interviews allow interviewees the opportunity
to freely share their experiences, providing rich in-depth accounts (Fontana & Frey,
2005; Silverman, 2006). Based on the assumption that participants will provide an
unbiased and truthful account (Fontana & Frey, 2005) of their end-of-life care
experiences, semi-structured interviews allow participants to talk freely and deeply
about their personal experiences and practices. Death and dying is an emotive topic,
and this topic can be sensitive for participants sharing their experiences and
discussing their practices.
36
4.5 Procedure
Participants were recruited via a presentation at a nursing staff meeting. The
presentation provided information about the study and the requirements of
participation. At the end of the presentation, seven registered nurses placed their
name and contact details on an expression of interest form. Three of these registered
nurses participated in an individual interview. A bulletin board advertisement (see
Appendix 13.5) was posted in the staff tearoom, the staff communication book and
on the research noticeboard in the main corridor of the unit. After seeing these
advertisements, two registered nurses contacted the researcher to express interest in
participating in the research study and were subsequently interviewed. A study
information sheet was also distributed to potential participants. The information sheet
outlined the purpose of the study, the potential benefits of the study to the
contribution of nursing knowledge of end-of-life care in critical care units and the
requirements of participation (see Appendix 13.6).
Qualitative methods typically employ small samples of participants, for the purpose
of obtaining in-depth exploration of a phenomenon of interest. After five individual
interviews, a number of key themes had emerged related to end-of-life experiences
and practices of intensive care nurses with varying levels of experience and
qualifications. While no claim is made that data saturation occurred with this small
sample, the insight gained from the interviews was consistent with themes identified
from the literature review relating to these issues. Given this convergence, the data
generated from the five participants was considered sufficient for the purpose of
phase one of the current study.
Fontana and Frey (2005) summarise elements of interviewing that interviewers must
consider, including how to present themselves and establish rapport and trust with
the interviewees. In this study, each interview began with the researcher thanking the
participant for agreeing to be interviewed and identifying that the interview was
being undertaken as a component of a PhD research study. The study was briefly
described, including its aims and potential contribution to nursing practice and
patient care. The participant was then asked to briefly summarise his or her nursing
education and employment history. This provided the researcher with information
37
regarding the participant’s nursing background and acted as an icebreaker to
encourage the participant to feel comfortable and talk openly. The participant was
then asked to describe a recent or significant experience of caring for an adult patient
at the end of life following a decision to withdraw or withhold life-sustaining
treatment. The role of the researcher as the interviewer was to actively listen to the
participant’s narrative and clarify or explore participant responses as required. The
interviewer is considered an active participant in the interview, providing verbal cues
such as mm, oh, huh and non-verbal nodding, smiling and frowning to encourage the
participant to talk and expand on his or her experiences and stories (Silverman,
2006). When necessary, additional open-ended questions were asked of the
participant, such as: What do you think is important in caring for patients at the end
of life? What assists you to provide end-of-life care? What barriers or difficulties
have you experienced when providing end-of-life care?
Interviews were conducted in a room in the ICU that ensured privacy and was free
from interruptions. In one instance, an interview was conducted in the home of a
participant at the participant’s request. Approval from the director of nursing was
provided to allow participants to attend the interview during work time. Interviews
ranged in length from 13 to 72 minutes (mean 41 minutes). A digital voice recorder
was used to record each interview to enable a verbatim transcription of the discussion
to be produced and permit the researcher to return to the discussion at a later time.
4.6 Data management and analysis
Immediately following each interview, the digital voice recording was sent to a
professional transcription agency for conversion into a word document. The
transcription from each interview was read while concurrently listening to the digital
record of the interview to first verify the accuracy and reliability of the transcription
as a written record and, secondly, to permit the researcher to return to the discussion
and recapture the intent of the written text conveyed through the participant’s verbal
expression (Silverman, 2006). Emphasis or intonations as expressed by the
participant were added to the transcription if they were considered to provide
38
important contextual data to the written record. Each transcript was reread until the
researcher felt familiar with the text.
In their handbook of qualitative data analysis, Miles and Huberman (1994) identify
data analysis as consisting of three concurrent activities: data reduction, data display
and conclusion drawing/verification. In the current study, data reduction proceeded
using a manual inductive coding approach, as described by Miles and Huberman
(1994). Each transcript was reread and labels of one to two words were placed in the
margin of the transcript to identify ideas and/or concepts of interest. Margin labels
were reviewed and segments of text containing similar ideas and concepts were
copied and pasted together into a new Word document to create a data display (Miles
& Huberman, 1994). Each group was named using one to two words that capture the
essence of the content. These groups formed the preliminary categories.
The data display of content of each preliminary category was reviewed to ensure best
fit of content (Miles & Huberman, 1994). Groups containing similar content were
combined to create major categories and, when appropriate, subcategories were
identified within the major categories. The content of each category was then
reviewed again and key quotes that exemplify the category were identified.
Check-coding, as described by Miles and Huberman (1994), during the initial coding
of the transcripts was undertaken. Three of the interview transcripts were
independently read and coded by the researcher and supervisory team. Inter-coder
agreement was achieved between the researcher and study supervisors following
comparison, discussion and debate of the codes. During data analysis, the key
research questions and aims of phase one of the current study were reviewed to assist
in conclusion drawing. The researcher interpreted the findings by reflecting upon the
data and categories identified in relation to the study aims and research questions.
Claims about the data were made and supported by exemplars and quotations. In
addition, a data display consisting of a matrix comparing the key domains of end-of-
life care practice and the factors influencing the provision of end-of-life care
identified in the literature review with the findings from the phase one interviews
was created. The findings of phase one were presented at a nursing in-service in the
study setting to enable further verification of the study findings. Nurses present
39
during the in-service agreed that the findings generally reflected their own
experiences and practices of end-of-life care, providing further confirmation of the
categories developed during data analysis.
4.7 Summary
The purpose of phase one of this study was to obtain insight into the end-of-life care
experiences and practices of critical care nurses. Phase one utilised a qualitative
approach to interview a small convenience sample of critical care nurses from a
single ICU to achieve this purpose. The findings of the analysis of interview data are
presented in the next chapter.
40
5 PHASE ONE FINDINGS
5.1 Introduction
This chapter will briefly describe the characteristics of the registered nurses who
participated in phase one of the current study, completing an individual interview
with the researcher. The categories and subcategories identified from the interview
data will then be described. Excerpts from the interview transcripts are included as
exemplars to support the categories and subcategories identified.
5.2 Participant characteristics
Five female registered nurses participated in phase one of the current study. The
participants included both senior and junior members of nursing staff. Table 5–1
outlines the number of years that each participant had been a registered nurse and the
number of years that they had worked in an ICU. Three participants had completed
formal postgraduate qualifications (either graduate certificate or graduate diploma) in
intensive or critical care nursing.
Table 5-1: Phase one participant characteristics
Participant Years as a
nurse
Years as an ICU
nurse
Postgraduate
qualifications
1 5 3 No
2 25 15 Yes
3 6 3 Yes
4 29 22 Yes
5 3 2 No
Note. ICU = intensive care unit.
41
Participants in this phase of the current study were asked to discuss their experiences
of caring for a patient after a decision to withdraw or withhold treatment had been
made. It is acknowledged that practice is complex and multidimensional in nature;
however, due to constraints of the spoken and written word, this account of care of a
patient at the end of life, at times, appears linear. In addition, excerpts used to
provide evidence of a category or subcategory may also provide evidence of other
categories or subcategories. This is reflective of the interrelationships that exist
between the categories and subcategories developed from the interview data. Three
major categories were identified: Beliefs about end-of-life care, end-of-life care in
the intensive care context and facilitating end-of-life care (see Table 5–2).
Table 5-2: Categories and subcategories developed from phase one interview
data
Category Subcategory
Beliefs about end-of-life care Value of participating in end-of-life care
Complexity of end-of-life care
End-of-life care in the intensive care
context
Organisational support
Modifying the bedside environment
Facilitating end-of-life care Uncertainty and ambiguity
Emotional intensity
Providing comfort care
Humanising the patient
Facilitating the family’s experience
5.3 Category: Beliefs about end-of-life care
During the interviews, participants shared their personal beliefs about death and
dying and the provision of end-of-life care in the intensive care setting. In particular,
participants in phase one of this study expressed their beliefs about the value of
participating in end-of-life care and the complexity of end-of-life care. Variation in
42
critical care nurses’ personal beliefs about end-of-life care may influence the care
that is provided to patients and their families.
5.3.1 Value of participating in end-of-life care
The value of participating in end-of-life care was emphasised by participants.
Participants used terms such as privilege and honour to describe how they felt about
the opportunity to care for patients at the end of life and their families.
I think, depending on how you look at it, I guess it’s a little bit of a—it’s kind
of an honour to share that most intimate moment in someone’s life.
(Participant 5)
I’m very aware of the intimate position that we have in people’s lives in these
big, big moments. (Participant 2)
Some participants felt that the value of participating in end-of-life care was not
always recognised by their nursing colleagues. The intensive care setting is
dominated by a curative culture driven by a medical model of practice. The aim of
intensive care is to save lives and loss of life may be viewed as a failure. The
curative culture in addition to the nurse’s beliefs and comfort with spirituality and
death can pose as barriers to engaging in end-of-life care, influencing the care
provided to the patient and the patient’s family.
I think there’s a very strong part of the culture here in ICU that death is
failure. Nurses don’t seem to like looking after dying people, not only
perhaps because they don’t quite know how they feel about death themselves,
but I think also because it’s considered that you don’t need skills to look after
a dying person. I think that it’s quite the contrary. (Participant 2)
43
5.3.2 Complexity of end-of-life care
Participants in phase one of the current study believed that the provision of end-of-
life care is an advanced practice skill. However, participants did not elaborate in
detail about what was involved in the complexity of caring for a patient at the end of
life. Aspects of end-of-life care practice that were identified included interpersonal
skills, assessment skills and knowledge of symptom management.
I’ve seen it allocated to the junior nurses and it’s just, oh well, you just
extubate and then start the morphine or, and it is so much more than that, so
much more. (Participant 1)
Generally, participants in this study considered end-of-life care an advanced practice
skill and that the allocation of nurses inexperienced in the provision of end-of-life
care posed a barrier to the care provided. However, confidence and skill in the
provision of end-of-life care may be developed through experience in providing this
care.
I think that looking after a dying patient is an advanced practice skill. Even
just last week, we had some—quite a few deaths and some junior people who,
clearly, I could see, were struggling with—one, I mean, I guess with the care.
How to deal with the family and how to, I guess, even deal with it herself.
(Participant 4)
I think it does take time and skill and years to look after people who are dying
and to be comfortable. (Participant 4)
Some participants felt that the complexity of end-of-life care was not always
recognised by their nursing colleagues. Examples of inappropriate allocation of
junior nursing staff and higher nurse-to-patient ratios were cited as evidence of both
the lack of value and lack of understanding of the complexity involved in end-of-life
care.
44
I think what frequently happens is that the more junior nurses are allocated
the patients that we’re withdrawing on, which I think is completely, I guess
unfair to the nurse. But also, I guess it also impacts the family. (Participant 1)
In recent times I was given two patients who weren’t expected to survive.
They were both on ventilators . . . I had two students as well. I had two
patients on ventilators, which is normally unheard of in this unit. I also had a
student to mentor with each of these patients. I thought that was pretty overt
disregard for the complexity that is involved in end-of-life care . . . So that
was really evident to me that withdrawing and dying was seen as something
very simple. It’s not simple. It’s time intensive. There’s observation . . . I’m
collecting information all the time. I’m being vigilant all the time.
(Participant 2)
Variation in the personal beliefs held by individual nurses about the value of end-of-
life care and the complexity of this area of practice are factors that may influence
intensive care nurses’ approach to end-of-life care and the care provided to patients
and their families.
5.4 Category: End-of-life care in the intensive care context
The ICU is a unique practice setting and the factors influencing care provided in this
context may differ to those in other contexts such as an acute ward or oncology unit.
Participants reported a practice context of limited organisational supports relating to
end-of-life care issues. Interventions aimed at modifying the bedside environment
can assist nurses in creating a context within the intensive care setting that supports
the provision of care for patients at the end of life and their families.
45
5.4.1 Organisational support
Some participants in this study perceived a lack of guidance from their colleagues
and the organisation in regard to end-of-life care. Following the decision to withdraw
treatment, the medical team was perceived to withdraw from participating in the care
of the patient. Factors that may influence the disengagement of medical staff include
the curative culture, perception of death as failure and the personal comfort of
medical staff with death and dying.
Speaking to family in those circumstances and how to—basically, when a
family says we’re withdrawing the tubes out, the doctors don’t even go in
except to pronounce the death. There would be nothing wrong with them
popping in just to see how the family was going or—you know. I think to
show the ongoing care of doctors, as well as nurses. Yeah. I think that might
be fear as well, might be time constraints. Yeah. (Participant 4)
We don’t tend to have doctor input after the decision to withdraw care,
though, and maybe that’s something that we could look at as well, to do
better. Generally, after the family meeting, the decision to withdraw, the
family only deals with the nursing staff who, if they’re junior, can’t explain
what might be happening and why certain symptoms might be occurring or
don’t know that certain symptoms can be treated and your antimucolytics for
rattly chest and stuff is obviously something that I always advocate for.
(Participant 1)
The variation in perceptions of the value and complexity of end-of-life care was also
evident in the guidance provided by senior nursing staff. Some participants felt that
the guidance provided by nursing team leaders to junior nurses was superficial and
inadequate to address the complexity of care required by a patient at the end of life.
I’ve seen it allocated to the junior nurses and it’s just, oh well, you just
extubate and then start the morphine or, and it is so much more than that, so
much more. (Participant 1)
46
Nursing care should be individualised to the needs and personal preferences of the
patient, and care at the end of life is no different. Although some participants in this
study stated that care should be individualised, they also felt that policies and
guidelines about end-of-life care may assist staff in the provision of this care by
helping them to think about various aspects of care that may be required by the
patients and their families. Examples provided by participants included contacting
spiritual advisors and social workers and asking about the patient’s pets. No policies
or guidelines were available in the unit to guide nurses providing end-of-life care.
5.4.2 Modifying the bedside environment
As previously discussed, end-of-life care was highly valued by participants in this
study, and they wanted to create a positive experience for the patient and family. All
participants described interventions undertaken after a decision had been made to
withdraw or withhold treatment to modify the bedside environment and create a good
environment for the patient and the patient’s family to experience end-of-life care.
Participants attempted to create an intimate and peaceful setting that supported the
provision of end-of-life care by ‘removing the intensive out of intensive care’
(Participant 2) through interventions to provide privacy, remove clinical equipment
and create a homely environment.
In the transition to end-of-life care, participants indicated that patients were
transferred to a single room within the ICU if they were not already in one. Patient
care in the ICU that provided the study setting for phase one of this research study is
provided in open plan bays, with four beds in each bay, or in one of four single
rooms. Participants reported that admission to a single room provided space and
privacy for the patient and his or her family, allowed more visitors at the bedside and
permitted visitation of family outside regular visiting hours. The use of single and
family rooms was also perceived to be beneficial to other patients and families, to
lessen their exposure to the dying patient and the patient’s family.
47
Normally people go to a private room: one, to allow more visitors; secondly,
it’s just a quieter environment. Also, for other patients as well, to see people
upset and crying is very disturbing for the other relatives because they think
there but for the grace of god go I. They’re given a quiet room. (Participant
2)
One participant identified that single rooms are not always available and expressed
frustration at not being able to provide the family with adequate privacy.
I felt like I couldn't give them the privacy that they deserved because I was
standing behind those magical soundproof curtains. It’s not the same; it’s not
the same. (Participant 5)
Another factor that facilitated a positive experience of end-of-life care was the
availability of a private room for use by the family of the patient at the end of life.
Participants in this study identified that their ICU has a designated room, separate to
the intensive care visitor’s waiting room, which is used by families of dying patients.
This room allows family members to remain within the ICU, close to their relative,
and to congregate separately to the other visitors to intensive care.
I think the family room is fantastic. It’s a little bit of privacy that you’re not
in the visitors room crying or—you know. They’ve got a loo there, so you
don’t have to step out to come in to use the loo, that sort of thing. I think,
overall, they’re really good things . . . I think also our kitchen provides us
with sandwiches and drinks. So I think we can—I think we give the family a
good environment in which to experience death. (Participant 4)
Participants reported other interventions undertaken to modify the bedside
environment, such as shifting monitoring equipment out of view of the family and
removing clinical equipment that was not in use, including ventilators, infusion
pumps and intravenous lines. Participants felt that monitoring equipment was
48
distracting for the family as they spend their time watching the monitor rather than
looking at and talking to their relative.
Generally, I mean I tend to ask the family members what they want but we
can kind of dim the lights and have chairs all around and stuff but generally
I’ll turn the screen so that, if need be, I can see it from the other room. If
anyone in particular wants to be able to see it, then they can. I guess we do
minimise the equipment, the monitoring equipment, to sort of clear, clear out
the room as best we can to fit as many people in as we can and I guess make
it less clinical. (Participant 1)
I think that’s really important and getting rid of the monitoring is a big thing
for me because I don’t think that, I don’t want their last moments with their
loved one to be watching a screen like you would on an emergency show
where it goes blip, blip, beep. They sort of expect it and they’ll just watch the
monitor and I think that’s not fair. You shouldn’t be watching a monitor; you
should be watching your loved one and talking to your loved one and I think
we’re depriving them of that if we keep all this other stuff around.
(Participant 5)
Removing clinical equipment combined with modifications such as adjusting the
lighting, changing the bed linen, putting up photographs and playing music assisted
in creating an atmosphere that was less clinical and more homely and comfortable for
the patient and family. The staff on the unit had developed a resource kit containing
equipment such as linen, lamps and cushions for use when caring for a patient at the
end of life. The kit contained coloured linen and matching quilts that was used to
replace hospital linen. Participants stated that they turned off or dimmed the lights in
the room and used bedside lamps to create a peaceful atmosphere.
Get rid of the sterile environment, change that perception, it looks like
they’re relaxed, more like they would be at home. (Participant 5)
49
In that room we’ve got lamps to create an ambience of quietness and
intimacy, as much as you can in the clinical confines of an ICU unit. We use
linen. We try to make it as un-clinical as possible. (Participant 2)
Put up pictures, put up music, get their own blankets, get whatever, and make
it a personal experience, rather than the stark white and tippy-toe around.
(Participant 4)
End-of-life care was highly valued by participants in this study and they wanted to
create a positive experience for the patient and family. The practice context of
intensive care is a busy and noisy environment; however, an intimate, peaceful
setting in which to experience end-of-life care and death could be achieved by
transferring the patient to a private room and modifying the environment to create a
homely feel. The removal of monitoring and equipment encouraged the family to
direct their attention to the patient and change the focus of care to providing comfort
at the end of life.
5.5 Category: Facilitating end-of-life care
The category of facilitating end-of-life care incorporated five subcategories. The
subcategories uncertainty and ambiguity and emotional intensity captured nurses’
perceptions of the factors influencing the provision of end-of-life care and the
support available to nurses. The subcategories comfort care, humanising the patient
and facilitating the family’s experience captured the practices of critical care nurses
in the provision of care to patients at the end of life and their families.
5.5.1 Uncertainty and ambiguity
Some participants alluded to the uncertainty and ambiguity surrounding patient
prognosis and end-of-life decision making in this setting. This uncertainty and
50
ambiguity appeared to continue even after decisions had been made to withdraw
treatment. In a practical sense, participants reported that this would manifest in
waiting for family members to arrive at the patient’s bedside, resulting in a delay
between when a decision was made to withdraw treatment and when this actually
occurred.
We can have a dying patient here for two days because—well, first of all,
well the niece needs to come and she won’t be here for 12 hours . . . then the
second cousin, four times removed . . . I think a lot of times we give the
family a lot of—maybe too much time to—before withdrawal of treatment . .
. I think it’s disrespectful to the person who’s dying, to lie there, gasping
sometimes, because they’re waiting for someone to come. (Participant 4)
When a clinical decision has been made in relation to withdrawing and withholding
treatment, the patient’s family may not always be ready for this decision to occur.
The family may require time to accept the change in treatment plan to comfort only
and the pending loss of their loved one. Several factors may contribute to family
readiness, including the uncertainty and ambiguity surrounding the patient’s
prognosis and treatment in intensive care, the overwhelming experience of having a
family member in intensive care and the experience of grief and loss. Nurses’ role in
facilitating end-of-life care may include ascertaining family readiness and providing
adequate preparation and support for family members of patients at the end of life.
5.5.2 Emotional intensity
In the critical care setting, the difficulty in determining patient prognosis and the
availability of advanced treatment modalities that can maintain life can make
decisions regarding the continuation or termination of treatment difficult.
Participants were informed that the focus of this study was the experience of caring
for a patient at the end of life after a decision had been made to withdraw or withhold
life-sustaining treatment. Therefore, the data does not tend to capture the uncertainty
51
and ambiguity that surrounds this area of practice. However, participants alluded to
some of the challenges that they are faced with when they spoke of avoiding sending
mixed messages to the families of patients at the end of life and their participation in
family meetings to discuss patient prognosis and decisions to shift focus of treatment
to comfort only.
Intensive care is a high-intensity work environment. Caring for patients with
traumatic injuries and critical illness on a daily basis exposes nurses to grief and
human suffering not experienced in other workplaces. One participant highlighted
this situation, stating:
As a junior person, in particular, you don’t have anyone to talk to because
your nursing friends that you would normally confide in don’t understand.
Your family doesn’t understand, your partner doesn’t understand, they don’t
get it. You say, I’ve had a really horrible day. Oh, mine too. Column A
wouldn’t add up to column B and that made column C all out of whack. No,
someone’s died. No-one gets it except for the people that are here.
(Participant 5)
With everyday exposure to critically ill patients, nurses may be expected to be
resilient to the experience and emotional aspects of this work. One senior member of
nursing staff described how senior staff check in with each other after caring for a
patient at the end of life. This exemplar suggests that, although this support is
offered, it is expected that support would not be required.
Yep. But a lot of times it’s just, are you alright? They go, yep. Because a lot
of times we are, because we’ve done it so many times. Sometimes it isn’t.
(Participant 4)
In addition, the intensity of nursing work in intensive care may become second
nature to senior staff and they may not recall how overwhelming the experience may
be for junior staff. Some participants identified that as a nurse in intensive care, you
52
were expected to cope with death and dying. These participants felt that the
prevailing culture in intensive care made it difficult, particularly for junior staff, to
ask for help or seek emotional support during or after the provision of end-of-life
care to a patient and family.
It’s not okay here to say that you’re not quite coping. You are looked down
upon if you say I’m not really coping, I’m kind of struggling with this. I had
a really emotional day. This is hard. We don’t have that support. (Participant
5)
One participant also expressed concern that staff do not have a say in whom they are
allocated to care for and this may lead to situations that are emotionally confronting
for the nurse. This participant also discussed the lack of down time between the
provision of end-of-life care and the admission of another patient during the same
shift. These situations may occur because end-of-life care is not considered important
and/or the complexity of end-of-life care is not recognised by some. These situations
may not only influence the care provided, as identified by Participant 1, but may also
affect nurse coping and stress levels.
So if they’re not comfortable regarding a specific issue of dying or it may be
what the patient may be dying of, maybe we should reconsider allocation.
That’s a thing at the moment, we’re pre-allocated, we don’t have a say in who
we nurse and I think that may impact on care. (Participant 1)
I see a need for debrief for nurses, particularly after, and one of my examples
is coming on shift, having a really critically unwell patient and they die as
soon as you’ve sort of sorted out things with family, attended to paperwork
and stuff, then you can get the next post-op off the ranks sort of thing. I don’t
think we provide adequately for that changeover for nurses. No-one sort of
comes up to you and goes, gee, was there anything in that that struck a chord,
triggered something, you know, whether it was, if I had a previous
experience whether in nursing or in my personal life. You don’t really get
asked those questions of, how are you going after that this morning. I can
53
certainly see that there’s a need for debrief or even just a down time when a
person can change gears between patient A and patient B. (Participant 1)
The frequency of critical incidents in intensive care may mean that debriefing
sessions are overlooked as nurses continue to engage in the busyness of the work
environment. Participants in this study identified that more support for intensive care
nurses providing end-of-life care was needed. It was acknowledged that external
support services existed but these were not accessed. Staff identified that they often
rely on their collegial network for support and that this form of support may not be
available for junior staff who may not have established these networks.
Being supported, I guess. If you knew—even if you don’t have to take them
up on it—if you knew that there was support there, it would be better.
(Participant 5)
Just having support, junior nurses being supported in the role of doing end-
of-life care instead of expected just to be able to cope. (Participant 1)
I think us oldies just use each other, the way we’re used to, because we never
had anything like that. I guess the hospital does make things available
through whatever it is [external employee support programme]. But people
again are reluctant to use services like that. (Participant 4)
Intensive care is a unique practice context involving high-intensity and emotive
work. Uncertainty and ambiguity related to patient prognosis, the trajectory of
critical illness and treatment decisions surround practice in intensive care. Nurses in
phase one of this study described a culture of poor organisational and emotional
support. Lack of emotional support and inadequate guidance in end-of-life care
practice may influence intensive care nurses’ end-of-life care experiences, stress and
coping and may compromise the quality of care afforded to patients at the end of life
and their families.
54
5.5.3 Comfort care
As previously discussed, participants viewed end-of-life care as an advanced practice
skill and felt that the complexity of this area of practice was not always recognised
by their colleagues. End-of-life care in the ICU consisted of more than just the
removal of treatment.
It’s not just withdrawing; it’s actually providing comfort. (Participant 2)
Just because they’re dying, doesn’t—we might be withdrawing treatment, but
we don’t withdraw care. (Participant 4)
One participant defined comfort care provided at the end of life by offering the
following explanation:
We had moved her to comfort care. If comfort is the criteria, then you’re
looking at emotional, physical, psychological comfort, not only of her but
also of the extended family. The significant relationships are really important
in terms of end-of-life care and creating comfort so that the person dies with
as much ease and release as possible. (Participant 2)
A focus on caring for the patient’s family and facilitating the family’s experience of
end-of-life care dominated participants’ narratives of their end-of-life care
experiences in intensive care. The actual nursing interventions undertaken in the
provision of comfort care to the patient were not directly discussed by participants in
detail. Often, participants revealed tasks undertaken in the care of the patient in the
context of highlighting some other aspect of their end-of-life care practice or
experience. For example, the task of bathing a patient was mentioned by one
participant in the context of allowing family to be involved in the care of the patient.
The actual tasks undertaken in the provision of comfort care may be taken-for-
granted aspects of participants’ practice. Additionally, participants may have felt that
55
they did not need to describe these details of their practice to the researcher due to
the researcher’s experience and knowledge of intensive care work.
Tasks undertaken in the provision of comfort care that were mentioned in the
interviews but not described in detail included bathing, hair care, mouth care,
pressure area care, spiritual care, and the administration of analgesics, sedatives and
antimucolytics.
5.5.4 Humanising the patient
Participants in this study described interventions to humanise the patient and assist in
shifting the focus of care to comfort only. Interventions to humanise the patient
included removing equipment, personal cares and talking about the patient.
When caring for patients at the end of life, participants spoke about humanising the
patients to make them look more like themselves. Removing monitoring and
equipment or covering up equipment that could not be removed and providing
personal cares such as combing the patient’s hair assisted in de-medicalising the
patient and shifting the family’s focus to the patient as a person and comfort-only
care.
Try and make them comfortable. I don’t know. I think, in some ways, it can
be very intuitive. I just think what I would like or what humanness, human
beings would like, and try and do that. (Participant 4)
Make them look a bit more like themselves, get rid of as many lines as you
can. If stuff has to be in, it has to be in. Cover that arm that’s covered in stuff.
(Participant 5)
Get rid of all the extraneous monitoring equipment, to leave it at the bedside
in the main ward. So we go into the single room with absolutely minimal
stuff. We don’t need . . . Often we just have morphine and midaz running.
56
That’s all we need: just one pump, just one ventilator. Sometimes we just put
them on a bag to enter the single room so that they’re just breathing on room
air so that . . . There’s a medical reason for this in my practice. That is to
allow CO2 to build up so that they’re almost CO2 narcotised and sedated
almost naturally so that they don’t experience too much air hunger if they’re
not actually brain dead. So there are things that I do. When I get into the
room I change the settings on the ventilator to be as normal as possible. If
they’re on high amounts of PEEP or high amounts of pressure support, I sort
of crank it down incrementally so that by the time we actually get to
extubation . . . I don’t want the relatives to experience distress by seeing air
hunger. (Participant 2)
Patients are admitted to ICUs following trauma or an acute phase of illness, often
presenting with an altered level of consciousness. This poses a barrier to establishing
a relationship between the patient and the intensive care nurses. Nurses also shifted
their focus to the patient as a person by asking the family about the patient to enable
them to ‘get to know’ the patient. The process of the nurse ‘getting to know’ the
patient also provided an opportunity for the family to talk about their relative and
reflect on their lives together.
Yeah. I’ve had two where people just—I think they—not all, but a lot of
them do want to tell you what the person who’s lying in the bed. You know,
we had one lady who—I was just sitting in the empty room. She was sitting
with her dad. Often she physically came and grabbed me and pulled me
beside her dad’s bed. She said let me tell you about my dad. She said, oh, he
had a fantastic voice. I said, oh, he could sing. She just laughed and said, no,
he just had a nice voice. She just wanted to tell people about—and sometimes
I just ask too, depending on if you read the mood right. You know, what was
he like? Or blah-blah-blah. Something like that, just to try and make it that
they can speak about the person who’s dying or indeed has already died,
about what they were, about their life, that kind of stuff. (Participant 4)
57
I think you do find people wanting to share stories and that sort of stuff. So I
think allowing them to do that and to let us, the stranger, sort of know them.
Or I can just say I don’t know your dad, because he’s always just been
attached to tubes. So what was he like? There’s ways into those
conversations if it’s appropriate. (Participant 4)
Through interventions to humanise the patient, both families and nurses shift their
focus to the patient as a person and comfort-only care. These interventions create a
context conducive to the provision of end-of-life care in the intensive care setting,
and the value of participating in this moment in a person’s life for nurses is evident.
5.5.5 Facilitating the family’s experience
Care of the dying patient’s family was identified as a focus of care for participants in
phase one of this study, and a significant proportion of participant dialogue in each
interview was dedicated to this care. The findings of this study identified facilitating
the family’s experience during the provision of end-of-life care as an important
nursing role.
Participants in this study acknowledged the need to provide options and respect
choices of the dying patient’s family. Providing options and respecting choices were
primarily discussed in relation to the patient’s family. The limited or absent
discussion of the patient’s wishes by participants in the interviews may be in
response to the inability to interact or develop a relationship with patients in
intensive care due to their altered level of consciousness. In the absence of an
advance directive, the family may be able to indicate what they believe the patient
would want in the given circumstances. The intensive care nurse has the opportunity
to develop a relationship with the family and discuss possible options and choices.
Nurses are able to facilitate a family’s experience of end-of-life care by providing
options and respecting choices, enabling family involvement and participation.
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Participants spoke of their ability to influence the family’s experience of end-of-life
care. Some participants stated that they asked the family ‘what do you want?’ to try
to ascertain the type of atmosphere the family wanted to create, the support required
from the nurse and the degree to which family wanted to be involved in providing
end-of-life care to their relative.
So I think it is personal, I think we should ask people what do you want?
This is your hell. You’re going through it. How do you want to go through it?
(Participant 4)
So I helped the family, before the withdrawal, helped them. One of them
wanted to bathe, help bathe, so we helped bathe and do all the general care of
their loved one. (Participant 3)
One participant described that a rapport with the family was needed to assist the
nurse to facilitate family experience.
It’s really hard looking after someone if you don’t have a rapport with the
family. I generally can create a rapport pretty well so I haven’t had too many
experiences where I haven’t but if the family’s really closed and you just feel
really awkward, even going in there to do anything at all. If the infusion
pump is beeping or something you feel really uncomfortable going in there
and I think that would then reflect to them. So I just find it such—it makes it
emotionally harder if you don’t have a rapport. In a way I know that sounds
strange but I sort of think, what are they getting from me, like what sort of a
vibe are they getting from me if I’m feeling uncomfortable in a situation.
Like that’s not fair on them either. (Participant 5)
All participants acknowledged their role in explaining and providing information to
the patients and their families. Participants in this study identified that they explained
what was happening to the patients and their families, answered questions posed by
family members and provided information.
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You don’t have to really say much to them when they’re dying, when they’ve
got their loved one dying. Explaining when things happened. Just, I’d
switched the monitoring around so the family weren’t fixated on the
monitoring but I did say when their heart had stopped and things like that. I
explained, they said there was some beeping noises and I explained that was
normal and it could continue for a little while. So it was more just
reassurance and information that I gave the family at that time, without
information overloading them as well. (Participant 3)
It’s very satisfying to be able to give people information . . . Even though
they’re dying, they’re still not dead. (Participant 2)
The provision of end-of-life care can be an emotionally confronting area of practice.
It is a second-nature aspect of nursing practice to explain and provide information,
and this is no different when caring for a patient at the end of life. Although the
actual content of information and explanations provided could not be ascertained
from the interview data, explaining and providing information was considered a safe
area as the information needs and questions from family were similar. This was a
practical and comfortable area of practice for both senior and junior staff. In response
to her role in explaining and providing information about clinical equipment and
treatment interventions, one participant said:
I felt quite comfortable doing that, that was something I could do. Right,
okay, comfort zone again, I can explain this stuff, that’s cool. (Participant 5)
Facilitating end-of-life care included explaining and providing information to the
family. The findings suggest that explaining and providing information was a
comfortable area of practice for all participants in the often confronting and
emotional work of providing end-of-life care.
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All participants described being there for the family through their presence with the
patient and family according to the family’s preference and the nurse’s comfort with
being there. The environment of the intensive care setting and the experience of
having a relative at the end of life may be overwhelming for family members.
Nursing presence or being there was integral to facilitating family experience as they
support family members to be with their relative at the end of life. This support
included a physical presence by the nurse at the patient’s bedside and encouraging
the family to sit, talk to and touch the patient.
Yes, the family knew what was happening anyway and when they came back
in, just stood with the wife for a while and, I don’t know, I think she wanted
me to be there for a little bit. Because we did have such a good rapport I
think she just sort of held on to my arm, you know, it was like, it’s okay, sit
down and encouraged her to talk to him and all that and of course she asked,
can he hear me and you have to say, well, I don’t know but personally I
believe, I’d like to think so. So she sat down and held his hand and had a chat
and then I left, I stepped out and all the family sort of had their little time in
there and basically they were all in there, yes, until he passed away.
(Participant 5)
I think that’s another big thing, is permitting people to touch and talk and cry.
I think those are the three biggest things. I think with all the lines and tubes,
patients’ families generally hold back, concerned that they might knock
something out or do the wrong thing and a cranky nurse is going to jump all
over them. But I think if we explain, well, you can touch them here or touch
them there if there is risk of something becoming dislodged. (Participant 1)
Being there was not only a physical presence, but also involved emotional
investment of the nurse.
I mean we still cry. I mean there was a team leader crying with those deaths
last week. But that’s alright. I don’t think crying is bad. I think crying is
good. Yeah. So I think if something’s sad, there’s nothing wrong to cry, even
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with the family seeing her . . . I must admit, I haven’t done that for a while.
But you know, even—you know, in this unit, there’s one family where I
think I took the tissue box out of the mother’s hand because I was the one
bawling. They just laughed. But they enjoyed that I still—that you still could
feel, that you could still care and that sort of stuff. We had a—I had a real
special bond with family. So it’s alright to cry. I don’t apologise for it. I’m
not embarrassed by it either. In front of my colleagues, I’m not either. If it’s
sad and I’ve got tears in my eyes, well, that’s how it is. Someone comes and
gives me a hug and off we go. Yeah. (Participant 4)
Without this emotional investment, the nurse may risk focusing on the process and
tasks of end-of-life care at the expense of caring for the family. Inexperience and
discomfort with providing end-of-life care are factors that contribute to nurses
avoiding being physically and emotionally present for the patient and family.
Other just little subtle things. She has a body bag and the thing’s in the room,
just as the family was leaving. So yeah. Maybe that was just a little bit
premature . . . I don’t think the family knew what it was. But yeah, but just—
she was just trying to think of being efficient. She was thinking of doing her
job, rather than, I think, thinking with her heart a little bit. But I think she
was too afraid to think with her heart. Not that—I don’t think that she
intentionally would have done anything like that. But I think it was just her
inexperience. (Participant 4)
I guess she was afraid—it seemed like she was afraid to speak to the family
or to be in the room. Or she’d go in the room and be tiptoe in, tiptoe out, sort
of thing, instead of—I don’t know. She obviously didn’t have much death
experience. (Participant 4)
I think nurses as well can be very task orientated and sort of can hide behind
being busy doing tasks. (Participant 1)
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Physical and emotional presence by the intensive care nurse is important in
facilitating end-of-life care by supporting family members. For a nurse to be there at
the end of life for patients and their families, they need to feel comfortable with
being there themselves.
As previously outlined, participants in this study valued participating in end-of-life
care and identified their role in influencing the end-of-life experience for patients and
their families. Creating memories and positive experiences were practices undertaken
by intensive care nurses in facilitating end-of-life care. All nurses can contribute to
the creation of memories and positive experiences that families may carry with them
through their lives.
This is the most horrific, horrible thing that they’re ever going to face, this
family. They’re losing someone that’s most important to them in their life but
it doesn’t have to be so bad. I think there’s little things you can do that
change someone’s perception of the whole thing even though it sucks.
(Participant 5)
I think often families—I think we have a lot of—not the word controller part,
but we have influence, I think, on how people die and the memories that
those families take away through the death process. (Participant 4)
All participants in this study described actions that they undertook to assist in
creating memories for the patients’ families. Participants described examples of
creating memories such as taking the patients’ hand prints and collecting a lock of
the patients’ hair and their identity bands for the families to keep. These activities
can be offered to all families, regardless of the nurse’s level of skill and expertise in
end-of-life care.
Some participants in this study described experiences in which the role of the nurse
was pivotal in supporting families to have meaningful experiences with their relative
at the end of life. These stories indicated an advanced level of practice whereby the
nurse involved could intuitively grasp the family situation, identify a meaningful
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moment and respond appropriately to assist in creating a positive experience. The
importance of these experiences for the family was highlighted when the family
acknowledged the nurse for their work.
I wrote a book for this little girl, for both of them. After hearing the
discussion . . . I drew upon what I had heard the father talking to the little girl
about . . . I didn’t get the husband’s permission and I didn’t tell anybody that
I was doing this. I don’t know where I stood ethically. I just was really driven
by concern for this little four year old, and also just the lack of vocabulary
that this man had for explaining death. The book was created . . . Then I went
to the funeral and he actually read that book out in lieu of a eulogy. So he
was still so without vocabulary or anything that this was just something. I
was struck by the significance of what the book became. Then he actually
wrote a letter to the CEO about the care that his wife had got. I got a phone
call from the CEO. That really blew me away. (Participant 2)
Most recently there was a 27 year old that was dying of leukaemia. She was
very strong willed. She knew what she wanted and what she didn’t want. By
hook or by crook, she wanted a cigarette before she died because that’s what
she and her dad used to do; they used to smoke together, even with the
leukaemia. I thought it was really important to give dad and the daughter the
opportunity to hang out on the balcony. It’s very against the rules here to
have cigarettes on the balcony. We wheeled her out there. We sat her up. She
could hardly sit up. But the significance of lighting . . . We weren’t
obstructed. She was no longer . . . As far as I was concerned; we had moved
to comfort care, which is a euphemism for palliation. We had moved her to
comfort care. If comfort is the criteria, then you’re looking at emotional,
physical, psychological comfort, not only of her but also of the extended
family. The significant relationships are really important in terms of end-of-
life care and creating comfort so that the person dies with as much ease and
release as possible. So we got her out to the balcony. It was just through
wilfulness that she managed to sit on the edge of that bed with her dad. She
lit up. I don’t think she inhaled, but she lit up. That was a significant thing.
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They were there for the duration. We came back in and she died within 12
hours of that. (Participant 2)
I think it’s a very personal—I think it’s an intensely personal time. I think
people should have a choice in how they do that . . . We had one lady whose
birthday the next week and they’d bought presents. They asked will we bring
them in? So they brought in the presents and they played music. They had
like a picnic. It sounds maybe disrespectful to other people, but for them it
was the right way to do it. I guess personal life is—they don’t—people don’t
know that they can personalise the death. Put up pictures, put up music, get
their own blankets, get whatever, and make it a personal experience, rather
than the stark white and tippy-toe around. So there was laughter. There was
crying. I think they made a real—and the mother wrote me afterwards and
said thank you, because it was something that she could then take with her,
rather than the tiptoeing around and the whispers in the corridor and the—
you know, sort of stuff. So anyway. So I guess that’s how I think of lots of—
I guess it’s my own experience, seeing somebody else’s. Then just this
woman saying that she appreciated being able to be involved in the care.
(Participant 4)
The findings of this phase of the study suggest that in the provision of end-of-life
care, all nurses can facilitate the creation of memories for families. At an advanced
level of practice, personalised meaningful experiences could be facilitated for
families of patients at the end of life. A relationship with the family and an intuitive
grasp of the situation is necessary for this to occur. Creating memories and positive
experiences is a satisfying aspect of end-of-life care practice for intensive care
nurses.
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5.6 Discussion
Findings from phase one of this study identified categories relating to the value
nurses placed on the opportunity to participate in end-of-life care and their beliefs
that end-of-life care is an advanced practice skill. Participants felt that the value and
complexity of end-of-life care was not always recognised by their nursing colleagues
and other health care professionals. Variation in personal beliefs about end-of-life
care can thus influence how one approaches end-of-life care and the care provided to
patients and their families.
The ICU has some unique features and the provision of end-of-life care in this
context has some differences from end-of-life care in other settings. Specifically,
organisational and emotional support, the intensive care bedside environment and the
intensive care nurses relationship with the patient and the patient’s family are factors
that emerged from interviews with critical care nurses that may influence critical care
nurses’ end-of-life care experiences and practices. Nurses in this phase of the study
described interventions to modify the bedside environment and humanise the patient
to create a context that supported the provision of end-of-life care.
Nurses in this phase of the study described practices undertaken in the facilitation of
end-of-life care that included providing options and respecting choices, explaining
and providing information, providing comfort care, being there, and creating
memories and positive experiences. The practices that nurses described varied
according to their own personal beliefs, their comfort with death and dying and their
expertise in providing end-of-life care to patients and their families.
Importantly, from the findings of phase one, aspects of critical care nurses’ end-of-
life care practices similar to those presented in Clarke et al.’s (2003) domains of end-
of-life care were identified. In addition, other aspects of end-of-life care, such as the
value of participating in end-of-life care and the emotional support obtained through
collegial support networks, were consistent with evidence in the literature review
(Calvin et al., 2007; Fridh et al., 2009; Halcomb et al., 2004; Jones & FitzGerald,
1998; Kirchhoff et al., 2000; Shorter & Stayt, 2010).
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5.7 Summary
The findings of phase one of this study provide insight into the end-of-life care
experiences and practices of critical care nurses. The content of the survey
instrument developed in phase two of this study was informed by the literature
review and the findings of phase one presented in this chapter. The next chapter
documents the development of the survey instrument and the methods used to obtain
expert review and pilot test the survey instrument.
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6 PHASE TWO METHODS
6.1 Introduction
The purpose of phase two of this study was to develop a survey instrument informed
by an extensive review of the literature related to end-of-life care in critical care
settings and the findings of phase one of this study. Phase two included a review of
the survey instrument by a panel of experts and a pilot test of the survey instrument
to determine the reliability of the instrument and feasibility of methods planned for
use in phase three of this study. This chapter will first describe the development of
the survey instrument. The methods used in obtaining expert review of the survey
instrument including selection of panel members, review procedures and data
management and analysis will then be described. The process of pilot testing the
survey instrument will then be discussed, including the setting and sample,
procedures and data management and analysis.
6.2 Development of the survey instrument
A suitable survey instrument was not available to identify the end-of-life care
practices and the factors influencing these practices as reported by Australian critical
care nurses. Therefore, a survey instrument needed to be developed for use in this
study. Lynn (1986) describes a three-step process for the development of a survey
instrument. The three steps are identification of domains and subdomains of the
content of interest, item generation for each domain and subdomain, and formatting
of the instrument into a usable form. To answer the research questions in phase three
of this study, three main sections were required in the survey instrument: critical care
nurses’ end-of-life care practices, factors influencing the provision of end-of-life care
and demographic information. The first two steps in developing the survey
instrument—identifying the content of interest and item generation for each of the
sections of the survey instrument—is outlined in further detail below. The third step
in instrument development, as suggested by Lynn (1986), involves developing the
instrument into a usable format. Key Survey provided the platform for the online
survey (WorldAPP Key Survey, 2009, 2011). The existing template was used for the
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survey with some minor adjustments made to the shading of alternate items to
improve readability. The guidelines for web questionnaires outlined by Dillman,
Smyth, and Christian (2009) were reviewed, and appropriate formatting changes
were made to enhance the readability and usability of the survey for participants.
6.2.1 Critical care nurses’ end-of-life care practices
The Critical care nurses’ end-of-life care practices section of the survey instrument
aimed to address the research question: What are the most frequently reported end-
of-life care practices of Australian critical care nurses? Following a review of the
literature, the domains of end-of-life care identified by Clarke et al. (2003) were
chosen as a framework for the Critical care nurses’ end-of-life care practices section
of the survey instrument. These domains provided comprehensive coverage of all
aspects of end-of-life care in the critical care setting identified in an extensive review
of the literature and the findings of interviews with critical care nurses in phase one
of this study (see Table 6–1). The six domains that incorporated clinicians’ practices
directly related to the care of the patients and their families were included in this
section of the survey instrument. The seventh domain—emotional and organisational
support for clinicians—was not included in this section of the survey instrument as it
does not relate directly to care of the patient; however, this domain was included in
the Factors influencing the provision of end-of-life care section of the survey
instrument.
The items in the Critical care nurses’ end-of-life care practices section of the survey
instrument were empirically derived from an extensive review of the literature in
relation to end-of-life care in critical care settings and the findings of phase one of
this study. The Critical care nurses’ end-of-life care practices section of the
instrument requires respondents to rate how often they undertake select practices
when caring for a patient at the end of life. These items were measured using a five-
point rating scale in which 1 = never, 2 = rarely, 3 = sometimes, 4 = often and 5 =
always. This rating scale was selected to provide evidence of the frequency with
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which specified practices are undertaken in the provision of end-of-life care by
respondents to the survey.
Table 6-1: Comparison of Clarke et al.’s (2003) domains of end-of-life care,
subcategories developed from phase one interview data and initial a priori
scales in the Critical care nurses’ end-of-life care practices section of the survey
instrument
Domain (Clarke et al.
2003)
Phase one findings A priori scale in
instrument
Patient and family
centered decision making
Facilitating the family’s
experience: Providing
options and respecting
choices
Patient and family centred
decision making
Communication within the
team and with patients and
families
Facilitating the family’s
experience: Explaining
and providing information
Explaining and providing
information
Continuity of care — Continuity of care
Emotional and practical
support for patients and
families
Humanising the patient
Facilitating the family’s
experience
Emotional and practical
support for patients and
families
Symptom management
and comfort care
Modifying the bedside
environment
Comfort care—
environmental factors
Comfort care Symptom management
and comfort care
Spiritual support for
patients and families — Spiritual support
Note. The domains continuity of care and spiritual support were not identified in the
categories and subcategories of interview data in phase one of this study.
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6.2.2 Factors influencing the provision of end-of-life care
The PARIHS framework was originally developed to describe factors influencing the
uptake of evidence in clinical practice (Kitson et al., 1998). As noted in the literature
review chapter, this framework provides a suitable framework for this study to
identify factors that may influence nursing practice in relation to end-of-life care.
Specifically, the elements of context, evidence and facilitation were identified as the
key domains to be explored with items in the survey instrument that identify the
respondents’ attitudes and beliefs, and perceptions of their workplace in relation to
factors that may influence the provision of care to patients at the end of life and their
families. The a priori scales within each domain in this section of the survey
instrument, presented in Table 6–2, were empirically derived from an extensive
review of the literature and the findings from phase one of this study. This section of
the survey instrument aimed to address the research question: What are the select
context, evidence and facilitation factors influencing end-of-life care as perceived by
Australian critical care nurses?
Table 6-2: Domains and associated a priori scales in the Factors influencing the
provision of end-of-life care section of the survey instrument
Domain A priori scales
Context Organisational culture
Resources
Evidence
Patient and family preferences
Nursing education and experience
Nurse practice knowledge
Facilitation
Emotional support
Nurses’ end-of-life care values and beliefs
Coordination of care delivery
The Factors influencing the provision of end-of-life care section of the survey
instrument included items from the Neonatal Palliative Care Attitude Scale
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(NiPCAS; Kain, Gardner, & Yates, 2009). The 26 items of the NiPCAS (Kain et al.,
2009) were reviewed and considered to address some of the contextual elements
pertinent to end-of-life care in an adult critical care unit. Four items from the
NiPCAS were not included in the survey instrument for the current study as they
were deemed not relevant to the purpose of the current study or context of critical
care in the adult patient population. These items were about society’s attitude to
palliative care, pain management and the perception that caring for dying patients is
traumatic. The remaining items from the NiPCAS were adapted to reflect the adult
patient population and the term end-of-life care was substituted for palliative care.
Following review by the expert panel and pilot testing of the survey instrument, only
14 items from the NiPCAS were retained in the final version of the survey
instrument used in phase three of this study.
The Factors influencing the provision of end-of-life care section of the survey
instrument also includes the Death Anxiety Scale (DAS; Templer, 1970). The DAS
consists of 15 items and each is measured dichotomously (true/false) and then a score
out of 15 is calculated. Nine of the items are keyed true and six of the items are
keyed false. The DAS has also been converted to be measured on a seven-point
Likert scale (McMordie, 1979). To maintain consistency with the rest of the survey
instrument, in the current study, a five-point Likert scale was used. The DAS has
previously been tested for reliability and validity (Templer, 1970; McMordie, 1979)
and was included in the current study to provide evidence of critical care nurses’
comfort with death and dying.
In addition to the items from the NiPCAS and DAS, the Factors influencing the
provision of end-of-life care section of the survey instrument included items
generated from a review of the literature and the findings of phase one of this study.
The items in the Factors influencing the provision of end-of-life care section on the
survey instrument are measured using a five-point Likert scale in which 1 = strongly
disagree, 2 = disagree, 3 = neutral, 4 = agree and 5 = strongly agree. Although Kain
et al. (2009) located the neutral response to the far right of the scale in the NiPCAS
instrument to minimise response bias with participants choosing this option, in the
current study, the neutral response was located in the centre of the scale to maintain
consistency with the other sections of the instrument, avoiding respondent confusion.
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6.2.3 Demographic information
Items in the demographic information section were developed to provide consistency
with the Australian Institute of Health and Welfare (AIHW, 2011) Nursing and
Midwifery Labour Force 2009 survey and the Intensive Care Resources and Activity:
Australia and New Zealand 2007/2008 report (Drennan et al., 2010) to permit
comparison of the sample to the broader nursing and critical care nursing
populations. The demographic information collected included age, gender, location,
years of experience as a registered nurse, years of experience as a critical care nurse,
qualifications, current workplace, type of work, length of time since the participant
had provided direct patient care and the length of time since the participant had
provided end-of-life care.
6.3 Expert panel
In addition to the steps outlined by Lynn (1986), DeVellis’s (2003) guidelines for
developing a survey instrument include additional steps related to review of the
survey instrument by a panel of experts and pilot testing. This section outlines the
methods used in obtaining expert review of the survey instrument, while the methods
used in pilot testing are discussed in Section 6.4.
6.3.1 Participants
A purposive sampling technique was used to invite six registered nurses identified as
having expertise in critical care, palliative care and/or instrument development to
form a panel to review the survey instrument. The sample included an international
expert in end-of-life care in critical care settings. The purposive sampling technique
is an appropriate sampling strategy for the purpose of selecting participants who can
provide feedback on the content of the survey instrument. A sample size of six
experts is recommended when ascertaining the validity of an instrument by
calculating the content validity index (CVI). A sample of six enables at least one
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person to disagree with an item, while still maintaining the content validity of the
item within an acceptable range (Lynn, 1986; Polit & Beck, 2006).
6.3.2 Procedure
The panel were contacted via email (see Appendix 13.7) and invited to participate in
the expert review of the survey instrument. To enable the panel of experts to assess
the instrument, they were provided with an information sheet (Appendix 13.8)
detailing the purpose and scope of the survey, research questions, definitions of key
terms (end-of-life care, practices, context, evidence and facilitation) and the
measurement scale on which items in the survey are measured (Davis, 1992; Grant &
Davis, 1997; Lynn, 1986). Each panel member was also provided with a uniform
resource locator (URL) link to the online survey, where they could complete their
review. Key Survey software version 7.2 provided the platform for the online survey
during phase two of the current study.
The validity of an instrument is the degree to which it measures what it was
developed to measure (Polit & Beck, 2008). The panel of experts assessed the
content validity of the online survey instrument. The panel were asked to rate each
item for the relevance to end-of-life care in the critical care setting using a four-point
ordinal rating scale in which 1 = not relevant, 2 = somewhat relevant, 3 = quite
relevant and 4 = highly relevant (Davis, 1992; Grant & Davis, 1997; Lynn, 1986;
Polit & Beck, 2006). These relevance ratings were used to calculate a CVI to indicate
the perceived relevance of individual items (I-CVI) and the overall content validity
of the instrument, or scale content validity index (S-CVI), as assessed by the experts
(Lynn, 1986; Polit & Beck, 2006).
Face validity of the instrument was also assessed by asking the panel of experts to
provide comment on the content in regard to coverage of the domains of interest and
to suggest the addition, deletion and revision of individual items (Grant & Davis,
1997; Lynn, 1986; Polit, Beck, & Owen, 2007). The experts were also asked to
comment on the readability of the survey instrument.
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6.3.3 Data management and analysis
The I-CVI was calculated by hand from the number of experts that rated the item as
3 or 4 divided by the total number of experts. These individual item scores were then
combined and divided by the total number of items to produce an average CVI, that
reflects the overall content validity of the instrument (S-CVI) (Polit & Beck, 2006).
An I-CVI score of 0.80 or greater and an S-CVI score of 0.90 were considered
satisfactory (Grant & Davis, 1997; Lynn, 1986; Polit & Beck, 2006; Polit et al.,
2007). Individual items with an I-CVI less than 0.80 were deleted or modified.
Comments by the expert panel guided the development of additional new items (Polit
et al., 2007).
The findings of the analysis and the expert panel’s comments about the survey’s
content and readability were reviewed and discussed with the supervisory team.
Following analysis of the expert panel’s responses, the survey instrument was
revised and resent to the panel for further comment.
6.4 Pilot test
The final step in the development of the survey instrument in this study involved a
pilot test, to obtain preliminary evidence of the reliability and validity of the newly
developed survey instrument. Pilot testing also assessed the feasibility of methods
planned for use in the collection and analysis of quantitative data in phase three of
this study. An initial pilot test was undertaken in Semester 1, 2010. Some of the
scales of the instrument were not found to be robust measures of the constructs of
interest in this study. As a result, the instrument was revised and a repeat pilot test-
retest was undertaken in Semester 1, 2011, to reassess the validity and reliability of
the instrument. The setting and sample, procedure, and data management and
analysis used in pilot testing the survey instrument are described below.
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6.4.1 The setting and sample
The pilot test was conducted on a sample of registered nurses with experience in
critical care. A convenience sampling technique was used to invite registered nurses
currently employed in a critical care setting and enrolled in a postgraduate critical
care nursing subject at an Australian university to participate in the pilot test of this
study.
6.4.2 Procedure
Potential participants were contacted via an email distributed through the Key Survey
version 7.2 software (WorldAPP Key Survey, 2009) to individual students’
university email addresses. A copy of the email invitation, reminder email and study
information sheet sent to pilot test participants is provided in Appendices 13.9 and
13.11. The ‘capture respondent email address’ feature was used to enable the
researcher to view the list of email addresses of respondents who took the survey
(completes and incompletes) to enable follow-up reminder emails to be sent to
selected participants. This feature also captures individual email addresses on survey
responses, enabling the researcher to link data for the purposes of test-retest
reliability. In addition to completing the survey, the participants were provided with
space to comment on the readability and content of the survey instrument.
Reminder emails were sent to non-responders two and four weeks after initial
distribution. The survey was open for six weeks. Two weeks later, all students who
had participated by completing the survey were invited to complete the survey again
to permit test-retest reliability. This time frame is considered a reasonable period of
time to limit the possibility of participant responses changing as a result of
experience or changes in practices (Marx, Menezes, Horovitz, Jones, & Warren,
2003).
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6.4.3 Data management and analysis
Survey responses were exported from Key Survey into PASW version 18 for data
analysis. Cronbach’s alpha was calculated to identify the internal consistency of
items in each scale identified a priori. The corrected item-scale correlation and the
Cronbach’s alpha if an item was deleted were reviewed for each item and items were
considered for deletion if they were found to influence the reliability of the scale
(DeVellis, 2003).
Test-retest reliability was conducted by calculating the Pearson product-moment
correlation coefficient (r) to determine the reliability of the survey instrument in
obtaining consistent results on repeated measures (Polit & Beck, 2008). Cohen’s
(1988) criteria for interpreting the size of correlation coefficients with ±.1 a small
effect, ±.3 a medium effect and ±.5 a large effect, were used in the reporting of
results. Reliability coefficients of greater than .70 were considered satisfactory (Hair,
Black, Babin, Anderson, & Tatham, 2006), although lower reliability coefficients
may be considered satisfactory when measuring affective domains or in exploratory
research (Field, 2009; Hair et al., 2006).
6.5 Summary
In summary, the development of a survey instrument was necessary to achieve the
purpose of this study and answer the research questions. The scales in the survey
instrument and the items generated to capture the content of the scales were
empirically derived from the findings of phase one of the current study and an
extensive review of the literature. A selection of items from the NiPCAS and the
DAS were also included in the survey instrument. Review of the survey instrument
by an expert panel provided evidence of the content validity. Pilot testing was also
undertaken to obtain preliminary evidence of the reliability of the survey instrument
and feasibility of methods planned for use in phase three of this study. The results
obtained from expert review and pilot testing of the survey instrument are provided
in the next chapter.
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7 PHASE TWO RESULTS
7.1 Introduction
Review by an expert panel and pilot testing of the survey instrument provided
preliminary evidence of the validity and reliability of the survey instrument
developed for this study. The results of phase two of this study also informed the
modifications undertaken to the survey instrument and minor changes to the methods
planned for use in phase three. This chapter documents the findings from the expert
review and pilot test of the survey instrument. Specifically, this chapter will address
the composition of the expert panel, the content validity of the survey instrument
based on analysis of the ratings provided by the expert panel, the characteristics of
participants involved in pilot testing the instrument and the results of internal
consistency and test-retest reliability of the scales of the survey instrument proposed
a priori.
7.2 Expert panel
Initially, seven registered nurses were identified as potential participants and invited
to join the current study’s expert panel and participate in the review of the survey
instrument. Four of these registered nurses agreed to participate, completing a review
of the survey instrument online. Two registered nurses declined to participate, citing
workload issues and perceived lack of expertise in the topic under investigation.
Another registered nurse declined to participate and instead referred the researcher to
a nursing colleague who was more closely aligned with the topic under investigation
and, upon invitation, this person agreed to participate. A further two potential
participants were then approached to participate, and one agreed to participate and
the other did not respond to the invitation. The final panel, therefore, comprised six
participants. These participants were employed in academic or research positions and
their primary areas of expertise are outlined in Table 7-–1. Clinician views on the
survey instrument were obtained during the pilot testing phase of instrument
development in this study.
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Table 7-1: Expert panel members
Reviewer Area of expertise
1 Neonatal intensive care and instrument development
2 Critical care nursing
3 Palliative care
4 International expert in end-of-life care in intensive care settings
5 Palliative care
6 Critical care, end-of-life care and instrument development
The CVI for the survey instrument overall (S-CVI) and for each item (I-CVI) was
calculated from the relevance ratings provided by the expert panel. The initial S-CVI
for the survey instrument was .88. The initial S-CVI for the Critical care nurses’
end-of-life care practices section of the survey instrument was .90 and the CVI for
each item (I-CVI) in this section of the survey instrument is provided in Table 7–2.
Table 7-2: Content validity index for each item (I-CVI) in the Critical care
nurses’ end-of-life care practices section of the survey instrument
Item I-CVI
Patient and family centred decision making
Provide the family with options about the care of the patient 1.00
Ask the family if they would like to be involved in the care of the patient 1.00
Ask the family their preferences for the patient’s care 1.00
Attend family meetings with the medical team 1.00
Reassure the family that they are not responsible for any EOL decisions made .66
Ask the family about their knowledge of the patient’s wishes for EOLC .83
Explaining and providing information
Answer the family’s questions about the patient’s condition 1.00
Fully inform the family about all aspects of the plan of care 1.00
Explain all interventions undertaken in the care of the patient 1.00
Provide information to the family about the dying process 1.00
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Item I-CVI
Explain to the family what is happening to the patient 1.00
Encourage the family to reminisce about the patient 1.00
Listen to the family reminisce about the patient .83
Continuity of Care
Arrange for transfer of the patient out of the ICU after a decision to withdraw
treatment .50
Document the family’s preference for the care of their relative .83
Introduce the nursing staff on the oncoming shift to the patient and family .83
Handover the family’s preference for the patient’s EOLC to the oncoming
nurse 1.00
Emotional and practical support for patients and families
Permit the family to visit outside of regular visiting hours 1.00
Adhere to unit policy on the number of visitors at the patient’s bedside .33
Encourage the family to talk to the patient 1.00
Encourage the family to touch the patient 1.00
Provide the family with access to a private room to congregate 1.00
Arrange for a counsellor or social worker to meet with the family .83
Stay in the room with the patient and family .66
Ask the family about their feelings .83
Ask the family how they are coping 1.00
Provide opportunities for the family to create positive memories .83
Comfort care—environmental factors
Move the patient to a more private area of the unit 1.00
Create a calm, peaceful environment 1.00
Turn off monitoring equipment 1.00
Silence alarms on all equipment 1.00
Symptom management and comfort care
Administer fluids to the patient to maintain hydration .66
Keep the patient sedated .66
Provide adequate pain management 1.00
Provide care to maintain patient hygiene 1.00
Provide pressure area care 1.00
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Item I-CVI
Remove the endotracheal tube if the patient is breathing spontaneously 1.00
Maintain the patient’s airway using oro/endotracheal suction .66
Spiritual support
Ask the family about spiritual needs 1.00
Offer to arrange for a spiritual advisor or pastoral care representative to visit
the patient and family 1.00
Support the family to participate in cultural practices related to dying 1.00
Ask the family about cultural needs 1.00
Note. EOL = end of life; EOLC = end-of-life care; ICU = intensive care unit.
The initial S-CVI for the Factors influencing the provision of end-of-life care section
of the survey instrument was .84 and the I-CVI in this section of the survey
instrument is provided in Table 7–3.
Table 7-3: Content validity index for each item (I-CVI) in the Factors
influencing the provision of end-of-life care section of the survey instrument
Item I-CVI
Organisational culture
The medical staff support EOLC for patients in my unit 1.00
In my Unit, the team expresses its opinions, values and beliefs about
providing care to dying patients .83
All members of the health care team in my Unit agree with and support EOLC
when it is implemented for a patient 1.00
After a decision to withdraw life-sustaining treatment is made, nurses are left
to manage the care of the patient 1.00
After a decision is made to withdraw treatment, the intensive care medical
team in my unit reduce their contact with the patient .66
In my Unit, the staff go beyond what they feel comfortable with in using
technological life support .83
In my Unit, staff are asked by families to continue extending care beyond .50
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Item I-CVI
what they feel is right
EOLC should be allocated to experienced nurses .80
Resources
The physical environment of my Unit is ideal for providing EOLC 1.00
My Unit is adequately staffed for providing the needs of dying patients and
their families 1.00
When a patient dies in my Unit, I have sufficient time to spend with the
family 1.00
There are policies/guidelines to assist in the delivery of EOLC in my Unit .83
Lack of staff results in no ‘down time’ between the death of a patient and the
admission of the next patient .83
Patient and family preferences
In my Unit, families are involved in decisions about their dying relative 1.00
In my Unit, withdrawal of treatment is delayed whilst waiting for relatives to
arrive 1.00
Nursing education and experience
I have received in-service education that assists me to support and
communicate with families of dying patients .83
I have had experience of providing EOLC to patients and their families 1.00
I am often exposed to death in the critical care environment .83
EOLC is necessary in critical care nursing education .83
Emotional support
When a patient dies in my Unit, counselling is available if I need it 1.00
In my Unit, nurses are expected to cope with death and dying 1.00
I feel supported when caring for a patient at the EOL 1.00
After caring for a patient at the EOL, my colleagues will ask me if I am OK 1.00
Formal debriefing occurs after providing EOLC 1.00
Staffing is arranged to allow nurses to have a rest break after the death of a
patient .66
Nurses’ end-of-life care values and beliefs
My previous experiences of providing EOLC have been rewarding 1.00
I feel a sense of personal failure when a patient dies .50
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Item I-CVI
It is a privilege to care for a patient at the EOL and their family 1.00
Nurses can influence the patient and family’s experience of EOLC 1.00
EOLC is against the values of critical care nursing .16
EOLC is as important as curative care in the critical care environment .83
Curative care is more important than EOLC in the critical care environment .33
My personal attitudes about death affects my willingness to deliver EOLC .83
Coordination of care delivery
Patients should be transferred out of intensive care after a decision is made to
withdraw life-sustaining treatment .66
Nurses that know the patient and family should be allocated to care for the
patient to maintain continuity of care .83
Note. EOL = end of life; EOLC = end-of-life care.
Items with a CVI below .80 were reviewed. Seven items were deleted as they were
not considered relevant to end-of-life care in the adult critical care context, were
similar to other items rated as relevant by the expert panel and/or achieved a very
low CVI (see Table 7–4). Following deletion of these seven items, the overall
content validity index of the survey instrument (S-CVI) was recalculated at .91 and
identified as at a satisfactory level (Grant & Davis, 1997; Lynn, 1986; Polit & Beck,
2006; Polit et al., 2007). The revised S-CVI for the Critical care nurses’ end-of-life
care practices section of the survey instrument was .93 and the revised S-CVI for the
Factors influencing the provision of end-of-life care section of the survey instrument
was .89.
83
Table 7-4: Items deleted from the survey instrument following review by the
expert panel
Item
Reassure the family that they are not responsible for any EOL decisions made
Arrange for transfer of the patient out of the ICU after a decision to withdraw
treatment
Adhere to unit policy on the number of visitors at the patient’s bedside
In my Unit, staff are asked by families to continue extending care beyond what they
feel is right
EOLC is against the values of critical care nursing
Staffing is arranged to allow nurses to have a rest break after the death of a patient
Patients should be transferred out of intensive care after a decision is made to
withdraw life-sustaining treatment
Note. EOL = end of life; EOLC = end-of-life care; ICU = intensive care unit.
Although the CVI of the items I feel a sense of personal failure when a patient dies
(I-CVI = .50) and After a decision is made to withdraw treatment, the intensive care
medical team in my unit reduce their contact with the patient (I-CVI = .66) were low,
these items were retained in the survey. Death as failure and the withdrawal of the
medical team following withdrawal of life-sustaining treatment were identified as
important items that may influence the provision of end-of-life care by participants
currently working as clinicians in an ICU in phase one of this study. In addition, the
perception of death as failure and the withdrawal of the medical team following
withdrawal of life-sustaining treatment have been identified in other previous
qualitative research undertaken in Australia (Halcomb et al., 2004; Heland, 2006).
The CVI of items pertaining to symptom management and the physical care of the
patient, Keep the patient sedated (I-CVI = .66), Maintain the patient’s airway using
oro/endotracheal suction (I-CVI = .66) and Administer fluids to the patient to
maintain hydration (I-CVI = .66) were below the level deemed satisfactory (I-CVI =
.80). However, these items were retained in the survey as they had been identified in
84
the previous literature and/or the phase one findings of this study as practices
undertaken by critical care nurses in the provision of end-of-life care.
The item Stay in the room with the patient and family (I-CVI = .66) was modified to
include if the family wants, acknowledging that practices may be adapted to meet the
needs of different families. The item Curative care is more important than end-of-life
care in the critical care environment (I-CVI = .33) was revised to read End-of-life
care is as important as curative care in the critical care environment. Following
review by the expert panel, two additional items were added to the survey
instrument: Ask family members if there is anyone that they would like to be there
and In my unit, when a diagnosis with a likely poor outcome is made, families are
informed of their end-of-life care options.
After modifications were made to the survey instrument, it was recirculated to the
expert panel and additional feedback from four of the experts was provided by return
email. This feedback consisted of suggestions for minor changes such as deleting
‘Australian’ from the survey title, standardising the use of either ‘unit’ or ‘Unit’ and
the formatting and location of response options within the survey instrument.
7.3 Pilot test
During Semester 1, 2010, an initial pilot test of the survey instrument was
undertaken. In total, 17 out of 51 critical care nurses enrolled in a postgraduate
nursing subject at an Australian university participated in the initial pilot test of the
instrument, a response rate of 33%. Retest of the survey was completed by eight
participants. A further three accessed the survey and provided demographic
information but did not complete the rating scales or subsequent questions.
The findings of this initial pilot test revealed that some of the a priori scales of the
survey instrument were not robust measures of the constructs of interest in this study.
As a result, the instrument was significantly revised. The item I have had experience
providing end-of-life care to dying patients and their families was deleted as this
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information was obtained from participant response to the item in the demographic
section: Please specify the last time that you provided end-of-life care to a patient in
a critical care unit. The items My previous experiences of providing end-of-life care
have been rewarding and Formal debriefing occurs after providing end-of-life care
were also deleted. These items were considered ambiguous and their intent was
captured by other items in the survey instrument. Two items were also modified to
read Keep the patient sedated, if appropriate and Administer analgesia via
intravenous infusion.
Additional items were added to the survey instrument following reflection on the
findings of the initial pilot test, the findings of phase one of this research study and
further review of the previous literature of end-of-life care in critical care settings.
Review of the PARIHS framework guiding the development of the Factors
influencing the provision of end-of-life care section and consideration of the items
within each scale proposed a priori assisted in identifying additional items relevant to
the constructs of interest in this research study. Although these additional items,
presented in Table 7–5 and Table 7–6, are listed under the scale headings proposed a
priori, only section headings (Demographics, Practices and Factors) were included in
the final survey instrument circulated to participants in phases two and three of this
study and the a priori scale headings were not included.
Table 7-5: Additional items included in the Critical care nurses’ end-of-life care
practices section of the survey instrument
A priori scale Additional items
Continuity of care Ask the critical care team to document the plan of care /
treatment orders
Comfort care—
Environmental
factors
Adjust (dim or turn off) the lighting around the patient’s bed
space
Play music
Put up photographs of the patient, family members and/or pets
Cluster/coordinate care to minimise interruptions and provide
privacy for the patient and family
86
Draw curtains to provide privacy for the patient and family
Place chairs around the bed for the family
Symptom
management and
comfort care
Remove the endotracheal tube if the patient is breathing
spontaneously
Initiate (or implement) weaning from mechanical ventilation
once the decision to withdraw mechanical ventilation has been
made (ie. reduce FiO2, rate and/or tidal volume)
Administer medications to prevent/minimise dyspnoea and
respiratory secretions
Regularly obtain and document patient vital signs during the
provision of end-of-life care
Table 7-6: Additional items included in the Factors influencing the provision of
end-of-life care section of the survey instrument
A priori scale Additional items
Organisational
culture
In my unit, EOLC is mostly allocated to junior nurses
In my unit, nurses view the provision of EOLC as an important
component of critical care nursing
Resources Private rooms are available to care for the patient at the EOL
My unit is adequately equipped (chairs/recliners/waiting room
etc.) to support the comfort needs of the family during EOLC
When a patient dies in my Unit, nurses have sufficient time to
spend with the family
Patient and family
preferences
In my unit, the patient’s preferences (or their likely preference
according to family) for EOLC are considered
In my unit, families are given adequate time to consider
decisions to withhold/withdraw treatment for the patient (their
relative)
In my unit, family meetings with the health care team are held
to resolve differing views about a patient’s treatment
Nursing education
and experience
I have received in-service education that assists me to provide
care and manage patient symptoms at the EOL
87
My undergraduate nursing education included EOLC content
My postgraduate nursing education included EOLC content
relevant to the critical care context
I draw on evidence from the literature to provide EOLC to
patients and their families
I feel adequately prepared to care for patients at the EOL
I don’t know what to say to the family of a patient at the EOL
I have limited knowledge of symptom management for
patient’s at the EOL
I have learnt from other nurses how to provide EOLC
Nurse practice
knowledge
Analgesia should be titrated to keep the patient comfortable
even if this hastens death
Pressure area care should continue to be provided for a patient
at the EOL
EOLC should include care of the patient’s family
Abrupt withdrawal of mechanical ventilation may contribute to
dyspnoea
When withdrawing mechanical ventilation at the EOL,
ventilator weaning (such as reductions in FiO2 and PEEP)
should occur prior to extubating the patient or placing the
patient on a T-piece
Intravenous fluids should be provided to maintain hydration for
the patient at the EOL
The provision of EOLC requires emotional detachment
It is OK to cry when a patient dies
Emotional support My supervisors/managers ensure staff caring for patients at the
EOL are supported
My colleagues appreciate the stressors associated with caring
for patients at the EOL
My supervisors/managers provide guidance that assists me to
provide EOLC
Nurses’ end-of-life
care values and
My own personal experiences of death have influenced the care
I provide to patients at the EOL
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beliefs
Coordination of
care delivery
In my unit, a plan of care for the patient is clearly documented
by the medical team after a decision to withhold or withdraw
treatment is made
In my unit, the intensive care team and the patient’s primary
medical or surgical team agree on a plan of care
In my unit, patients remain in ICU for EOLC following a
decision to withhold or withdraw treatment
Note. EOL = end of life; EOLC = end-of-life care; ICU = intensive care unit.
Due to the significant adjustments made to the survey instrument, it was determined
that a repeat pilot test-retest was required to reassess the validity and reliability of the
instrument prior to circulation of the instrument to a national sample in phase three
of this research study. The findings presented in the remainder of this chapter refer to
the results of the repeat pilot test and retest of the survey instrument.
7.3.1 Demographic information
During Semester 1, 2011, 62 potential participants were invited to participate in the
repeat pilot test of the survey instrument. In total, 31 critical care nurses accessed and
commenced the survey, a response rate of 50%. Five participants only partially
completed the survey. Of these, responses from the two participants who completed
both the demographic information section and the Factors influencing the provision
of end-of-life care section were included in the data analysis. Responses from the
three participants who only completed the demographic information section and
partially completed the Factors influencing the provision of end-of-life care section
were deleted and not included in the data analysis. The final response rate was 45%
(n = 28). Test-retest reliability of the survey instrument was obtained by inviting
participants to complete the survey instrument again, two weeks later. This retest of
the survey was completed by 11 participants. A further two accessed the survey and
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provided demographic information but did not complete the rating scales or
subsequent questions.
The mean age of registered nurses completing the Semester 1, 2011, pilot test of the
survey instrument was 32.2 years (SD = 7.9) and 17.8% of participants were male (n
= 5). Years of experience in nursing ranged from one to 39 years with the majority of
participants (57.1%) having five years or less experience in nursing. Years of
experience working as a nurse in critical care ranged from one to 12 years with a
mean of 4.7 years (SD = 3.3). The participants for the pilot test were recruited from a
postgraduate critical care nursing subject, and their experience in nursing and critical
care most likely reflects registered nurses pursuing further studies in their chosen
specialty area of nursing practice. Table 7–7 outlines the characteristics of
participants in the Semester 1, 2011, pilot test. The majority of participants reported
that their highest qualification in nursing was an undergraduate degree or hospital
certificate (89.2%). Only 10.7% of participants had a postgraduate degree; however,
all participants were currently enrolled in a postgraduate critical care nursing course.
Table 7-7: Demographic characteristics of pilot test participants (n = 28)
Characteristic %
Age
<25 28.6
25–29 10.7
30–34 25
35–39 17.9
40–44 14.3
45+ 3.6
Gender
Female 82.1
Male 17.9
Nursing experience
0–5 57.1
6–10 17.9
90
11–15 14.3
16–20 0
20+ 10.7
Critical care experience
0–5 75
6–10 14.3
11–15 10.7
The majority of participants were currently employed in a critical care unit located in
a major city (78.6%). The remainder of participants reported employment in a critical
care unit in a regional area (21.4%). Most of the participants (92.9%) were employed
in a general ICU, while the remainder were employed in a combined ICU, CCU and
HDU (high dependency unit). Direct patient care was identified as the primary role
of the majority of participants in their current employment (92.9%). All participants
in the Semester 1, 2011, pilot test had provided direct patient care within the last
month and end-of-life care within the last year (see Table 7–8).
Table 7-8: Pilot test participants’ current workplace and participation in
nursing work (n = 28)
Characteristic %
Current workplace
General ICU (integrated medical/surgical including
ICU managed HDU and specialty ICUs)
92.9
Integrated ICU/CCU/HDU 7.1
Type of work
Clinical (direct patient care) 96.4
Nursing management (administration) 3.6
Time since provision of direct patient care
Within the last week 92.9
Within the last month 7.1
Time since provision of end-of-life care
91
Within the last week 3.6
Within the last month 32.1
Within the last 12 months 64.3
Note. ICU = intensive care unit; CCU = coronary care unit; HDU = high dependency
unit.
7.3.2 Critical care nurses’ end-of-life care practices
In the pilot test, the Critical care nurses’ end-of-life care practices section of the
survey instrument consisted of 50 items across seven a priori scales conceptually
derived from evidence in the literature and supported by the findings of phase one of
this study. In the following section, each of these scales will be described and the
results of internal consistency and test-retest reliability will be reported.
Scale: Patient and family centred decision making
The items in the patient and family centred decision making scale pertain to the
practices undertaken by the individual nurse (survey respondent) to facilitate
involvement of the family in care planning and decision making for the patient (their
relative) at the end of life. Family was selected as the focus due to the inability or
limited ability of the patient in critical care to participate. In the survey instrument,
participants were asked to rate the frequency with which they engage in the practice
identified in each item. The items contributing to the patient and family centred
decision making scale are presented in Table 7–9. Internal consistency of this scale
was satisfactory with a Cronbach’s alpha of .81; however, only a moderate
correlation coefficient (r = .35) that was not statistically significant was obtained on
test-retest reliability of this scale.
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Table 7-9: Items in the patient and family centred decision making scale
Item
Provide the family with options about the care of the patient
Ask the family if they would like to be involved in the care of the patient
Ask the family their preferences for the patient’s care
Attend family meetings with the intensive care team
Ask the family about their knowledge of the patient’s wishes for EOLC
Note. EOLC = end-of-life care.
Scale: Explaining and providing information
The items in this scale include practices undertaken by the individual nurse (survey
respondent) to explain and provide information to the family of the patient at the end
of life (see Table 7–10). Participants rated the frequency with which they undertake
each item in the provision of end-of-life care. This scale achieved a Cronbach’s alpha
of .84 indicating the scale is internally consistent; however, once again the test-retest
reliability of this scale obtained a moderate correlation coefficent (r = .53) that was
not statistically significant (see Table 7–16).
Table 7-10: Items in the explaining and providing information scale
Item
Answer the family’s questions about the patient’s condition
Fully inform the family about all aspects of the plan of care
Explain all interventions undertaken in the care of the patient
Provide information to the family about the dying process
Explain to the family what is happening to the patient
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Scale: Continuity of care
The continuity of care scale was designed to measure the practices undertaken by the
individual nurse (survey respondent) to smooth transitions between individual care
providers (both nurses and other health care providers) for the family and coordinate
care for the patient at the end of life. This scale was originally included in the
instrument as it is one of the seven domains of quality end-of-life care identified by
Clarke et al. (2003). The indicators and associated behaviours in this domain relate
mainly to the transfer or non-transfer of patients from critical care (Clarke et al.,
2003). In phase one of this study, participants reported that it was usual practice that,
after withdrawal of treatment, patients remained in their ICU for end-of-life care and
this view was supported by the expert panel.
The items in the continuity of care scale, listed in Table 7–11, were conceptually
derived and developed from the literature on maintaining continuity of care and
coordination of care as well as the findings from phase one of this study. The items
in this section are designed to measure practice, rather than barriers to or facilitators
of continuity of care, which is addressed in the Factors influencing the provision of
end-of-life care section of the survey instrument. This scale obtained a Cronbach’s
alpha of .61 and a moderate correlation coefficient (r = .46) on test-retest reliability
that was not statistically significant and, therefore, does not appear to provide a
robust measure of the construct continuity of care. Although the internal consistency
for this scale was weak, it was considered a theoretically important construct, and
further testing of this construct with a larger sample in phase three of this study was
needed. Additionally, in response to these results an item: Liaise with other members
of the healthcare team to meet identified needs of the patient and family, was added
to the survey instrument for further testing in phase three of this study.
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Table 7-11: Items in the continuity of care scale
Item
Document the family’s preference for the care of the patient
Introduce the nursing staff on the oncoming shift to the patient and family
Hand over the family’s preferences for the patient’s EOLC to the oncoming nurse
Ask the intensive care team to document the plan of care/treatment orders
Note. EOLC = end-of-life care.
Scale: Emotional and practical support for patients and families
The items in this scale include practices undertaken by the individual nurse (survey
respondent) to provide emotional and practical support for patients and families. The
12 items in this scale, listed in Table 7–12, obtained a Cronbach’s alpha of .69 and a
moderate correlation coefficient (r = .45) that was not statistically significant on test-
retest reliability (see Table 7–16). All items were retained in the survey instrument
for circulation to potential participants in phase three of this study.
Table 7-12: Items in the emotional and practical support for patients and
families scale
Item
Encourage the family to reminisce about the patient
Listen to the family reminisce about the patient
Permit family to visit outside of regular visiting hours
Encourage the family to talk to the patient
Encourage the family to touch the patient
Provide the family with access to a private room to congregate
Ask family members if there is anyone they would like to be there
Arrange for a counsellor or social worker to meet with the family
Stay in the room with the patient and family, if the patient and family wants
Ask the family about their feelings
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Ask the family how they are coping
Provide opportunities for the family to create positive memories
Scale: Comfort care—environmental factors
The comfort care—environmental factors scale consisted of items related to the
practices undertaken by the individual nurse (survey respondent) to create a
comfortable physical environment for patients at the end of life and their families.
The items included in this scale are outlined in Table 7–13. A Cronbach’s alpha of
.66 was obtained on pilot testing of this scale. A moderate correlation coefficient (r =
.48) that was not statistically significant was obtained on test-retest reliability of this
scale. Despite these results, the environment is considered important to the provision
of a positive experience of end-of-life care for patients and their families and,
therefore, the items in this scale were retained in the final version of the survey
instrument.
Table 7-13: Items in the comfort care—environmental factors scale
Item
Move the patient to a more private area of the unit
Create a calm, peaceful environment
Turn off monitoring equipment
Silence alarms on all equipment
Adjust (dim or turn off) the lighting around the patient’s bed space
Play music
Put up photographs of the patient, family members and/or pets
Cluster/coordinate care to minimise interruptions and provide privacy for the patient
and family
Draw curtains to provide privacy for the patient and family
Place chairs around the bed for the family
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Scale: Symptom management and comfort care
The items in the symptom management and comfort care scale incorporated the
practices undertaken by the individual nurse (survey respondent) to relieve
symptoms and provide physical care to the patient at the end of life (see Table 7–14).
The internal consistency of this scale was considered satisfactory with a Cronbach’s
alpha of .73. Although a large correlation coefficient was obtained on test-retest
reliability (r = .58), it was not statistically significant. The practices undertaken in the
provision of physical care of the patient including symptom management at the end
of life are important, and these items were retained in the final version of the survey
instrument.
Table 7-14: Items in the symptom management and comfort care scale
Item
Administer fluids to the patient to maintain hydration
Keep the patient sedated, if appropriate
Administer analgesia via intravenous infusion
Provide care to maintain patient hygiene
Provide pressure area care
Maintain the patient’s airway using oro/endotracheal suction
Remove the endotracheal tube if the patient is breathing spontaneously
Initiate (or implement) weaning from mechanical ventilation once the decision to
withdraw mechanical ventilation has been made (i.e., reduce FiO2, rate and/or tidal
volume)
Administer medications to prevent/minimise dyspnoea and respiratory secretions
Regularly obtain and document patient vital signs during the provision of EOLC
Note. EOLC = end-of-life care.
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Scale: Spiritual support
The items in the spiritual support scale, presented in Table 7–15, include practices
undertaken by the individual nurse (survey respondent) to identify and support the
spiritual and cultural needs of the family. The items in this scale were found to be
internally consistent (α = .90), although the test-retest reliability of this scale was low
(r = .33).
Table 7-15: Items in the spiritual support scale
Item
Ask the family about spiritual needs
Offer to arrange for a spiritual advisor or pastoral care representative to visit the
patient and family
Ask the family about cultural needs
Support the family to participate in cultural practices related to dying
Although the majority of a priori scales in the Critical care nurses’ end-of-life care
practices section of the survey instrument were found to have internal consistency,
only low to moderate correlation coefficients were obtained on test-retest reliability
on all scales in the practices section (see Table 7–16). A limitation of test-retest as a
measure of reliability is that participants’ responses can change over time due to
changes in knowledge, experience and attitude, for example (Polit & Beck, 2010). It
is possible that participants’ awareness of end-of-life care practices was heightened
following initial completion of the survey and their engagement in selected practices
changed between completing the surveys. These changes in practice may only be
short term in response to raised awareness. In addition, only a very small number of
participants completed the survey twice. This small sample size may contribute to
variability in responses, as slight changes in participant responses to individual items
can affect the overall reliability of the scales. Despite the low to moderate correlation
coefficients obtained on test-retest reliability in this section of the survey instrument,
the internal consistency within the scales was generally satisfactory. Therefore, this
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section of the survey instrument was considered adequate to achieve the purpose of
this study, identifying the frequency of engagement in selected end-of-life care
practices as reported by critical care nurses.
Table 7-16: Internal consistency and test-retest reliability of the a priori scales
in the Critical care nurses’ end-of-life care practices section of the survey
instrument
Scale α r
Patient and family centred decision making .81 .35
Explaining and providing information .84 .53
Continuity of care .61 .46
Emotional and practical support for patients and families .69 .45
Comfort care—environmental factors .66 .48
Symptom management and comfort care .73 .58
Spiritual support .90 .33
*p < .05, two-tailed.
7.3.3 Factors influencing the provision of end-of-life care
As previously discussed, the three key elements of context, evidence and facilitation
proposed in the PARIHS framework provided the framework guiding the design of
the Factors influencing the provision of end-of-life care section of the survey
instrument. This section comprised of 58 individual items across eight scales
proposed a priori within the three key elements. Each scale will be described and the
results of internal consistency and test-retest reliability will be outlined below.
Context
The key element of context was represented in the survey instrument in this study by
the scales organisational culture and resources.
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Scale: Organisational culture
In this study, organisational culture is defined as the values and beliefs in relation to
end-of-life care generally shared within the critical care unit as perceived by the
individual nurse (survey respondent). The items in this scale are listed in Table 7–17.
The first three items in this scale are originally from Kain et al.’s (2009) organisation
subscale. Kain et al.’s organisation subscale consisted of five items and achieved a
Cronbach’s alpha of .73. Three of Kain et al.’s items were retained in the
organisational culture scale in the current study; however, two of the items did not fit
within the construct context, as defined in the framework guiding this study (Kitson
et al., 1998) and were instead included in the scale of ‘Patient and family
preferences’ within the key element of ‘Evidence’.
Four additional items were developed and included, based on the findings from phase
one of this study and the literature review. The internal consistency of this scale was
.58. Although deletion of the item In my Unit, end-of-life care is mostly allocated to
junior nurses from this scale increased the alpha to .66, this item was retained in the
survey instrument for phase three of this study to identify the relevance of this item
in the national critical care population.
The correlation coefficient obtained from test-retest reliability was slightly lower
than the generally accepted satisfactory level of .70; however, it was statistically
significant (r = .61, p < .05).
Table 7-17: Items in the organisational culture scale
Item
The medical staff support EOLC for dying patient in my unit
In my unit, the team expresses its opinions, values and beliefs about providing care
to dying patients
All members of the healthcare team in my Unit agree with and support EOLC when
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it is implemented
After a decision is made to withdraw life-sustaining treatment, less time is spent with
the patient by the critical care medical team
After a decision is made to withdraw life-sustaining treatment, nurses are left to
manage the care of the patient
In my unit, EOLC is mostly allocated to junior nurses
In my unit, nurses view the provision of EOLC as an important component of critical
care nursing
Note. EOLC = end-of-life care.
Scale: Resources
Resources refer to the availability of factors, both physical and human, within the
critical care unit to support the provision of end-of-life care as perceived by the
individual nurse (survey respondent). This scale proposed a priori comprised of eight
items (see Table 7–18). The first, fourth and fifth items in this scale were from Kain
et al.’s (2009) instrument. The remaining items were developed from the findings of
phase one of this study and the literature review. The item Lack of staff results in no
‘down time’ between the death of a patient and the admission of the next patient was
reverse coded prior to data analysis.
The Cronbach’s alpha of this scale in pilot testing was .60 and achieved a large
correlation coefficient on test-retest reliability that was statistically significant (r =
.80, p < .01). Based on these results, all items were retained in the survey instrument
for use in phase three of this study.
Table 7-18: Items in the resources scale
Item
The physical environment of my unit is ideal for providing EOLC
Private rooms are available to care for the patient at the EOL
My unit is adequately equipped (chairs/recliners/waiting room etc.) to support the
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comfort needs of the family during EOLC
My unit is adequately staffed for providing the needs of dying patients and their
families
When a patient dies in my Unit, nurses have sufficient time to spend with the family
There are policies/guidelines to assist in the delivery of EOLC in my Unit
Lack of staff results in no ‘down time’ between the death of a patient and the
admission of the next patient
When a patient dies in my Unit, families have sufficient time to spend with the
patient
Note. EOL = end of life; EOLC = end-of-life care.
Evidence
The key element of evidence was represented by three scales in the survey
instrument developed for the current study. The scales patient and family
preferences, nursing education and experience and nurse practice knowledge are
described in the following section and the results of internal consistency and test-
retest reliability for each scale are presented.
Scale: Patient and family preferences
Patient and family preferences is defined as the involvement of families in care
planning and decision making in relation to end-of-life care of patients (their
relatives) in the critical care unit as perceived by the individual nurse (survey
respondent). The first two items in this scale were drawn from Kain et al.’s (2009)
instrument, while the remaining items, presented in Table 7–19, were empirically
derived from the findings of phase one of this study and the review of the literature.
The Cronbach’s alpha of this scale in pilot testing was .79, indicating satisfactory
internal consistency. Test-retest reliability of this scale was also satisfactory with a
large correlation coefficient that was statistically significant obtained in pilot testing
(r = .68, p < .05). No changes to this scale were considered necessary prior to its
inclusion in the final survey instrument for use in phase three of this study.
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Table 7-19: Items in the patient and family preferences scale
Item
In my unit, families are involved in decisions about the dying patient
In my unit, when a diagnosis with a likely poor outcome is made, families are
informed of EOLC options
In my unit, withdrawal of treatment is delayed whilst waiting for relatives of the
patient to arrive
In my unit, the patient’s preferences (or their likely preference according to family)
for EOLC are considered
In my unit, families are given adequate time to consider decisions to
withhold/withdraw treatment for the patient (their relative)
In my unit, family meetings with the health care team are held to resolve differing
views about a patient’s treatment
Note. EOLC = end-of-life care.
Scale: Nursing education and experience
The items in this scale refer to the individual nurses’ participation in educational
activities incorporating end-of-life care content and their knowledge of end-of-life
care that may be gained from either educational opportunities or personal
experiences of death and dying (see Table 7–20). In this scale, the items I don’t know
what to say to the family of a patient at the end of life and I have limited knowledge
of symptom management for patient’s at the end-of-life were reverse coded.
Following analysis of the pilot test participants’ responses, the internal consistency
of this scale was deemed satisfactory with a Cronbach’s alpha of .75 and a large
correlation coefficient that was statistically significant was obtained through test-
retest reliability (r = .77, p < .01). Once again, all items were retained, unchanged for
inclusion in the final version of the survey instrument.
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Table 7-20: Items in the nursing education and experience scale
Item
I have received in-service education that assists me to support and communicate with
families of dying patients
I have received in-service education that assists me to provide care and manage
patient symptoms at the end-of-life
My undergraduate nursing education included EOLC content
My postgraduate nursing education included EOLC content relevant to the critical
care context
I draw on evidence from the literature to provide EOLC to patients and their families
I feel adequately prepared to care for patients at the EOL
I don’t know what to say to the family of a patient at the EOL
I have limited knowledge of symptom management for patient’s at the EOL
I am often exposed to death in the critical care environment
I have learnt from other nurses how to provide EOLC
Note. EOL = end of life; EOLC = end-of-life care.
Scale: Nurse practice knowledge
The items in this scale were designed to measure aspects of nurse knowledge in
relation to end-of-life care (see Table 7–21). The item The provision of end-of-life
care requires emotional detachment was taken from the Palliative Care Quiz for
Nursing (PCQN; Ross, McDonald, & McGuinness, 1996) and required reverse
coding prior to testing the internal consistency and reliability of this scale. The
remaining items were empirically derived from the literature and the findings of
phase one of this study.
The internal consistency of this scale was found to be low, with a Cronbach’s alpha
of .41 obtained. This finding indicates that the items in this scale may be measuring
discrete concepts rather than a single construct. A large correlation coefficient that
was statistically significant (r = .86, p < .01) was achieved on test-retest reliability,
indicating, as expected, that participant responses to these items remain stable across
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time. Although the internal consistency of the scale was not satisfactory, each of the
items was considered to measure an aspect of end-of-life care of interest to this
study. Therefore, all items were retained in the final version of the survey instrument
distributed in phase three of this study.
Table 7-21: Items in the nurse practice knowledge scale
Item
Analgesia should be titrated to keep the patient comfortable even if this hastens death
Pressure area care should continue to be provided for a patient at the EOL
EOLC should include care of the patient’s family
Abrupt withdrawal of mechanical ventilation may contribute to dyspnoea
When withdrawing mechanical ventilation at the EOL, ventilator weaning (such as
reductions in FiO2 and PEEP) should occur prior to extubating the patient or placing
the patient on a T-piece
Intravenous fluids should be provided to maintain hydration for the patient at the
EOL
The provision of EOLC requires emotional detachment
It is OK to cry when a patient dies
Note. EOL = end of life; EOLC = end-of-life care.
Facilitation
The key element of facilitation was represented by three scales within the survey
instrument: the emotional support for nurses, nurses’ end-of-life care values and
beliefs and coordination of care delivery scales. The items representing these scales
and the results of internal consistency and test-retest reliability for each of these
scales are presented below.
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Scale: Emotional support for nurses
The items in the emotional support for nurses scale (see Table 7–22) aim to measure
the individual nurses’ (survey respondents) perceptions of the support and assistance
they receive from their colleagues and their workplace when providing end-of-life
care. The first item in this scale was taken from Kain et al.’s (2009) instrument. The
remaining items were derived from the findings of phase one of this study and the
literature review. The second item, In my unit, nurses are expected to cope with
death and dying, was reverse coded prior to undertaking statistical analysis. Analysis
of the pilot test participant responses identified that this scale had satisfactory
internal consistency (α = .86) and achieved a large correlation coefficient that was
statistically significant on test-retest reliability (r = .92, p < .01). Therefore, the items
in this scale were included in the final version of the survey instrument.
Table 7-22: Items in the emotional support for nurses scale
Item
When a patient dies in my Unit, counselling is available if I need it
In my unit, nurses are expected to cope with death and dying
I feel supported when caring for a patient at the EOL
After caring for a patient at the end-of-life, my colleagues will ask me if I am OK
My supervisors/managers ensure staff caring for patients at the EOL are supported
My colleagues appreciate the stressors associated with caring for patients at the EOL
My supervisors/managers provide guidance that assists me to provide EOLC
Note. EOL = end of life; EOLC = end-of-life care.
Scale: Nurses’ end-of-life care values and beliefs
This scale contained items designed to measure the personal views of individual
nurses (survey respondents) in relation to end-of-life care. The items comprising this
scale are presented in Table 7–23. The fifth item in this scale was drawn from Kain
et al.’s (2009) instrument. The remaining items were generated from the literature
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review and the findings of phase one of this study. The item I feel a sense of personal
failure when a patient dies was reverse coded.
The internal consistency of this scale was low (α = .39). Although deleting selected
items from this scale moderately improved the internal consistency, all items were
retained for further testing in phase three of this study, as it was considered that,
individually, the items may provide important descriptive information even though
they did not hold together as a scale. In an attempt to improve the internal
consistency of this scale in phase three, three additional items were added to the
survey: After a decision is made to withdraw treatment, I spend less time with the
patient, Patients at the end-of-life require little nursing care and End-of-life care
requires advanced nursing skills. In the pilot testing of this scale, a large correlation
coefficient that was statistically significant (r = .85, p < .01) was obtained on test-
retest reliability.
Table 7-23: Items in the nurses’ end-of-life care values and beliefs scale
Item
I feel a sense of personal failure when a patient dies
It is a privilege to care for a patient at the EOL and their family
I can influence the patient and family’s experience of EOLC
My own personal experiences of death have influenced the care I provide to patients
at the EOL
EOLC is as important as curative care in the critical care environment
After a decision is made to withdraw treatment, I spend less time with the patient
Patients at the EOL require little nursing care
EOLC requires advanced nursing skills
Note. EOL = end of life; EOLC = end-of-life care.
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Scale: Coordination of care delivery
In this study, coordination of care delivery is defined as the strategies undertaken
within the unit to smooth transitions between individual care providers (both nurses
and other health care providers) for the family and coordinate care for the patient at
the end of life as perceived by the individual nurse (survey respondent). All four
items in this scale, presented in Table 7–24, were included in the final version of the
survey instrument. The Cronbach’s alpha of this scale was .67 and a large correlation
coefficient that was statistically significant (r = .76, p < .01) was achieved between
the test and retest scores of this scale.
Table 7-24: Items in the coordination of care delivery scale
Item
In my unit, nurses that know the patient and family are allocated to care for the
patient to maintain continuity of care
In my unit, a plan of care for the patient is clearly documented by the medical team
after a decision to withhold or withdraw treatment is made
In my unit, the intensive care team and the patient’s primary medical or surgical team
agree on a plan of care
In my unit, patients remain in ICU for EOLC following a decision to withhold or
withdraw treatment
Note. EOLC = end-of-life care; ICU = intensive care unit.
Overall, each of the a priori scales in the Factors influencing the provision of end-of-
life care section of the survey instrument achieved a satisfactory level of internal
consistency and test-retest reliability. A summary of the results of internal
consistency and test-retest reliability of the a priori scales in this section of the
survey instrument is provided in Table 7–25.
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Table 7-25: Internal consistency and test-retest reliability of the a priori scales
in the Factors influencing the provision of end-of-life care section of the survey
instrument
Scale α r
Organisational culture .58 .61*
Resources .60 .80**
Patient and family preferences .79 .68*
Nursing education and experience .75 .77**
Nurse practice knowledge .41 .86**
Emotional support for nurses .86 .92**
Nurses’ end-of-life care values and beliefs .39 .85**
Coordination of care delivery .67 .76**
*p < .05, two-tailed. **p < .01, two-tailed.
Participants in the pilot test indicated that the readability of the survey instrument
was satisfactory, although it was acknowledged that the survey was quite long. All
items in the survey instrument that referred to intensive care were modified to read
critical rather than intensive, reflecting the broader practice settings in which critical
care nurses may work. Pilot test participants commented positively about the need
for research into end-of-life care in critical care settings and expressed an interest in
the findings of the research.
7.4 Summary
In summary, the purpose of phase two of this study was to develop and test a survey
instrument. A panel of six experts reviewed the content of the survey instrument and
provided relevance ratings permitting the calculation of both individual item and
survey CVIs. An initial pilot test indicated that several of the scales proposed a priori
were not robust measures of the constructs of interest. Significant modification to the
instrument was undertaken, and it was determined that a second pilot test was
necessary to obtain preliminary evidence of the reliability and validity of the survey
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instrument. Pilot testing of the survey instrument revealed satisfactory internal
consistency between the items in the scales proposed; however, in many cases,
correlation coefficients from test-retest reliability were low. Overall, the survey
instrument was considered to provide a satisfactory instrument to achieve its purpose
and only minor modifications were undertaken prior to its use in phase three of this
study.
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8 PHASE THREE METHODS
8.1 Introduction
Phase three of this mixed methods study employed a quantitative approach to
identify the end-of-life care practices of critical care nurses and the factors
influencing these practices. This phase utilised the survey instrument developed in
phase two, based on the findings of phase one of this study and a review of the
literature, to address the key research questions of this study, which are:
1. What are the most frequently reported end-of-life care practices of Australian
critical care nurses?
2. What are the factors influencing the provision of end-of-life care as perceived
by Australian critical care nurses?
3. What factors are associated with critical care nurses’ end-of-life care
practices?
This chapter will describe the setting and sample, procedure, and data management
and analysis used in phase three of this study.
8.2 The setting and sample
The target population in phase three of this study is Australian registered nurses with
experience in a critical care setting. In the Intensive Care Resources and Activity:
Australia and New Zealand 2007/2008 report, the term critical care unit encompasses
general and specialty ICU, combined ICU/CCU, paediatric ICU, HDU, and a
combination of any of the above (Drennan et al., 2010). This report identifies that
there were 8,975 registered nurses working in a critical care unit in Australia. Of
these, 4,605 (56.1%) held a critical care nursing qualification (Drennan et al., 2010).
It should be noted that these figures were obtained from staffing figures supplied by
critical care units that were eligible and responded to the survey (n = 153; response
rate 95%). The survey did not include data from smaller units that did not meet the
inclusion criteria of invasive ventilation of 20 or more patients per annum over three
consecutive survey periods (Drennan et al., 2010). These figures also did not include
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registered nurses who may be working in critical care units as a result of employment
by nursing agencies or casual pools, nor does it include nurses employed in other
areas that may be considered critical care, including emergency departments and
retrieval units.
The accessible population is a subset of the target population that is available to
invite to participate in the study (Polit & Beck, 2010). The accessible population in
phase three of this study was the membership of the ACCCN. Membership of
ACCCN is open to anyone with an interest in critical care nursing. The ACCCN is a
professional organisation that represents critical care nurses on a national level and
provides its members with education and information pertinent to critical care.
Approximately 2,300 registered nurses are members of ACCCN. Members of
ACCCN are employed in clinical, research and/or academic positions.
A non-probability sampling technique was chosen to recruit the total population of
ACCCN members who had agreed to be contacted for research purposes to
participate in phase three of this study. It is recognised that this sampling strategy is
subject to a potential selection bias. The sample may not accurately represent the
total population of critical care nurses in Australia, as it will not include critical care
nurses who are not members of ACCCN, and this may potentially limit the
generalisability of findings. Members of ACCCN are a unique group; for example,
membership suggests they are more likely to be interested in professional issues and
education than non-members. The sample will represent approximately 25% of the
target population, based on the figures provided in the Intensive Care Resources and
Activity: Australia and New Zealand 2007/2008 report (Drennan et al., 2010).
8.3 Procedure
During May 2011, a convenience sampling technique was utilised to invite all
members of the ACCCN who had agreed to be contacted for research purposes to
participate in phase three of this study. An email inviting members of ACCCN to
participate in this study was distributed by an ACCCN administrative assistant
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through their member database (see Appendix 13.10). An information sheet outlining
the requirements of participation, expected benefits and risks was attached to the
email (Appendix 13.11). Participants completed and submitted the survey online.
The survey takes approximately 20 minutes to complete and a copy of the survey
content is provided in Appendix 13.12. A reminder email was circulated to potential
participants three weeks following intial contact. The survey was available online for
six weeks.
The survey software, Key Survey version 7.3 (WorldAPP Key Survey, 2011)
provided the online platform for the survey. To permit the survey to be distributed by
ACCCN, a link to the online survey in the form of a master URL was used. Use of a
master URL required an ‘allow multiple responses’ rule to be set to permit the survey
to be taken multiple times on the same computer. The rule allowed participants who
are at work in a clinical setting to use the same computer terminal to complete the
survey.
8.4 Data management and analysis
As data were collected, they were periodically checked to identify any response
errors. The data were exported from Key Survey into PASW software version 18 for
statistical analysis. A log of decisions regarding data cleaning was maintained. The
data set was reviewed to identify any extreme values or outliers, and missing values.
Where statistical tests do not permit missing data, missing values were managed by
listwise deletion (Hair et al., 2006). Items worded in the opposite direction (see Table
8–1) were reverse scored prior to undertaking factor analysis.
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Table 8-1: Items reverse scored prior to factor analysis
Item
Lack of staff results in no ‘down time’ between the death of a patient and the
admission of the next patient
I don’t know what to say to the family of a patient at the EOL
I have limited knowledge of symptom management for patient’s at the EOL
The provision of EOLC requires emotional detachment
In my Unit, nurses are expected to cope with death and dying
I feel a sense of personal failure when a patient dies
Patients at the EOL require little nursing care
The thought of death seldom enters my mind
It doesn’t make me nervous when people talk about death
I am not at all afraid to die
I am not particularly afraid of getting cancer
The thought of death never bothers me
I feel that the future holds nothing for me to fear
Note. EOL = end of life; EOLC = end-of-life care.
The analytical approach used in phase three of this study included the use of:
(1) descriptive statistics to summarise the data,
(2) factor analysis for data reduction and the identification of the underlying
constructs of the survey instrument,
(3) bivariate statistical tests to identify relationships between the independent and
dependent variables, and
(4) modelling of the data using a general linear model to explain the relationship
between each outcome variable and multiple explanatory variables.
8.4.1 Descriptive statistics
Descriptive statistics were used to summarise the data obtained from the survey
instrument. The continuous variables in the data set were the summated scales
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(generated from the findings of factor analysis) for each of the outcome and explanatory
variables and participant age. Data from observations of continuous variables were
summarised by calculating the mean, median, range and standard deviation. These
statistics provided a summary of the measure of central tendency and spread of the data
for each variable and assisted in determining normality when an assumption of normal
distribution needed to be met. A histogram of the values of the variable was provided
when a graphical representation of the data was needed, and this graph was also used to
assist in determining normality of the distribution.
Data from categorical variables were summarised by calculating the frequency and
percentage for each category and were presented in a frequency table or bar chart.
Categorical variables in the data set include: gender, location, highest qualification in
nursing, formal education in critical care, years of experience as a nurse, years of
experience in critical care, current workplace, location of workplace, type of work, time
since the provision of direct patient care and time since the provision of end-of-life care.
In addition to the descriptive statistics of the summated scales, the frequency and
percentage of participant responses for each item in the Critical care nurses’ end-of-life
care practices and the Factors influencing the provision of end-of-life care sections of
the survey instrument were calculated and presented in a frequency table. The results of
these analyses are used to answer the research question: What are the most frequently
reported end-of-life care practices of Australian critical care nurses? In addition, the level
of agreement for items in the Factors influencing the provision of end-of-life care section
provides some evidence relevant to the research question: What are the factors
influencing the provision of end-of-life care as perceived by Australian critical care
nurses?
8.4.2 Exploratory factor analysis
EFA was undertaken on the data obtained from the Critical care nurses’ end-of-life care
practices and the Factors influencing the provision of end-of-life care sections of the
survey instrument for the dual purposes of data reduction and identifying the latent
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constructs within each section. Although principal components analysis is widely used in
the literature and is the default EFA extraction method in many statistical software
packages, it is a data reduction technique, which only identifies the components of the
data and does not differentiate between common, unique and error variance (Bandalos &
Finney, 2010; Costello & Osborne, 2005). Common factor analysis methods such as
principal axis factoring (PAF) only analyse common (shared) variance between the
variables (Costello & Osborne, 2005; Hair et al., 2006), enabling latent constructs in the
data to be identified. The generation of summated scales from these latent constructs
creates a more parsimonious set of variables for use in bivariate analysis and multivariate
modelling of the data (Hair et al., 2006).
EFA as opposed to confirmatory factor analysis (CFA) was selected as the most
appropriate factor analytical technique, as the items in the survey instrument were
specifically developed for this study and limited previous research of the end-of-life care
practices of critical care nurses and the factors influencing the provision of end-of-life
care has been undertaken. Although a priori scales were specified during development of
the survey instrument, Bandalos and Finney (2010) note that:
A common situation in which one must choose between EFA and CFA is the
investigation of items that have been written to measure a construct hypothesized
to have several dimensions. Researchers often claim a priori knowledge of the
underlying structure based on the fact that the items have been written to
measure specific aspects of the construct. However, in our experience, items are
rarely aware of the scale for which they have been written and often fail to
behave as they should. (p. 96)
The results of EFA are dependent on the items included in the analysis. Inadequate
inclusion of items may result in a latent construct not being identified (Bandalos &
Finney, 2010), while the inclusion of items not conceptually relevant may result in the
identification of latent constructs not representative of the domain of interest (Fabrigar,
Wegener, MacCallum, & Strahan, 1999). A further limitation of EFA is the
subjectiveness involved in arriving at a factor solution (Bandalos & Finney, 2010; Hair
et al., 2006; Kim, 2008). Although some guidelines are available, the researcher
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ultimately selects the methods used in factor analysis and interprets the theoretical and
conceptual meaningfulness of the solution (Bandalos & Finney, 2010; Hair et al., 2006;
Kim, 2008). The factorability of the data set, method of extraction, type of rotation and
number of factors to retain are key decisions to be made when undertaking EFA. The
remainder of this section will report the EFA methods used in this study.
Prior to commencing EFA, the factorability of the data set and the adequacy of the
sample size were ascertained. Correlation matrices of data from the Critical care nurses’
end-of-life care practices and the Factors influencing the provision of end-of-life care
sections of the survey instrument were reviewed to ensure correlations greater than .30
between variables, indicating factorability of the data (Hair et al., 2006). It is noted that
an inadequate sample size can result in a factor solution that fits the data but is not
generalisable to the wider population (Hair et al., 2006). Generally, a sample of five to
10 participants per item is considered adequate (Hair et al., 2006). Statistically, the
adequacy of the data set for factor analysis was also determined by reviewing the
measure of sampling adequacy (MSA) for each item and ensuring that it is greater than
.50 and obtaining a significant result on Bartlett’s test, indicating correlation among the
variables (Hair et al., 2006). Missing values in the data set were managed by listwise
deletion, whereby the data for the entire respondent were deleted and not included in the
factor analysis (Hair et al., 2006).
As previously identified, PAF is a common factor analysis method that identifies the
latent constructs in the data through analysis of shared variance. Therefore, PAF was
selected as the extraction method used in this research study. Oblique rotation methods
permit correlation of the factors by enabling the axis to fit the data and not restricting
them to be at 90 degrees (Hair et al., 2006). Oblique (direct oblimin) rotation was used,
as correlation of the factors in the data set was anticipated. Oblique rotation produces an
orthogonal result when no correlation exists (Bandalos & Finney, 2010; Costello &
Osborne, 2005).
Use of multiple methods to determine the number of factors to retain has been
recommended (Bandalos & Finney, 2010; Fabrigar et al., 1999; Hair et al., 2006). In this
study, the number of factors to be retained was determined using Kaiser’s criterion, a
scree plot and the number of factors proposed a priori (Costello & Osborne, 2005;
Fabrigar et al., 1999). Kaiser’s criterion retains factors with an eigenvalue greater than
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1.0 and has been criticised for overextraction of factors (Fabrigar et al., 1999). The scree
plot is a graph of factors against their corresponding eigenvalues. The number of factors
retained according to the scree plot is determined by the point at which the curve begins
to plateau (Costello & Osborne, 2005; Hair et al., 2006). Interpretation of the scree plot
has been criticised for its subjectiveness (Fabrigar et al., 1999). Kaiser’s criterion, the
scree plot and the a priori factor structure, as represented by the scales identified during
the development of the survey instrument, provided a basis for selecting the number of
factors to retain. Comparison of multiple factor solutions for the best fit of the data in
regard to number of items loading on each factor, minimal cross loadings and theoretical
or conceptual meaningfulness was ultimately used to select the final factor solution
(Bandalos & Finney, 2010; Costello & Osborne, 2005; Fabrigar et al., 1999; Floyd &
Widaman, 1995).
When interpreting the factor solution, an item with a pattern coefficient greater than .30
was considered to contribute to the factor. A pattern coefficient of .30 equates to
approximately 10% shared variance between the variables (items) in the factor
(Bandalos & Finney, 2010; Costello & Osborne, 2005; Skerman, Yates, & Battistutta,
2009). The factor correlation matrix was reviewed to identify correlation between factors
(Costello & Osborne, 2005).
The internal consistency of scales (factors) identified by factor analysis was further
assessed by calculating Cronbach’s alpha coefficient for the survey items in each scale.
A reliability coefficient greater than .70 is considered satisfactory (Hair et al., 2006).
Summated scales were calculated by adding together the scores for items on a scale.
Descriptive statistics, including the mean and range, for each summated scale were
calculated. The summated scales developed from the Factors influencing the provision
of end-of-life care section of the survey instrument, together with the demographic
variables, formed the explanatory variables in subsequent bivariate and multivariable
modelling of the data. The summated scales developed from items in the Critical care
nurses’ end-of-life care practices section of the survey instrument were used as the
outcome variables. The findings from the EFA are used to answer the research question:
What are the factors influencing the provision of end-of-life care as perceived by
Australian critical care nurses?
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8.4.3 Bivariate statistical analysis
Bivariate analyses were undertaken to identify possible relationships between each
outcome variable (critical care nurses’ end-of-life care practice areas derived from the
summated scales identified during factor analysis) and each explanatory variable
(demographic variables and summated scales representing select factors influencing the
provision of end-of-life care). The findings of the bivariate analyses informed the
selection of variables for inclusion in subsequent multivariable modelling.
The normality of each outcome variable was ascertained by reviewing the descriptive
statistics, including the mean, median, range and skewness and kurtosis coefficients,
combined with a visual inspection of the histogram for each outcome variable (Hair et
al., 2006; Tabachnick & Fidell, 2007). The normality assumption was also tested for
each outcome variable by calculating the Shapiro-Wilk statistic. A significant result
on this test indicates that the data are not normally distributed; however, this test may
produce significant results with small departures in normality in large samples (Hair
et al., 2006).
As a result of violation of the normality assumption by each of the outcome variables,
non-parametric tests were undertaken in all bivariate analyses. When the outcome and
explanatory variables were measured as continuous variables (for example, age), a
scatter plot of the relationship between the variables was graphed and a Spearman’s rank
correlation coefficient calculated. When testing the relationship between an outcome
variable and categorical variable with two groups (gender, location, postgraduate
qualification and formal education in critical care variables), a Mann-Whitney test was
undertaken. When testing the relationship between an outcome variable and categorical
variable with three or more groups (years of nursing experience, years of critical care
experience, workplace, primary nursing role, time since direct patient care and time since
end-of-life care variables), a Kruskal-Wallis ANOVA was used. Multiple pairwise
comparisons were undertaken when a significant difference was identified to determine
which of the groups were different.
Side-by-side box plots were used to provide a graphical summary of the relationship
between the continuous outcome variable and a categorical explanatory variable. In each
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of the bivariate statistical tests undertaken, a p-value of less than .05 was selected as the
criterion for reporting statistical significance. An adjusted level of statistical significance
was calculated and reported for tests involving multiple pairwise comparisons to
minimise Type I error (Tabachnick & Fidell, 2007).
8.4.4 Multivariable statistical analysis
Multivariable regression modelling is undertaken for the purpose of prediction and/or
explanation of the relationships between each outcome (dependent) and the explanatory
(independent) variables (Hair et al., 2006; Tabachnick & Fidell, 2007). Prediction is
achieved by identifying the explanatory variables that contribute to changes in the
outcome variable. Explanation occurs when the most important predictors (explanatory
variables) are identified, based on the strength, direction of relationship (positive or
negative) and statistical significance (Hair et al., 2006). In this phase of the study, the
primary purpose of undertaking multiple regression modelling was prediction to answer
the research question: What factors are associated with critical care nurses’ end-of-life
care practices?
This section will describe the model-building approach used in this study, including
estimation of the model, model fit and the assumptions tested in evaluating the model.
Using the univariate general linear model procedure in PASW software version 18, a
model was built for each of the six outcome variables. As previously identified, the
outcome variables were the six summated scales of critical care nurses’ end-of-life care
practices. The potential explanatory variables of these practices were the summated
scales of factors influencing the provision of end-of-life care and the demographic
variables.
Any explanatory (independent) variable that had a significance level of p < .2 in
bivariate analysis with the outcome (dependent) variable was considered a variable of
importance and included in the initial model (Tabachnick & Fidell, 2007). Using a
backward elimination approach, non-significant explanatory variables were removed
from the model one at a time until all explanatory variables remaining in the model were
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significant (Hair et al., 2006; Tabachnick & Fidell, 2007). A p-value of less than .05 was
selected as the criterion for reporting statistical significance. This p-value was used to
report overall model significance and the significance of explanatory variables. Post hoc
pairwise comparison with Bonferroni correction was undertaken when a significant
difference was identified for a categorical explanatory variable to determine which of the
groups were different.
The explanatory power of the general linear model for the data was reported using the
adjusted R-squared. The R-squared value increases as the number of variables in the
model increases, while the adjusted R-squared adjusts for the number of variables in the
model, providing a more accurate measure of explanatory power (Hair et al., 2006). The
explanatory power for individual variables was reported using partial eta squared values.
Partial eta squared explains the variance unique to each explanatory variable in the
model (Hair et al., 2006).
The assumptions to be met in the general linear model are that of independence of
observations, normality, linearity and equality of variance. The assumption of
independence of observations is met in this cross-sectional study design where each
participant is observed on only one occasion. However, the possibility of participants
being alike as an observational unit, for example being employed in the same workplace
and having access to the same resources, should be considered during interpretation of
the findings of this study.
Graphical representations of the residuals for each model were reviewed to check the
assumptions of normality, linearity and equality of variance. Identification of normal
distribution of the residuals, around zero with a constant variance, indicated that these
assumptions were met (Hair et al., 2006; Tabachnick & Fidell, 2007). In addition, the
assumption of equality of variance was met when a non-significant result on Levene’s
test of equality of variance was obtained (Hair et al., 2006).
Finally, multicollinearity occurs when explanatory variables are highly correlated (Hair
et al., 2006). Correlation matrices of explanatory variables were reviewed to identify if
any of the explanatory variables were too highly correlated (r > .9) (Tabachnick &
Fidell, 2007).
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8.5 Summary
This chapter has described the methods used to conduct a national online survey of a
convenience sample of critical care nurses. An analytical approach involving
descriptive statistics, EFA and multivariable analysis was described and
interpretation of the results from these analyses will be used to answer the three key
research questions proposed in the current study. The results of phase three of the
study are presented in the next chapter.
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9 PHASE THREE RESULTS
9.1 Introduction
The survey instrument was circulated to and available for completion by potential
participants in phase three of this study during May and June 2011. This chapter will
first outline participant recruitment and response to the survey instrument. The
demographic characteristics of the sample and the descriptive statistics of individual
items will then be presented. The results of EFA on the Critical care nurses’ end-of-life
care practices and the Factors influencing the provision of end-of-life care sections of
the survey instrument will be outlined. Bivariate and multivariable analyses will then be
presented, with particular attention to the six practice models and their explanatory
variables identified using the univariate general linear model procedure.
9.2 Phase three participants
Approximately 2,300 critical care nurses are members of ACCCN. When the survey was
initially distributed in May 2011, 1,553 of these members had agreed to be contacted for
research purposes and were invited to participate. Due to an increase in membership, the
invitation to participate reminder notice was sent to 1,580 members (L. Herson, personal
communication, June 21, 2011).
In total, 404 members of ACCCN responded to the survey invitation (response rate
25.5%). Eight persons responded via return email declining participation, stating that
they were not currently working in clinical practice and could not complete the survey.
As the survey was distributed through the ACCCN membership database, the researcher
was unable to ascertain if any emails were undelivered.
The survey instrument was completed by 396 critical care nurses. The survey software
did not capture those persons who partially completed the survey, so the response rate
only reflects those who completed the survey. Responses from three participants were
deleted as they identified that they had never provided end-of-life care. A duplicate
response was noted in one instance, and the duplicate response was deleted. Therefore,
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the final response rate was 25% (392/1568). A flow chart representing participant
recruitment and response is provided in Figure 9–1.
Figure 9-1: Flow chart of participants in phase three
Note. EOL = end of life.
9.3 Demographic characteristics
The mean age of critical care nurse participants in phase three of this study was 43.1
years (SD = 9.2) and 13.5% of participants were male. Years of experience in nursing
ranged from two to 43 years (M = 20.9; SD = 10.1), with 77.1% of participants
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having more than 10 years of experience in nursing. Years of experience working as
a nurse in a critical care unit ranged from 0 to 39 years (M = 14.4; SD = 8.2) and
64% reported more than 10 years of experience in the critical care setting. In addition
to extensive years of experience, the majority of participants in phase three of this
study had postgraduate qualifications in nursing (82.7%) and had completed or were
currently undertaking formal education in critical care (90.3%). Table 9–1 outlines
the age, gender, nursing experience, qualifications and education of phase three
participants.
Table 9-1: Demographic characteristics of phase three participants (n = 392)
Characteristic %
Age
<25 2.0
25–29 8.7
30–34 10.5
35–39 12.8
40–44 16.1
45–49 23.2
50–54 15.6
55–59 6.9
60+ 2.0
Gender
Female 86.5
Male 13.5
Nursing Experience
0–5 7.7
6–10 15.2
11–15 8.2
16–20 15.5
20+ 53.4
Critical Care Experience
0–5 18.1
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6–10 17.9
11–15 21.8
16–20 18.1
20+ 24.1
Highest Qualification in Nursing
Postgraduate 82.7
Hospital certificate/
Undergraduate degree
10.7
Formal Education in Critical Care
Yes 90.3
No 9.7
The majority of participants in phase three of this study were employed in a major
city (71.4%). The remainder reported employment in a regional area (27.0%) or
remote area (1.5%). All jurisdictions were represented by participants in phase three
of this study (see Table 9–2). The current workplace of participants reflected the
variety of settings in which critical care nurses are employed. The majority of
participants were currently employed in a general ICU (49.2%) or an integrated
ICU/CCU/HDU unit (23.5%). Overall, 90% of phase three participants had provided
direct patient care within the last 12 months and, for 86% of participants, this care
included the provision of end-of-life care (see Table 9–2).
Table 9-2: Phase three participants’ location, workplace and participation in
work (n = 392)
Characteristic %
Location
Queensland 18.9
New South Wales 22.2
Australian Capital Territory 2.8
Victoria 34.7
Tasmania 1.5
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South Australia 8.9
Western Australia 7.4
Northern Territory 1.8
Overseas 1.8
Current workplace
General ICU (integrated medical/surgical including ICU managed HDU
and specialty ICUs)
51.3
Integrated ICU/CCU/HDU 23.5
Paediatric ICU 7.4
Emergency Department 4.6
Other clinical 3.8
Other non-clinical 9.4
Type of work
Clinical (direct patient care) 55.4
Nursing management (team leader/supervision of clinicians) 16.1
Nursing management (administration) 7.1
Education 14.8
Research / Quality / Project work 6.6
Time since provision of direct patient care
Within the last week 74.5
Within the last month 8.9
Within the last 12 months 6.6
In the last 1–5 years 6.6
More than 5 years 3.3
Time since provision of end-of-life care
Within the last week 19.1
Within the last month 30.4
Within the last 12 months 36.5
In the last 1–5 years 10.2
More than 5 years 3.8
Note. ICU = intensive care unit; CCU = coronary care unit; HDU = high dependency
unit.
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9.4 Descriptive statistics
Descriptive statistics were calculated for each of the items in the Critical care
nurses’ end-of-life care practices section and the Factors influencing the provision of
end-of-life care section of the survey instrument. Table 9–3 presents the mean and
standard deviation for items in the Critical care nurses’ end-of-life care practices
section that achieved the highest ranking based on their mean score, indicating the 10
end-of-life care practices most frequently undertaken as identified by critical care
nurse participants in this study. Participant responses as a percentage of the sample,
means and standard deviations for all items in the Critical care nurses’ end-of-life
care practices section of the survey instrument are provided in Appendix 13.13.
Table 9-3: The mean and standard deviation for the 10 items in the Critical care
nurses’ end-of-life care practices section most frequently undertaken based on
their mean score (n = 392)
Item M (SD)
Permit the family to visit outside of regular visiting hours 4.7 (0.5)
Place chairs around the bed for the family 4.7 (0.5)
Provide care to maintain patient hygiene 4.7 (0.5)
Introduce the nursing staff on the oncoming shift to the patient and family 4.7 (0.5)
Encourage the family to touch the patient 4.7 (0.6)
Handover the family’s preference for the patient’s end-of-life care to the
oncoming nurse 4.7 (0.6)
Draw curtains to provide privacy for the patient and family 4.6 (0.6)
Encourage the family to talk to the patient 4.6 (0.6)
Answer the family’s questions about the patient’s condition 4.6 (0.6)
Silence alarms on all equipment 4.6 (0.6)
Note. M = mean; SD = standard deviation
Table 9–4 presents the mean and standard deviation for the items in the Factors
influencing the provision of end-of-life care section of the survey instrument that
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achieved the highest ranking based on their mean score, indicating the items that
achieved the highest level of agreement as factors influencing the provision of end-
of-life care in critical care settings. Participant responses as a percentage of the
sample, means and standard deviations for all items in the Factors influencing the
provision of end-of-life care section of the survey instrument are provided in
Appendix 13.14.
Table 9-4: The mean and standard deviation for the 10 most strongly agreed
items in the Factors influencing the provision of end-of-life care section of the
survey instrument based on their mean score (n = 392)
Item M (SD)
EOLC should include care of the patient’s family (n = 391) 4.7 (0.5)
Analgesia should be titrated to keep the patient comfortable even if this
hastens death (n = 391)
4.6 (0.6)
EOLC is as important as curative care in the critical care environment (n
= 389)
4.5 (0.7)
It is a privilege to care for a patient at the EOL and their family 4.5 (0.7)
I can influence the patient and family’s experience of EOLC (n = 391) 4.5 (0.7)
Pressure area care should continue to be provided for a patient at the EOL
(n = 391)
4.4 (0.7)
It is OK to cry when a patient dies (n = 390) 4.2 (0.8)
In my Unit, families are involved in decisions about the dying patient 4.2 (0.7)
In my Unit, withdrawal of treatment is delayed whilst waiting for
relatives of the patient to arrive
4. 2 (0.7)
In my Unit, family meetings with the health care team are held to resolve
differing views about a patient’s treatment
4.1 (0.8)
Note. M = mean; SD = standard deviation; EOL = end of life; EOLC = End-of-life
care
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9.5 Exploratory factor analysis
Factorability of the data was verified by reviewing the correlation matrix of the data
set to ensure the data contained correlations greater than .30 (Hair et al., 2006).
Although a number of items did not correlate greater than .30, the items included in
the survey instrument were deemed conceptually important and/or had been
validated by the expert panel as relevant to the domains of interest in this study.
Therefore, all items were included in factor analysis.
The factorability of the data set was further verified by obtaining a significant result
for Bartlett’s test of sphericity for the Critical care nurses’ end-of-life care practices
section [χ2 (1275) = 10413.76, p < .001] and the Factors influencing the provision of
end-of-life care section [χ2 (1653) = 7368.51, p < .001] of the survey instrument,
indicating adequate correlations between the items.
The Critical care nurses’ end-of-life care practices section of the survey instrument
consisted of 51 items and there were no missing values in this section. The Factors
influencing the provision of end-of-life care section of the survey instrument
consisted of 58 items and 9.4% of participants had a missing value for at least one
item. Despite the missing values in this section of the survey instrument, the ratio of
between five and 10 participants per item recommended in the literature was
achieved (Hair et al., 2006). The adequacy of the sample size for factor analysis was
also assessed by calculating the Kaiser-Meyer-Oklin (KMO) MSA. For the Critical
care nurses’ end-of-life care practices section, the KMO MSA was .91. For the
Factors influencing the provision of end-of-life care section of the survey instrument,
the KMO MSA was .81. The KMO statistic for all individual items was above .50.
Thus, the sample size was considered adequate for factor analysis.
9.5.1 Exploratory factor analysis: Critical care nurses’ end-of-life care practices
Factor analysis using PAF and oblique rotation (direct oblimin) was undertaken on
the Critical care nurses’ end-of-life care practices section of the survey instrument
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using PASW software version 18. Kaiser’s criterion suggested a solution of 12
factors. The a priori factor structure suggested seven factors, while interpretation of
the scree plot suggested a solution of five or seven factors (see Figure 9–2).
Therefore, comparison of factor solutions using five, six, seven, eight and 12 factors
was undertaken.
Figure 9-2: Scree plot of eigen values for factors in the Critical care nurses’ end-
of-life care practices section of the survey instrument
The seven factor solution was deemed to have the best fit of the data in terms of
theoretical and conceptual meaningfulness. However, factor seven was not accepted
as a scale as it only contained two items. The two items that load together on factor
seven seem conceptually similar and perhaps measure a latent construct that is not
adequately covered by the items in the current survey instrument.
The pattern coefficient (factor loading) and communality (h2) for each item in the
Critical care nurses’ end-of-life care practices section of the survey instrument is
provided in Table 9–5. In this solution, 47 out of the 51 items had a pattern
coefficient greater than .30, the level required for an item to be considered to
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contribute to a factor. The structure matrix for the Critical care nurses’ end-of-life
care practices section of the survey instrument is provided in Appendix 13.15. In the
seven factor solution, there were 162 (12.0%) non-redundant residuals with absolute
values greater than 0.05. Review of the factor correlation matrix (see Table 9–6)
revealed moderate correlations between factor one and a number of the other factors.
Moderate correlations between factor six and a number of the other factors were also
identified.
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Table 9-5: Factor loadings for exploratory factor analysis with oblique rotation of Critical care nurses’ end-of-life care practices section of
the survey
Items
Factor loadings
h2 1 2 3 4 5 6 7
Explain all interventions undertaken in the care of the patient .72 –.03 –.01 .04 .05 .01 –.12 .60
Explain to the family what is happening to the patient .70 –.07 .13 .09 .06 –.07 –.01 .57
Fully inform the family about all aspects of the plan of care .64 –.06 –.02 .12 –.01 .17 –.06 .60
Answer the family’s questions about the patient’s condition .58 .11 –.09 .04 .08 .10 –.08 .51
Provide information to the family about the dying process .51 –.05 .14 .22 –.03 –.00 .12 .41
Introduce the nursing staff on the oncoming shift to the patient and family .42 .06 .12 .01 –.03 .25 –.28 .59
Liaise with other members of the health care team to meet identified needs of the patient and family .41 .03 .08 .16 .12 .17 .06 .46
Handover the family’s preferences for the patient’s EOLC to the oncoming nurse .33 .14 .04 .24 –.09 .22 –.23 .54
Ask the critical care team to document the plan of care/treatment orders .30 .02 –.08 .19 .04 .23 –.04 .32
Attend family meetings with the critical care team .30 .22 –.08 .07 –.07 .14 .06 .23
Adjust (dim or turn off) the lighting around the patient’s bed space –.02 .64 .10 .03 .03 .07 .10 .49
Silence alarms on all equipment .06 .63 –.09 .02 –.10 .04 –.13 .45
Create a calm, peaceful environment .05 .56 .14 .07 .06 .05 .25 .48
Turn off monitoring equipment –.07 .54 .06 .07 –.14 –.03 –.14 .32
Place chairs around the bed for the family .22 .43 .07 –.13 .05 .23 –.21 .58
Cluster/coordinate care to minimise interruptions and provide privacy for the patient and family .02 .42 .28 –.10 .03 .25 –.00 .49
Remove the endotracheal tube if the patient is breathing spontaneously .11 .41 –.03 .08 .02 –.11 –.06 .21
133
Items
Factor loadings
h2 1 2 3 4 5 6 7
Draw curtains to provide privacy for the patient and family .15 .41 .07 –.09 .08 .17 –.21 .46
Move the patient to a more private area of the unit –.08 .36 .17 .06 .10 .03 .17 .23
Permit family to visit outside of regular visiting hours .16 .26 –.00 .02 .03 .18 –.19 .29
Administer medications to minimise dyspnoea and respiratory sections .00 .25 –.03 .20 .18 .00 –.12 .21
Provide the family with access to a private room to congregate .15 .24 .11 .01 .07 .06 .20 .19
Encourage the family to reminisce about the patient .10 –.06 .69 .01 –.03 –.02 –.14 .51
Ask the family about their feelings –.00 –.03 .55 .26 .00 .12 –.14 .53
Provide opportunities for the family to create positive memories .11 –.04 .53 .16 .13 .18 .03 .62
Ask the family how they are coping –.02 .05 .47 .19 .08 .13 –.14 .47
Put up photographs of the patient, family members and/or pets –.07 .22 .47 –.08 .09 .11 .09 .38
Listen to the family reminisce about the patient .08 .01 .45 .06 .04 .17 –.13 .40
Play music –.02 .17 .44 .02 .02 .12 .24 .38
Ask the family their preferences for the patient’s care .07 .06 .06 .72 .01 .03 –.04 .63
Ask the family if they would like to be involved in the care of the patient .15 –.01 .12 .66 .07 .04 .03 .62
Provide the family with options about the care of the patient .17 –.01 .09 .58 .07 .05 .11 .52
Ask the family about their knowledge of the patient's wishes for EOLC .24 .16 .00 .44 –.10 .14 –.00 .47
Document the family’s preference for the care of the patient .29 –.08 .16 .38 –.03 .16 –.01 .47
Initiate (or implement) weaning from mechanical ventilation… –.10 .17 –.05 .30 .18 .05 –.01 .18
Administer fluids to the patient to maintain hydration –.06 –.17 .02 .11 .58 –.03 –.08 .35
Maintain the patient’s airway using oro/endotracheal suction .13 .03 .04 .07 .57 –.09 .07 .39
134
Items
Factor loadings
h2 1 2 3 4 5 6 7
Keep the patient sedated, if appropriate .05 .20 –.13 .05 .46 .17 –.18 .45
Regularly obtain and document patient vital signs during the provision of EOLC –.01 –.17 .13 –.01 .45 .10 .07 .26
Administer analgesia via intravenous infusion –.02 .28 –.18 .01 .41 .20 –.20 .43
Provide pressure area care .37 .11 .13 –.20 .39 –.08 –.01 .40
Provide care to maintain patient hygiene .31 .19 –.01 –.25 .34 .16 –.11 .47
Offer to arrange for a spiritual advisor or pastoral care representative to visit… –.04 –.05 –.03 .01 –.07 .90 –.03 .71
Ask the family about spiritual needs –.04 –.08 .06 .03 –.00 .86 –.01 .74
Ask the family about cultural needs .01 –.08 .04 .06 .06 .81 .07 .71
Support the family to participate in cultural practices related to dying .05 –.03 .06 .05 .05 .77 .06 .70
Ask family members if there is anyone they would like to be there .20 .10 .11 .03 –.02 .44 –.04 .47
Stay in the room with the patient and family, if the patient and family wants .12 .05 .22 .03 –.01 .41 –.08 .43
Arrange for a counsellor or social worker to meet with the family .20 .11 .16 –.04 .04 .25 .11 .28
Encourage the family to touch the patient .12 .11 .29 –.01 .10 .04 –.63 .68
Encourage the family to talk to the patient .06 .08 .33 –.03 .16 –.00 –.56 .56
α .87 .80 .83 .84 .71 .90 .87
Note. Factor loadings > .30 are in boldface; EOLC = end-of-life care.
135
Table 9-6: Factor correlation matrix of Critical care nurses’ end-of-life care
practices section of the survey instrument
Factor 1 2 3 4 5 6 7
1 1.00 .30 .30 .32 .25 .48 –.20
2 .30 1.00 .22 .21 .21 .35 –.16
3 .30 .22 1.00 .22 .27 .45 .01
4 .32 .21 .22 1.00 .16 .33 –.04
5 .25 .21 .27 .16 1.00 .27 –.12
6 .48 .35 .45 .33 .27 1.00 –.14
7 –.20 –.16 .01 –.04 –.12 –.14 1.00
The reliability of the scales identified through EFA was assessed by calculating
Cronbach’s alpha to determine the internal consistency of the scales. The Cronbach’s
alpha for each factor is provided in the final row of Table 9–5. All scales derived
from EFA in the Critical care nurses’ end-of-life care practices section of the survey
instrument achieved a satisfactory reliability coefficient greater than .70. Therefore,
factors one through to six were accepted as scales and a summary of these factors,
the label of the scale, number of items and Cronbach’s alpha are provided in Table
9–7.
Factor one represented a combination of the scales explaining and providing
information and continuity of care proposed a priori. It was broader than the
explaining and providing information scale in that it refers to information sharing
between nurses and patients and families, and also between health care professionals,
which was originally captured in the continuity of care scale.
The items representing the latent construct, environmental modification, are similar
to those proposed a priori in the comfort care—environmental factors scale. Some of
the items from the a priori scale, emotional and practical support, were represented in
the latent construct emotional support. Items in the patient and family centred
decision making, symptom management and spiritual support latent constructs were
similar to those in the scales capturing these areas of practice proposed a priori.
136
Table 9-7: Final factors, labels and Cronbach’s alphas for Critical care nurses’
end-of-life care practices section of the survey instrument
Factor Label Items α
1 Information sharing 10 .87
2 Environmental modification 9 .80
3 Emotional support 7 .83
4 Patient and family centred decision making 5 .84
5 Symptom management 7 .71
6 Spiritual support 6 .90
9.5.2 Exploratory factor analysis: Factors influencing the provision of end-of-
life care
Factor analysis using PAF and oblique rotation (direct oblimin) was undertaken on
the Factors influencing the provision of end-of-life care section of the survey
instrument in PASW version 18. For this section of the survey instrument, Kaiser’s
criterion suggested a solution of 16 factors. The a priori factor structure suggested
eight factors, while interpretation of the scree plot suggested a solution of six or eight
factors (see Figure 9–3). Therefore, comparison of factor solutions using six, seven,
eight, nine and 16 factors was undertaken.
137
Figure 9-3: Scree plot of eigenvalues for factors in the Factors influencing the
provision of end-of-life care section of the survey instrument
Solutions of nine and 16 factors both contained a number of factors with only two or
three items loading on the factor. The eight factor solution most closely resembled
the a priori scales of the survey instrument and provided the best fit of the data in
terms of conceptual and theoretical meaningfulness of the factor structure. The
pattern coefficient (factor loading) and communality for each item in the Factors
influencing the provision of end-of-life care section of the survey instrument is
provided in Table 9–8. In this solution, 42 out of the 58 items had a pattern
coefficient greater than .30, the level required for an item to be considered to
contribute to a factor. The structure matrix for the Factors influencing the provision
of end-of-life care section of the survey instrument is provided in Appendix 13.16. In
the eight factor solution, there were 259 (15.0%) non-redundant residuals with
absolute values > 0.05.
The reliability of the scales identified through EFA was assessed by calculating
Cronbach’s alpha to determine the internal consistency of the scales. The Cronbach’s
alpha for each factor is provided in the final row of Table 9–8.
138
The factor correlation matrix (see Table 9–9) was reviewed to identify correlation
between factors. Moderate correlation (> .30) (Cohen, 1988; Field, 2009) was noted
between factors one and four and factors two and eight.
139
Table 9-8: Factor loadings for exploratory factor analysis with oblique rotation of Factors influencing the provision of end-of-life care
section of the survey instrument
Items
Factor loadings
h2 1 2 3 4 5 6 7 8
My supervisors/managers ensure staff caring for patients at the EOL are supported .82 –.05 –.01 –.06 –.04 –.03 .09 –.04 .70
My supervisors/managers provide guidance that assists me to provide EOLC .74 –.10 –.07 .01 –.03 –.00 .13 .06 .62
After caring for a patient at the EOL, my colleagues will ask me if I am OK .70 .21 –.01 –.05 .09 .06 –.03 –.02 .53
I feel supported when caring for a patient at the EOL .67 .04 –.01 .06 –.01 .09 .04 –.10 .59
My colleagues appreciate the stressors associated with caring for patients at the EOL .59 .17 –.04 –.06 –.02 .17 –.09 –.13 .51
When a patient dies in my Unit, counselling is available if I need it .53 –.14 .04 .01 .01 .04 .24 .05 .39
In my Unit, nurses view the provision of EOLC as an important component of critical care nursing .28 .22 –.02 .12 .00 .17 –.00 –.04 .25
Lack of staff results in no ‘down time’ between the death of a patient and the admission of the next patient .28 –.17 –.15 .13 –.16 –.17 –.04 –.04 .22
In my Unit, nurses are expected to cope with death and dying .24 –.21 .04 .06 –.22 –.16 –.03 .01 .19
EOLC is as important as curative care in the critical care environment –.02 .64 –.03 –.02 .01 –.04 .07 –.05 .46
I can influence the patient and family’s experience of EOLC .04 .58 .07 .04 –.06 –.04 –.05 –.15 .41
EOL care should include care of the patient’s family .00 .54 –.11 –.13 .05 .10 –.05 –.04 .37
It is a privilege to care for a patient at the EOL and their family .14 .53 –.00 .02 –.01 –.14 .02 –.12 .39
My own personal experiences of death have influenced the care I provide to patients at the EOL and their family –.08 .38 .04 .08 .00 –.02 .07 –.02 .16
Analgesia should be titrated to keep the patient comfortable even if this hastens death .05 .35 –.07 –.03 .08 –.01 –.01 –.11 .19
Pressure area care should continue to be provided for a patient at the EOL –.04 .31 .01 –.02 –.01 .09 .02 –.03 .11
It is OK to cry when a patient dies .04 .29 –.04 –.00 –.13 –.07 .01 –.08 .14
140
Items
Factor loadings
h2 1 2 3 4 5 6 7 8
EOLC requires advanced nursing skills .08 .28 .01 –.00 –.00 –.00 .27 –.00 .18
I have learnt from other nurses how to provide EOLC .15 .20 –.11 .15 .15 .15 –.00 .14 .18
In my Unit, families are given adequate time to consider decisions to withhold/withdraw treatment for the patient –.02 –.12 –.76 .02 –.04 .03 .07 –.01 .57
In my Unit, family meetings with the health care team are held to resolve differing views about a patient’s treatment .08 –.15 –.71 .04 –.02 .09 .05 –.04 .58
In my Unit, the patient’s preferences (or their likely preference according to family) for EOLC are considered .12 –.03 –.57 –.07 –.01 .27 .09 .10 .49
In my Unit, families are involved in decisions about the dying patient .05 .07 –.53 .11 –.07 .08 –.03 .10 .39
In my Unit, withdrawal of treatment is delayed whilst waiting for relatives of the patient to arrive –.08 .12 –.50 .05 .10 .02 –.04 –.01 .29
When a patient dies in my Unit, families have sufficient time to spend with the patient .19 –.06 –.33 .27 –.15 .04 –.21 –.10 .42
I am often exposed to death in the critical care environment .04 .17 –.21 –.02 .20 .02 –.05 –.04 .13
Abrupt withdrawal of mechanical ventilation may contribute to dyspnoea –.03 .19 –.19 .04 .14 –.07 .03 –.12 .14
The physical environment of my Unit is ideal for providing EOLC –.09 –.04 .06 .77 –.05 –.07 .02 –.02 .54
My Unit is adequately equipped to support the comfort needs of the family during EOLC –.14 .01 –.07 .73 –.02 .01 .11 –.00 .53
Private rooms are available to care for the patient at the EOL –.01 .13 .04 .71 .10 –.01 .02 .05 .48
My Unit is adequately staffed for providing the needs of dying patients and their families .13 –.18 –.21 .59 –.03 –.04 –.03 –.13 .56
When a patient dies in my Unit, nurses have sufficient time to spend with the family .23 –.22 –.27 .37 –.10 –.01 –.21 –.37 .62
In my Unit, nurses that know the patient and family are allocated to care for the patient to maintain continuity… .19 .05 –.03 .28 –.18 .12 .14 .12 .29
Following a decision to withhold or withdraw treatment, patients remain in my Unit for EOLC .07 .22 –.06 .27 –.08 .09 –.02 –.01 .18
After a decision is made to withdraw treatment, less time is spent with the patient by the critical care medical team .00 .01 –.01 –.06 .75 –.13 –.10 –.08 .61
After a decision is made to withdraw treatment, nurses are left to manage the care of the patient –.03 –.02 .05 –.01 .72 –.15 –.03 –.09 .57
In my Unit, EOLC is mostly allocated to junior nurses –.09 –.12 –.02 –.04 .32 –.15 .10 .14 .21
141
Items
Factor loadings
h2 1 2 3 4 5 6 7 8
After a decision is made to withdraw treatment, I spend less time with the patient .13 –.21 .15 .02 .32 .16 –.28 .12 .35
The medical staff support EOLC for dying patients in my Unit .08 .01 –.17 –.04 –.117 .55 –.07 –.09 .45
In my Unit, when a diagnosis with a likely poor outcome is made, families are informed of EOLC options –.00 –.04 –.30 –.02 –.17 .53 .07 –.02 .48
In my Unit, the team expresses its opinions, values and beliefs about providing care to dying patients .20 .04 .01 .01 –.04 .51 .01 –.03 .38
All members of the healthcare team in my Unit agree with and support EOLC when it is implemented .08 .09 –.07 .19 –.00 .47 –.18 –.04 .38
In my Unit, a plan of care for the patient is clearly documented by the medical team .01 –.09 –.17 .11 –.24 .43 –.01 –.10 .40
In my Unit, the critical care team and the patient’s primary medical or surgical team agree on a plan of care .06 –.03 –.21 .06 –.14 .42 .00 –.04 .34
The provision of EOLC requires emotional detachment .04 .22 .06 –.02 –.21 –.24 –.12 –.09 .17
I have received in-service education that assists me to support and communicate with families of dying patients .15 –.20 .13 .05 .06 .26 .57 –.28 .60
I have received in-service education that assists me to provide care and manage patient symptoms at the EOL .11 –.23 .16 .08 .04 .22 .54 –.33 .57
I draw on evidence from the literature to provide EOLC to patients and their families .02 .08 –.25 –.02 –.07 –.10 .43 –.13 .33
My postgraduate nursing education included EOLC content relevant to the critical care context .16 .04 .05 .05 –.04 .04 .43 –.01 .26
Patients at the EOL require little nursing care –.07 .21 –.17 –.20 –.21 –.16 .34 .01 .31
My undergraduate nursing education included EOLC content .12 .01 .12 .13 .04 .01 .28 .02 .14
There are policies/guidelines to assist in the delivery of EOLC in my Unit .16 –.01 –.00 .11 –.03 .26 .28 .04 .26
When withdrawing mechanical ventilation at the EOL, ventilator weaning should occur… –.01 .03 –.05 .00 .04 –.12 .27 –.01 .09
Intravenous fluids should be provided to maintain hydration for the patient at the EOL –.02 .02 –.03 .05 –.10 .06 .23 –.03 .08
I feel adequately prepared to care for patients at the EOL .02 .06 –.02 .03 .07 .08 .08 –.67 .52
I don’t know what to say to the family of a patient at the EOL .00 .06 .04 .05 –.02 –.02 .05 –.64 .45
I have limited knowledge of symptom management for patient’s at the EOL –.06 .07 .07 –.02 .10 .05 .07 –.52 .29
142
Items
Factor loadings
h2 1 2 3 4 5 6 7 8
I feel a sense of personal failure when a patient dies .15 .14 –.09 –.13 –.11 –.06 –.08 –.29 .22
α .85 .70 .79 .81 .64 .80 .66 .69
Note. Factor loadings > .30 are in boldface; EOL = end of life; EOLC = end-of-life care.
143
Table 9-9: Factor correlation matrix for the Factors influencing the provision of
end-of-life care section of the survey instrument
Factor 1 2 3 4 5 6 7 8
1 1.00 .01 –.20 .32 –.23 .29 .13 –.20
2 .01 1.00 –.22 –.05 .04 –.02 .08 –.33
3 –.20 –.22 1.00 –.19 .14 –.21 .00 .17
4 .32 –.05 –.19 1.00 –.13 .24 .10 –.07
5 –.23 .04 .14 –.13 1.00 –.02 –.07 .14
6 .29 –.02 –.21 .24 –.02 1.00 .05 –.02
7 .13 .08 .00 .10 –.07 .05 1.00 –.13
8 –.20 –.33 .17 –.07 .14 –.02 –.13 1.00
Most of the scales achieved a satisfactory Cronbach’s alpha of greater than .70.
Factor one, consisting of six items, represented the latent construct labelled
emotional support for nurses.
Deletion of two items from factor two that do not conceptually fit within this scale
(Pressure area care should continue to be provided for a patient at the end of life
and My own personal experiences of death have influenced the care I provide to
patients at the end of life and their family) increases the alpha of this factor to .73.
The five remaining items in factor two represented the latent construct labelled
palliative values.
Factor three consisted of six items and was labelled patient and family preferences.
The five items in factor four represented the latent construct labelled resources.
Initially, four items loaded on factor five. The item After a decision is made to
withdraw treatment, I spend less time with the patient refers to the self, as opposed to
the other items on factor five, which refer to the larger organisational culture.
Deletion of this item increases the alpha of this scale to .69. The three items in factor
five reflected the latent construct labelled organisational culture.
144
Factor six comprised six items reflecting support for end-of-life care and organising
a plan of care. These items represented the latent construct labelled care planning.
Factor seven was labelled knowledge, to represent the content of the four items that
loaded on this factor. The item Patients at the end-of-life require little nursing care
was conceptually a poor fit with the other items that loaded on factor seven. Deletion
of this item from the scale resulted in an increase of the alpha to .69.
Lastly, the label preparedness was chosen for factor eight to represent the latent
construct measured by the three items in this factor.
Table 9-10: Final factors, labels and Cronbach’s alpha for the Factors
influencing the provision of end-of-life care section of the survey instrument
Factor Label Items α
1 Emotional support for nurses 6 .85
2 Palliative values 5 .73
3 Patient and family preferences 6 .79
4 Resources 5 .81
5 Organisational culture 3 .69
6 Care planning 6 .80
7 Knowledge 4 .69
8 Preparedness 3 .69
Death Anxiety Scale
The internal consistency of the DAS in the current study is the same as that reported
by Templer (1970), who developed the true-false version of DAS (Cronbach’s alpha
.76). McMordie (1979) revised and tested the DAS using a seven-point Likert scale
response format and achieved a slightly higher Cronbach’s alpha of .84. A five-point
Likert scale was utilised in the current study to maintain consistency in response
format across all items in the survey instrument.
145
9.6 Bivariate analysis
The psychometric properties of each of the summated scales generated from EFA are
provided in Tables 9–11 and 9–12. The summated scales from the Critical care
nurses’ end-of-life care practices section of the survey instrument formed the
outcome (dependent) variables in all bivariate and multivariable analysis. The
descriptive statistics and histogram for each of these scales were reviewed to
determine if they met the assumption of normal distribution. An example of the
histogram for the information sharing summated scale is provided in Figure 9–4.
Table 9-11: Psychometric properties of the summated scales from the Critical
care nurses’ end-of-life care practices section of the survey instrument (n = 392)
Scale M SD Median
Range
Skew Potential Actual
Information sharing 44.7 4.7 46 10–50 20–50 –1.09
Environmental modification 38.7 4.0 39 9–45 20–45 –.81
Emotional support 26.7 4.3 27 7–35 11–35 –.43
Patient and family centred
decision making 20.4 3.5 21 5–25 9–25 –.64
Symptom management 29.4 3.4 29 7–35 14–35 –.45
Spiritual support 26.4 3.9 28 6–30 11–30 –1.22
Note. M = Mean; SD = Standard deviation.
146
Table 9-12: Psychometric properties of the summated scales from the Factors
influencing the provision of end-of-life care section of the survey instrument
Scale n M SD Median
Range
Skew Potential Actual
Emotional support for
nurses 383 21.7 4.2 23 6–30 6–30 –.66
Palliative values 386 22.7 2.2 23 5–25 13–25 –.97
Patient and family
preferences 392 24.6 3.1 24 6–30 7–30 –.98
Resources 392 15.2 4.2 16 5–25 5–25 –.15
Organisational culture 392 8.5 2.6 9 3–15 3–15 –.25
Care planning 392 22.7 3.9 23 6–30 9–30 –.63
Knowledge 388 12.1 3.2 12 4–20 4–20 .10
Preparedness 387 11.8 2.3 12 3–15 3–15 –.54
Death Anxiety Scale 392 41.7 6.9 42 15–75 15–61 –.25
Note. M = Mean; SD = Standard deviation.
Figure 9-4: Histogram of information sharing summated scale
147
The normality assumption was also tested using the Shapiro-Wilk test. A significant
result was obtained on the Shapiro-Wilk test for each summated scale, indicating that
the data were significantly different from a normal distribution. However, it is noted
that a significant result on this test can occur in large samples when the distribution is
only slightly different from normal (Hair et al., 2006).
Based on the descriptive statistics, histograms and Shapiro Wilk tests, deviations
from normality were noted for each of the summated scales from the Critical care
nurses’ end-of-life care practices section of the survey instrument. However, it has
been acknowledged that bivariate and multivariate statistical methods are robust against
violations of this assumption (Hair et al., 2006; Tabachnick & Fidell, 2007).
9.6.1 Bivariate analysis of critical care nurses’ end-of-life care practices
summated scales and demographic variables
Information sharing
Statistically significant differences between male and female participants (U =
10837.5, z = 2.43, p < .05; Male Mdn = 43, Female Mdn = 46) and between
participants with postgraduate qualifications (PG) and those without postgraduate
qualifications (non-PG) in nursing (U = 13161.5, z = 2.54, p < .05; PG Mdn = 46,
non-PG Mdn = 44) on the information sharing summated scale were found.
A statistically significant difference across the categories of the demographic
variable years of experience in nursing and the outcome variable of information
sharing [H(4) = 10.88, p < .05] was also identified. Pairwise multiple comparisons
revealed that participants in the 0–5 years category were significantly different from
those in the 11–15 years and 16–20 years of experience categories. However, when
adjustment for multiple comparison was made, a statistically significant difference
was only found between participants with 0–5 years and 16–20 years of experience
(T = –70.82, z = –2.84, p < .05). A boxplot of years of experience in nursing and
information sharing practices is provided in Figure 9–5.
148
Although not statistically significant, the demographic variables of age, location,
years of critical care experience, and time since provision of end-of-life care
achieved a significance level of p < .2 and were identified as potential variables of
importance to information sharing practices.
Figure 9-5: Boxplot of years of experience in nursing and information sharing
practices
Environmental modification
Statistically significant differences between male and female participants (U =
10581.5, z = 2.09, p < .05; Male Mdn = 37, Female Mdn = 39), between participants
working in a major city (Mdn = 39) and those in a regional/remote area (Mdn = 40)
(U = 17935.0, z = 2.23, p < .05) and between participants with postgraduate
qualifications (PG) and those without postgraduate qualifications (non-PG) in
nursing (U = 13256.5, z = 2.65, p < .01; PG Mdn = 39, non-PG Mdn = 38) on the
environmental modification summated scale were found.
149
Although not statistically significant, the demographic variables of age, formal
education in critical care and time since direct patient care achieved a significance
level of p < .2 and were identified as potential variables of importance to
environmental modification practices.
Emotional support
A small positive relationship was found between age and emotional support (rs = .13,
p < .05, n = 391). In addition, a statistically significant difference between male and
female participants was found on the emotional support (U = 11958.0, z = 3.89, p <
.001; Male Mdn = 24, Female Mdn = 27) summated scale.
A statistically significant difference across the categories of the demographic
variable of years of experience in nursing and the outcome variable of emotional
support [H(4) = 11.29, p < .05] was identified. However, no adjusted statistically
significant differences were noted following multiple pairwise comparisons. A box
plot of the categories of years of experience in nursing and the outcome variable of
emotional support is provided in Figure 9–6.
Figure 9-6: Boxplot of years of experience in nursing and emotional support
150
A statistically significant difference across workplaces on the emotional support
[H(5) = 24.01, p < .001] summated scale was identified. Multiple pairwise
comparisons found an adjusted statistically significant difference between the
emergency department workplace and the workplaces general/specialty ICU (T = –
82.79, z = –2.98, p < .05), ICU/CCU/HDU (T = –90.43, z = –3.12, p < .05),
paediatric ICU (T = –152.27, z = –4.49, p < .001) and other clinical (T = 136.87, z =
3.47, p < .01). An adjusted statistical significance was also identified between
general/specialty ICU and paediatric ICU (T = 69.48, z = 3.10, p < .05).
Although not statistically significant, the demographic variable of years of
experience in critical care achieved a significance level of p < .2 and was identified
as a potential variable of importance to emotional support practices.
Patient and family centred decision making
A statistically significant difference between participants with postgraduate
qualifications (PG) and those without postgraduate qualifications (non-PG) in
nursing on the patient and family centred decision making (U = 13793.5, z = 3.29, p
< .01; PG Mdn = 21, non-PG Mdn = 19) summated scale was identified.
Bivariate analysis also revealed a statistically significant difference across
workplaces on the patient and family centred decision making [H(5) = 13.41, p <
.05] summated scale. Multiple pairwise comparisons found an adjusted statistically
significant difference between paediatric ICU and general/specialty ICU for patient
and family centred decision making (T = 71.40, z = 3.19, p < .05).
Although not statistically significant, the demographic variables of gender, location
and time since provision of end-of-life care achieved a significance level of p < .2
and were identified as potential variables of importance to patient and family centred
decision making practices.
151
Symptom management
A small positive relationship was found between age and symptom management (rs =
.17, p < .01, n = 391). A statistically significant difference across the categories of
the variable years of experience in nursing and the outcome variable of symptom
management [H(4) = 16.04, p < .01] was also identified. However, no adjusted
statistically significant difference was found following multiple pairwise
comparisons. A box plot of the relationship between years of experience in nursing
and symptom management is provided in Figure 9–7.
Figure 9-7: Boxplot of years of experience in nursing and symptom management
A statistically significant difference was found between the categories of years of
experience in critical care and the outcome variable of symptom management H(4) =
10.97, p < .05. Pairwise comparison of the categories identified those with 0–5 and
6–10 years of experience were significantly different from both the 16–20 years and
more than 20 years of experience in critical care categories. However, these
significant results were not retained when adjusting for multiple comparisons.
152
A statistically significant difference across workplaces was found on the symptom
management [H(5) = 20.32, p < .01] summated scale. Follow-up analysis using
multiple pairwise comparisons revealed an adjusted statistically significant
difference between the emergency department and paediatric ICU (T = –108.06, z =
–3.19, p < .05) and between the emergency department and workplace category other
clinical (T = 131.50, z = 3.34, p < .05) for the symptom management summated
scale.
Although not statistically significant, the demographic variable of time since
provision of end-of-life care achieved a significance level of p < .2 and was
identified as a potential variable of importance to symptom management practices.
Spiritual support
Bivariate analysis identified statistically significant differences between male and
female participants (U = 11292.5, z = 3.06, p < .01; Male Mdn = 26, Female Mdn =
28) and participants with postgraduate qualifications (PG) and those without
postgraduate qualifications (non-PG) in nursing (U = 13172.5, z = 2.58, p < .05; PG
Mdn = 28, non-PG Mdn = 26) on the spiritual support summated scale.
A statistically significant difference across the categories of the variable years of
experience in nursing and the outcome variable of spiritual support [H(4) = 13.08, p
< .05] was found. Multiple pairwise comparisons revealed an adjusted statistically
significant difference between 0–5 years and 11–15 years of experience in nursing (T
= –85.52, z = –3.05, p < .05) and 6–10 years and 11–15 years of experience in
nursing (T = –69.85, z = –2.88, p < .05) for spiritual support.
Although not statistically significant, the demographic variables of workplace and
time since provision of end-of-life care achieved a significance level of p < .2 and
were identified as potential variables of importance to spiritual support practices.
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No statistically significant or potentially important results were found between the
demographic variable of primary nursing role and any of the outcome (dependent)
variables.
9.6.2 Bivariate analysis of critical care nurses’ end-of-life care practices
summated scales and factors influencing the provision of end-of-life care
summated scales
Spearman’s correlation coefficient was calculated between the summated scales of
each outcome variable and the explanatory variables. A number of statistically
significant relationships were identified (see Table 9–13). All variables correlated at
the minimum level of p < .2 indicating potential variables of importance with the
exception of the relationships between environment modification and knowledge,
symptom management and emotional support for nurses, and symptom management
and resources.
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Table 9-13: Spearman’s rho correlation coefficients between outcome variables and explanatory factors
Information
sharing
Environmental
modification
Emotional
support
Patient and family centred
decision making
Symptom
management
Spiritual
support
Emotional support for nurses
n = 383 .20** .12* .20** .15** .05 .13*
Palliative values
n = 386 .38** .38** .32** .33** .25** .37**
Patient and family preferences
n = 392 .31** .24** .28** .31** .16** .31**
Resources
n = 392 .09 .20** .20** .12* .06 .12*
Organisational culture
n = 392 –.06 .08 –.13* –.08 -.09 -.10
Care planning
n = 392 .32** .10* .19** .20** .11* .20**
Knowledge
n = 388 .18** –.01 .24** .29** .10* .11*
Preparedness
n = 387 .35** .18** .28** .35** .15** .31**
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Death Anxiety Scale
n = 392 –.15** –.09 –.14** –.17** –.08 -.17**
*p < .05, two-tailed. **p < .01, two-tailed.
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9.7 Multivariable analysis
A univariate general linear model was developed using a backward elimination
approach in PASW software version 18 for each of the six outcome variables to
identify the factors associated with critical care nurses’ end-of-life care practices. A
description of each model and model parameters is outlined below. An overview of
the results of assumption testing is then provided.
9.7.1 Information sharing practices model
A statistically significant model of critical care nurses’ information sharing practices
was developed F(3, 377) = 40.53, p < .001. This model explained (adjusted R2)
23.8% of the variation in information sharing practices. The model consisted of three
variables that partially explain information sharing: palliative values F(1, 377) =
41.21, p < .001, partial η2 = .10, care planning F(1, 377) = 27.74, p < .001, partial η2
= .07 and preparedness F(1, 377) = 17.32, p < .001, partial η2 = .04. The parameter
estimates for each explanatory variable included in the final model are provided in
Table 9–14. A positive relationship existed between each of the explanatory
variables and the outcome variable. For example, as palliative values increase by one
unit, information sharing practices increase by .64 when all other variables are held
constant.
Table 9-14: Parameter estimates for information sharing model
Parameter B SE B t 95% CI Partial η2
Palliative values 0.64** 0.10 6.42 [0.45, 0.84] .099
Care Planning 0.29** 0.06 5.27 [0.18, 0.40] .069
Preparedness 0.41** 0.10 4.16 [0.22, 0.61] .044
**p < .001
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9.7.2 Environmental modification practices model
The environmental modification practices model was significant F(5, 380) = 19.55, p
< .001 and explained (adjusted R2) 19.4% of the variation in environmental
modification practices. The overall model consisted of five variables that partially
explain environmental modification practices: Palliative values F(1, 380) = 43.00, p
< .001, partial η2 = .10, patient and family preferences F(1, 380) = 6.91, p < .01,
partial η2 = .02, resources F(1, 380) = 20.47, p < .001, partial η2 = .05,
organisational culture F(1, 380) = 8.45, p < .01, partial η2 = .02 and work location
F(1, 380) = 5.49, p < .05, partial η2 =.01. The parameter estimates for the
environmental modification model are provided in Table 9–15.
Table 9-15: Parameter estimates for environmental modification model
Parameter B SE B t 95% CI Partial η2
Work location—Major city –0.98* 0.42 –2.34 [–1.80, –0.16] .014
Work location—
Regional/remote 0a . . . .
Palliative values 0.57*** 0.09 6.56 [0.40, 0.74] .102
Patient and family preferences 0.18** 0.07 2.63 [0.04, 0.31] .018
Resources 0.22*** 0.05 4.53 [0.12, 0.32] .051
Organisational culture 0.22** 0.08 2.91 [0.07, 0.37] .022
a. This parameter is set to zero because it is redundant.
*p < .05 **p < .01 ***p < .001
The model identified a statistically significant difference in environmental
modification practices between regional areas and major cities. Major cities had a
difference of –.98 in environmental modification practices compared with regional
areas. A positive relationship existed between the parameters palliative values,
patient and family preferences, resources and organisational culture and the outcome
variable of environmental modification.
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9.7.3 Emotional support practices model
A model of critical care nurses’ emotional support practices was developed. This
model was significant F(10, 366) = 12.10, p < .001 and explained (adjusted R2)
22.8% of the variation in emotional support practices. The model consisted of six
variables that partially explain emotional support practices: Palliative values F(1,
366) = 6.92, p < .01, partial η2 = .02, patient and family preferences F(1, 366) =
10.18, p < .01, partial η2 = .03, knowledge F(1, 366) = 8.75, p < .01, partial η2 = .02,
preparedness F(1, 366) = 12.03, p < .01, partial η2 = .03, gender F(1, 366) = 13.12, p
< .001, partial η2 = .04 and workplace F(5, 366) = 4.62, p < .001, partial η2 = .06.
Post-hoc pairwise comparison identified a significant mean difference in emotional
support practices between participants working in an emergency department and all
other clinical areas (p < .05). Emotional support practices were lower in emergency
departments than in other clinical areas. No other comparisons between workplaces
were found to be significant.
Table 9–16 provides the parameter estimates for the emotional support practices
model. Male gender was associated with a statistically significant decrease in
emotional support practices by 2.12, compared with females. Each of the explanatory
variables, palliative values, patient and family preferences, knowledge and
preparedness, had a positive relationship with emotional support practices.
Table 9-16: Parameter estimates for emotional support model
Parameter B SE B t 95% CI Partial η2
Male –2.12*** 0.59 –3.62 [–3.27, –0.97] .035
Female 0a . . . .
Other non-clinical –0.22 0.71 –0.31 [–1.62, 1.17] .000
Other clinical 2.43* 1.04 2.34 [0.39, 4.47] .015
Emergency department –3.57*** 0.99 –3.60 [–5.51, –1.62] .034
Paediatric ICU 0.99 0.80 1.24 [–0.59, 2.58] .004
ICU/CCU/HDU 0.29 0.49 0.59 [–0.68, 1.25] .001
General/Specialty ICU 0a . . . .
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Palliative values 0.25** 0.10 2.63 [0.06, 0.44] .019
Patient and family preferences 0.22** 0.07 3.19 [0.08, 0.35] .027
Knowledge 0.19** 0.07 2.96 [0.07, 0.32] .023
Preparedness 0.33** 0.10 3.47 [0.14, 0.52] .032
Note. ICU = intensive care unit; CCU = coronary care unit; HDU = high dependency
unit.
a. This parameter is set to zero because it is redundant
*p < .05 **p < .01 ***p < .001
9.7.4 Patient and family centred decision making practices model
A univariate general linear model was developed to identify the factors associated
with critical care nurses’ patient and family centred decision making practices. The
final model was significant F(8, 362) = 17.61, p < .001 and explained (adjusted R2)
26.4% of the variation in patient and family centred decision making practices. The
overall model consisted of eight variables that partially explain patient and family
centred decision making practices: Emotional support for nurses F(1, 362) = 4.48, p
< .05, partial η2 = .01, palliative values F(1, 362) = 12.72, p < .001, partial η2 = .03,
patient and family preferences F(1, 362) = 21.90, p < .001, partial η2 = .06,
knowledge F(1, 362) = 13.33, p < .001, partial η2 = .04, preparedness F(1, 362) =
19.20, p < .001, partial η2 = .05, death anxiety F(1, 362) = 5.09, p < .05, partial η2 =
.01, work location F(1, 362) = 4.74, p < .05, partial η2 = .01 and qualification F(1,
362) = 4.86, p < .05, partial η2 = .01.
The parameter estimates for each variable included in the patient and family centred
decision making practices model is provided in Table 9–17. The model identified a
statistically significant difference in patient and family decision making practices
between regional areas and major cities. Major cities had a difference of –.77 in
patient and family decision making practices compared with regional areas. In
addition, participants without postgraduate qualifications had a difference in patient
and family centred decision making of –.94 compared with those with postgraduate
qualifications. A statistically significant positive relationship was identified between
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the explanatory variables of palliative values, patient and family preferences,
knowledge and preparedness and the outcome variable of patient and family centred
decision making. A statistically significant negative relationship was noted between
the explanatory variables of emotional support for nurses and DAS and the outcome
variable of patient and family centred decision making.
Table 9-17: Parameter estimates for patient and family centred decision making
model
Parameter B SE B t 95% CI Partial η2
Work location—Major city –0.77* 0.35 –2.18 [–1.46, –0.08] .013
Work location—
Regional/remote
0a
.
. .
.
Hospital certificate/
Undergraduate
–0.94*
0.43
–2.21 [–1.78, –0.10]
.013
Postgraduate 0a . . . .
Emotional support for nurses –0.09* 0.04 –2.12 [–0.17, -0.01] .012
Palliative values 0.27*** 0.08 3.57 [0.12, 0.42] .034
Patient and family preferences 0.25*** 0.05 4.68 [0.15, 0.36] .057
Knowledge 0.20*** 0.06 3.65 [0.09, 0.31] .036
Preparedness 0.34*** 0.08 4.38 [0.19, 0.49] .050
Death anxiety scale –0.05* 0.02 –2.26 [–0.10, –0.01] .014
a. This parameter is set to zero because it is redundant
*p < .05 **p < .01 ***p < .001
9.7.5 Symptom management practices model
A univariate general linear model was developed to identify the factors associated
with critical care nurses’ symptom management practices. The overall model was
significant F(8, 376) = 7.10, p < .001) and explained (adjusted R2) 11.3% of the
variation in symptom management practices. The overall model consisted of four
variables that partially explain symptom management practices: Palliative values
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F(1, 376) = 15.79, p < .001, partial η2 = .04, patient and family preferences F(1, 376)
= 4.49, p < .05, partial η2 = .01, age F(1, 376) = 12.65, p < .001, partial η2 = .03 and
workplace F(5, 376) = 3.17, p < .01, partial η2 = .04. Post-hoc pairwise comparisons,
with Bonferroni correction for multiple comparisons, identified no significant mean
difference between the workplace categories. The parameter estimates for the
symptom management model are provided in Table 9–18. A significant positive
relationship was identified between the explanatory variables of palliative values,
patient and family preferences and age and the outcome variable of symptom
management practices.
Table 9-18: Parameter estimates for symptom management model
Parameter B SE B t 95% CI Partial η2
Other non-clinical 1.01 0.59 1.71 [–0.15, 2.17] .008
Other clinical 2.59** 0.88 2.95 [0.86, 4.32] .023
Emergency department –0.62 0.84 –0.75 [–2.27, 1.02] .001
Paediatric ICU 1.41* 0.68 2.08 [0.08, 2.74] .011
ICU/CCU/HDU 0.08 0.41 0.19 [–0.73, 0.89] .000
General/Specialty ICU 0a . . . .
Palliative values 0.30*** 0.08 3.97 [0.15, 0.46] .040
Patient and family preferences 0.12* 0.06 2.12 [0.01, 0.23] .012
Age 0.07*** 0.02 3.56 [0.03, 0.10] .033
Note. ICU = intensive care unit; CCU = coronary care unit; HDU = high dependency
unit.
a. This parameter is set to zero because it is redundant.
*p < .05 **p < .01 ***p < .001
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9.7.6 Spiritual support practices model
A univariate general linear model was developed to identify the factors associated
with critical care nurses’ spiritual support practices. The overall model was
significant F(9, 367) = 14.66, p < .001 and explained (adjusted R2) 24.6% of the
variation in spiritual support practices. The overall model consisted of six variables
that partially explain spiritual support practices: Palliative values F(1, 367) = 18.64,
p < .001, partial η2 = .05, patient and family preferences F(1, 367) = 17.16, p < .001,
partial η2 = .05, preparedness F(1, 367) = 16.83, p < .001, partial η2 = .04, gender
F(1, 367) = 11.84, p < .01, partial η2 = .03, nursing experience F(4, 367) = 3.11, p <
.05, partial η2 = .03 and qualification F(1, 367) = 4.24, p < .05, partial η2 = .01. Post-
hoc pairwise comparison with Bonferroni correction revealed a significant mean
difference between 0–5 years and 11–15 years of nursing experience and between 0–
5 years and more than 21 years of nursing experience. Participants with 0–5 years of
experience had lower mean scores on the spiritual support summated scale.
Table 9–19 provides the parameter estimates for the variables included in the
spiritual support practices model. It is noted that male gender was associated with a
change in spiritual support practices of –1.78 compared with females. The
explanatory variables of palliative values, patient and family preferences and
preparedness all had a positive relationship with the outcome variable of spiritual
support.
Table 9-19: Parameter estimates for spiritual support model
Parameter B SE B t 95% CI Partial η2
Nursing experience 0–5 years –2.02** 0.69 –2.93 [–3.37, –0.66] .023
Nursing experience 6–10 years –0.71 0.52 –1.36 [–1.73, 0.32] .005
Nursing experience 11–15 years 0.81 0.65 1.25 [–0.46, 2.09] .004
Nursing experience 16–20 years –0.18 0.51 –0.35 [–1.17, 0.82] .000
Nursing experience >21 years 0a . . . .
Male –1.78** 0.52 –3.44 [–2.80, –0.77] .031
Female 0a . . . .
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Hospital certificate/
Undergraduate
–0.99*
0.48
–2.06 [–1.93, –0.04]
.011
Postgraduate 0a . . . .
Palliative values 0.36*** 0.08 4.32 [0.20, 0.53] .048
Patient and family preferences 0.24*** 0.06 4.14 [0.12, 0.35] .045
Preparedness 0.34*** 0.08 4.10 [0.18, 0.50] .044
a. This parameter is set to zero because it is redundant
*p < 0.05 **p < 0.01 ***p < 0.001
A summary of the significant explanatory variables in each practice model is
provided in Table 9–20. The explanatory variable of palliative values was significant
in each practice model. Patient and family preferences was a significant explanatory
variable in all models except the information sharing practices model. The
explanatory variables representing the construct context were only significant in the
environmental modification practices model and were not identified as significant
explanatory variables in the other practice models.
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Table 9-20: Comparison of practice models and contributing parameters
Information
sharing
Environmental
modification
Emotional support Patient and family centred decision
making
Symptom
management
Spiritual support
Context
Organisational culture X
Resources X
Evidence
Patient and family preferences X X X X X
Knowledge X X
Preparedness X X X X
Facilitation
Palliative values X X X X X X
Emotional support for nurses X
Care planning X
Death Anxiety Scale X
Demographics
Age X
Gender X X
Nursing experience X
Critical care experience
Work location X X
Workplace X X
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Qualification X X
Critical care education
Primary nursing role
Time since direct patient care
Time since provision of EOL care
Note. EOL = end of life.
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9.8 Assumption testing
The assumptions of normality, linearity, homoscedasticity/homogeneity and
multicollinearity were assessed for each model. Prior to bivariate analysis, review of
the histogram and Shapiro Wilk statistic for each outcome variable indicated that the
data was not normally distributed. However, both bivariate and multivariate statistics
are generally robust against violations of this assumption, particularly when sample
sizes exceed 200 participants (Hair et al., 2006), as they did in this phase of the
study.
Residual plots of observed-by-predicted-by-standardised values for each of the
models were also obtained to assess the assumptions of multivariate normality,
linearity and equality of variance. Review of residual plots for equal variance of the
residuals, with the residuals randomly distributed around zero, indicates the
assumptions are met within the model. Figure 9–8 is an example of the residual plot
for the emotional support practices model.
Figure 9-8: Residual plot of emotional support practices model
Homoscedasticity/homogeneity of variances was also assessed using Levene’s Test
of Equality of Error Variances. A non-significant result on this test indicates that the
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assumption is not violated and that variances are equal. Levene’s test was significant
for the spiritual support model F(18, 358) = 2.30, p < .01), indicating violation of this
assumption. Similarly to tests of normality, Levene’s test is sensitive to large sample
sizes, with small deviations in equality of variances producing a significant result on
this test (Field, 2009; Hair et al., 2006). In light of the large sample used in phase
three of the study and the assumption of homoscedasticity being met in five of the six
practice models, no further action was considered necessary in regard to the
significant result on Levene’s test for the spiritual support model.
9.9 Summary
In summary, analysis of data obtained from survey responses of 392 critical care
nurses was undertaken in this third phase of the study. Key results of this phase
included the identification of six end-of-life care practice areas: information sharing,
environmental modification, emotional support, patient and family centred decision
making, symptom management and spiritual support. Using a backward elimination
approach, a general linear model for each of the six practice areas was built,
identifying the significant explanatory variables of each end-of-life care practice
area. The explanatory variable of palliative values was a significant contributor in
each practice model, and patient and family preferences was a significant
explanatory variable in all models except the information sharing practices model.
However, the explanatory variables representing the construct context were only
significant to environmental modification practices and not identified as significant
explanatory variables in the other practice models.
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10 DISCUSSION
10.1 Introduction
The purpose of this three-phase exploratory sequential mixed methods study was to
identify the practices undertaken by critical care nurses in the provision of end-of-life
care and the factors associated with engagement in these practices. Three key
research questions guided this study: What are the most frequently reported end-of-
life care practices of Australian critical care nurses? What are the factors influencing
the provision of end-of-life care as perceived by Australian critical care nurses?
What factors are associated with Australian critical care nurses’ end-of-life
practices? The findings of this study depict a context of practice in which critical
care nurses actively engage in many important practices to facilitate quality care at
the end of life. The findings do, however, highlight some variation in the extent to
which these practices are reported by nurses. Importantly, the study has identified
key factors that contribute to this variation. This chapter will discuss the key findings
of the study. The chapter concludes with a discussion of the strengths and limitations
of the study.
10.2 What are the most frequently reported end-of-life care practices of
Australian critical care nurses?
Six end-of-life care practice areas were identified in phase three of this study:
information sharing, environmental modification, emotional support, patient and
family centred decision making, symptom management, and spiritual support. The
practices most frequently identified as always undertaken were within the
environmental modification and information sharing practice areas. The practices
least frequently identified as always undertaken included items from the emotional
support and symptom management practice areas.
The majority of nurses in this study reported always engaging in practices to modify
the environment to support family presence and create a peaceful setting for the
patient and family to experience end-of-life care. Specifically, permitting the family
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to visit outside of regular visiting hours and placing chairs around the bed for the
family were the most frequently reported end-of-life care practices, with 75% of
participants indicating that they always engage in these practices. These types of
unrestricted visiting practice have been identified in a number of previous studies of
intensive care nurses and acute medical ward nurses as being important elements of
quality end-of-life care (Latour et al., 2009; Thompson et al., 2006).
Drawing curtains to provide privacy for the patient and family was also among the
most frequently reported practices by nurses in phase three of this study, with 69.1%
of participants identifying that they always undertake this practice. Such findings
were consistent with comments by participants in phase one of this study, which
indicated that interventions to maintain privacy were considered important for
patients at the end of life and their families, as well as for other critically ill patients
and their families. Providing time and space to enable families to be with their dying
relative at end of life is thus an important element of care. However, findings also
revealed that moving the patient to a more private area of the unit was among the
least frequently reported practices, with only 19.9% of participants indicating that
they always undertake this practice. Indeed, critical care unit design and/or
availability of private rooms can limit opportunities for the provision of end-of-life
care in private rooms. Lack of privacy has been identified as a barrier to good end-
of-life care in previous qualitative studies with intensive care nurses (Bloomer et al.,
in press; Calvin et al., 2009; Fridh et al., 2009; McKeown et al., 2010), and in other
studies involving critical care nurses in emergency departments (Jackson et al.,
2010). As such, while transferring patients to private rooms may not always be
possible in modern critical care units, the priority given by nurses in this study to
privacy emphasises the importance they place on modifying the environment, when
possible, to ensure quality end-of-life care.
The findings of phase three of this study also revealed more frequent engagement in
practices from the information sharing practice area, and less frequent engagement in
practices from the emotional support practice area. Specifically, information sharing
practices frequently identified as always undertaken included: introducing the
nursing staff on the oncoming shift to the patient and family (75.8%), handing over
the family’s preference for the patient’s end-of-life care to the oncoming nurse (73%)
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and answering the family’s questions about the patient’s condition (65.8%). The type
of support for family members through information sharing that was reflected in
these responses has been identified in previous studies as contributing to good end-
of-life care (Borbasi et al., 2005; Fridh et al., 2009). In contrast, while practices
related to emotional support were used by many participants in this study, such
practices were among the practices least frequently identified as always undertaken
in the provision of end-of-life care. For example, only 18.4% of participants
identified that they always encourage the family to reminisce about the patient. This
is despite studies that have highlighted that encouraging the family to talk about the
patient can be important to humanising the patient for the nurse (Calvin et al., 2009;
Fridh et al., 2009; Hov et al., 2007). In addition, less than one-third of participants
(32.9%) always provide opportunities for the family to create positive memories.
Although few other studies have evaluated the benefits of memory-making practices
in the provision of end-of-life care in critical care settings, creating good memories
has been suggested as contributing to a good end-of-life care experience for families
(Espinosa et al., 2010; Fridh et al., 2009; Vanderspank-Wright et al., 2011).
Variation in the frequency of reported engagement in practices in the symptom
management practice area was also identified in the findings of phase three of this
study. For instance, providing care to maintain patient hygiene was a frequently
reported practice, always undertaken by 75.8% of participants. However, only 20–
24% of participants identified that they always regularly obtain and document patient
vital signs during the provision of end-of-life care, initiate (or implement) weaning
from mechanical ventilation and administer fluids to the patient to maintain
hydration. In contrast, in a survey of European intensive care nurses, 71.7% agreed
that ventilated patients should have their oxygen level reduced to room air and 74%
agreed that patients at the end of life should receive fluids to maintain hydration
(Latour et al., 2009). Other qualitative studies have also identified end-of-life care
practices in the provision of care to maintain patient hygiene (McClement & Degner,
1995) and reduce technical equipment and monitoring (Fridh et al., 2009; Halcomb
et al., 2004; Hov et al., 2007). Differences in item wording and the measurement
scale between the survey instruments and differences between the intensive care
nurse and critical care nurse samples could explain some of the variation in the
findings between studies in this field. However, it is also likely that this variation
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reflects the general lack of clear evidence and guidance relating to symptom
management practices for critical care patients at end of life that has previously been
noted in the literature (Coombs & Long, 2008).
There are a number of explanations for the findings reported in this study regarding
the end-of-life care practices of critical care nurses. First, some authors have argued
that the ambivalent relationship that modern society has with death and dying is
reflected in the way in which health care professionals today practice end-of-life care
(McNamara, 2001; Stevens, McFarlane, & Stirling, 2000; Timmermans, 2005). For
example, the environmental modification practices frequently reported as always
undertaken in phase three of this study are important in the context of modern health
care, in which the institutionalisation of death and dying and control of these
processes by health care professionals have become increasingly common
(McNamara, 2001; Strazzari, 2005; Timmermans, 2005). Whereas once a person
would die at home surrounded by the loving care of his or her family and friends,
advances in medicine and technology during the second half of the twentieth century
have enhanced the ability to prolong life and delay death (McNamara, 2001). The
majority of deaths now occur within health care institutions, in which use of
technical interventions in the care of the patient and institutional practices such as
restricted visiting hours create a position of greater control over the dying process by
health care professionals (McNamara, 2001). In response to these trends, family
centred care during the provision of end-of-life care in critical care settings has been
identified as a ‘comprehensive ideal’ (Truog et al., 2008, p. 953). Critical care
nurses’ engagement in environmental modification practices arguably reflect
attempts to share control and support inclusion of families experiencing death and
dying in critical care settings. For example, flexibility in visiting hours and placing
chairs around the bed are modifications that can be easily undertaken by nursing staff
to support the family being with the patient at the end of life. However, while these
environmental modification practices that focus on securing privacy within the
constraints of an environment designed for curative care do reflect nurses’
appreciation of the personal and private nature of death and dying, other writers
suggest that such practices can also reflect an attempt to sequester death from the
public arena. That is, some authors have suggested that a culture of avoidance of
death exists in modern society, whereby the dying patient in critical care is hidden
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from view to minimise disruption and the discomfort that human beings experience
when faced with death (Byock, 2002; Hart et al., 1998; McNamara, 2001; Strazzari,
2005; Timmermans, 2005). These types of contrasting explanation for the common
end-of-life care practices of nurses in critical care reflect what has been referred to as
the ambivalent location of death in modern society (Byock, 2002; Exley, 2004;
McNamara, 2001; Strazzari, 2005; Timmermans, 2005).
Secondly, environmental modification practices as described by critical care nurses
in this study are designed to create a calm, peaceful environment. Similarly, the
symptom management practices commonly described by nurses emphasise a key
focus on comfort. These goals are consistent with modern notions of a good death.
More specifically, although variation in the concept of good death has been identified
in a conceptual analysis that included both nursing and sociological literature (Kehl,
2006), a good death or quality end-of-life care as identified in empirical studies
involving critical care nurses is often associated with maintaining patient dignity
(Beckstrand et al., 2006; Halcomb et al., 2004; Kirchhoff et al., 2000). The responses
of nurses in this study suggest that provision of care to maintain patient hygiene is
perceived by critical care nurses as contributing to patient dignity at the end of life,
while other technical-medical interventions pertaining to the physical care of the
patient are not important at this time. Importantly, the social construction of death
and dying, including the labelling of death as good or bad, is to some extent
influenced by those with social control over these processes. As such, death and
dying that conforms to the rules of the health care institution and the expected norms
of behaviour from the perspective of health care professionals may not be consistent
with a good death from the perspective of the individual patient and family (Hart et
al., 1998; McNamara, 2001). This study did not explicitly seek to explore the concept
of good death and, although what a good death entails, from the perspective of
critical care nurses, is not explicitly articulated, it is arguably embedded within the
selection of items in survey development and participant responses to the survey.
It is also important to examine reasons for the findings of this study that suggest that,
while there is a high level of engagement in information sharing, emotional support
practices were less frequently reported. Interpersonal engagement in end-of-life care
can be emotionally confronting and may pose difficulties for critical care nurses
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lacking experience in the provision of end-of-life care as well as for those frequently
exposed to death and human suffering. One possible reason for emotional support
practices being less frequently reported than information sharing practices could thus
be intentional or unintentional avoidance behaviours designed to minimise emotional
involvement and associated stress and burnout (Byock, 2002). Indeed, advances in
medicine and technology have delayed death until older age and contributed to the
institutionalisation of death and dying. These changes to the frequency and location
of death and dying have reduced opportunities for personal experience with and
learning from death and dying (Hockey, 2007; Stevens et al., 2000). Alternatively,
the argument that death is denied in contemporary Western society has been largely
contested. Instead, a view of death as socially awkward, where people are concerned
about saying or doing the right thing and thus avoiding meaningful interpersonal
interactions, has been presented (Byock, 2002; Exley, 2004; McNamara, 2001).
Participants in phase one of this research study alluded to the challenges of
interpersonal care at the end of life, referring to explaining and providing information
as a safe area of practice.
Providing information and answering questions about the patient’s condition are
aspects of practice that arguably require less emotional engagement by the nurse.
These practices, frequently noted by nurses in this study, could thus be less
confronting than other interpersonal practices related to emotional support of patients
at the end of life and their families. Emotional support practices may be especially
difficult for nurses in critical care units because patients at the end of life are often
cognitively impaired as a result of their injury/illness or administration of sedatives
used in their medical management (Truog et al., 2008). The patient’s cognitive
impairment limits nurses’ ability to establish a relationship and interact with the
patient. Related to this is the reality that critical care nurses’ preparation for end-of-
life care has to date been limited. Several authors have identified a lack of end-of-life
content in formal critical care nurse education (Campbell, 2002; Efstathiou &
Clifford, 2011; Kirchhoff & Kowalkowski, 2010). Thus, critical care nurses may
engage in information sharing practices, protecting their own vulnerability within the
emotionally confronting area of end-of-life care.
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10.3 What are the factors influencing the provision of end-of-life care as
perceived by Australian critical care nurses?
In the previous section, critical care nurses’ reports of their end-of-life care practices
have been described, and some potential explanations for the findings of this study
have been presented. An important contribution of this study is that data were
collected to allow an examination of relationships between various contextual and
personal factors, to further understand the factors that might explain critical care
nurses’ end-of-life care practices. Specifically, the PARIHS framework provided the
framework for the current study to identify the factors that can influence the
provision of end-of-life care in critical care settings. The three key elements of the
PARIHS framework—context, evidence and facilitation—were considered to capture
the complexity of factors that can influence nursing practice. In phase three of the
current study, eight latent constructs were identified during EFA, and these
constructs conceptually fit within the three elements of the PARIHS framework. The
elements of context, evidence and facilitation will provide an organising framework
in this section to discuss key findings pertaining to the research question: What are
the factors influencing the provision of end-of-life care as perceived by Australian
critical care nurses?
10.3.1 Context
The element context, within the PARIHS framework, is defined as all aspects of the
setting in which practice takes place (McCormack et al., 2002, p. 94). Conceptual
analysis of the element of context by the authors of the PARIHS framework
identified culture, the physical environment, leadership and evaluation of
performance as factors contributing to the context of the practice setting
(McCormack et al., 2002; Rycroft-Malone et al., 2002). In phase three of the current
study, EFA of participant responses to the survey instrument identified the latent
constructs organisational culture and resources. These constructs were considered to
represent contextual factors that potentially influence the provision of end-of-life
care in critical care settings.
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The items in the latent construct organisational culture reflected a context of nurse-
led practice during the provision of end-of-life care and did not include items
capturing the attitudes of the medical team towards end-of-life care or the broader
curative culture. In phase three of this study, 55.6% of participants agreed or strongly
agreed that less time is spent with the patient by the critical care medical team and
56% of participants agreed or strongly agreed that nurses are left to manage care of
the patient. In addition, most participants (80.1%) disagreed or strongly disagreed
with the statement after a decision is made to withdraw treatment, I spend less time
with the patient. These findings provide evidence of a practice context of nurse-led
care after a decision is made to withhold or withdraw life-sustaining treatment. The
perception that the medical team withdraw from participating in the care of the
patient following the decision to withdraw life-sustaining treatment was also shared
by participants during interviews in phase one of this study.
The findings of the current study are consistent with other qualitative studies
undertaken in Australia that have reported the perception that nurses are left to
manage the process of withdrawal of treatment and the provision of care to the
patient at the end of life (Halcomb et al., 2004; Heland, 2006). The perception that
the medical team determines treatment and critical care nurses are then left to
implement treatment decisions and manage the provision of end-of-life care has also
been reported internationally (Coombs & Long, 2008; Espinosa et al., 2010;
Kirchhoff & Kowalkowski, 2010; Seymour, 2001). In a recent survey of critical care
nurses undertaken in the United States, the presence of medical staff at the patient’s
bedside following withdrawal of life-sustaining treatment was reported to occur
sometimes by 30.3% of critical care nurses, but rarely or never by 45% of critical
care nurses (Kirchhoff & Kowalkowski, 2010).
Previous literature has highlighted the curative culture of critical care settings as a
barrier to end-of-life care (Crump et al., 2010; Nelson, 2006; Davidson et al., 2002).
In particular, the perception of death as failure can pose a barrier to end-of-life care
in the critical care setting (Beckstrand et al., 2006; McKeown et al., 2010). Although
participants in phase one of this study acknowledged the perception of death as
failure, they themselves stated that they valued their participation in the provision of
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end-of-life care. Similarly, the perception of death as failure was not shared by
90.8% of participants in phase three of the current study. Instead, participants valued
their participation in the provision of end-of-life care.
A second important feature of the context of critical care settings that was identified
as being important to how end-of-life care was provided related to the physical
environment and resources. Specifically, resources represented the availability of
space and equipment, as well as adequate staffing to enable the provision of end-of-
life care. In phase three of this study, 60% of participants disagreed or strongly
disagreed that the physical environment of their unit is ideal for providing end-of-life
care. However, greater variation was noted in access to resources with 37.5%
agreeing or strongly agreeing that their unit is adequately equipped to support the
comfort needs of the family during end-of-life care and 47.7% disagreeing or
strongly disagreeing with this statement. The responses of some participants in the
current study were consistent with previous research that has identified the
perception that critical care and acute care environments are not adequately designed
or resourced for the provision of end-of-life care (Beckstrand et al., 2008; Bloomer et
al., in press; Davidson et al., 2003; Jackson et al., 2010; McKeown et al., 2010;
Nordgren & Olsson, 2004; Wotton et al., 2005).
An organisational culture reflecting nurse-led care at the end of life and the
availability of resources were factors contributing to the practice context of the
critical care setting and influencing the provision of end-of-life care. The broader
context of critical care, which reflects a curative culture whereby medical
practitioners withdraw from end-of-life care provision, highlights an important shift
in practice, with practice largely nurse led and more family centred than care for
patients who are being treated with curative intent. Several factors can contribute to
nurse-led practice in the provision of end-of-life care. Critical care nurses typically
have a high level of autonomy and tend to practice alongside their medical
colleagues (Seymour, 2001). Registered nurses are also generally highly skilled in
providing comfort and have a close relationship with the patient and family
(Seymour, 2001) through always being at the bedside. Such features of the critical
care context can strengthen the nurse’s position and possibly limit the participation
of their medical colleagues in situations in which comfort and support are priorities
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of care. That is, although a one-to-one nurse patient ratio exists in critical care
settings, the critical care medical team are responsible for the care of multiple
patients and the allocation of finite resources (Seymour, 2001). Thus, following a
decision to withhold or withdraw life-sustaining treatment, the medical team may
redirect their attention to other critically ill patients to achieve the aim of critical care
in curing illness and preserving life.
Critical care environments are noisy, fast-paced environments designed for
monitoring critically ill patients and resourced to support curative care. Although
variation in participant responses regarding resource availability was identified,
nurses can use their initiative to create a context to positively influence the provision
of end-of-life care in critical care settings. Thus, it is perhaps not surprising that the
provision of end-of-life care by nurses can occur in isolation to the broader practice
context of curative care and environmental constraints.
10.3.2 Evidence
In the PARIHS framework, evidence is broadly defined to include all sources of
evidence that inform practice. In a conceptual analysis of the element of evidence,
research, clinician practice knowledge and patient’s experiences and preferences
were all identified as sources of evidence (Rycroft-Malone et al., 2002). Similarly, in
phase three of the current study, EFA of participant responses to the survey identified
three latent constructs—knowledge, preparedness and patient and family
preferences—which conceptually fit within the element of evidence as defined in the
PARIHS framework.
The items comprising the latent construct of knowledge did not assess nurses’ actual
knowledge related to end-of-life care but rather assessed opportunities for knowledge
acquisition through inclusion of end-of-life content in workplace in-services and
postgraduate nursing education, and use of evidence from the literature. In phase
three of this study, variation in response was noted for the items concerning end-of-
life content in in-service education and in undergraduate and postgraduate nursing
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education programmes. Just over half of all participants disagreed or strongly
disagreed that they had received in-service education that assists them to provide
care and manage patient symptoms at the end of life (54.7%) or in-service education
that assists them to support and communicate with families of dying patients
(53.8%). Approximately one-third of participants disagreed or strongly disagreed that
their undergraduate nursing education included end-of-life care content (36.2%) or
that their postgraduate nursing education included end-of-life care content relevant to
the critical care context (33.6%). Similarly, Bloomer et al. (in press) conducted focus
groups across two Australian metropolitan ICUs and reported the perception of
inadequate training in the provision of end-of-life care among critical care nurse
participants. In addition, a survey of critical care nurses in the United States reported
that 44% of participants had attended an in-service on withdrawal of life-sustaining
treatment and 78.7% reported no content related to withdrawal of life-sustaining
treatment during their initial nursing education (Kirchhoff & Kowalkowski, 2010).
Lack of end-of-life content in nursing education (Campbell, 2002; Efstathiou &
Clifford, 2011) and lack of knowledge as barriers to end-of-life care (Nordgren &
Olsson, 2004) have previously been noted in the literature.
Despite identifying limited end-of-life content in in-service education and formal
nursing education, 78.9% of participants agreed or strongly agreed that they felt
adequately prepared to care for patients at the end of life. In addition, 72.6%
disagreed or strongly disagreed that they don’t know what to say to the family of a
patient at the end of life and 80.6% disagreed or strongly disagreed that they have
limited knowledge of symptom management for patients at the end of life. Thus,
participants in this study generally agreed that they are adequately prepared, despite
having limited access to formal opportunities for knowledge acquisition regarding
end-of-life care through workplace in-services and formal nursing education. It
should be noted that the majority of critical care nurses responding to the survey
were experienced critical care nurses, with 64% reporting more than 10 years of
experience in a critical care setting. Kirchhoff and Kowalkowski (2010) also reported
that almost half (49.7%) of critical care nurses in their study were very confident in
their own ability to provide end-of-life care, despite limited education and training.
However, their participants were also experienced critical care nurses (median 18
years of experience). Evidence for practice is not only obtained through education
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and training opportunities. Experience can contribute to nurse practice knowledge
and nurses’ perceptions of their personal preparedness to provide end-of-life care.
Previous research supports this view, suggesting that actual experience in the
provision of end-of-life care contributes to nurse practice knowledge in this area
(Fridh et al., 2009; Heland, 2006; Zomorodi & Lynn, 2010b).
Patient and family preferences are also factors contributing to evidence influencing
the provision of end-of-life care. In the current study, the majority of participants
agreed or strongly agreed with statements reflecting inclusion of patient and family
preference in their unit, including families are involved in decisions about the dying
patient (90.3%), the patient’s preference (or their likely preference according to
family) for end-of-life care are considered (86%) and family meetings with the health
care team are held to resolve differing views about a patient’s treatment (87.5%). The
inclusion of patients and families in end-of-life decision making is supported in the
position statement on withholding and withdrawing treatment published by ANZICS
(2003). In addition, the inclusion of families in end-of-life decision making and the
actual provision of end-of-life care has been perceived to contribute to a good death
(Borbasi et al., 2005).
Almost all participants in phase three of this study agreed or strongly agreed that
withdrawal of life-sustaining treatment is delayed while waiting for relatives of the
patient to arrive (91%) and that families are given adequate time to consider
decisions to withhold or withdraw life-sustaining treatment for the patient (85.5%).
Delay following a decision to withdraw life-sustaining treatment was also raised by
participants during interviews in phase one of this study. Other qualitative studies
have similarly acknowledged that withdrawal of treatment can be delayed to enable
time for family to accept the change in treatment plan and/or gather at the bedside
(Bloomer et al., in press; Calvin et al., 2009; McMillen, 2008). Family presence is
associated with good death in critical care settings and families have reported
dissatisfaction with their end-of-life experience when they were not present at the
time of their relative’s death (Kjerulf, Regehr, Popova, & Baker, 2005). However,
the continuation of aggressive treatment or prolongation of inevitable death while
waiting for the family may cause unnecessary discomfort and suffering for the
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patient (Crump et al., 2010) and thus, the needs of the patient must be balanced with
the need for family presence.
Opportunities for knowledge acquisition, personal preparedness and patient and
family preferences contribute to the element of evidence, influencing the provision of
end-of-life care for Australian critical care nurses in this study. Specifically, the lack
of education and training, including end-of-life care content, perception of
preparedness and the inclusion of patient and family in end-of-life care, can be partly
explained by the medicalisation and institutionalisation of death and dying in modern
society. The focus of critical care is on curative care, and finite resources are
distributed to achieve this aim. This curative focus is reflected in the content of
training and education, with evidence suggesting that knowledge pertaining to
curative treatment and care is prioritised and end-of-life content has historically been
minimal or absent (Campbell, 2002; Efstathiou & Clifford, 2011).
The ageing population, medical advances postponing death and the
institutionalisation of death and dying have created a situation in which experience of
death and dying will often not be encountered until later in life (Exley, 2004;
Hockey, 2007). Many nurses begin their professional lives having little or no formal
education or training in end-of-life care and no personal experience with death or
loss (Hockey, 2007; Stevens et al., 2000). Thus, they may be inadequately prepared
for the provision of end-of-life care. Experience in the provision of end-of-life care
in the workplace and reflection on this experience contribute to nurses’ practice
knowledge and perception of their personal preparedness. The majority of
participants in phase three of the current study were experienced critical care nurses,
who felt prepared for the provision of end-of-life care despite limited or no formal
education or professional development in end-of-life care.
The admission of critically ill and dying patients to acute care hospitals has resulted
in the institutionalisation of death and dying, under the control of the medical
professions (Exley, 2004; Hart et al., 1998; McNamara, 2001). Although critical care
settings are focused on curative treatment, when a decision is made to withdraw or
withhold life-sustaining treatment, critical care nurses are placed in a position in
which they obtain increased control over the dying process and death. Attitudes and
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practices that invite patient and family participation are important in sharing control
of the processes of dying and death. For example, in the critical care setting, the
critical care team has the ability to control death and delay withdrawal of treatment
to enable time for family to gather at the bedside (Crump et al., 2010; Fridh et al.,
2009) or accept that the patient is not responding to treatment (McMillen, 2008). The
timing of removal of treatment and dying trajectory may be controlled to create a
natural death, whereby the demise of the patient is disconnected from the removal of
treatment (Seymour, 2001). Thus, death occurs naturally as opposed to as a result of
action or inaction by medical professionals directly involved (Seymour, 2001;
Timmermans, 2005). Although this position of control may be used to create a good
death, the concept of a good death has also been criticised as an implicit form of
control (Hart et al., 1998; McNamara, 2001). For instance, a good death may be
considered one in which the patient and family conform to the rules of the institution
and expected behavioural norms from the perspective of the nurses and doctors
controlling the process of death and dying. Obtaining a shared view of a good death
by seeking and supporting patient and family preferences for end-of-life care can
assist in creating a good end-of-life care experience for the patient and family
(McNamara, 2001). The findings of this study provide further evidence that the
institutionalisation of death and dying affords critical care clinicians increased social
control over the process of death and dying. This privilege needs to be understood
and appropriately used by health professionals.
10.3.3 Facilitation
A conceptual analysis of facilitation identified variation in description and use of the
term in the literature (Harvey et al., 2002). In the current study, facilitation was
broadly defined as the process of making things easier, to capture the variety of
facilitative factors that can influence the provision of end-of-life care in critical care
settings. EFA of participant responses to the survey instrument in phase three of this
study identified the latent constructs of palliative values, emotional support for
nurses and care planning. In the current study, these constructs, along with the DAS,
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were considered facilitators of the provision of end-of-life care in critical care
settings.
Nurses’ personal attitudes and beliefs can influence the provision of end-of-life care
for patients and their families. There was strong agreement by participants in phase
three of this study with the items in the survey instrument that loaded on the latent
construct of palliative values. The items in this latent construct reflect values
consistent with a palliative approach. Almost all participants (99.5%) agreed or
strongly agreed that end-of-life care should include care of the patient’s family.
Strong agreement was also found with the items: Analgesia should be titrated to keep
the patient comfortable even if this hastens death (97%), End-of-life care is as
important as curative care in the critical care environment (93.8%), It is a privilege
to care for a patient at the end of life and their family (91%) and I can influence the
patient and family’s experience of end-of-life care (95.1%). In addition, 91% of
participants in the current study disagreed or strongly disagreed that patients at the
end of life require little nursing care. The value placed on end-of-life care and the
importance of care of the family were clearly articulated by participants during
interviews in phase one of this study. These findings indicate that participants in this
study have a strong commitment to the inclusion of families in end-of-life care and
the value of this care within the critical care setting. A shift in the focus of care at the
end of life to the family (Fridh et al., 2009; Halcomb et al., 2004) and reports of end-
of-life care being considered a privilege in the critical care setting (Calvin et al.,
2007; Fridh et al., 2009; Vanderspank-Wright et al., 2011) have been identified in
previous studies.
The items in the latent construct of emotional support for nurses captured nurses’
perceptions of the support and assistance that they receive from their colleagues and
managers in the workplace when providing end-of-life care. Although two-thirds of
participants in phase three of this study agreed or strongly agreed that, when a patient
dies in their unit, counselling is available if they need it (67.7%), more than 80% of
participants agreed or strongly agreed that, after caring for a patient at the end of life,
their colleagues will ask them if they are OK (81.1%). Similar findings were
identified in the experiences of emotional support during and following the provision
of end-of-life care by phase one participants in this study. Critical care nurses share a
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common bond with their colleagues through the experience of caring for critically ill
and dying patients within their workplace. They may find it difficult to relate to
outsiders about these experiences (Kirchhoff et al., 2000; Shorter & Stayt, 2010).
Informal support through talking with colleagues has been widely reported in
previous research (Halcomb et al., 2004; Jones & FitzGerald, 1998; Kirchhoff et al.,
2000; Shorter & Stayt, 2010). Similarly, the value of collegial support networks and
a shared understanding of experience with death and dying among hospice nurses has
also been reported in the literature (McNamara, 2001).
Care planning can facilitate the provision of end-of-life care in critical care settings.
In the current study, the items in the care planning latent construct reflected support
for end-of-life care and agreement on a plan of care among the health care team. The
majority of participants in phase three of the current study agreed or strongly agreed
that, in their unit, all members of the health care team agree with and support end-of-
life care when it is implemented (76%) and that a plan of care for the patient is
clearly documented by the medical team after a decision to withhold or withdraw
life-sustaining treatment is made (59.7%). However, only 42.9% of participants
agreed or strongly agreed that there are policies or guidelines to assist in the delivery
of end-of-life care in their unit. In comparison, in their survey of critical care nurses
in the United States, Kirchhoff & Kowalkowski (2010) reported that the provision of
end-of-life care by critical care nurses is guided by orders from the medical team
(63.8%), care plans (20%) and standing orders (11.8%). No use of clinical practice
guidelines was reported by participants in their study (Kirchhoff & Kowalkowski,
2010). Adequate guidance in the form of a written plan of care or standardised order
forms may facilitate the provision of good end-of-life care (Truog et al., 2008),
particularly for nurses with less experience in the provision of end-of-life care in this
setting.
In the current study, participants expressed comfort with death, with 84.7% agreeing
or strongly agreeing that it doesn’t make them nervous when people talk about death
and 94.9% disagreeing or strongly disagreeing that the sight of a dead body is
horrifying to them. In addition, a significant negative correlation was found between
the categories of years of nursing experience and death anxiety. These findings
indicate that, as critical care nurses gain more professional experience, their anxiety
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towards death decreases. Similar findings of the relationship between nursing
experience and death anxiety have been reported in the literature (Deffner & Bell,
2005).
Critical care nurses are frequently exposed to human suffering and death in their
daily practice. The provision of care to a critically ill patient in the hope of achieving
cure can result in immense suffering. Nurses’ accounts of continuing curative
treatment as torturing and flogging the patient when they perceive treatment to be
futile were reported in previous studies (Badger, 2005a; Halcomb et al., 2004;
Kirchhoff et al., 2000; McKeown et al, 2010) and in the findings of phase one of the
current study. The decision to withhold or withdraw life-sustaining treatment signals
impending death of the patient and grief and loss for the surviving family members.
Although the perception of death as a professional failure has been reported
elsewhere (Beckstrand et al., 2006; Cartwright et al., 1997; Halcomb et al., 2004;
McKeown et al., 2010), the findings of the current study support an alternate view,
with participation in the provision of end-of-life care reported by the majority of
nurses as being a privilege. It may be that the preciousness of life is raised to
conscious awareness through experiences of suffering and the inevitability of death
(Byock, 2002). Nurses are in a privileged position of accompanying the patient and
the patient’s family during their final journey in life together, and the provision of
end-of-life care presents an opportunity for critical care nurses to achieve a good
death for the patient and a good experience and memories of end-of-life care for the
family. Critical care nurses in this study believed they make a difference to the
experience of end-of-life care for patients and their families, and this could be
contributing to the nurses’ personal satisfaction with their work.
However, although death is frequently encountered by critical care nurses, the
sequestration of death to health care institutions has reduced personal opportunities
for experience with and learning from death and dying in the wider community
(Exley, 2004; Stevens et al., 2000). Nurses may refrain from discussing their
experiences of death and dying with those outside the health care institution, where
such conversations may be socially awkward, instead relying on collegial support
from those who have a shared experience with death and dying (McNamara, 2001;
Shorter & Stayt, 2010). In addition, the perception that critical care nurses are
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expected to cope with death and dying was identified in phase one of this study and
has previously been reported in the literature (McNamara, 2001). Nurses can
maintain a resilient façade by sharing their personal experiences among their chosen
support network rather than publically acknowledging the need for emotional support
by accessing external debriefing and counselling services.
The findings of this study indicate that more exposure to death and dying through
experiences as a nurse could assist nurses to become more comfortable and
experience less anxiety towards death. Previous qualitative research has alluded to
the normalisation of death and dying in critical care settings, where nurses are
frequently exposed to patient death (Badger, 2005b; Shorter & Stayt, 2010). Critical
care nurses bear witness to suffering associated with attempts to cure critically ill
patients and, in some situations, death can be perceived as a preferential option
(Badger, 2005b). In addition, the provision of end-of-life care to a patient and the
patient’s family can achieve a good death—a description of death as a positive
experience.
In summary, the provision of end-of-life care occurs in a practice context of nurse-
led care. Nurses engage in the provision of this care, within the constraints of an
environment designed for curative care using available resources. Critical care
nurses’ agreement with items in the patient and family preferences scale indicated
their support for principles of patient and family centred care during the provision of
end-of-life care. Despite limited opportunities for knowledge acquisition, nurses
report feeling adequately prepared for the provision of end-of-life care. Critical care
nurses in this study expressed agreement with items suggesting a high value is placed
on end-of-life care and that emotional support is available through collegial support
networks. Moreover, the majority of participants expressed comfort with death and
the provision of end-of-life care in critical care settings.
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10.4 What factors are associated with Australian critical care nurses’ end-of-
life care practices?
The third key question examined in this study sought to identify relationships
between the context, facilitation and evidence factors described in the preceding
section and the end-of-life care practices reported by critical care nurses in phase
three of this study. Separate univariate general linear models for each of the six end-
of-life care practice areas were built to identify statistically significant associations
between context, facilitation and evidence factors with each of the six practice areas.
The findings of these analyses thus identified key factors that are associated with
engagement in end-of-life care practices by critical care nurses. In summary, findings
revealed that more positive scores on scales reflecting palliative values and support
for patient and family preferences, which conceptually fit within the elements of
facilitation and evidence, were associated with more frequent engagement in the end-
of-life care practices examined in this study. Importantly, findings also revealed that
contextual factors had a limited influence as explanatory variables in the end-of-life
care practice models. The elements of the PARIHS framework are used as an
organising framework in the sections that follow, to discuss the key findings relating
to this final study question.
10.4.1 Facilitation
The latent construct of palliative values was identified as an explanatory variable
significantly associated with each of the six end-of-life care practice areas identified
in phase three of this study. The nature of this association reflected that critical care
nurses’ personal values are at the core of their practice intentions, with higher
agreement on statements reflecting values that are more consistent with the palliative
approach associated with more frequent engagement in each of the six end-of-life
care practice areas. Although positive regard for the value of end-of-life care has
been reported elsewhere (Calvin et al., 2007; Fridh et al., 2009; Vanderspank-Wright
et al., 2011), the findings that these values influence engagement in end-of-life care
practices has not previously been reported and contributes new knowledge of end-of-
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life care in critical care settings. Thus, critical care nurses with a positive attitude
towards the value of end-of-life care and the inclusion of family are more likely to
report more frequent engagement in end-of-life care practices.
The latent constructs of emotional support for nurses, death anxiety and care
planning were also facilitation factors significantly associated with nurses’
engagement in specific areas of end-of-life care practice. Specifically, a negative
relationship was identified between the explanatory variables of emotional support
for nurses and death anxiety and the outcome variable of patient and family centred
decision making practices. Critical care nurses reporting higher scores on the
emotional support for nurses’ scale, measuring agreement with the support and
assistance they receive, and/or higher scores on the DAS, were associated with lower
levels of reported engagement in patient and family centred decision making
practices.
There are several possible explanations for these findings. In the first instance, such
findings could indicate that critical care nurses who report higher levels of perceived
support and assistance from colleagues and managers actually require more
emotional support than other critical care nurses. These nurses may thus avoid
interpersonal interactions with patients who are dying and their families. In addition,
critical care nurses who are more anxious about death may find conversations with
the family experiencing grief and loss difficult and avoid practices that require
interpersonal interactions and relationship with the patient and family, instead
focusing on other practices in which they can maintain a more superficial presence,
such as physical tasks and technical interventions. Previous qualitative studies have
reported that, for a nurse to be there at the end of life for a patient and the patient’s
family, they need to feel comfortable with being there themselves (Thompson et al.,
2006). However, other studies have reported that nurses may engage in distancing
strategies, such as focusing on technical aspects of care, as a method of avoiding
interpersonal interactions with family members (Badger, 2005a). Such avoidance
strategies may be utilised by critical care nurses frequently exposed to death to
protect their own vulnerability and minimise burnout. The relationships observed in
this study between the explanatory variables of emotional support for nurses and
death anxiety and engagement in patient and family centred decision making could
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also be influenced by the nurses’ skills in this area. The findings that death anxiety
decreases with experience in nursing supports the notion that lack of experience with
death and dying and concomitant lack of preparation for end-of-life care can explain
decreased participation in patient and family centred decision making practices. In
addition, critical care nurses who report higher agreement with the support and
assistance from colleagues in the provision of end-of-life care may be reflecting less
confidence in their ability to provide those domains of end-of-life care that are
especially complex, such as involving families in end-of-life decision making.
A further finding of this study was that the latent construct of care planning was
significantly associated with information sharing practices, with those who reported
stronger agreement with support for end-of-life care and consensus on a plan of care
among the health care team more likely to engage in information sharing practices.
Identifying the relationship between these factors is important, as previous research
has identified lack of a plan of care (Crump et al., 2010) and lack of consensus
among the health care team and/or family as barriers to the provision of end-of-life
care (Kirchhoff & Beckstrand, 2000). Additionally, in the consensus statement on
end-of-life care by the American College of Critical Care Medicine (Truog et al.,
2008), the use of a plan of care is recommended to guide clinician practice in the
provision of end-of-life care, including interventions in the withdrawal of life-
sustaining treatment. Consensus and documentation of a plan of care can facilitate
the provision of end-of-life care and the communication of this care to families
through information sharing practices.
10.4.2 Evidence
The latent constructs of patient and family preferences, knowledge and preparedness,
which conceptually fit within the element of evidence, were associated with nurses’
engagement in select end-of-life care practices. Specifically, the stronger agreement
with items reflecting inclusion of patient and family preferences in end-of-life care
was significantly associated with higher levels of engagement in all practice areas
except information sharing practices. That is, support for patient and family
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preferences was associated with critical care nurses’ engagement in practices to
support family presence through environmental modification, increase family
participation in decision making and support the family emotionally and spiritually.
A patient and family centred care approach to the provision of end-of-life care in
critical care settings has been recommended (Seymour, 2001; Truog et al., 2008).
Empirical studies have identified care of the family as important to quality end-of-
life care (Halcomb et al., 2004; Kirchhoff & Beckstrand, 2000; Puntillo et al., 2001),
and that good end-of-life care includes patient and family preferences for care
(Borbasi et al., 2005) and the involvement of family members in care of the patient
(Kirchhoff et al., 2000). The current study provides additional evidence that critical
care nurses’ support for patient and family centred care during the provision of end-
of-life care in critical care units can influence their engagement in practices that
share control with and support inclusion of families at this time.
This study also identified that the latent construct of knowledge was positively
associated with greater engagement in emotional support and patient and family
centred decision making practices in the provision of end-of-life care. Critical care
nurses who had received in-service education pertaining to end-of-life care,
postgraduate education including end-of-life care content and/or draw on evidence
from the literature were more likely to engage in the interpersonal practices of
providing emotional support and patient and family centred decision making. These
findings are consistent with studies that have reported that lack of knowledge is a
barrier to good end-of-life care (Nordgren & Olsson, 2004).
Importantly, over half of all participants who completed the survey instrument in
phase three had not received in-service education about end-of-life care in the
workplace and approximately one-third of participants reported that their
postgraduate education did not include end-of-life content. These reduced
opportunities for exposure to knowledge may limit critical care nurses’ evidence base
for practice, ability and/or confidence in engaging with the patient’s family on an
interpersonal level. The finding that knowledge was not an explanatory variable of
significance in the other practice models, including information sharing and
symptom management, could reflect that nurses engage in these practice areas using
knowledge obtained from educational opportunities not specific to end-of-life care or
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from previous practice experiences. Information sharing and symptom management
practices may also not require the same level of interpersonal engagement that is
required by critical care nurses as the provision of emotional support and supporting
patient and family centred decision making.
Higher levels of agreement on the preparedness latent construct was also associated
with higher levels of engagement in end-of-life care practices related to care of the
family through information sharing, emotional support, patient and family centred
decision making and spiritual support. That is, critical care nurses who felt more
prepared to provide end-of-life care were more likely to engage in practices that
required communicating with and interpersonal care of the family. Several authors
have identified that nurses learn from experience in the provision of end-of-life care
(Fridh et al., 2009; Heland, 2006; Zomorodi & Lynn, 2010b), rather than through
propositional knowledge alone (Fridh et al., 2009). Nurses inexperienced in and
unprepared for the provision of end-of-life care may thus become overwhelmingly
concerned with saying and doing the right thing, which can result in not doing
anything (Exley, 2004; McNamara, 2001). The findings of this study provide support
for this claim.
10.4.3 Context
In this study, contextual factors had a limited influence as explanatory variables of
critical care nurses’ end-of-life care practices. The latent constructs representing
contextual factors, organisational culture and resources were significantly associated
with environmental modification practices. The organisational culture latent
construct reflected a practice context of nurse-led care and the resources latent
construct referred to the availability of space, equipment and adequate time. Thus,
the findings of this study indicate that given the nurses’ personal initiative and the
availability of resources, critical care nurses typically engage in practices to modify
the environment during the provision of end-of-life care.
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No significant relationship was found between the contextual factors and the other
end-of-life care practice areas identified in the current study, suggesting that the
provision of end-of-life care is not greatly influenced by contextual features
measured in this study. According to the PARIHS framework, when an element is
rated as low, the influence of this element may be overcome if the other elements are
rated highly (Kitson et al., 1998). Thus, in critical care units where the context is not
satisfactory as a result of a dominant curative culture or insufficient resources,
nurses’ engagement in positive end-of-life care practices could be achieved if
evidence and facilitation factors that influence practice are present. For example, the
findings of this study could suggest that evidence (including patient and family
preferences) and facilitation (such as the personal values of the individual nurse)
factors are most important in influencing critical care nurses’ engagement in end-of-
life care practice, while the broader context could be less significant in the intimate
setting of end-of-life care. That is, the provision of nursing care is greater than just
the physical context in which it is provided, and nurses can engage in positive end-
of-life care practices regardless of the broader practice context of critical care. A
large number of the end-of-life care practices identified in this study consist of items
related to the interpersonal care of the family and communication between the nurse
and the family, and the broader practice context could have less of a bearing on such
practices than the values of the individual nurses themselves and the preferences of
the patient and family at this time.
10.4.4 Demographic explanatory variables
The demographic variables of gender, nursing experience, postgraduate
qualifications, work location and workplace each contributed to at least one end-of-
life care practice model as a significant explanatory variable. The findings of this
study indicate that critical care nurse engagement in the interpersonal caring
practices of emotional support and spiritual support differed according to gender,
with male critical care nurses being more likely to report less frequent engagement in
these practice areas. Nilsson and Larsson (2005) identified the perception that male
nurses have a more technical focus than female nurses in the findings of their study.
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Thus, this argument would suggest that male nurses could be attracted to the
medicalised and technologically focused practice of critical care. Indeed, workforce
statistics demonstrate that a higher proportion of male nurses are employed in critical
care areas than in other areas of nursing practice (AIHW, 2011). Moreover, in
Western society, several authors argue that males are socialised to be strong and
maintain emotional composure (Brown, 2009; Silverberg, 1985). Kellehear (2000),
for example, notes the masculinity of the Australian culture is such that grief is
expressed by women, and not by men. Such views thus propose that socialisation
does influence the practices in which critical care nurses will engage when faced
with caring for people who are dying. In contrast, Rosenberg (2009) suggests that
traditional images of masculinity in Australian society are changing and new images
are emerging with males engaging in secular rituals to express grief and loss, while
retaining their masculinity. The role of gender in responses to grief and distress, and
in the way in which male and female nurses’ practise their discipline, requires further
investigation. It is possible that male nurses support the emotional and spiritual needs
of patients at the end of life and their families by engaging in practices not captured
in the survey instrument.
Nursing experience and postgraduate qualification were both significant explanatory
variables of spiritual support practices. Postgraduate qualifications were also a
significant explanatory variable of patient and family centred decision making
practices. Specifically, those with higher levels of education were more likely to
engage in practices in both of these domains, suggesting that education and
experience can increase nurses’ ability to engage in these interpersonal caring
practices. However, critical care education and critical care experience were not
significant explanatory variables in any of the end-of-life care practice models. The
limited inclusion of end-of-life content in critical care curricula and workplace in-
service programmes identified by participants in this study could contribute to the
limited influence of these variables to end-of-life care practices.
Work location was significantly associated with environmental modification
practices, with critical care nurses employed in regional or remote areas reporting
more frequent engagement in environmental modification practices than critical care
nurses working in major cities. The size or workload of the critical care units in
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regional and remote areas may be different from those in major cities, and such areas
may be more accommodating or flexible in how care is organised. Therefore, such
contextual variables may be important in determining the nurses’ abilities to engage
in environmental modification practices.
Similarly, the demographic explanatory variable of workplace was associated with
emotional support practices and symptom management practices, with employment
in an emergency department associated with less frequent engagement in the
emotional support and symptom management practice areas. Emergency departments
provide a different context from other critical care practice settings such as ICUs. Le
Conte et al. (2010) suggest that physicians in emergency departments have limited
time to make decisions, lack previous knowledge of patients’ prior health status and
lack long-term relationships with the patients. Nurses in emergency departments also
have different nurse-patient ratios from those of their nursing colleagues in intensive
care, and patients are in the emergency department for a shorter period of time,
precluding them from forming closer relationships with the patient and family.
Beckstrand et al. (2008) agree, acknowledging that while the items in their study
related to communicating with the patient and family regarding an anticipated death
and talking with patients about their feelings occurred in ICUs, they did not
frequently occurr in emergency departments. These authors suggest that this is
because the emergency department is a place of transition with inadequate time for
nurses to form relationships with patients (Beckstrand et al., 2008). Indeed, in the
current study, the items in the survey instrument pertaining to emotional support and
symptom management practices may not be as applicable in emergency department
settings. This is not surprising given the diversity of patient diagnoses and illness
trajectories between emergency departments and other critical care settings. Instead,
emergency department nurses may engage in other practices not captured by items in
the survey instrument to provide emotional support and symptom management.
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10.5 Strengths and limitations
There are some important strengths and limitations of the study that should be
considered at this point. First, in the current study, end-of-life care was defined as the
phase of care that occurs following a decision to withdraw or withhold life-sustaining
treatment, with death of the patient the expected outcome. Although this definition
was consistent with current practice and provided a focus for the study that was
considered within the scope of a PhD research project, the view that palliative care
is applicable only in the last days of life is a barrier to the broader role of palliative
care for all patients in the critical care setting (Nelson & Meier, 1999; Rodriguez et
al., 2007, p. 107). Further research to explore the earlier application of a palliative
approach in critical care settings is needed.
Additionally, while the PARIHS framework was used to guide this study, some
strengths and criticisms of the framework and their implications for the present study
should also be considered. First, the PARIHS framework was originally developed to
represent the complexity of factors influencing successful implementation of
research evidence into practice. However, the elements of context, evidence and
facilitation identified in the framework were considered to represent the complexity
of factors that can also influence nursing practice. Thus, the PARIHS framework was
selected as an organising framework to identify the factors that may influence critical
care nurses’ end-of-life care practices.
Nevertheless, a major criticism of the PARIHS framework is the conceptual overlap
between subelements and the lack of clarity regarding the relationships between the
elements and subelements (Helfrich et al., 2010). The subelements in the PARIHS
framework were identified through conceptual analysis of each element (Harvey et
al., 2002; McCormack et al., 2002; Rycroft-Malone et al., 2002). Although the key
elements of the framework were thought to capture the complexity of factors
influencing critical care nurses’ end-of-life care practices, some of the subelements
were not considered relevant to the provision of end-of-life care by critical care
nurses. Instead, a range of factors influencing practice for each key element was
proposed a priori. In addition, the eight factors influencing the provision of end-of-
life care identified through EFA in phase three of this study were considered to have
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conceptual and theoretical fit within the three key elements of the PARIHS
framework. The current study also considered the relationship between each factor
and critical care nurse engagement in end-of-life care practices. Thus, the current
study contributes to nursing knowledge by systematically documenting critical care
nurses’ end-of-life care practices, and identifying facilitation, evidence and
contextual factors influencing engagement in these practices. The findings of this
study revealed that factors within the elements of facilitation and evidence were
associated with more frequent engagement in end-of-life care practices, while
contextual factors had a limited influence. Moreover, in the PARIHS framework, the
element of facilitation is defined as a role (Helfrich et al., 2010). However, a broader
definition of facilitation was utilised in this study to capture the range of facilitative
factors, including individual values, beliefs and attitudes, which may influence the
provision of end-of-life care by critical care nurses.
There are also a number of methodological strengths and limitations associated with
the current study that should be noted. Despite an extensive search of the literature,
no validated tools were identified that could be used to address the research purpose
and research questions in this study. Although other survey instruments to measure
end-of-life care in critical care settings have been developed since the current study’s
inception (Kinoshita & Miyashita, 2011; Zomorodi & Lynn, 2010a), the survey
instrument developed in the current study includes items to identify nurses’ self-
report of frequency of actual end-of-life care practices and their agreement with
factors that can influence end-of-life care. A rigorous process of instrument
development was undertaken in the current study. The development of a robust
survey instrument that is reliable and valid is a time-consuming process. However,
investment of time in developing the instrument by conceptualising the domains of
interest and generating items contributes to the content validity of the instrument
(Polit & Beck, 2006; Polit et al., 2007).
Review of the survey instrument by an expert panel and collection of relevance
ratings by experts for each item in the survey instrument permitted the calculation
and assessment of the content validity of individual items (I-CVI) as well as the
entire instrument (S-CVI) (Polit et al., 2007). Content validity index (CVI) is widely
used by nurse researchers and is easily calculated (Beckstead, 2009; Polit et al.,
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2007). Another strength of the CVI is that it measures agreement amongst experts
regarding the relevance of items as opposed to the internal consistency between
ratings provided (Polit et al., 2007). It has been noted in the literature that
computation methods of CVI do not account for chance agreements (Beckstead,
2009; Lynn, 1986; Polit & Beck, 2006; Polit et al., 2007). However Polit et al. (2007)
note that members of the expert panel are selected for their expertise and it is
anticipated that they provide considered responses regarding the relevance of each
item, not a random response. In the current study, six experts were included on the
panel ensuring an adequate sample size to appropriately identify items as relevant
(Lynn, 1986; Polit & Beck, 2006). The collapse of relevance rating categories into
dichotomous categories during calculation of CVI has been criticised for loss of
information (Beckstead, 2009; Polit & Beck, 2006; Polit et al., 2007). However this
method of data management eases computation of CVI and the initial data collected
on the 4-point rating scale can be reviewed for identification of items that may need
revision (Polit et al., 2007). Lastly, Polit and Beck (2006) identify a lack of detail in
nursing literature regarding computational methods used in CVI obscuring the results
provided. Consistent with Polit and Beck’s (2006) recommendations, the methods
used to calculate both I-CVI and S-CVI have been clearly articulated in this thesis.
In addition to review of the survey instrument by an expert panel, completion of a
pilot study enabled preliminary assessment of the psychometric properties of the
survey instrument. The pilot test also tested the feasibility of some of the methods
used in phase three of this study, including data collection, management and analysis.
The results of the expert review and pilot study informed revisions to the survey
instrument and study methods.
Regression models are derived from the variables included in the analysis (Hair et
al., 2006). The latent constructs identified following EFA of participant responses to
the survey instrument in the current study are derived from the items included in the
content of the survey instrument. Practice is a complex, multidimensional
phenomenon and only a limited number of items could be included in the survey
instrument. Therefore, there is a potential for selection bias influencing the
identification of latent constructs. Although a rigorous process of item selection,
instrument development and EFA was undertaken to create the summated scales
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included in the multiple regression model, it is possible that aspects of practice or
factors influencing practice may not be captured within the models generated in this
study, potentially biasing the models and regression coefficients obtained (Hair et al.,
2006). Additional latent constructs of end-of-life care practices and factors
influencing these practices may exist and may not have been identified. For example,
the items encourage the family to touch the patient and encourage the family to talk
to the patient loaded together during EFA, but were not accepted as a factor because
no other items loaded on the factor. The items are conceptually similar and perhaps
represent a latent construct not adequately covered by the items in the instrument.
Convenience samples were utilised in all phases of this study, and the strengths and
limitations of this sampling approach as well as the samples obtained must be
acknowledged and considered in the interpretation of the findings of the study.
Convenience samples are a time-efficient method of recruiting potential participants.
However, participant self-selection may potentially bias the sample because those
that choose to participate may be characteristically different from those who choose
not to participate. Thus, a convenience sample may not reflect the wider population
that they are recruited to represent (Schneider, Elliott, LoBiondo-Wood, & Haber,
2003).
Although phase one of this study used a small sample of participants, the aim of
phase one was not to generalise the findings, but to provide evidence of the current
experience and practices of critical care nurses in the provision of end-of-life care, to
inform the development of a survey instrument of critical care nurses’ end-of-life
care practices and factors influencing these practices. Thus, the sampling strategy
was deemed appropriate for the purpose of this phase of the study. However, the
sample was limited to critical care nurses working in one ICU. Inclusion of critical
care nurses employed in other settings, such as emergency departments, could
provide other insights into critical care nurses’ end-of-life care experiences and
practices not identified in phase one of this study. The variation noted in participant
responses to items in the emotional support and symptom management practice areas
according to workplace may not reflect a lack of engagement in these practices, but
rather engagement in other practices not captured in the current survey instrument.
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Comparison of the demographic profile of participants in phase three of this study
with the demographic information available from the Nursing and Midwifery Labour
Force 2009 (AIHW, 2011) survey and the Intensive Care Resources & Activity:
Australia & New Zealand 2007/2008 (Drennan et al., 2010) report assisted in
identifying similarities and differences between the participants in phase three of this
study and the national intensive care nurse and registered nurse populations. In
addition, comprehensive description of the sample assists in determining the
applicability and generalisability of the findings to other populations, and identifying
areas for further research using new samples. The average age of participants in
phase three of this study was similar to the national average (43.1 years v. 44.3
years) (AIHW, 2011). Although the proportion of males in this survey was larger
than the national proportion of males registered as a nurse (13.5% v. 9.6%), it was
consistent with current workforce figures of males employed in critical care and
emergency settings (13.3%) (AIHW, 2011). The phase three sample had a high
proportion of participants (90.3%) who had completed or were currently undertaking
formal education in critical care. These figures are much larger than the proportion of
registered nurses with critical care qualifications (56.1%) in the Intensive Care
Resources & Activity: Australia & New Zealand 2007/2008 (Drennan et al., 2010)
report. In addition, in the current study, only 55.1% of participants identified clinical
work as their primary role compared with the findings of the Nursing and Midwifery
Labour Force 2009 (AIHW, 2011) survey in which 77.7% of nurses identify their
main nursing job as a clinical position. These variations in critical care qualifications
and primary nursing role of participants in the current study compared with the
national workforce statistics for general and critical care nurses (AIHW, 2011;
Drennan et al., 2010) is likely to reflect membership of the professional association
for critical care nurses, whose members are more interested in professional issues
and education than non-members.
Interestingly, although only 55.1% of participants in the current study identified
clinical work as their primary role, 74.5% of participants reported providing direct
patient care within the last week, indicating that most of the sample is currently
engaged in clinical work. In addition, of participants that had provided direct patient
care in the past 12 months, 95.5% reported providing end-of-life care. Thus, the
majority of participants had recent experience in the provision of end-of-life care in
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their workplace and their responses to the survey are less likely to be influenced by
recall bias.
Overall, there were some similarities and differences between the demographic
profile of critical care nurse participants in phase three of this study and the available
comparison population of Australian intensive care nurses (Drennan et al., 2010) that
need to be considered in interpreting the results of this study. However, the
differences may be insignificant as few demographic variables were identified as
explanatory variables in the end-of-life care practice models. For example, although
variation between the sample and comparable population was identified in regard to
formal education in critical care, this variable was not a significant explanatory
variable in any of the end-of-life care practice models.
In this study, data were collected via interviews in phase one and a web-based survey
in phases two and three. It has been acknowledged that an interview is a social
interaction and, as such, the researcher as interviewer contributes to and influences
the interaction (data collection) and the interpretation of the interaction (data
analysis) (Fontana & Frey, 2005). The interview is a mutually created, contextually
based account between the interviewer and interviewee (Fontana & Frey, 2005;
Silverman, 2006). Thus, the researcher cannot claim to be impartial or unbiased. The
researcher is a former employee of the study setting. The capacity of this
employment was as a registered nurse providing direct patient care. The position of
the researcher as a former registered nurse in the ICU assists in understanding the
context of the participants’ work. The researcher was aware of personal experience
as a registered nurse in intensive care and, when it was recognised that an assumption
was being made, a question was asked to clarify the meaning for the participant. In
addition, check-coding of transcripts by the supervisory team and presenting the
findings back to nurses in the study setting were specific measures undertaken to
enhance the dependability of the findings (Miles & Huberman, 1994).
Web-based surveys are both time- and cost-efficient methods of collecting data from
large numbers of participants. Web surveys are also time effective in eliminating data
entry requirements through the ability to export data from the survey software
directly into SPSS for data analysis (Sue & Ritter, 2007). Unfortunately, the exact
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response rate to the survey in phase three of this study could not be ascertained. Key
Survey version 7.3 was used in phase three of this study and the rules specified
during the development of the survey did not allow incomplete survey responses to
be recorded. Thus, the number of critical care nurses who accessed the survey or
only partially completed the survey is unknown. In addition, due to privacy
restrictions, the researcher was unable to track undelivered emails. However,
responses to the survey were maximised by careful consideration of the wording of
recruitment materials and the use of a reminder email to encourage participation. The
estimated response rate was 25%. This was comparable to a recent national postal
survey of pain assessment and management by Canadian critical care nurses in which
a response rate of only 24.5% was achieved despite three rounds of contact with
participants that included an initial invitation and two reminders (Luk & Rose, 2011).
Specific factors that may have contributed to the low response rate in this research
study include the length of the survey instrument and the topic under investigation.
The survey instrument was approximately four pages in length, and some
participants in the pilot test in phase two commented that the survey was quite
lengthy. However, the length of the survey instrument was necessary to permit
adequate coverage of the variables of interest to the study. End-of-life care may be a
confronting and emotive topic of nursing practice. This topic may engender interest
and participation for some and, conversely, may reduce participation by others.
A considered and rigorous approach to data analysis was maintained throughout this
study. The backward elimination approach to regression model building utilised in
phase three has been criticised for the potential to obtain a model that fits the sample
data rather than the broader population, thus limiting generalisability (Tabachnick &
Fidell, 2007). However, this approach is considered satisfactory for the purpose of
identifying the predictors of critical care nurses’ end-of-life care practices. Although
other plausible results may be obtained through alternate methods of data analysis,
the findings of this study were considered to have conceptual and/or theoretical
resonance. Replication of the current study using a new sample and CFA would
provide additional evidence of the reliability and validity of the survey instrument.
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The current study only considered the self-reported practices and views of critical
care nurses. Use of alternate data collection approaches may obtain differing results.
For example, analysis of actual practice through ethnographic methods may uncover
hidden practices not articulated or readily identified by critical care nurses in the
provision of end-of-life care. Overall, the findings of this study have contributed new
insight into critical care nurses’ engagement in the provision of end-of-life care and
new knowledge of the factors associated with nurse engagement in end-of-life care
practices, as well as preliminary evidence of the psychometric properties of a new
survey instrument.
10.6 Summary
In summary, practices related to environmental modification and information sharing
were the most frequently reported end-of-life care practices of Australian critical care
nurses in this study. Environmental modification and information sharing practices
are simple interventions for nurses to undertake in the provision of end-of-life care.
Practices related to the emotional support of patients at the end of life and their
relatives were the least frequently reported as always undertaken in the provision of
end-of-life care. The provision of end-of-life care may be emotionally confronting
for nurses, creating difficulties for interpersonal engagement of nurses with patients
at the end of life and their families.
The findings of this study revealed that the provision of end-of-life care is influenced
by the personal values of critical care nurses, with those reporting values consistent
with the palliative approach engaging in positive end-of-life care practices. The
latent construct of patient and family preferences was also a significant explanatory
in five of the six end-of-life care practice areas. Critical care nurses perceived that
they were prepared to provide end-of-life care despite limited opportunities for
knowledge acquisition. Knowledge and preparedness were associated with critical
care nurses engaging in the interpersonal practices of patient and family centred
decision making and emotional support of the patient and family. In contrast, critical
care nurses requiring emotional support and those with higher death anxiety reported
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lower engagement practices pertaining to care of the family. Contextual factors had
limited influence as explanatory variables of end-of-life care practices areas.
However, a context of nurse-led practice was identified, with critical care nurses
drawing on their personal practice knowledge and initiative to construct a good
experience of end-of-life care for the patient and surviving family members.
A rigorous research approach and careful consideration of the strengths and
limitations of this study have been undertaken. The findings of this study contribute
to knowledge of critical care nurses’ end-of-life care practices. In addition, the
findings of this study identified variation in critical care nurse engagement in select
practices and the factors that contribute to explaining this variation.
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11 RECOMMENDATIONS AND CONCLUSIONS
11.1 Introduction
The findings of this three-phase exploratory sequential mixed methods study have
informed the development of a number of recommendations for practice, education
and further research to improve care of patients at the end of life and their families,
and support critical care nurses in the provision of this care. Overall, the findings of
this study provide new insight into the end-of-life care practices of critical care
nurses and contribute new knowledge of the specific factors associated with nurse
engagement in these practices.
11.2 Recommendations for practice
Six end-of-life care practice areas were identified in this study, with variation noted
in the frequency with which critical care nurses engage in end-of-life care practices.
The identification of strategies to both assist critical care nurses to engage in the
provision of end-of-life care and support them in this challenging role are essential in
providing optimal care to patients at the end of life and their families and
maintaining the emotional health and wellbeing of critical care nurses.
With less than half of all phase three participants reporting the availability of
guidelines or policy related to the provision of end-of-life care and the variation
identified in critical care nurse engagement in end-of-life care practices, it is
recommended that guidelines be developed that address each of the six practice areas
identified in this study. These end-of-life care guidelines could raise awareness of
interventions that could be implemented from all practice areas. In addition,
guidelines could assist less experienced and/or prompt busy nursing staff to provide
comprehensive nurse-led care to patients at the end of life and their families (Clarke
et al., 2004; Rose & Gidman, 2010). For example, inclusion of interventions to
provide emotional support to patients at the end of life and their families in end-of-
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life care guidelines could prompt increased engagement in these practices. However,
it is important to individualise care to meet the needs and preferences of the patients
and their families. Thus, guidelines must not be implemented in a prescriptive
manner whereby patients and families are expected to comply (Rose & Gidman,
2010). Instead, these guidelines should provide a platform for discussion of care
needs and preferences between the critical care nurse and the patient and family,
facilitating patient and family centred care.
Patient and family centred care during the provision of end-of-life care in critical
care settings has been recommended (Seymour, 2001; Truog et al., 2008). In the
current study, nurses with higher levels of agreement on the patient and family
preferences scale more frequently engaged in five out of the six end-of-life care
practice areas. Therefore, it is recommended that strategies to assist critical care
nurses to identify and support patient and family preferences could increase
engagement in end-of-life care practices. For example, following admission to a
critical care unit, early and ongoing regular communication is needed between the
patient, family and all members of the health care team regarding the patient’s
condition, possible outcomes and preferences for current and future care . These
discussions can smooth transitions if treatment plans change and assist in formulating
a shared position of what constitutes good end-of-life care (Boyle, Miller, & Forbes-
Thompson, 2005). Use of a family diary could also facilitate communication between
the family and health care team and across the health care team. In addition, within
individual critical care units, standardisation of documentation of patient and family
preferences on a patient care plan or flow chart would facilitate continuity of care
incorporating patient and family preferences between care providers.
It is recommended that palliative care nurses and/or critical care nurses with
expertise in the provision of end-of-life care be identified and available to provide
consultation to critical care nurses engaged in the provision of end-of-life care. These
expert nurses could share their practice knowledge and experiences and act as role
models in the practice of providing end-of-life care, promoting positive end-of-life
care attitudes and values among critical care nurses, and supporting less experienced
nurses in this care. The inclusion of palliative care consults in the critical care setting
has been reported in the literature (Campbell & Guzman, 2003; Hansen et al., 2009;
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O’Mahony et al., 2010). Evidence of the effectiveness of this intervention is limited
to reductions in time between identification of poor prognosis and implementation of
end-of-life care and decreased use of unnecessary treatment interventions, with
further research needed to ascertain improvements in overall quality of care.
The findings of this study indicate that environmental modification practices are
simple interventions for nurses to implement given the nurses’ personal initiative and
the availability of resources, including time and equipment. Variation in the
availability of resources for end-of-life care was also noted in this study. Although
critical care environments are designed for optimal surveillance of critically ill
patients and resourced to support curative care, strategies to optimise patient privacy
and the availability of appropriate resources to support the comfort of patients at the
end of life and their families are needed for the significant numbers of patients that
die in these settings. It is recommended that the availability of facilities for the
provision of end-of-life care, such as private rooms and family rooms, be considered
in the planning of new and redevelopment of existing critical care units. Lack of
privacy in critical care settings is a well-documented barrier to end-of-life care
(Bloomer et al., in press; Calvin et al., 2009; Fridh et al., 2009; Jackson et al., 2010;
McKeown et al., 2010). In addition, it is recommended that critical care units
develop resource kits to support patient and family comfort. Participants in phase one
of this study described a resource kit, developed by nursing staff, that contained
linen, lamps and cushions available for use during the provision of end-of-life care.
Hansen et al. (2009, p. 266) also reported use of a resource kit that included a quilt,
music compact discs, an envelope for a lock of hair and materials for creating a hand
print. These kits could also contain information for families such as bereavement
materials and available support services.
It is essential that emotional support be provided to critical care nurses experiencing
death and loss in the workplace. Without appropriate support, nurses may experience
stress and burnout (Shorter & Stayt, 2010). In particular, strategies to foster collegial
support networks are recommended as essential in critical care settings. The
importance of collegial support networks was identified by participants during phase
one of the current study. The value of these networks was further emphasised, with
the majority of participants in the national survey agreeing with items related to
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collegial support. Strategies to strengthen these informal support networks, relied
upon by so many critical care nurses for their emotional support needs, are essential
to ensure that the stress associated with the provision of end-of-life care does not
accumulate and lead to burnout. Strategies to formalise collegial support networks
could include rostering patterns and support for regular shared meal breaks to
support existing networks between colleagues. In addition, the development of buddy
systems for new and less experienced critical care nurses with more experienced
critical care nurses can provide interim support for these nurses until they establish
their own collegial support network in the workplace.
11.3 Recommendations for education
In this study, critical care nurses reporting higher agreement for values consistent
with a palliative approach were more likely to engage in all end-of-life care practice
areas. If critical care nurses’ personal values are at the core of their practice
intentions, then strategies to support the development of positive beliefs and attitudes
about the provision of end-of-life care can improve practice. Therefore, inclusion of
end-of-life content in critical care curricula and professional development activities
using a values-based education approach is recommended. Values-based education
and practice was originally developed and used in mental health practice (Fulford,
2011; McLean, 2012). The potential applicability of values-based practice in other
areas of health care has been acknowledged (Fulford, 2011). Values-based practice
recognises the centrality of the patient and family in care and aims to create
partnerships between health care providers and the patient and family through shared
understanding of the diversity of values present at any given time (McCarthy &
Grumley, 2010). Values-based education aims to develop awareness of one’s own
values through activities that encourage personal reflection, skills to identify and
consider the values of others and communication skills that can be used to support
participation in decision making and manage conflict (Fulford, 2011). A values-
based education approach could support the development of positive values towards
end-of-life care and communication skills, contributing to critical care nurses’
engagement in end-of-life care practices.
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The findings of the current study suggest that the provision of end-of-life care in the
context of critical care setting is largely nurse led. Yet, limited opportunities for
acquisition of knowledge to support the provision of end-of-life care were identified
by participants in this study. The frequency with which end-of-life care is provided
in critical care settings dictates that opportunities for education and discussion of
end-of-life care issues be provided. The inclusion of end-of-life care content in
critical care curricula and professional development activities is needed to address
the complexity of this area of practice, including the care and inclusion of family, the
physical care and emotional support of the patient and self-care for the nurse. A suite
of resources, similar to those developed for the Palliative Care Curriculum for
Undergraduates (PCC4U) project, that includes case studies and experiential learning
activities could support integration of end-of-life content in critical care curricula
(PCC4U, 2011).
Inclusion of in-services within the workplace and the opportunity for attendance at
workshops specifically designed to address the challenges and opportunities for the
provision of end-of-life care in critical care settings is needed. For example, the
findings of the current study indicated the centrality of the family to the provision of
end-of-life care, yet items related to emotional support of the patient and family were
practices least frequently identified as always undertaken by critical care nurses. In
addition, opportunities for knowledge acquisition and preparedness were associated
with critical care nurses’ engagement in interpersonal caring practices. Thus,
strategies to support nurses to gain experience in the provision of end-of-life care
may enhance nurses’ preparation and knowledge for practice and increase their
engagement in interpersonal care practices. For example, emotional support practices
may be enhanced through experiential learning strategies, such as facilitated practice
development workshops in which critical care nurses have an opportunity to practice
communication skills and role play difficult conversations that could be considered
socially awkward in other contexts. Practising these interventions in a supportive
environment may increase critical care nurses’ confidence and future engagement in
emotional support practices.
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Specialist palliative care nurses could also be invited into critical care settings to
share their knowledge and experiences, which may be translated into critical care
practice. Critical care nurses could also participate in supernumerary clinical
experiences in palliative care or hospice settings to increase their experience with
death and dying. For example, the Program of Experience in the Palliative Approach
(PEPA) provides opportunities for nurses to attend workshops and gain professional
experience in a palliative approach through supervised clinical placement
experiences in palliative care settings (PEPA, 2003). Experiences gained in palliative
care settings may be translated into practice in the critical care context. Inclusion of
end-of-life content in both formal education and professional development may raise
awareness of the value and importance of this area of practice and contribute to
nurses’ practice knowledge and perception of their personal preparedness.
In addition, critical care nurses should be encouraged to share their personal
experiences of providing end-of-life care to raise awareness of this area of practice
and the value and contribution that can be made to patients at the end of life and their
families within their own workplace. Opportunities for critical care nurses to share
their experiences of end-of-life care with the broader community should also be
sought. These personal narratives of critical care nurses may facilitate wider
acceptance and meaning of death and dying in critical care settings and wider society
(Byock, 2002; Hart et al., 1998).
11.4 Recommendations for research
The palliative values expressed by critical care nurses in this study are applicable in
the management of all critically ill patients and not just those patients identified as at
the end of life. Further research to ascertain the attitudes of critical care nurses and
investigate the potential for earlier integration of a palliative approach in the
management of critically ill patients would make an important contribution to
improving knowledge of this area of nursing practice in critical care settings. Earlier
inclusion of a palliative approach could enhance care for patients experiencing
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critical illness and smooth transitions when a decision to withhold or withdraw life-
sustaining treatment is made (NHMRC, 2011; Stroud, 2002).
Evaluative studies of values-based education should be undertaken to obtain
evidence of the effectiveness of this educational approach in supporting the
development of positive values towards end-of-life care among critical care nurses
and improving the quality of care experienced by patients at the end of life and their
families. In addition, content mapping of end-of-life care in critical care curricula in
higher education institutions can assist in appropriately targeting the development of
resources needed to integrate end-of-life content in curricula. In addition, further
research to explore critical care nurses’ perception of their preparedness for the
provision of end-of-life care and the factors that contribute to this preparedness is
needed. This research may inform the development of strategies to prepare nurses for
the provision of end-of-life care in critical care and other settings.
Although the findings of this study suggest nurse-led care, critical care nurses
practice within a broader multidisciplinary team. Further research to identify the role
and contribution of other members of the multidisciplinary team from the perspective
of each of the different professions is needed to obtain a more complete picture of
this area of practice in critical care settings. In addition, the perspective of patients
and families is important, and further research should consider the patient and family
perception of what constitutes good death. The experience of end-of-life care from
the family’s perspective could provide new insight and identify areas for practice
development.
Engagement in practices related to the emotional support of the patient and family
and symptom management were also found to vary across the different critical care
workplaces. Critical care is a broad term encompassing diverse settings of nursing
practice. Further in-depth research in specific areas of critical care, such as intensive
care and emergency departments, may contribute to nursing knowledge of end-of-life
care in the different critical care workplaces in which end-of-life care is provided.
For example, research into the emotional support practices utilised by emergency
nurses in the provision of end-of-life care in emergency departments would enhance
knowledge of this area of practice. In addition, the experience of end-of-life care in
210
emergency departments for bereaved families would assist in identifying areas for
practice improvement.
In addition, further research to explore the finding that males differ in their
engagement in interpersonal caring practices is needed. The perspective of recipients
of this care, such as bereaved family members could be assessed to investigate
whether emotional and spiritual support needs are adequately addressed. In addition,
the emotional support needs of male critical care nurses and strategies required to
address these needs may be different from those of female critical care nurses.
The survey instrument was specifically developed to address the research questions
posed in the current study. Preliminary evidence of the reliability and validity of the
survey instrument has been obtained. Further development and testing of the survey
instrument is required. Specifically, the symptom management scale requires further
development. Although the internal consistency of the items in the symptom
management scale was deemed satisfactory in pilot testing, varied feedback on this
scale was obtained from the expert panel and multivariable analysis revealed low
variation explained by predictors in the regression model. Perhaps this is a difficult
area to assess using a self-report survey instrument. Other methods of research such
as chart audit or completion of a checklist style instrument immediately post
provision of end-of-life care may eliminate recall biases and provide more insight
into the symptom management practices of critical care nurses. In addition, further
testing of the entire survey instrument using CFA or a structural equation modelling
approach in a new sample would provide more evidence of the reliability and validity
of this new tool.
11.5 Conclusions
This study has contributed new insights into critical care nurses’ engagement in end-
of-life care practices. Importantly, this study has also contributed new knowledge of
the factors associated with critical nurse engagement in these practices. Critical care
nurses engage in many important practices in the provision of end-of-life care.
211
However, variation was noted in critical care nurses’ engagement in some practice
areas and key factors associated with this variation were identified.
First, critical care nurses’ responses to the survey reflected values consistent with a
palliative approach. These palliative values were associated with engagement in all
end-of-life care practice areas identified in this study. Thus, the personal values of
the critical care nurse were at the core of their practice intentions. Development of
positive attitudes and values among nurses towards end-of-life care in critical care
settings can thus contribute to quality care for patients at the end of life and their
families.
Consistent with recommendations in the literature (Seymour, 2001; Truog et al.,
2008), the responses of participants in this study indicate agreement with and support
for patient and family centred care. In addition, higher agreement on items regarding
patient and family preferences was associated with critical care nurse engagement in
practices that share control with and support inclusion of families. Strategies that
assist critical care nurses to identify and support patient and family preferences will
contribute to increased participation in the end-of-life care practice areas identified in
this study.
Despite limited opportunities for knowledge acquisition, critical care nurses felt
adequately prepared for the provision of end-of-life care. These factors were
associated with variation in critical care nurses’ engagement in interpersonal caring
practices such as those pertaining to patient and family centred decision making and
emotional support for patients and families. In addition, critical care nurses reporting
higher scores on the emotional support for nurses’ scale, measuring agreement with
the support and assistance they receive, and/or higher scores on the DAS were
associated with lower levels of reported engagement in patient and family centred
decision making practices. Collectively, these findings indicate that critical care
nurses who have limited opportunities for knowledge acquisition, who perceive that
they are not prepared, and/or who are less comfortable with the provision of end-of-
life care and death report lower engagement in end-of-life care practices that reflect
interpersonal care.
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In addition, it is argued that the practices most frequently identified as always
undertaken in the provision of end-of-life care, specifically, information sharing and
environmental modification practices, require less emotional engagement by the
nurse and are less confronting than other interpersonal caring practices, such as the
emotional support practices least frequently identified as always undertaken.
Participation in professional development opportunities incorporating experiential
learning strategies and a values-based approach as well as supported clinical
experiences in the provision of end-of-life care can equip nurses with the knowledge,
skills and ability to engage in interpersonal caring practices.
An end-of-life care practice context of nurse-led care with variation in availability of
resources was identified. Contextual factors had a limited influence as explanatory
variables and were only associated with environmental modification practices. These
findings suggest that the broader practice context and culture of critical care are less
significant in the intimate settings of end-of-life care, where interpersonal care by the
critical care nurse comprises a large portion of practice. Further research that
considers the perspectives of families and other members of the multidisciplinary
team would make a valuable contribution to knowledge of end-of-life care in critical
care settings.
The findings of this study informed a number of recommendations for practice and
education and further research. The provision of end-of-life care in critical care
settings represents a significant component of nursing work that is highly valued by
nurses engaged in this work. Critical care nurses must be adequately prepared and
supported to provide comprehensive care in all areas of end-of-life care practice to
optimise care for patients at the end of life and their families, and to maintain their
own health and wellbeing in this often emotionally demanding role.
213
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13 APPENDICES
13.1 QUT research ethics approval—Phase one
From: Research Ethics [mailto:[email protected]]
Sent: Wed 8/10/2008 12:53 PM
To: Ms Kristen Louise Ranse
Cc: Ms Janette Lamb
Subject: Ethics Application Approval -- 0800000660
Dear Ms Kristen Ranse
Re: End-of-life care in the intensive care setting: Australian nurses’ practice
behaviours and factors influencing these practice behaviours
This email is to advise that your application has been reviewed and confirmed as
meeting the requirements of the National Statement on Ethical Conduct in Human
Research. Your ethics approval number is 0800000660. Please quote this number in
all future correspondence.
Whilst the data collection of your project has received ethical clearance, the decision
to commence and authority to commence may be dependant on factors beyond the
remit of the ethics review process. For example, your research may need ethics
clearance from other organisations or permissions from other organisations to access
staff. Therefore the proposed data collection should not commence until you have
satisfied these requirements.
If you require a formal approval certificate, please respond via reply email and one
will be issued.
Decisions related to Low Risk ethical review are subject to ratification at the next
available Committee meeting. You will only be contacted again in relation to this
matter if the Committee raises any additional questions or concerns.
233
This project has been awarded ethical clearance until 8/10/2011 and a progress report
must be submitted for an active ethical clearance at least once every twelve months.
Researchers who fail to submit an appropriate progress report may have their ethical
clearance revoked and/or the ethical clearances of other projects suspended. When
your project has been completed please advise us by email at your earliest
convenience.
Please do not hesitate to contact the unit if you have any queries.
Regards
Research Ethics Unit | Office of Research
O Block Podium | Gardens Point Campus
p +61 7 3138 5123 | f +61 7 3138 1304
w http://www.research.qut.edu.au/ethics/
234
13.2 QUT research ethics approval—Phases two and three
From: Research Ethics [[email protected]]
Sent: Monday, 14 December 2009 10:14 AM
To: KRISTEN RANSE; Patsy Yates; Fiona Coyer
Cc: Janette Lamb
Subject: Ethics Application Approval -- 0900001370
Dear Ms Kristen Ranse
Project Title:
End-of-life care in the intensive care setting: Australian nurses'
practices and factors affecting these practices
Approval Number: 0900001370
Clearance Until: 14/12/2012
Ethics Category: Human
This email is to advise that your application has been reviewed by the
Chair, University Human Research Ethics Committee, and confirmed as meeting
the requirements of the National Statement on Ethical Conduct in Human
Research.
***Please make particular note of:
1. The QUT Code of Practice requirements for data storage (resend link
to Statement of Authorship and Location of Data Form):
http://www.mopp.qut.edu.au/D/D_02_06.jsp#D_02_06.08.mdoc
2. Data must NOT be stored on USB devices as these are insecure and
easily stolen. They should be used for data transfer between machines only.
***
Whilst the data collection of your project has received ethical clearance,
the decision to commence and authority to commence may be dependant on
235
factors beyond the remit of the ethics review process. For example, your
research may need ethics clearance from other organisations or permissions
from other organisations to access staff. Therefore the proposed data
collection should not commence until you have satisfied these requirements.
If you require a formal approval certificate, please respond via reply
email and one will be issued.
Decisions related to low risk ethical review are subject to ratification at
the next available Committee meeting. You will only be contacted again in
relation to this matter if the Committee raises any additional questions or
concerns.
This project has been awarded ethical clearance until 14/12/2012 and a
progress report must be submitted for an active ethical clearance at least
once every twelve months. Researchers who fail to submit an appropriate
progress report may have their ethical clearance revoked and/or the ethical
clearances of other projects suspended. When your project has been
completed please advise us by email at your earliest convenience.
For variations, please complete and submit an online variation form:
http://www.research.qut.edu.au/ethics/forms/hum/var/variation.jsp
Please do not hesitate to contact the unit if you have any queries.
Regards
Research Ethics Unit | Office of Research
Level 4 | 88 Musk Ave | Kelvin Grove
p: +61 7 3138 5123 | f: +61 7 3138 4543
e: [email protected] | w: http://www.research.qut.edu.au/ethics/
236
13.3 ACT health ethics approval
237
238
13.4 Email indicating support for phase three of the study from the Australian
College of Critical Care Nurses
From: ACCCN [[email protected]]
Sent: Friday, 16 October 2009 3:26 PM
To: KRISTEN RANSE
Subject: RE: Recruitment of ACCCN members as participants in research
Hi Kristen,
Your research request has been approved. We will distribute an e-mail in March
2010 (or when you inform us), to invite members who have nominated 'to be
contacted for research' to participate in your research project. Keep me posted.
Have a good weekend.
Lynn Herson
Australian College of Critical Care Nurses Ltd
Tel:(03) 9347 8577 Fax: (03) 9347 8522
Free Call: 1800 357 968
National Office: [email protected]
Website: http://www.acccn.com.au/
239
13.5 Phase one bulletin board advertisement
PARTICIPATE IN RESEARCH
Information for Prospective Participants The following research activity has been reviewed via QUT arrangements for the conduct of research involving human participation and the ACT Health Human Research Ethics Committee. If you choose
to participate, you will be provided with more detailed participant information, including who you can contact if you have any concerns.
End-of-life care in the intensive care setting: Australian nurses’ practice behaviours and factors influencing these practice behaviours.
Research Team Contacts Kristen Ranse, PhD student Professor Patsy Yates, Principal supervisor
Phone: 0409 034 015 Phone: (07) 3138 3835 Email: [email protected] Email: [email protected]
Please contact the researcher team members to have any questions answered or if you require further information about the project
What is the purpose of the research? The purpose of this research is to identify and describe Intensive Care Nurses’ experiences and practices in relation to providing end-of-life care to patients and their families in the intensive care setting.
Are you looking for people like me? The research team is looking for Registered Nurses currently employed in a clinical position within the Intensive Care Unit who have provided care to a dying patient and their family in the Intensive Care Unit.
What will you ask me to do? Your participation will involve an interview of approximately 1 hour in length to discuss your experiences and practices in the provision of end-of-life care.
Are there any risks for me in taking part? The research team does not believe there are any risks for you if you choose to participate in this research.
It should be noted that if you do agree to participate, you can withdraw from participation at any time during the project without comment or penalty.
Are there any benefits for me in taking part? It is expected that this project will not benefit you directly. However, the findings of this project will contribute to nursing knowledge of current end-of-life care practice and the future evaluation of end-of-life care practice in intensive care settings. Recommendations for practice development to prepare and support intensive care nurses in the provision of end-of-life care will be made.
Will I be compensated for my time? This research has been endorsed by the Clinical Nurse Consultant (ICU) and Acting Director of Nursing (Surgical Services) and approval has been granted for participants to attend the interview during work time.
I am interested—what should I do next? If you would like to participate in this study, please contact the research team for details of the next step.
You will be provided with further information to ensure that your decision and consent to participate is fully informed.
Thank You!
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13.6 Phase one information sheet and consent form
PARTICIPANT INFORMATION for QUT RESEARCH PROJECT
End-of-life care in the intensive care setting: Australian nurses’ practice behaviours
and factors influencing these practice behaviours.
Research Team Contacts Kristen Ranse, PhD student Prof. Patsy Yates, Principal supervisor
Phone: 0409 034 015 Phone: (07) 3138 3835 Email: [email protected] Email: [email protected]
Description This project is being undertaken as part of a PhD program of research by Kristen Ranse. The purpose of this project is to identify and describe Intensive Care Nurses’ experiences and practices in relation to providing end-of-life care to patients and their families in the intensive care setting. The findings of this research will inform future research and practice development to prepare and support nurses in the provision of end-of-life care. Participation Your participation in this project is voluntary. If you do agree to participate, you can withdraw from participation at any time during the project without comment or penalty. Your decision to participate will in no way impact upon your current or future relationship with ACT Health or QUT. Your participation will involve an individual interview of approximately 1 hour in length at The Canberra Hospital. During this interview, you will be encouraged to discuss your experiences and practices in relation to the provision of end-of-life care. A digital voice recorder will be used to record each interview to enable a transcription of the discussion to be produced and permit the researcher to return to the discussion at a later time. Expected benefits It is expected that this project will not benefit you directly. However, the knowledge gained from this project will contribute to nursing knowledge of current end-of-life care practice in the intensive care setting and the future evaluation of end-of-life care for patients and their families. Risks The risks associated with your participation in this project are minimal. Reflection on experience is encouraged in professional practice; however, reflection can sometimes result in vulnerability and distress. You may withdraw your participation at any time during the project. Employees of ACT Health, and their family members, can access an employee assistance program to discuss matters relating to employment, such as stress. IPS Worldwide is the provider of the ACT Health Employee Assistance Program and can be contacted on 1300 366 789 or at www.eap.com.au Confidentiality All comments and responses are anonymous and will be treated confidentially. The names of individual persons are not required in any of the responses. Access to the digital audio recording and interview transcription will be restricted to the principal researcher and supervisory team. Consent to Participate We would like to ask you to sign a written consent form to confirm your agreement to participate. Questions / further information about the project
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Please contact the researcher team members named above to have any questions answered or if you require further information about the project. Concerns / complaints regarding the conduct of the project ACT Health and QUT are committed to researcher integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the project you may contact the ACT Health Human Research Ethics Committee: Secretariat, ACT Health Human Research Ethics Committee, Executive Coordination, Level 3, 11 Moore Street, Canberra City, ACT 2061 or phone (02) 6205 0846. Alternatively, you may contact the QUT Research Ethics Officer on (07) 3138 2340 or [email protected]. The Research Ethics Officer is not connected with the research project and can facilitate a resolution to your concern in an impartial manner.
CONSENT FORM for QUT RESEARCH PROJECT
End-of-life care in the intensive care setting: Australian nurses’ practice behaviours
and factors influencing these practice behaviours.
Statement of consent By signing below, you are indicating that you:
• have read and understood the information document regarding this project
• have had any questions answered to your satisfaction
• understand that if you have any additional questions you can contact the research team
• understand that you are free to withdraw at any time, without comment or penalty
• understand that you can contact the ACT Health Human Research Ethics Committee on (02) 6205 0846 or the Research Ethics Officer at Queensland University of Technology (QUT) on (07) 3138 2340 or [email protected] if you have concerns about the ethical conduct of the project .
• agree to participate in the project
• understand that the project will include audio recording
Name
Signature
Date / /
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13.7 Email invitation to experts to participate in the survey review panel
Dear [NAME],
My name is Kristen Ranse and I am undertaking a research project on intensive care nurses’ end-of-life care practices and the factors influencing these practices as part of a PhD program of research at Queensland University of Technology. My supervisors are Prof Patsy Yates and Dr Fiona Coyer.
This research project involves a three-phase exploratory sequential mixed method design. Phase one used a qualitative approach to interview five intensive care nurses about their experiences and practices of end-of-life care. Phase two involves the development of a survey instrument, based on a review of the literature and the findings of phase one. The instrument will then be used in phase three to conduct a national survey of Australian intensive care nurse end-of-life care practices and factors that may influence these practices.
I am writing to you to invite you to participate as a content expert reviewer of the survey instrument. As a reviewer of the instrument, you will be asked to rate the relevance of each item on the instrument. You will also be asked to comment on the readability of the survey instrument, the survey content in regard to coverage of the variables of interest and suggest the addition, deletion and revision of individual items.
To assist you in reviewing the instrument, please find attached an information sheet outlining the research project including the research questions, definitions of key terms and an overview of each section of the survey instrument.
If you would like to participate as a content reviewer, please click [S] or copy and paste the URL below to complete the review online:
[URL]
I would appreciate your feedback on the instrument by Friday 4 December 2009. If you are unable to participate on this occasion, please advise me by e-mail ([email protected]). Please do not hesitate to contact me by e-mail or phone (0431 690 114) if you have any queries.
Your support for this project is valued.
Kind regards
Kristen Ranse
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13.8 Information sheet for expert panel
INFORMATION SHEET for QUT RESEARCH
PROJECT
End-of-life care in the intensive care setting: Australian nurses’ practices and factors
affecting these practices.
Research Team Contacts
Kristen Ranse, PhD student Professor Patsy Yates, Principal supervisor
Phone: 0431 690 114 Phone: (07) 3138 3835
Email: [email protected] Email: [email protected]
Project Description Although end-of-life care is a significant component of nursing work in the intensive care setting, few studies have examined nursing practice in relation to care of the dying patient and their family in this setting. Inadequate preparation and support of nurses providing end-of-life care, in addition to the stress associated with the provision of end-of-life care, may contribute to burnout and poor retention of intensive care nurses. To prepare and support nurses in the provision of optimal end-of-life care and to evaluate and improve the care that dying patients and their families receive, it is imperative that the current end-of-life care practices of intensive care nurses are identified and described. In addition, identification of factors influencing the end-of-life care practices of intensive care nurses can inform further research and development. This research project involves a three-phase exploratory sequential mixed method design. Phase one used a qualitative approach to interview five intensive care nurses to describe their experiences and practices of end-of-life care. Phase two involves the development of a survey instrument, based on a review of the literature and the findings of phase one. This phase also includes a review of the survey instrument by a panel of experts and a pilot test of the survey instrument to determine the validity and reliability of the instrument. The refined instrument will then be used in phase three to conduct a national survey of intensive care nurse end-of-life care practices and factors that may influence these practices. Research Questions The research questions of interest in this research project are:
1. What are the most frequently reported end-of-life care practices of Australian intensive care nurses?
2. Which factors predict intensive care nurse end-of-life care practices? a. What are the select content and facilitation factors influencing end-of-life care as
perceived by Australian intensive care nurses? b. What is the relationship between nurse characteristics and select context and
facilitation factors influencing end-of-life care? c. What is the relationship between select context and facilitation factors influencing
end-of-life care and end-of-life practices of intensive care nurses?
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Variables Practices: the actions (and inactions) undertaken by intensive care nurses in the provision of end-of-life care of a patient and their family, where end-of-life care is defined as the care undertaken after a decision is made to withhold or withdraw treatment, with death of the patient the expected outcome. Practices will be measured on the survey instrument using a 5-point rating scale where 1 = never, 2 = rarely, 3 = sometimes, 4 = often and 5 = always. Context: all aspects of the setting where practice takes place (McCormack et al. 2002). Empirically derived contextual factors considered relevant to this research project include culture, physical environment, staffing and the availability of resources. Contextual factors will be measured on the survey instrument using a 5-point Likert scale where 1 = strongly disagree, 2 = disagree, 3 = neutral, 4 = agree and 5 = strongly agree. Facilitation: the process of making things easier. Facilitative factors include the attitudes and beliefs of the nurse and communication issues and the fragmentation of care delivery. Facilitation factors will be measured on the survey instrument using a 5-point Likert scale where 1 = strongly disagree, 2 = disagree, 3 = neutral, 4 = agree and 5 = strongly agree. Survey description The survey consists of three sections: demographic information, end-of-life care practices and factors influencing end-of-life care practices. The instructions to be provided to participants are in bold type under each section heading. Instructions specific to you as a member of the expert panel are indicated after the text EXPERT PANEL within the survey instrument. Section two of the instrument requires respondents to rate how often they undertake select practices when caring for a patient at the end-of-life. This section of the survey instrument aims to address the research question ‘What are the end-of-life care practices of Australian intensive care nurses?’. The items in section two (end-of-life care practices) on the survey instrument will be measured using a 5-point rating scale where 1 = never, 2 = rarely, 3 = sometimes, 4 = often and 5 = always. This rating scale will provide evidence of the frequency that specified practices are undertaken in the provision of end-of-life care by respondents to the survey. Section three of the survey instrument aims to address the research question: What factors predict Australian intensive care nurses’ end-of-life care practices?. Section three of the survey instrument includes a modified version of Kain et al.’s (2009) Neonatal Palliative Care Attitude Scale (NiPCAS) and additional items related to beliefs about end-of-life care and organisational and emotional support for clinicians that were emerged from the findings of phase one and the literature review of this research project. The items in section three (factors influencing end-of-life care) on the survey instrument will be measured using a 5-point Likert scale where 1 = strongly disagree, 2 = disagree, 3 = neutral, 4 = agree and 5 = strongly agree. References Kain, V., Gardner, G. & Yates, P. (2009). Neonatal Palliative Care Attitude Scale: Development of an instrument to measure the barriers to and facilitators of palliative care in neonatal nursing. Pediatrics, 123, e207–e213. McCormack, B., Kitson, A., Harvey, G., Rycroft-Malone, J., Titchen, A. & Seers, K. (2002). Getting evidence into practice: The meaning of ‘context’. Journal of Advanced Nursing, 38(1), 94–104.
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13.9 Phase two pilot test email invitation, email reminder and email retest
invitation
Email invitation—Pilot test
Hi,
My name is Kristen Ranse and I’m undertaking a research project on end-of-life care in intensive care settings as part of a PhD program of research at Queensland University of Technology. An information sheet regarding this study is attached to this e-mail.
I am writing to you to invite you to participate in a pilot study by completing an online survey. In two to four weeks time, you will again be requested to complete the same survey. This will enable the survey instrument to be tested for reliability prior to the survey being distributed to a national sample.
If you would like to participate, please click [S] or copy and paste the URL below to complete the review online:
[URL]
Your participation in this research will contribute to the development of a survey that will be distributed to a national sample of critical care nurses. The knowledge gained from this PhD research project may inform the development of strategies to assist in the care of the dying patient and their family in critical care units and support nurses in the provision of this care.
Many thanks for your consideration in this request.
Kristen
Reminder invitation
Hi,
I recently sent you an invitation to participate in a research project on end-of-life care in critical care settings by completing an online survey. An information sheet regarding this study is attached to this e-mail.
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If you would like to participate, please click [S] or copy and paste the URL below to complete the review online:
[URL]
Your participation in this research will contribute to the development of a survey that will be distributed to a national sample of critical care nurses. The knowledge gained from this PhD research project may inform the development of strategies to assist in the care of the dying patient and their family in critical care units and support nurses in the provision of this care.
Many thanks for your consideration in this request.
Kristen Ranse PhD Candidate Queensland University of Technology
Re-test email invitation
Hi,
Thankyou for participating in the pilot study for the research project on end-of-life care in intensive care settings by completing the online survey. I am writing to you to invite you to complete the survey again, to enable the survey instrument to be tested for reliability prior to the survey being distributed to a national sample. If you would like to participate, please click [S] or copy and paste the URL below and follow the instructions to complete the survey: [URL]
Your participation in this research will contribute to the development of a survey that will be distributed to a national sample of critical care nurses. The knowledge gained from this PhD research project may inform the development of strategies to assist in the care of the dying patient and their family in critical care units and support nurses in the provision of this care.
Many thanks for your consideration in this request.
Kristen
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13.10 Phase three email invitation and email reminder
Email invitation
Subject: End-of-life care in critical care settings: A National survey
Dear ACCCN member,
My name is Kristen Ranse and I’m undertaking a research project on end-of-life care in critical care settings as part of a PhD program of research at Queensland University of Technology. I am writing to you to invite you to participate in this study by completing an online survey. An information sheet regarding this study is attached to this e-mail.
If you would like to participate, please click on the link below and follow the instructions to complete the survey:
[URL]
Your participation in this research will contribute to nursing knowledge of end-of-life care in critical care settings and the development of strategies to assist in the care of the dying patient and their family.
Many thanks for your consideration in this request.
Kristen
Email reminder
Subject: End-of-life care survey reminder
Dear ACCCN member,
My name is Kristen Ranse and I’m undertaking a research project on end-of-life care in critical care settings as part of a PhD program of research at Queensland University of Technology. I recently sent you an invitation to participate in this study by completing an online survey. An information sheet regarding this study is attached to this e-mail.
Thank you if you have already taken the time to participate in this survey. If you have not yet participated and would like to participate, please click on the link below
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and follow the instructions to complete the survey by 5pm EST Wednesday 8 June :
[URL]
Your participation in this research will contribute to nursing knowledge of end-of-life care in critical care settings and the development of strategies to assist in the care of the dying patient and their family.
Many thanks for your consideration in this request.
Kristen Ranse
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13.11 Information sheet attached to email invitation to participate (phase two
pilot test and phase three)
PARTICIPANT INFORMATION for QUT RESEARCH
PROJECT
End-of-life care in the intensive care setting: Australian nurses’
practices and factors affecting these practices.
Research Team Contacts
Kristen Ranse, PhD student Professor Patsy Yates, Principal supervisor
Phone: 0431 690 114 Phone: (07) 3138 3835
Email: [email protected] Email: [email protected]
Description This project is being undertaken as part of a PhD program of research by Kristen Ranse. The purpose of this project is to identify the end-of-life care practices of Australian Intensive Care Nurses and the factors that might influence these practices. The findings of this research will inform future research and practice development to prepare and support nurses in the provision of end-of-life care. The project is funded by an ACT Nursing & Midwifery Board Research Grant. The ACT Nursing & Midwifery Board will not have access to the data obtained during the project. Participation Your participation in this project is voluntary. If you do agree to participate, you can withdraw from participation at any time during the project without comment or penalty. Your decision to participate will in no way impact upon your current or future relationship with QUT (for example your grades) or with the Australian College of Critical Care Nurses (ACCCN). As this project involves the submission of an anonymous survey, it will not be possible to withdraw from the project once submitted. Your participation will involve completion of an online survey. It is anticipated that completion of the survey will take approximately 20 minutes. Surveys will maintain participant anonymity by not requesting your name or contact details. The content of the survey will include demographic information, nurses end-of-life care practices and factors influencing nursing end-of-life care practice. Expected benefits It is expected that this project will not benefit you directly. However, this research will contribute to nursing knowledge of end-of-life care in the intensive care setting and inform the development of strategies to support nurses in the provision of end-of-life care. This research may inform future research to evaluate and improve the care that dying patients and their families receive. Risks The risks associated with your participation in this project are minimal. Reflection on experience is encouraged in professional practice, however, reflection can sometimes result in vulnerability or discomfort. If you do encounter any discomfort whilst completing the survey you can of course stop completing the survey and you may wish to consider accessing counselling services. QUT provides for limited free counselling for research participants of QUT projects, who may
250
experience discomfort or distress as a result of their participation in the research. Should you wish to access this service please contact the Clinic Receptionist of the QUT Psychology Clinic on +61 7 3138 0999. Please indicate to the receptionist that you are a research participant. Confidentiality All comments and responses will be treated confidentially. The names of individual persons are not required in any of the responses. Consent to Participate The submission an online survey is accepted as an indication of your consent to participate in this project. Questions / further information about the project Please contact the researcher team members named above to have any questions answered or if you require further information about the project. Concerns / complaints regarding the conduct of the project QUT is committed to researcher integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the project you may contact the QUT Research Ethics Coordinator on +61 7 3138 2091 or [email protected]. The Research Ethics Coordinator is not connected with the research project and can facilitate a resolution to your concern in an impartial manner.
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13.12 Final version of survey instrument (Word document version)
PHASE THREE SURVEY INSTRUMENT TO BE CIRCULATED TO
ACCCN MEMBERS
Please complete the following demographic information
1. Age _ _ (years)
2. Sex Male/Female
3. Where do you live? ACT/NSW/QLD/VIC/TAS/WA/SA/NT/NZ/Other
(specify country)
4. How many years of experience do you have working as a nurse? _ _
5. How many years of experience do you have working as a nurse in an intensive or
critical care unit? _ _
6. What is your highest qualification in nursing?
Hospital certificate, undergraduate, postgraduate
7. Have you undertaken further formal education (graduate certificate/diploma etc.)
in intensive or critical care nursing?
No, Yes, Currently studying
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8. How would you describe your current workplace:
General ICU (integrated medical/surgical including ICU managed HDU)
ICU/CCU/HDU (integrated intensive care/coronary care/high dependency unit)
Paediatric ICU
Neonatal ICU
High Dependency/Step Down/Special care unit
Emergency Department
Staff development/education unit
Research Centre
University
Other (specify)
9. Please specify the location of your current workplace:
Major city, regional area, remote area
10. The majority of your work in your current employment is:
Clinical (direct patient care)/Nursing management (team leader / supervision of
clinicians) / Nursing management (administration)/nursing education/nursing
research/Other
11. Please specify the last time you provided direct patient care in a critical care unit
Within the last week
Within the last month
In last 3 months
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In last 6 months
In last 12 months
In the last 1–5 years
In the last 6–10 years
More than 10 years
Never
In this project, end-of-life care is defined as the care that is provided after a
decision has been made to withhold or withdraw treatment, with death of the
patient the expected outcome.
12. Please specify the last time that you provided end-of-life care to a patient in a
critical care unit
Within the last week
Within the last month
In last 3 months
In last 6 months
In last 12 months
In the last 1–5 years
In the last 6–10 years
More than 10 years
Never
13. Approximately how many patients have you cared for at the end-of-life in the last month?
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14. Approximately how many patients have you cared for at the end-of-life in the last 12 months?
END-OF-LIFE CARE IN THE CRITICAL CARE CONTEXT
We would like to know about the provision of end-of-life care in critical care
units. In this section, please rate the extent to which you agree or disagree with
the following statements about end-of-life care in your unit.
Please note that there are no right or wrong answers.
Scale
Strongly
Agree
Agree Neutral Disagree Strongly
Disagree
The medical staff support end-of-life care for dying patients in my unit
In my Unit, the team expresses its opinions, values and beliefs about providing care
to dying patients
All members of the healthcare team in my Unit agree with and support end-of-life
care when it is implemented
After a decision is made to withdraw life-sustaining treatment, less time is spent with
the patient by the critical care medical team
After a decision is made to withdraw life-sustaining treatment, nurses are left to
manage the care of the patient
In my Unit, end-of-life care is mostly allocated to junior nurses
In my Unit, nurses view the provision of end-of-life care as an important component
of critical care nursing
The physical environment of my Unit is ideal for providing end-of-life care
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Private rooms are available to care for the patient at the end-of-life
My Unit is adequately equipped (chairs/recliners/waiting room etc.) to support the
comfort needs of the family during end-of-life care
My Unit is adequately staffed for providing the needs of dying patients and their
families
When a patient dies in my Unit, nurses have sufficient time to spend with the family
There are policies/guidelines to assist in the delivery of end-of-life care in my Unit
Lack of staff results in no ‘down time’ between the death of a patient and the
admission of the next patient
When a patient dies in my Unit, families have sufficient time to spend with the
patient
In my Unit, families are involved in decisions about the dying patient
In my Unit, when a diagnosis with a likely poor outcome is made, families are
informed of end-of-life care options
In my Unit, withdrawal of treatment is delayed whilst waiting for relatives of the
patient to arrive
In my Unit, the patient’s preferences (or their likely preference according to family)
for end-of-life care are considered
In my Unit, families are given adequate time to consider decisions to
withhold/withdraw treatment for the patient (their relative)
In my Unit, family meetings with the health care team are held to resolve differing
views about a patient’s treatment
I have received in-service education that assists me to support and communicate with
families of dying patients
I have received in-service education that assists me to provide care and manage
patient symptoms at the end-of-life
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My undergraduate nursing education included end-of-life care content
My postgraduate nursing education included end-of-life care content relevant to the
critical care context
I draw on evidence from the literature to provide end-of-life care to patients and their
families
I feel adequately prepared to care for patients at the end-of-life
I don’t know what to say to the family of a patient at the end-of-life
I have limited knowledge of symptom management for patient’s at the end-of-life
I am often exposed to death in the critical care environment
I have learnt from other nurses how to provide end-of-life care
Analgesia should be titrated to keep the patient comfortable even if this hastens death
Pressure area care should continue to be provided for a patient at the end-of-life
End-of-life care should include care of the patient’s family
Abrupt withdrawal of mechanical ventilation may contribute to dyspnoea
When withdrawing mechanical ventilation at the end-of-life, ventilator weaning
(such as reductions in FiO2 and PEEP) should occur prior to extubating the patient or
placing a patient on a T-piece
Intravenous fluids should be provided to maintain hydration for the patient at the
end-of-life
The provision of end-of-life care requires emotional detachment
It is OK to cry when a patient dies
When a patient dies in my Unit, counselling is available if I need it
In my Unit, nurses are expected to cope with death and dying
I feel supported when caring for a patient at the end-of-life
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After caring for a patient at the end-of-life, my colleagues will ask me if I am OK
My supervisors/managers ensure staff caring for patients at the end-of-life are
supported
My colleagues appreciate the stressors associated with caring for patients at the end-
of-life
My supervisors/managers provide guidance that assists me to provide end-of-life
care
I feel a sense of personal failure when a patient dies
It is a privilege to care for a patient at the end-of-life and their family
I can influence the patient and family’s experience of end-of-life care
My own personal experiences of death have influenced the care I provide to patients
at the end-of-life
End-of-life care is as important as curative care in the critical care environment
After a decision is made to withdraw treatment, I spend less time with the patient
Patients at the end-of-life require little nursing care
End-of-life care requires advanced nursing skills
In my unit, nurses that know the patient and family are allocated to care for the
patient to maintain continuity of care
In my unit, a plan of care for the patient is clearly documented by the medical team
after a decision to withhold or withdraw treatment is made
In my unit, the critical care team and the patient’s primary medical or surgical team
agree on a plan of care
Following a decision to withhold or withdraw treatment, patients remain in my Unit
for end-of-life care
I am very much afraid to die
The thought of death seldom enters my mind
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It doesn’t make me nervous when people talk about death
I dread to think about having an operation
I am not at all afraid to die
I am not particularly afraid of getting cancer
The thought of death never bothers me
I am often distressed by the way that time flies so very rapidly
I fear dying a painful death
The subject of life after death troubles me greatly
I am really scared of having a heart attack
I often think about how short life really is
I shudder when I hear people talking about world war III
The sight of a dead body is horrifying to me
I feel that the future holds nothing for me to fear
END-OF-LIFE CARE PRACTICES
We would like to know what activities YOU undertake when caring for a
patient at the end-of-life in an intensive care or critical care unit. Please note, in
this section we are interested in your own practices when caring for people at
end-of-life, not those of your unit more generally. There are no right or wrong
answers.
For each statement listed below, please rate how often YOU engage in the
following practices when providing end-of-life care in the intensive/critical care
setting.
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Scale
Always Often Sometimes Rarely Never
Provide the family with options about the care of the patient
Ask the family if they would like to be involved in care of the patient
Ask the family their preferences for the patient’s care
Attend family meetings with the intensive care team
Ask the family about their knowledge of the patient’s wishes for end-of-life care
Answer the family’s questions about the patient’s condition
Fully inform the family about all aspects of the plan of care
Explain all interventions undertaken in the care of the patient
Provide information to the family about the dying process
Explain to the family what is happening to the patient
Document the family’s preference for the care of the patient
Introduce the nursing staff on the oncoming shift to the patient and family
Handover the family’s preferences for the patient’s end-of-life care to the oncoming
nurse
Ask the intensive care team to document the plan of care/treatment orders
Liaise with other members of the health care team to meet identified needs of the
patient and family
Encourage the family to reminisce about the patient
Listen to the family reminisce about the patient
Permit family to visit outside of regular visiting hours
Encourage the family to talk to the patient
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Encourage the family to touch the patient
Provide the family with access to a private room to congregate
Ask family members if there is anyone they would like to be there
Arrange for a counsellor or social worker to meet with the family
Stay in the room with the patient and family, if the patient and family wants
Ask the family about their feelings
Ask the family how they are coping
Provide opportunities for the family to create positive memories
Move the patient to a more private area of the unit
Create a calm, peaceful environment
Turn off monitoring equipment
Silence alarms on all equipment
Adjust (dim or turn off) the lighting around the patient’s bed space
Play music
Put up photographs of the patient, family members and/or pets
Cluster/coordinate care to minimise interruptions and provide privacy for the patient
and family
Draw curtains to provide privacy for the patient and family
Place chairs around the bed for the family
Administer fluids to the patient to maintain hydration
Keep the patient sedated, if appropriate
Administer analgesia via intravenous infusion
Provide care to maintain patient hygiene
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Provide pressure area care
Maintain the patient’s airway using oro/endotracheal suction
Remove the endotracheal tube if the patient is breathing spontaneously
Initiate (or implement) weaning from mechanical ventilation once the decision to
withdraw mechanical ventilation has been made (i.e. reduce FiO2, rate and/or tidal
volume)
Administer medications to prevent/minimise dyspnoea and respiratory secretions
Regularly obtain and document patient vital signs during the provision of end-of-life
care
Ask the family about spiritual needs
Offer to arrange for a spiritual advisor or pastoral care representative to visit the
patient and family
Ask the family about cultural needs
Support the family to participate in cultural practices related to dying
Open-ended question: List the 5 most important practices in the provision of end-
of-life care.
Thank you for completing this survey. In the space below, please add any
additional comments about end-of-life care
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13.13 Participant responses as a percentage of the sample, means and standard deviations for each item in the Critical care nurses’ end-
of-life care practices section of the survey instrument (n = 392) Item Never Rarely Sometimes Often Always M (SD)
Provide the family with options about the care of the patient 0.3 5.4 21.4 44.4 28.6 4.0 (0.9)
Ask the family if they would like to be involved in the care of the patient 0.5 4.3 19.6 36.0 39.5 4.1 (0.9)
Ask the family their preferences for the patient’s care 0.5 5.1 19.4 40.1 34.9 4.0 (0.9)
Attend family meetings with the medical team 0.5 3.8 15.8 32.1 47.7 4.2 (0.9)
Ask the family about their knowledge of the patient’s wishes for EOLC 0.8 3.8 16.6 38.0 40.8 4.1 (0.9)
Answer the family’s questions about the patient’s condition 0 0.5 3.3 30.4 65.8 4.6 (0.6)
Fully inform the family about all aspects of the plan of care 0 1.0 4.8 32.9 61.2 4.5 (0.6)
Explain all interventions undertaken in the care of the patient 0 0.5 4.6 34.7 60.2 4.6 (0.6)
Provide information to the family about the dying process 1.0 3.1 16.3 43.4 36.2 4.1 (0.9)
Explain to the family what is happening to the patient 0 1.8 4.8 39.3 54.1 4.5 (0.7)
Document the family’s preference for the care of the patient 1.3 5.4 14.3 33.9 45.2 4.2 (1.0)
Introduce the nursing staff on the oncoming shift to the patient and family 0 0.5 2.3 21.4 75.8 4.7 (0.5)
Handover the family’s preference for the patient’s EOLC to the oncoming nurse 0.3 1.0 4.1 21.7 73.0 4.7 (0.6)
Ask the intensive care team to document the plan of care/treatment orders 0 4.1 9.2 29.1 57.7 4.4 (0.8)
Liaise with other members of the health care team to meet identified needs of the patient and family 0 1.3 9.2 38.3 51.3 4.4 (0.7)
Encourage the family to reminisce about the patient 1.0 6.4 30.9 43.4 18.4 3.7 (0.9)
Listen to the family reminisce about the patient 0 2.0 15.6 44.4 38.0 4.2 (0.8)
Permit the family to visit outside of regular visiting hours 0.3 0 2.3 21.2 76.3 4.7 (0.5)
Encourage the family to talk to the patient 0 0.5 5.9 25.0 68.6 4.6 (0.6)
Encourage the family to touch the patient 0 0.3 3.3 24.2 72.2 4.7 (0.6)
Provide the family with access to a private room to congregate 0.3 2.6 13.8 39.3 44.1 4.2 (0.8)
Ask family members if there is anyone they would like to be there 0 0.8 4.1 31.1 64.0 4.6 (0.6)
263
Item Never Rarely Sometimes Often Always M (SD)
Arrange for a counsellor or social worker to meet with the family 0.5 2.6 14.0 37.8 45.2 4.2 (0.8)
Stay in the room with the patient and family, if the patient and family wants 0 1.5 11.2 33.9 53.3 4.4 (0.8)
Ask the family about their feelings 0.8 8.2 26.3 41.8 23.0 3.8 (0.9)
Ask the family how they are coping 0.3 2.0 14.5 48.5 34.7 4.2 (0.8)
Provide opportunities for the family to create positive memories 0 5.9 21.4 39.8 32.9 4.0 (0.9)
Move the patient to a more private area of the unit 1.0 8.2 23.0 48.0 19.9 3.8 (0.9)
Create a calm, peaceful environment 0.5 1.0 7.7 49.7 41.1 4.3 (0.7)
Turn off monitoring equipment 0.8 2.3 20.7 43.9 32.4 4.1 (0.8)
Silence alarms on all equipment 0 0.5 5.6 26.5 67.3 4.6 (0.6)
Adjust (dim or turn off) the lighting around the patient’s bed space 0.5 3.1 12.2 49.7 34.4 4.2 (0.8)
Play music 6.1 13.0 46.7 28.1 6.1 3.2 (0.9)
Put up photographs of the patient, family members and/or pets 2.6 4.6 26.0 49.0 17.9 3.8 (0.9)
Cluster/coordinate care to minimise interruptions and provide privacy for the patient and family 0.3 1.5 3.8 45.4 49.0 4.4 (0.7)
Draw curtains to provide privacy for the patient and family 0 0.5 4.1 26.3 69.1 4.6 (0.6)
Place chairs around the bed for the family 0 0.5 1.3 23.2 75.0 4.7 (0.5)
Administer fluids to the patient to maintain hydration 2.8 8.2 30.6 38.3 20.2 3.7 (1.0)
Keep the patient sedated, if appropriate 0 0.5 9.2 43.1 47.2 4.4 (0.7)
Administer analgesia via intravenous infusion 0 0.8 6.1 46.7 46.4 4.4 (0.6)
Provide care to maintain patient hygiene 0 0.3 2.8 21.2 75.8 4.7 (0.5)
Provide pressure area care 0.3 1.3 6.4 32.1 59.9 4.5 (0.7)
Maintain the patient’s airway using oro/endotracheal suction 1.5 2.8 16.6 40.1 39.0 4.1 (0.9)
Remove the endotracheal tube if the patient is breathing spontaneously 1.8 1.5 19.6 44.9 32.1 4.0 (0.9)
Initiate (or implement) weaning from mechanical ventilation once the decision to withdraw
mechanical ventilation has been made (i.e. reduce FiO2, rate and/or tidal volume) 5.1 8.2 26.5 38.3 21.9 3.6 (1.1)
Administer medications to prevent/minimise dyspnoea and respiratory sections 1.3 2.6 16.6 44.4 35.2 4.1 (0.9)
264
Item Never Rarely Sometimes Often Always M (SD)
Regularly obtain and document patient vital signs during the provision of EOLC 3.1 13.3 28.3 31.4 24.0 3.6 (1.1)
Ask the family about spiritual needs 0.5 2.8 9.4 29.3 57.9 4.4 (0.8)
Offer to arrange for a spiritual advisor or pastoral care representative to visit the patient and family 0.8 1.0 7.1 31.1 59.9 4.5 (0.7)
Ask the family about cultural needs 0.8 4.3 16.3 29.3 49.2 4.2 (0.9)
Support the family to participate in cultural practices related to dying 0.8 3.3 13.5 32.9 49.5 4.3 (0.9)
Note. M = mean; SD = standard deviation; EOLC = end-of-life care.
265
13.14 Participant responses as a percentage of the sample, means and standard deviations for each item in the Factors influencing the
provision of end-of-life care section of the survey instrument (n = 392)
Item SD D N A SA M (SD)
The medical staff support EOLC for dying patients in my unit 0.8 8.7 9.2 54.1 27.3 4.0 (0.9)
In my Unit, the team expresses its opinions, values and beliefs about providing care to dying patients 1.3 8.7 10.2 58.2 21.7 3.9 (0.9)
All members of the healthcare team in my Unit agree with and support EOLC when it is implemented 1.3 10.5 12.2 53.8 22.2 3.9 (0.9)
After a decision is made to withdraw life-sustaining treatment, less time is spent with the patient by the critical care medical team 7.4 25.0 12.0 42.1 13.5 3.3 (1.2)
After a decision is made to withdraw life-sustaining treatment, nurses are left to manage the care of the patient 6.4 27.6 9.9 40.3 15.8 3.3 (1.2)
In my Unit, EOLC is mostly allocated to junior nurses 36.2 48.5 10.7 2.8 1.8 1.9 (0.9)
In my Unit, nurses view the provision of EOLC as an important component of critical care nursing 1.5 5.1 12.8 44.1 36.5 4.1 (0.9)
The physical environment of my Unit is ideal for providing EOLC 16.8 43.4 20.4 16.6 2.8 2.5 (1.0)
Private rooms are available to care for the patient at the EOL 8.2 19.9 14.8 44.6 12.5 3.3 (1.2)
My Unit is adequately equipped (chairs/recliners/waiting room etc.) to support the comfort needs of the family during EOLC 14.5 33.2 14.8 28.6 8.9 2.8 (1.2)
My Unit is adequately staffed for providing the needs of dying patients and their families 5.4 24.5 19.1 42.6 8.4 3.2 (1.1)
When a patient dies in my Unit, nurses have sufficient time to spend with the family 3.8 21.4 14.0 50.5 10.2 3.4 (1.1)
There are policies/guidelines to assist in the delivery of EOLC in my Unit 6.4 28.6 22.2 34.2 8.7 3.1 (1.1)
Lack of staff results in no ‘down time’ between the death of a patient and the admission of the next patient 3.8 24.5 23.2 34.9 13.5 3.3 (1.1)
When a patient dies in my Unit, families have sufficient time to spend with the patient 0.8 5.1 12.0 61.5 20.7 4.0 (0.8)
In my Unit, families are involved in decisions about the dying patient 1.3 1.8 6.6 59.4 30.9 4.2 (0.7)
In my Unit, when a diagnosis with a likely poor outcome is made, families are informed of EOLC options 1.3 8.7 10.7 54.1 25.3 3.9 (0.9)
In my Unit, withdrawal of treatment is delayed whilst waiting for relatives of the patient to arrive 0.8 2.6 5.6 61.2 29.8 4.2 (0.7)
In my Unit, the patient’s preferences (or their likely preference according to family) for EOLC are considered 1.3 2.6 10.2 57.4 28.6 4.1 (0.8)
In my Unit, families are given adequate time to consider decisions to withhold/withdraw treatment for the patient (their relative) 0.5 2.6 11.5 60.5 25.0 4.1 (0.7)
In my Unit, family meetings with the health care team are held to resolve differing views about a patient’s treatment 1.0 3.6 7.9 56.9 30.6 4.1 (0.8)
I have received in-service education that assists me to support and communicate with families of dying patients 13.0 40.8 12.0 28.1 6.1 2.7 (1.2)
266
Item SD D N A SA M (SD)
I have received in-service education that assists me to provide care and manage patient symptoms at the EOL (n = 390) 12.6 42.1 13.6 25.6 6.2 2.7 (1.2)
My undergraduate nursing education included EOLC content (n = 390) 9.0 27.2 22.1 36.2 5.6 3.0 (1.1)
My postgraduate nursing education included EOLC content relevant to the critical care context (n = 390) 8.5 25.1 22.3 33.6 10.5 3.1 (1.2)
I draw on evidence from the literature to provide EOLC to patients and their families 2.3 17.1 20.7 48.2 11.7 3.5 (1.0)
I feel adequately prepared to care for patients at the EOL (n = 389) 0.5 6.9 13.6 49.1 29.8 4.0 (0.9)
I don’t know what to say to the family of a patient at the EOL (n = 391) 26.8 45.8 15.1 9.2 3.1 2.2 (1.0)
I have limited knowledge of symptom management for patient’s at the EOL (n = 391) 28.9 51.7 8.2 9.0 2.3 2.0 (1.0)
I am often exposed to death in the critical care environment 2.3 9.2 14.3 44.9 29.3 3.9 (1.0)
I have learnt from other nurses how to provide EOLC 2.3 6.6 10.7 63.5 16.8 3.9 (0.9)
Analgesia should be titrated to keep the patient comfortable even if this hastens death (n = 391) 0 0.5 2.6 36.1 60.9 4.6 (0.6)
Pressure area care should continue to be provided for a patient at the EOL (n = 391) 0 1.8 7.9 39.1 51.2 4.4 (0.7)
EOLC should include care of the patient’s family (n = 391) 0 0 0.5 24.6 74.9 4.7 (0.5)
Abrupt withdrawal of mechanical ventilation may contribute to dyspnoea (n = 387) 0.5 4.9 16.5 50.9 27.1 4.0 (0.8)
When withdrawing mechanical ventilation at the end-of-life, ventilator weaning (such as reductions in FiO2 and PEEP) should occur
prior to extubating the patient or placing a patient on a T-piece (n = 391) 5.1 22.0 29.2 31.7 12.0 3.2 (1.1)
Intravenous fluids should be provided to maintain hydration for the patient at the EOL (n = 390) 6.2 15.9 30.3 36.7 11.0 3.3 (1.1)
The provision of EOLC requires emotional detachment 23.0 51.5 11.5 10.2 3.8 2.2 (1.0)
It is OK to cry when a patient dies (n = 390) 1.3 1.5 10.0 52.3 34.9 4.2 (0.8)
When a patient dies in my Unit, counselling is available if I need it (n = 390) 4.9 12.8 14.6 56.2 11.5 3.6 (1.0)
In my Unit, nurses are expected to cope with death and dying (n = 391) 0.8 14.8 12.5 59.6 12.3 3.7 (0.9)
I feel supported when caring for a patient at the EOL (n = 390) 2.1 8.7 21.3 54.9 13.1 3.7 (0.9)
After caring for a patient at the EOL, my colleagues will ask me if I am OK (n = 391) 1.3 6.1 11.5 59.1 22.0 3.9 (0.8)
My supervisors/managers ensure staff caring for patients at the EOL are supported (n = 390) 3.6 16.9 23.3 45.6 10.5 3.4 (1.0)
My colleagues appreciate the stressors associated with caring for patients at the EOL (n = 391) 0.8 4.3 12.5 64.7 17.6 3.9 (0.7)
My supervisors/managers provide guidance that assists me to provide EOLC (n = 390) 5.9 21.8 28.7 37.9 5.6 3.2 (1.0)
267
Item SD D N A SA M (SD)
I feel a sense of personal failure when a patient dies (n = 391) 46.0 44.8 5.9 2.0 1.3 1.7 (0.8)
It is a privilege to care for a patient at the EOL and their family 0.8 1.0 7.1 33.9 57.1 4.5 (0.7)
I can influence the patient and family’s experience of EOLC (n = 391) 0.8 1.0 3.1 41.9 53.2 4.5 (0.7)
My own personal experiences of death have influenced the care I provide to patients at the EOL 1.0 9.4 17.3 37.2 34.9 4.0 (1.0)
EOLC is as important as curative care in the critical care environment (n = 389) 0.5 1.0 4.6 37.8 56.0 4.5 (0.7)
After a decision is made to withdraw treatment, I spend less time with the patient 37.0 43.1 8.2 10.7 1.0 2.0 (1.0)
Patients at the EOL require little nursing care (n = 388) 50.5 40.5 4.4 2.3 2.3 1.7 (0.9)
EOLC requires advanced nursing skills (n = 390) 1.8 12.6 18.5 40.3 26.9 3.8 (1.0)
In my unit, nurses that know the patient and family are allocated to care for the patient to maintain continuity of care 2.6 25.3 27.8 37.2 7.1 3.2 (1.0)
In my unit, a plan of care for the patient is clearly documented by the medical team after a decision to withhold or withdraw treatment
is made 2.6 21.2 16.6 46.2 13.5 3.5 (1.1)
In my unit, the critical care team and the patient’s primary medical or surgical team agree on a plan of care 3.3 11.5 25.8 49.7 9.7 3.5 (0.9)
Following a decision to withhold or withdraw treatment, patients remain in my Unit for EOLC 0.8 13.8 30.9 44.9 9.7 3.5 (0.9)
I am very much afraid to die 15.1 41.6 27.6 10.5 5.4 2.5 (1.0)
The thought of death seldom enters my mind 7.1 49.2 21.9 19.9 1.8 2.6 (0.9)
It doesn’t make me nervous when people talk about death 1.5 7.9 5.9 53.8 30.9 4.1 (0.9)
I dread to think about having an operation 17.3 41.1 18.9 18.9 3.8 2.5 (1.1)
I am not at all afraid to die 5.6 31.1 33.2 23.5 6.6 2.9 (1.0)
I am not particularly afraid of getting cancer 12.2 46.7 20.9 18.1 2.0 2.5 (1.0)
The thought of death never bothers me 7.1 49.7 23.7 16.8 2.6 2.6 (0.9)
I am often distressed by the way that time flies so very rapidly 5.9 31.4 33.2 23.7 5.9 2.9 (1.0)
I fear dying a painful death 1.5 18.4 18.9 43.4 17.9 3.6 (1.0)
The subject of life after death troubles me greatly 29.4 44.9 23.0 1.8 0.8 2.0 (0.8)
I am really scared of having a heart attack 13.0 46.7 26.5 12.5 1.3 2.4 (0.9)
I often think about how short life really is 5.1 21.2 21.9 42.1 9.7 3.3 (1.1)
268
Item SD D N A SA M (SD)
I shudder when I hear people talking about world war III 21.7 38.8 25.5 11.2 2.8 2.4 (1.0)
The sight of a dead body is horrifying to me 52.6 42.3 4.1 0.3 0.8 1.5 (0.7)
I feel that the future holds nothing for me to fear 7.1 33.7 37.5 17.1 4.6 2.8 (1.0)
Note. SD = strongly disagree; D = disagree; N = neutral; A = agree; SA = strongly agree; M = mean; SD = standard deviation; EOL = end of life; EOLC = end-of-life care.
269
13.15 Structure matrix for exploratory factor analysis with oblique rotation—Critical care nurses’ end-of-life care practices
Factor
1 2 3 4 5 6 7
Explain all interventions undertaken in the care of the patient .76 .22 .23 .27 .25 .38 –.27
Fully inform the family about all aspects of the plan of care .75 .22 .26 .36 .20 .49 –.21
Explain to the family what is happening to the patient .74 .18 .33 .32 .25 .35 –.14
Answer the family's questions about the patient's condition .68 .33 .19 .28 .26 .42 –.24
Introduce the nursing staff on the oncoming shift to the patient and family .65 .34 .36 .27 .22 .56 –.41
Liaise with other members of the health care team to meet identified needs of the patient and family .59 .28 .35 .39 .31 .49 –.07
Handover the family’s preferences for the patient’s end-of-life care to the oncoming nurse .59 .40 .29 .45 .16 .53 –.34
Provide information to the family about the dying process .57 .15 .32 .39 .14 .33 .02
Ask the intensive/critical care team to document the plan of care/treatment orders .48 .23 .18 .36 .20 .43 –.15
Attend family meetings with the intensive/critical care team .40 .33 .12 .22 .07 .32 –.05
Adjust (dim or turn off) the lighting around the patient’s bed space .23 .68 .28 .20 .20 .33 –.01
Silence alarms on all equipment .25 .64 .06 .15 .06 .25 –.24
Create a calm, peaceful environment .26 .61 .33 .25 .22 .33 .14
Place chairs around the bed for the family .49 .61 .32 .13 .28 .52 –.36
Cluster/coordinate care to minimise interruptions and provide privacy for the patient and family .32 .56 .47 .14 .25 .50 –.10
Draw curtains to provide privacy for the patient and family .40 .56 .28 .13 .27 .44 –.33
Turn off monitoring equipment .11 .53 .12 .15 –.01 .157 –.19
Remove the endotracheal tube if the patient is breathing spontaneously .21 .43 .07 .16 .12 .11 –.14
Permit family to visit outside of regular visiting hours .37 .40 .19 .19 .20 .39 –.29
Move the patient to a more private area of the unit .10 .39 .28 .16 .20 .209 .12
Administer medications to prevent/minimise dyspnoea and respiratory sections .20 .34 .12 .28 .28 .21 –.19
270
Factor
1 2 3 4 5 6 7
Provide the family with access to a private room to congregate .26 .31 .25 .15 .18 .25 .12
Provide opportunities for the family to create positive memories .42 .23 .71 .38 .36 .54 –.02
Encourage the family to reminisce about the patient .31 .14 .69 .18 .18 .33 –.14
Ask the family about their feelings .32 .21 .65 .42 .23 .45 –.15
Ask the family how they are coping .31 .28 .60 .36 .30 .46 –.17
Listen to the family reminisce about the patient .35 .23 .57 .25 .24 .45 –.17
Put up photographs of the patient, family members and/or pets .17 .33 .56 .09 .25 .35 .06
Play music .18 .27 .54 .17 .17 .34 .20
Ask the family their preferences for the patient's care .36 .26 .26 .78 .18 .35 –.09
Ask the family if they would like to be involved in the care of the patient .42 .22 .34 .75 .24 .38 –.04
Provide the family with options about the care of the patient .40 .20 .31 .67 .22 .36 .04
Ask the family about their knowledge of the patient's wishes for EOLC .47 .35 .24 .58 .10 .43 –.10
Document the family’s preference for the care of the patient .51 .17 .37 .54 .17 .46 –.09
Initiate (or implement) weaning from mechanical ventilation… .10 .25 .10 .34 .24 .19 –.05
Maintain the patient’s airway using oro/endotracheal suction .25 .17 .21 .18 .60 .17 –.02
Keep the patient sedated, if appropriate .32 .38 .14 .21 .55 .37 –.30
Administer fluids to the patient to maintain hydration .08 –.03 .13 .15 .55 .10 –.11
Administer analgesia via intravenous infusion .25 .42 .07 .16 .49 .35 –.32
Provide pressure area care .44 .26 .29 .01 .49 .24 –.13
Provide care to maintain patient hygiene .47 .38 .24 .00 .48 .40 –.26
Regularly obtain and document patient vital signs during the provision of EOLC .12 –.03 .25 .08 .46 .20 .03
Ask the family about spiritual needs .38 .24 .42 .30 .23 .86 –.12
Offer to arrange for a spiritual advisor or pastoral care representative to visit the patient and family .36 .24 .33 .26 .15 .84 –.14
Ask the family about cultural needs .40 .23 .42 .33 .28 .83 –.05
271
Factor
1 2 3 4 5 6 7
Support the family to participate in cultural practices related to dying .44 .28 .43 .33 .28 .83 –.06
Ask family members if there is anyone they would like to be there .49 .35 .39 .28 .21 .63 –.16
Stay in the room with the patient and family, if the patient and family wants .42 .30 .45 .26 .22 .60 –.17
Arrange for a counsellor or social worker to meet with the family .38 .28 .36 .17 .20 .44 .02
Encourage the family to touch the patient .41 .34 .39 .17 .32 .38 –.69
Encourage the family to talk to the patient .32 .29 .39 .12 .34 .31 –.60
Note. EOLC = end-of-life care.
272
13.16 Structure matrix for exploratory factor analysis with oblique rotation—Factors influencing the provision of end-of-life care
Factor
1 2 3 4 5 6 7 8
My supervisors/managers ensure staff caring for patients at the EOL are supported .83 –.01 –.15 .22 –.23 .20 .20 –.20
My supervisors/managers provide guidance that assists me to provide EOLC .77 –.08 –.19 .28 –.21 .24 .21 –.09
I feel supported when caring for a patient at the EOL .75 .08 –.20 .31 –.19 .30 .15 –.26
After caring for a patient at the EOL, my colleagues will ask me if I am OK .69 .23 –.19 .17 –.06 .24 .07 –.21
My colleagues appreciate the stressors associated with caring for patients at the EOL .65 .22 –.25 .18 –.16 .33 .02 –.30
When a patient dies in my Unit, counselling is available if I need it .55 –.14 –.03 .21 –.12 .20 .29 –.03
In my Unit, nurses view the provision of EOL care as an important component of critical care nursing .38 .23 –.19 .25 –.08 .28 .08 –.18
Lack of staff results in no ‘down time’ between the death of a patient and the admission of the next patient .34 –.13 –.18 .23 –.27 –.02 .00 –.08
EOLC is as important as curative care in the critical care environment –.01 .67 –.16 –.06 .03 –.06 .12 –.27
I can influence the patient and family’s experience of EOLC .07 .61 –.10 .01 –.05 –.04 .03 –.34
EOLC should include care of the patient’s family .01 .58 –.22 –.12 .07 .08 –.01 –.21
It is a privilege to care for a patient at the EOL and their family .14 .58 –.15 .02 –.04 –.10 .10 –.33
Analgesia should be titrated to keep the patient comfortable even if this hastens death .06 .40 –.15 –.03 .06 .00 .03 –.23
My own personal experiences of death have influenced the care I provide to patients at the EOL and their family –.05 .38 –.04 .03 .03 –.04 .10 –.14
It is OK to cry when a patient dies .08 .32 –.13 .01 –.14 –.05 .05 –.21
Pressure area care should continue to be provided for a patient at the EOL –.01 .32 –.08 –.02 .01 .07 .05 –.13
Abrupt withdrawal of mechanical ventilation may contribute to dyspnoea –.00 .28 –.22 .04 .11 –.03 .05 –.20
I am often exposed to death in the critical care environment .04 .24 –.23 .01 .17 .06 –.04 –.10
In my Unit, families are given adequate time to consider decisions to withhold /withdraw treatment for the patient .17 .06 –.74 .18 –.16 .20 .07 –.11
In my Unit, family meetings with the health care team are held to resolve differing views about a patient’s treatment .28 .03 –.73 .24 –.16 .28 .06 –.14
In my Unit, the patient’s preferences (or their likely preference according to family) for EOLC are considered .28 .07 –.61 .15 –.11 .41 .09 –.03
273
Factor
1 2 3 4 5 6 7 8
In my Unit, families are involved in decisions about the dying patient .206 .149 –.59 .239 –.155 .228 –.01 –.04
In my Unit, withdrawal of treatment is delayed whilst waiting for relatives of the patient to arrive .01 .227 –.509 .098 .045 .106 –.04 –.105
When a patient dies in my Unit, families have sufficient time to spend with the patient .37 .01 –.448 .407 –.27 .22 –.14 –.18
The physical environment of my Unit is ideal for providing EOLC .14 –.085 –.05 .72 –.118 .08 .088 –.04
My Unit is adequately equipped to support the comfort needs of the family during EOLC .13 –.00 –.189 .71 –.10 .16 .16 –.058
My Unit is adequately staffed for providing the needs of dying patients and their families .377 –.12 –.325 .68 –.185 .189 .049 –.17
Private rooms are available to care for the patient at the EOL .18 .07 –.097 .675 .026 .14 .08 –.018
When a patient dies in my Unit, nurses have sufficient time to spend with the family .46 –.079 –.409 .52 –.28 .20 –.11 –.396
In my Unit, nurses that know the patient and family are allocated to care for the patient to maintain continuity… .358 .00 –.16 .40 –.26 .257 .198 –.00
Following a decision to withhold or withdraw treatment, patients remain in my Unit for EOLC .21 .21 –.20 .318 –.126 .18 .04 –.13
After a decision is made to withdraw treatment, less time is spent with the patient by the critical care medical team –.22 .06 .12 –.189 .757 –.16 –.157 .04
After a decision is made to withdraw treatment, nurses are left to manage the care of the patient –.238 .026 .18 –.149 .727 –.18 –.088 .04
In my Unit, EOLC is mostly allocated to junior nurses –.22 –.13 .13 –.129 .35 –.18 .029 .22
After a decision is made to withdraw treatment, I spend less time with the patient .01 –.299 .20 .00 .33 .146 –.31 .27
In my Unit, nurses are expected to cope with death and dying .25 –.229 .03 .13 –.278 –.075 .00 .01
The medical staff support EOLC for dying patients in my Unit .29 .06 –.33 .16 –.175 .60 –.015 –.156
In my Unit, when a diagnosis with a likely poor outcome is made, families are informed of EOLC options .25 .025 –.425 .195 –.236 .59 .10 –.10
In my Unit, the team expresses its opinions, values and beliefs about providing care to dying patients .368 .035 –.16 .20 –.105 .57 .07 –.095
All members of the healthcare team in my Unit agree with and support EOLC when it is implemented .27 .089 –.248 .317 –.05 .538 –.119 –.096
In my Unit, a plan of care for the patient is clearly documented by the medical team… .27 –.047 –.31 .285 –.31 .50 .04 –.15
In my Unit, the critical care team and the patient’s primary medical or surgical team agree on a plan of care .278 .016 –.34 .238 –.21 .497 .05 –.107
There are policies/guidelines to assist in the delivery of EOLC in my Unit .307 –.01 –.10 .258 –.106 .347 .32 –.04
The provision of EOLC requires emotional detachment .00 .218 .01 –.06 –.19 –.25 –.085 –.159
I have learnt from other nurses how to provide EOLC .201 .180 –.198 .215 .106 .241 .026 .030
274
Factor
1 2 3 4 5 6 7 8
I have received in-service education that assists me to support and communicate with families of dying patients .324 –.090 .040 .216 –.055 .318 .627 –.302
I have received in-service education that assists me to provide care and manage patient symptoms at the EOL .289 –.117 .076 .219 –.068 .272 .597 –.324
My postgraduate nursing education included EOLC content relevant to the critical care context .246 .068 –.019 .148 –.110 .109 .461 –.115
I draw on evidence from the literature to provide EOLC to patients and their families .131 .216 –.282 .064 –.149 –.019 .457 –.263
Patients at the EOL require little nursing care –.049 .275 –.156 –.179 –.203 –.174 .336 –.132
EOLC requires advanced nursing skills .120 .301 –.069 .035 –.028 .027 .308 –.143
My undergraduate nursing education included EOLC content .170 –.008 .076 .174 –.007 .064 .306 –.026
When withdrawing mechanical ventilation at the EOL, ventilator weaning should occur… –.004 .071 –.025 –.001 .019 –.102 .262 –.055
Intravenous fluids should be provided to maintain hydration for the patient at the EOL .073 .044 –.065 .095 –.123 .080 .243 –.087
I feel adequately prepared to care for patients at the EOL .183 .288 –.163 .101 –.042 .112 .182 –.704
I don’t know what to say to the family of a patient at the EOL .141 .258 –.090 .087 –.109 .001 .142 –.662
I have limited knowledge of symptom management for patient’s at the EOL .023 .227 –.017 –.016 .050 .027 .125 –.508
I feel a sense of personal failure when a patient dies .181 .253 –.174 –.065 –.168 –.029 –.018 –.371
Note. EOL = end of life; EOLC = end-of-life care.