The ‘tools’ necessary for weaving the Warp and Weft of spirituality in palliative care

Dr Wilfred McSherry Professor in Nursing, Department of Nursing, School of Health and Social Care, Staffordshire University, University Hospitals of North Midlands NHS Trust, England, United Kingdom, ST18 0YB

Part-time Professor VID University College (Haraldsplass) Bergen, Norway

30th May 2018

Objectives• Reflect upon practice situations exploring the ‘Warp and Weft’

of spirituality.

• Explore reasons why the religious, personal and spiritual

needs of individuals are overlooked.

• Highlighting the importance of this dimension for patient care.

• Offer some practice based tools for integrating spirituality

within palliative and end of life care.

A Quote• “I would probably rather tell you

about my sex life than about my

spiritual life. And I’m fairly sure

that you would be more

scandalised to find a bible at the

bottom of my briefcase than a

copy of the karma sutra.”

(Allen 1991pg 52)

Allen C 1991 The inner light.

Nursing Standard 5 (20): 52–53

What is your understanding of the concepts of spirituality and spiritual care?

I would like you to spend a few moments completing the Spirituality and Spiritual Care Rating Scale (SSCRS)

Please note you do not need to share this with anyone and it is for your own personal use – I am also going to ask you to complete this again at the end of the workshop to see if your understanding has changed?

Publication Seminal publication

McSherry, W., Draper, P.,

Kendrick, D. (2002) Construct

Validity of a Rating Scale

Designed to Assess

Spirituality and Spiritual Care.

International Journal of

Nursing Studies 39 (7) p723-

734

Spirituality and Spiritual CareRating Scale (SSCRS)

Australia 1

Bahamas 1

Botswana 1

Brazil 2

Canada 1

Colombia 2

Croatia 2

England 18

Greece 1

Hong Kong 4

Indonesia 8

Iran 3

Ireland 3

Italy 3

Jamaica 1

Japan 1

Jordan 1

Malaysia 4

Malta 2

New Zealand 1

Northern Ireland 1

Philippines 8

Portugal 4

Saudi Arabia 3

Scotland 5

Singapore 1

Slovakia 1

Slovenia 4

South Africa 3

South Korea 1

Sweden 1

Taiwan 4

Turkey 1

USA 70

Wales 1

Total 168

WHO Definition of Palliative Care

“Palliative care is an approach that improves the

quality of life of patients and their families facing

the problem associated with life-threatening

illness, through the prevention and relief of

suffering by means of early identification and

impeccable assessment and treatment of pain and

other problems, physical, psychosocial and

spiritual.”

http://www.who.int/cancer/palliative/definition/en/

The last 1000 days by Molly Case“These days slip away like coins into a slot.

I sit here; the person, the life, the woman that time forgot.

Caught between hospital bays and grey rooms that speak nothing of the life I’ve had.

“These days, these days, always in my memory;

Post Office and tea dance reverie. But recently, hazy as hospital wards become mazes,….

https://www.youtube.com/watch?v=HynytVepxZc

Challenges

Conceptual - Consideration must be given to how people define,

perceive and understand the nature of spirituality

Organisational - people, places and process are central to

understanding spirituality and the provision of ‘spiritual care’ and assessment.

Practical - the practical implications of assessing , planning,

evaluating an individuals spiritual needs

Ethical - the ethical issues and potential dilemmas that may be

encountered when supporting individuals with their spiritual needs

Tools necessary for weaving the

Warp and Weft?

What are the tools

you require to weave

the Warp and Weft of

spirituality in

palliative care?

A scenario

• Question to consider as I am reading:

• What is the model of care evident in the scenario

• Piles, C. 1990 Providing spiritual care Nurse Educator 15 (1) 36 – 41

Standard representation of

holistic care

SPIRITUALITY

Medical Model?

TRAUMA NURSING CARE MANIKIN, Clinical Training Model, medical model ,anatomical model

http://susan0540.en.hisupplier.com/product-291775-TRAUMA-NURSING-CARE-MANIKIN-Clinical-

Training-Model-medical-model-anatomical-model.html

Fenton’s and Mitchell’s (2002, p 21) definition:

“Dignity is a state of physical, emotional and spiritualcomfort, with each individual valued for his or heruniqueness and his or her individuality celebrated.Dignity is promoted when individuals are enabled to dothe best within their capabilities, exercise control, makechoices and feel involved in the decision-making thatunderpins their care.”

Fenton, E, Mitchell, T (2002) Growing old with dignity:

a concept analysis Nursing Practice 14 (4) 19 - 21

Something there?Hay writes:

“It is therefore of interest that in recent years a considerable body of evidence has been accumulating in both the physical and social sciences suggesting that our spiritual nature is real and not illusory. Or many of the people I have spoken with during my research put it ‘there is something’.

[he goes on to say]

… that spiritual awareness is a necessary part of our biology , whatever our religious belief or lack of them.”

2006 pp xi –xii

National care of the dying

audit for hospitals, England

Discussions between clinicians and

patients regarding spirituality in

end-of-life care only occurs in 15

per cent of cases, and in an

additional 27% of cases, people

important to the patient had these

discussions. This suggests that

only in 42% of cases the patient

and those important to them were

asked about their spiritual needs

https://www.rcplondon.ac.uk/projects/outputs/end-life-care-audit-dying-

hospital-national-report-england-2016

Why are we failing to recognise the Warp and Weft of spirituality?

• Misconceptions about them meaning of the concept

• Viewed or perceived synonymously with religion

• Fear of proselytising and reprisal

• Time, busy not enough staff, resources

• Lack of education and training?

• Secularisation of society and healthcare?

Exponential increase in published literature

CINHAL

Spirit*

1st recorded publication: Doherty RE; The professional Spirit American Journal of Nursing, 1937 Apr; 37: 369-72. ISSN: 0002-936X

Between 1937 – 2015 (20,284 results)

Percentage Increase

CINHAL

Spirit*

• 1937 – 1997 (when I completed my MPhil) = 2,437 results

• 1997 – 2015 = 18,256 = 731.39% increase

Literature reviews

• Ross (2006) referred to 45 articles between 1983 and 2005.

• Cockell and McSherry (2012) identified 143 papers, describing studies in 23 countries between 2006 -2010

• Patients were involved in the research described in just 63 of the studies; practitioners were involved in 80.

Cockell, M., McSherry, W. (2012) Spiritual care in nursing: an overview

of published international research Journal of Nursing Management 20,

958–969

Table of countries

Other evidence

Educational preparedness (RCN, 2010)

• 79.3% of nurses felt that nurses do not receive

sufficient education and training in spirituality

(McSherry, 1997 which found that 71.8%).

• 79.9% indicate that spirituality and spiritual care

should be addressed within programmes of

nurse education

Study from AustraliaThirty-one participants described using validated assessment tools. Twenty-four participants stated that they used the HOPE assessment tool while three participants followed Fitchett’s assessment of spiritual needs. The FICA Spiritual Assessment Tool and the Palliative Care Outcome Collaboration assessment tools were each used by one participant. (p 55)

However, 65% of staff agree that they do not receive sufficient education and training in spiritual and religious beliefs (n = 239). (p 57)

Austin, P., MacLeod, R., Siddall, P, McSherry, W and Egan, R (2017)

Spiritual care training is needed for clinical and non-clinical staff to

manage patients’ spiritual needs. Journal for the study of spirituality, 7

(1). 50 -3 http://dx.doi.org/10.1080/20440243.2017.1290031

Selman et al (2017 p 12)

Conclude:

“Our findings provide evidence that spiritual care is an essential but neglected component of care, according to patients and their caregivers across a range of countries. Participants described human connection, person-centredness and integration in healthcare as fundamental to spiritual care. While spiritual care specialists play important roles, including staff support, participants emphasised the importance of spiritual care competency across disciplines. The priorities identified here should be used to guide future spiritual care research and clinical and educational initiatives.”

Lucy Ellen Selman, Lisa Jane Brighton, Shane Sinclair, Ikali Karvinen, Richard Egan,

Peter Speck, Richard A Powell, Ewa Deskur-Smielecka, Myra Glajchen, Shelly Adler,

Christina Puchalski, Joy Hunter, Nancy Gikaara and Jonathon Hope; the InSpirit

Collaborative (2017) Patients’ and caregivers’ needs, experiences, preferences and

research priorities in spiritual care: A focus group study across nine countries

Palliative Medicine 1-15

Ross et al (2018 p 70)

“Our findings from a longitudinal multinational quantitative survey provide the first evidence that perceived spiritual care competency improved slightly but significantly over the course of our sample's studies and that a high sense of personal spirituality and a broad view of what spirituality/spiritual care were about were important factors in that improvement.”

Ross, L., McSherry, W.,Giske, T., van Leeuwene, R., Schep-Akkermane, A.,

Koslander, T., Hall, J., Østergaard Steenfeldth, V., Jarvis, P. (2018) Nursing and

midwifery students' perceptions of spirituality, spiritual care, and spiritual care

competency: A prospective, longitudinal, correlational

European study Nurse Education Today 67 (2018) 64–71

https://authors.elsevier.com/c/1X1jpxHa5G~Zr

Telegraph reports

Christian nurse sacked for offering to pray with patients was just showing 'compassion', tribunal hears

https://www.telegraph.co.uk/news/he

alth/news/4409168/Nurse-

suspended-for-offering-to-pray-for-

patients-recovery.htmlhttps://www.telegraph.co.uk/news/2017/03/30/ch

ristian-nurse-sacked-offering-pray-patients-just-

showing-compassion

Royal College of Nursing Survey

28) “I feel currently out of pressure of work nurses do not have enough time to

spend with their patients/clients to address spiritual issues. I also believe there is a

lot of cultural issues related to this and at times this creates a barrier. I also feel

there is no freedom of expression for fear of "imposing" one's view yet sometimes its

in sharing that someone would gain spiritually.”

1474) Given recent media coverage e.g. Caroline Petrie case, further guidance is

definitely needed

1914) I have been very disturbed by recent cases, eg Mrs Petrie. I have always

been open about my own faith, though not pushy, but have found it at times

appropriate to raise the topic with some patients at certain times. The Petrie case

disturbed me as I thought I also would be open to similar attack if someone decided

to pursue it.

Identifying the Warp and the Weft

Stoll’s (1987) The person’s spiritual interrelatedness (two dimensional model)

The vertical dimension (The Warp) ‘as do with the person’s transcendent (beyond and/outside self) relationship, the possibility of a person-relatedness to a higher being-God-not necessarily as defined by a particular religion

The horizontal facet reflects and fleshes out the supreme value experiences of one’s relationship with God through one’s beliefs, values, life-style, quality of life, and interactions with self, others and nature vertical

Stoll, R, I. (1989) The essence of spirituality, in Carson, V, B. (editor)

(1989) Spiritual dimensions of nursing practice, Philadelphia: W B

Saunders Company. Chapter 1 pages 6-8

A couple of useful guides

Definitions of spirituality-in-healthcare

Murray & Zentner (1989 p 259)

“A quality that goes beyond religious affiliation,that strives for inspirations, reverence, awe,meaning and purpose, even in those who do notbelieve in any good. The spiritual dimension triesto be in harmony with the universe, and strivesfor answers about the infinite, and comes intofocus when the person faces emotional stress,physical illness or death.”

McSherry (2009) Definition of Spirituality

Spirituality is universal, deeply personal and individual;

it goes beyond formal notions of ritual or religious

practice to encompass the unique capacity of each

individual. It is at the core and essence of who we are,

that spark which permeates the entire fabric of the

person and demands that we are all worthy of dignity

and respect. It transcends intellectual capability,

elevating the status of all of humanity.

McSherry, W. Smith, J (2012 p 118) Spiritual Care In McSherry, W.,

McSherry, R., Watson, R. (Eds) (2012) Care in Nursing Principles values

and skills Oxford University Press, Oxford

Puchalski et al 2014 p 646

After a robust and dynamic discussion

with several rounds of voting, agreement

was reached on the following definition

of spirituality:

‘‘Spirituality is a dynamic and intrinsic

aspect of humanity through which

persons seek ultimate meaning,

purpose, and transcendence, and

experience relationship to self, family,

others, community, society, nature, and

the significant or sacred. Spirituality is

expressed through beliefs, values,

traditions, and practices.’’

Puchalski, C, M., Vitillo, R., Hull, S, K., Reller, N. (2014) Improving the

Spiritual Dimension of Whole Person Care: Reaching National and

International Consensus, Journal of Palliative Medicine, 17(6): 642–656.

EAPC Task Force on Spiritual Care in Palliative Care

Spirituality is the dynamic dimension of human life that relates to the way persons (individual and community) experience, express and/or seek meaning, purpose and transcendence, and the way they connect to the moment, to self, to others, to nature, to the significant and/or the sacred.

The spiritual field is multidimensional:

1. Existential challenges (e.g. questions concerning identity, meaning, suffering and death, guilt and shame, reconciliation and forgiveness, freedom and responsibility, hope and despair, love and joy).

2. Value based considerations and attitudes (what is most important for each person, such as relations to oneself, family, friends, work, things nature, art and culture, ethics and morals, and life itself).

3. Religious considerations and foundations (faith, beliefs and practices, the relationship with God or the ultimate).

http://www.eapcnet.eu/Themes/ProjectsTaskForces/EAPCTaskForces/

SpiritualCareinPalliativeCare.aspx

Ireland’s own

“Spirituality is a way of being in the world in which

a person feels a sense of connectedness to self,

others, and/or a higher power or nature; a sense of

meaning in life; and transcendence beyond self,

everyday living, and suffering.”

Weathers, E., McCarthy, G., and Coffey, A (2016) Concept analysis

of spirituality: An evolutionary approach, Nursing Forum’, 51(2): 79-

96.

Distinguishing Religion and Spirituality

Adapted from (Koenig et al 2001 p 18)

• Community Focused Individualistic

• Observable measurable, objective Less visible and measurable,

more subjective

• Formal orthodox, organized Less formal, orthodox, less

systematic

• Behavior orientated, outward practices Emotionally orientated,

inward directed

• Authoritarian in terms of behavior Not authoritarian, little

accountability

• Doctrine separating good from evil Unifying, not doctrine

oriented

Religion Spiritual

Koenig H G., McCullough M E., Larson D B (2001) Handbook of

Religion and Health Oxford University Press Oxford

Dementia based-scenario

• I would like you read through this dementia based scenario:

• Then in pairs I would like you to identify the Warp and the Weft of spirituality in this situation?

Warp and Weft of spirituality?

Existentialism: the way individuals derive and find meaning, purpose and

fulfilment in life.

Relationship: the relationships that are significant to an individual’s sense

of identity, health and wellbeing – these could be relationships with family,

friends, the environment, community and creatures

Transcendence: a sense of something greater and beyond self this could

be God, deity, supreme being or Higher Power. It could also be aspects of

life that enable the individual to transcend themselves or situations.

Connection: the sense of connection individuals have within themselves,

with others, the environment and for some God or higher Power

Religiosity: for some people their spirituality and worldview is based upon

adherence to a specific religious teaching, doctrine and practice. These

inform and influence belief, attitudes, values and behaviours.

McSherry, W. (2016) Reintegrating spirituality and dignity in nursing and health

care: a relational model of practice In Tranvåg, O, Synnes, O, McSherry, W. (2016)

(Eds) Stories of Dignity within Healthcare: Research, narratives and theories, M&K

Publishing, Keswick. Chapter 6 pages 75 - 96

RCN (2010) Spirituality is about:

• Hope and strength

• Trust

• Meaning and purpose

• Forgiveness

• Belief and faith in self, others and for some this includes a

belief in a deity/higher power

• Peoples values

• Love and relationships

• Morality

• Creativity and self expression

Sheldrake (2014 p1)

“It seems that, as human beings, we are persistently driven by goals beyond mere material satisfaction to seek deeper level of meaning and fulfilment.”

Sheldrake (2014) 4 typologies (Types of spirituality)

Ascetical The mystical

The prophetical The practical

Spirituality

Sheldrake (2014) 4 typologies (Types of spirituality)

• Ascetical: liberation from material preoccupations and a deepened moral behaviour (p14. Discipline and non religious practice of meditation, mindfulness (p168)

• Mystical: a quest for an immediate consciousness of , or sense of a deep connection with, God or the ultimate depths of existence… way of ‘knowing’ that transcends purely rational analysis (p15)

• Practical: promotes the everyday world as the main context for following a spiritual path (pp15-16)

• Prophetic: while equally focused on the everyday world, goes beyond the practical service of our fellow humans in favour of social critique and commitment to social justice as a spiritual task. (p16) Finally the critical-prophetic ‘type’ is arguably detectable in some discussions of spirituality in relation to renewed vision of human care in the health professions…(p168).

For me spirituality is absent when:

• It devalues, diminishes the identity of the person, leading to a violation of their dignity

• Leads to an intentional destruction of human life, communities, societies, environments, natural world

• Ideologies that are divisive, oppressive, disempowering, promoting propaganda that lacks sensitivity and respect for equality diversity and fundamentally upholding of human rights

Palliative care setting

“When people are admitted on to the unit you are only going to get a certain amount of information. It could be that somebody comes in with pain so that’s you’re priority you’ve got to address that. They are not really going to want to talk about you know their philosophy of life and that when they are actually in excruciating pain. So you’ve got to be you know sort of realistic. But that can be built up over a time and things could be ongoing not just admission written in tablets of stone and that’s how it stays until they actually leave here in which you know which ever way! It’s an ongoing thing you know and that’s because patients will talk to certain people, where they won’t talk to others and that’s just personality.”

(Charge Nurse Palliative Care)

Identify patients spiritual needs

(RCN, 2010)

Method No %

Patient themselves 125 89.9

Relatives/friends 92 66.2

Nursing documentation 66 47.5

Other colleagues 43 30.9

Chaplain 45 32.4

Listening and observing 121 87.1

Sensing/hunch 64 46.0

Spiritual assessment tool 3 2.2

It is not the nurses role to identify

patients’ spiritual needs

6 4.3

Approaches to spiritual assessment

• Formal (active)

• Informal (passive)

Categorisation of approaches to

spiritual assessment

Direct method

Asking direct questions about the individuals religious or spiritual beliefs to elicit information about potential

spiritual need.

Indicator

Based

The indicator based model of spiritual assessment reflects the Spiritual Diagnosis – Spiritual Distress

approach to spirituality presented in the work of Carpenito (1983, p. 451) who identifies defining

characteristics that may indicate underlying spiritual distress, for example, expresses concern-anger,

resentment and fear over meaning of life, suffering, and death.

Audit Tools

Increasing numbers of institutions are attempting to assess the effectiveness of practitioners in providing

spiritual care. Many health care institutions are setting their own standards and actively monitoring and

auditing areas of religious and spiritual needs to establish if they have been addressed.

Value

Clarification

Likert type scales asking respondents to state the extent to which they agree or disagree with a particular

statement. These tools are quick to administer, providing the researcher with some quantifiable measure or

students with an insight into their own values and perceptions of the concepts being investigated.

Indirect

Methods

Observational methods are used by practitioners to gather information from a variety of sources to

establish the presence of a spiritual need. If observation is used, consensus must be reached concerning

who observes what signs are looked for, how these signs are interpreted and if/how they are documented.

Acronym

Based Models

These are models or frameworks that focus practitioners attention to specific areas associated with

spirituality or spiritual care for example PLAN (Highfield, 1993) FICA, (Puchalski and Romer, 2000) HOPE

(Anandarajah and Hight, 2001). These models are designed to be quick, flexible and incorporated within

the general assessment process.

Direct questioning (Stoll 1979)1. ‘Concept of God or Deity’

Examines theistic and to some degree religious elements

Examples of questions ‘Is religion or God significant to you?’ ‘Is prayer helpful to you?’

‘What happens when you pray?’

2. ‘Sources of Hope and Strength’

Investigates sources of support, particularly surrounding people and relationships

Examples of questions ‘Who is the most important person to you?’ ‘To whom do you turn when you need help?’

3. ‘Religious Practices’

Reviews the impact that an illness might have on the patient’s ability to maintain religious practices

Examples of questions ‘Do you feel that your faith (religion) is helpful to you?

‘Are there any religious practices that are important to you?’

4. ‘Relationship Between Spiritual Beliefs and Health’

Explores existential issues such as the patient’s concerns or visions for the future

Examples of questions ‘What has bothered you most about being sick (or in what is happening to you)?’ ‘What do you think is going to

happen to you?’

Indicator based

Spiritual/Religious Audit

AcronymNarayanasamy,1999, 2001 ASSET Model (Actioning spirituality and spiritual care education and training in

nursing) ACCESS Model:

A: Assessment

C: Communication

C: Cultural negotiation and compromise

E: Establishing respect and rapport

S: Sensitivity

S: Safety

Puchalski and Romer 2000 Acronym FICA

F: Faith or Beliefs

I: Importance and influence

C: Community

A: Address

Anandarajah and Hight 2001 Acronym HOPE

H: sources of hope, meaning, comfort, strength, peace, love and connection

O: Organised religion

P: Personal spirituality and practices

E: Effects on medical care and end-of-life issues

Your help – the 2QSAM

© Ross and McSherry 2017

‘What is important to you right now?’

and ‘How can we help?’

Let us know how you do:linda.ross@southwales.ac.uk

W.McSherry@staffs.ac.uk

Physical

Spiritual

Psychosocial

Hierarchy of support

Expressing

Listening

Presence

Religious/specialist

McSherry, W. (2007 p 232) The Meaning of Spirituality and Spiritual

Care within Nursing and Health Care Practice Quay Books, London

“We get treatment in the

hospital and care in the

hospice”

Treatment

Scientific

Proficient

Technical Competence

Detached

Robotic

Cold

Care or more precisely

caring

Warm

Time

Presence

Valued

Accepted

Recognise the person

The little things are the big things!

• In that sense, ‘the little things’ are the ‘big things’ and should receive increased focus in nurse education, practice settings and orgnizational management.

WILLIAMS V . , KINNEAR D. & VICTOR C. ( 2016) ‘It’s the little things

that count’: healthcare professionals’ views on delivering dignified care:

a qualitative study. Journal of Advanced Nursing 72(4), 782–790. doi:

10.1111/jan.12878

What are the little things:

• A introduction – hello my name is…

• A smile

• A warm word of welcome

• A how are you?

• A please and thank you?

It is our: demeanour, professionalism, openness, courtesy, respect, approach,

Clarke 2013 p 193

“Hopefully my inadequate voice will inspire others to take this vision and to develop ever more creative ways to explore the true relationship between spirituality and nursing – not only to develop spiritual care, because that would be a very limited goal, but rather to use the concept of making all care spiritual to develop and improve everything that nurses do.”

Clarke, J (2013) Spiritual Care in Everyday Nursing Practice A New

Approach, Palgrave Macmillan, London

ConclusionIf we are to be successful in recognizing the Warp and Weft of

spirituality then:

•We must be aware of the Warp and Weft of spirituality within

our own lives

•Acknowledge this is a multidimensional, subjective and

complex concept yet central to the lives and identity of many

people

•This dimension focuses our attention on the individual, the

person, not just the medical condition or treatment

Enhancing Nurses Competence in Providing Spiritual Care through

Innovative Education and Compassionate Care

Coming together from across Europe to shape the future of spiritual care education and to enhance compassionate care

Erasmus+ KA2 Grant Agreement Number: 2016-1-UK01-KA203-024467

www.epicc-project.eu

Countries represented

Erasmus+ KA2 Grant Agreement Number: 2016-1-UK01-KA203-024467

• UK: England, Scotland, Wales, (Northern Ireland) • Croatia• Norway• Netherlands• Poland• Turkey• Ireland• Malta• Denmark• Germany• Belgium• Ukraine• Greece• Columbia• Thailand• New Zealand

What are we trying achieve

Three named outputs:

O1 - Establishing and sustaining the EPICC project – lunching the EPICC Network

O2 Developing a Gold Standard Matrix for Spiritual Care Education and Adoption Toolkit

O3 Refining and disseminating the Gold Standard Matrix for Spiritual Care Education and Adoption Toolkit

Erasmus+ KA2 Grant Agreement Number: 2016-1-UK01-KA203-

024467