Providing a “Good Death” for Oncology Patients During the...

NCI200171_Layout 1 301011 1033 AM Page 379

AACN Advanced Critical Care Volume 22 Number 4 pp 379ndash396

copy 2011 AACN

Providing a ldquoGood Deathrdquo for Oncology Patients During the Final Hours of Life in the Intensive Care Unit Caitlin W Brennan RN MSN PhD

Maryjo Prince-Paul PhD APRN ACHPN

Clareen A Wiencek PhD ACNP-BC ACHPN

ABSTRACT

Cancer is a leading cause of death in the United States Aggressiveness of cancer care continues to rise in parallel with scientific discoveries in the treatment of a variety of malignancies As a result patients with cancer often require care in intensive care units (ICUs) Although growth in hospice and palliative care programs has occurred nationwide access to these programs varies by geographic region and hospital type Thus critical care nurses may be caring for patients with cancer during the

Although overall cancer-related death rates have steadily declined since 1992 cancer

remains the second cause of death after heart disease and accounts for approximately 1 of every 4 deaths in the United States1 Evidence from Medicare data demonstrates that aggres-siveness of cancer care continues to rise with an increase in the proportion of patients receiv-ing chemotherapy within 14 days of death and delays in hospice admissions2 The Medicare Hospice Benefit aims to provide health care coverage for persons whose survival is pre-dicted to be less than 6 months but the median length of stay in hospice has remained consis-tent at approximately 20 days for the last 3 years3 Data from 6 states revealed that 33 of intensive care unit (ICU) deaths were patients with metastatic cancer4 In addition in a study of 342 patient and caregiver dyads Wright and colleagues5 found that patients with advanced cancer who die in the hospital or ICU have

final hours of life in the ICU without the support of palliative care experts This article provides an overview of the meaning of the final hours of life for cancer patients and uses principles of a ldquogood deathrdquo and the tenets of hospice care to organize recommendations for critical care nurses for pro-viding high quality end-of-life care to patients with cancer in the ICU Keywords ldquogood deathrdquo hospice intensive care unit oncology

informal caregivers are at increased risk for psychiatric illness compared with patients who die at home or with hospice services According to its authors this study was the first to demon-strate that experiencing the death of a loved one with cancer in an ICU setting can lead to symptoms of posttraumatic stress disorder The

Caitlin W Brennan is Postdoctoral Fellow Veterans Affairs National Quality Scholars Program Louis Stokes Cleveland Veterans Affairs Medical Center Frances Payne Bolton School of Nursing Case Western Reserve University and Veterans Affairs Boston Healthcare System 150 S Huntington Ave (152M) Boston MA 02130 (cww2caseedu)

Maryjo Prince-Paul is Assistant Professor Frances Payne Bolton School of Nursing Case Western Reserve University and APRN Research Associate Hospice of the Western Reserve Inc Cleveland Ohio

Clareen A Wiencek is Nurse Manager The Thomas Palliative Care Unit Massey Cancer Center Virginia Commonwealth University Medical Center Richmond Virginia

lower quality of life (QOL) ratings and their DOI 101097NCI0b013e31823100dc

379

Copyright copy 2011 American Association of Critical-Care Nurses Unauthorized reproduction of this article is prohibited


BRENNAN ET AL AACN

critical care nurse cares for critically ill patients with cancer and their families during a time when these trends are converging and resources may be limited for providing quality end-of-life (EOL) care

One potential strategy for improving EOL care in the ICU is to integrate palliative care more fully or earlier in the ICU course Pallia-tive care focuses on effective pain and symptom management and incorporation of psychoso-cial and spiritual needs into the patient and familyrsquos plan of care with the goal of prevent-ing and relieving suffering for patients with life-threatening or debilitating illnesses regard-less of the stage of disease6 Efforts to integrate palliative care into ICU care include providing ICU clinicians with training through the End-of-Life Nursing Education Consortium and Education for Physicians on End-of-Life Care and access to a hospital-based palliative care consult service78 The Improving Palliative Care in the ICU Project recently published a review of the 2 main models of providing pal-liative care in the ICU9 The consultative model consists of palliative care consultants who provide recommendations for caring for patients in the ICU whereas the integrative model involves embedding palliative care prin-ciples into daily practices of the ICU team9

Although integration of palliative care has the potential to reduce the number of patients with cancer dying in the ICU much of the growth in palliative care programs has occurred in large academic medical centers and critical care nurses who work in smaller for-profit or community hospitals may not have access to palliative care programs10

Although palliative care programs have grown tremendously in the past decade with increas-ing evidence of their effectiveness in improving quality and length of life11 many patients with cancer are not being managed by palliative care experts at the EOL Experienced critical care nurses need the knowledge and skills to provide quality EOL care for patients with cancer and to preserve a good memory of the final hours for family members

The aim of this article is to provide guid-ance to nurses who are caring for oncology patients and their families during the final hours of life in the ICU setting using the tenets of a ldquogood deathrdquo described by Kehl as an organizing framework for recommendations12

These tenets are derived from Kehlrsquos extensive review of the literature but there is individual

variation among patients and families with regard to what a ldquogood deathrdquo entails based on their respective goals values and customs This article will also review the context and meaning of EOL in the oncology population and discuss common barriers to providing a ldquogood deathrdquo in the ICU In addition this article aims to summarize the principles of hospice care and provide recommendations for addressing spiritual existential psychoso-cial and physical needs at EOL facilitating communication fostering positive coping for family members and health care providers and promoting system change Lastly specific interventions that critical care nurses can implement will be listed in accordance with current guidelines for providing EOL care in the ICU

Conceptual Framework Kehlrsquos12 concept analysis of a ldquogood deathrdquo serves as the guiding framework for this arti-cle Kehlrsquos extensive review of the literature identified the following attributes of a ldquogood deathrdquo being in control being comfortable having a sense of closure having trust in care providers recognizing the impending death and leaving a legacy Kehl also specified the importance of minimizing burden optimizing relationships affirmingrecognizing the value of the dying person honoring beliefs and val-ues caring for family and acknowledging the level of appropriateness of the death (eg whether the dying person is young or the death is unexpected) Kehl also presented elements of each attribute that are important to take into consideration when caring for the dying patient

Context and Meaning of EOL Care in the Oncology Population There is no empirical evidence that EOL care needs are different in the oncology popula-tion than in patients with other terminal diagnoses However there are important characteristics specific to the context and meaning of the transition from curative care to EOL care in the oncology population These characteristics include the societal and family expectations of cure use of metaphors that liken cancer to a battle providersrsquo discomfort with prognostication and EOL discussions and the existence of well-formed often long-standing relationships with oncology providers Each characteristic is described here with the

380 Copyright copy 2011 American Association of Critical-Care Nurses Unauthorized reproduction of this article is prohibited


VOLUME 22 NUMBER 4 OCTOBERndashDECEMBER 2011 ldquoGOOD DEATHrdquo FOR ONCOLOGY PATIENTS

goal of increasing critical care nursesrsquo awareness and understanding of how the context and meaning of EOL care may affect the final hours of life for oncology patients and their families

Expectations of Cure More often than not cure is the main goal and expectation of patients families oncolo-gists and other clinicians and society as a whole when a person is diagnosed with can-cer Even in the setting of advanced disease scientific advancements in the treatment of cancer such as the discovery of monoclonal antibodies immunotherapies and other oral chemotherapy agents have created a norm in which there is almost always another treat-ment or combination of treatments to offer the patient with cancer The reader is referred to the companion article in this symposium by Beatty and colleagues13 for a full discussion of the biologic basis of current cancer treat-ments Although the goal of treatment may have shifted to control or stabilization of the disease many patients perceive all treatments as cure directed Although the ideal is simulta-neous disease treatment and palliative care from the time of diagnosis the concept of needing to transition away from cancer treat-ment to focus on more palliative-oriented goals such as comfort aggressive pain man-agement or a peaceful death at home may seem like ldquogiving uprdquo to many patients with cancer

Continued clinical research and scientific development toward finding a cure for cancer provides opportunities for patients to partici-pate in clinical trials Sulmasy and colleagues14

conducted a qualitative study of 45 patients that investigated patientsrsquo reasons for enrolling in an early-phase clinical trial for cancer and they found that patients described optimism and hopemdashbut also societal provider and family expectations to maintain hopemdashas main drivers of their decision to enroll in clinical trials and thus not to ldquogive uprdquo hope Sulmasy et al also described the language patients used that likened cancer treatment to being in a battle or a fight and that not enrolling in a clinical trial was equated to losing the battle or giving in to the fight Similarly altruism played a role in patientsrsquo decisions to enroll in clinical trials such that ldquoindividual battles are part of a greater battle by society against cancerrdquo14(p3709)

Cancer as a Battle Thus there is a sense from patients with cancer that not accepting treatment is congruent with giving up hope and optimism in their fight against the disease as well as giving up on their familyrsquos and societyrsquos expectations that they will ldquosoldier onrdquo The metaphor of cancer as a battle has strong implications for the patient with cancer who may be facing the reality that not only is there not a cure but that death may be imminent The decision to stop treatment may be shocking to patients and families given the perception that there is always another treatment to consider When the goals of care shift from cure to control and then to comfort there may be a sense that all hope is lost and that cancer has won the battle In the face of an illness crisis requiring critical care support there is often very little time for patients and families to transition from a curative treatment mind-set to newly adjusted goals and expectations that focus more on comfort life closure minimization of suffering and a ldquogoodrdquo or peaceful death The ICU setting and the critical care nurse may be ill-equipped to meet the needs of patients and families during this rapid transition in goals15

Prognostication and EOL Discussions Prognostication and EOL discussions take a great deal of time and skill to master With-out proper training and practice providers often struggle with having prognosis and EOL discussions and may avoid them as a result In a review by Campbell and colleagues16 the authors reported that there is often a discon-nect between the cancer patientrsquos desire for complete disclosure about prognosis and the oncologistrsquos comfort with fully communicat-ing the terminal nature of the patientrsquos dis-ease Thus cancer patients whose final hours are spent in the ICU may not be fully pre-pared or have adequate time to accept that their disease is terminal Chaitin and col-leagues17 note that oncologistsrsquo prognoses are often inaccurate and tend to be overly opti-mistic Because of this the oncologists who were surveyed generally preferred not to dis-close their estimates on prognosis They reported that they were not confident in their prognostication abilities and viewed that maintaining hope was more important than providing less-than-accurate prognostic data There is evidence of a similar trend in ICU physicians17



BRENNAN ET AL AACN

Mack and colleagues18 sought to measure the collaborative bond between oncologists and patients with cancer and found no evi-dence that EOL discussions diminished the bond Oncologists who had close bonds with patients were as likely as those without close bonds to engage in EOL discussions18 In addi-tion the authors reported greater existential well-being and emotional acceptance of termi-nal illness in patients who had a strong bond with their oncologist18 This evidence can be used to encourage oncologists to seek out training in prognostication and to collaborate with palliative care providers including nurses social workers and spiritual care providers to ensure that prognosis and EOL discussions occur on an ongoing basis with patients and their families As providersrsquo com-fort and training with these discussions increase patients and families will potentially be better equipped to incorporate this infor-mation into decisions about care and the number of patients with cancer dying in the ICU may decrease Until then awareness of both the complex nature of societal pressure to fight the battle of cancer and the skill level necessary for having effective prognosis and EOL discussions will help acute and critical care nurses better understand the context and meaning of EOL needs of oncology patients dying in the ICU as well as the needs of these patientsrsquo families

Relationships With Oncology Providers The last component of care that is important to consider for oncology patients at the EOL is their relationships with oncology providers including physicians nurses social workers patient care assistants and chaplains Critical care nurses should be aware of the bond between patients and their oncology providers especially if the bond is close and EOL discus-sions have taken place Moving a patient from an oncology unit to an ICU interrupts these relationships For example clinicians who have spent a great deal of time caring for the patient on the oncology unit and therefore may have the greatest understanding of the patientrsquos values wishes and needs are no longer involved in caring for the patient in the ICU17 When a patient is moved from the oncology unit to the ICU getting to know new clinicians routines and practices and learn-ing to trust an entire new team of providers

while coping with a crisis in health status can be confusing and difficult especially if there is conflict between the oncology and ICU teams about goals of care17 Patients and their fami-lies will likely benefit from continued contact with their oncology providers The reader is referred to a companion article19 in this sympo-sium that addresses the care of the patient receiving a hematopoietic stem cell transplant and the importance of collaboration between the oncology and ICU teams when the patient is critically ill

In the absence of strong evidence about best practices for facilitating interactions between oncology and ICU teams interventions that critical care nurses can use to help patients and families maintain relationships with their oncology providers include ensuring their pres-ence at family meetings and calling the oncol-ogy teams with regular updates of the patientrsquos status during the ICU stay

Barriers to Providing EOL Care in the ICU Some of the barriers to providing EOL care in the ICU setting include the mission culture and goal of the ICU the physical environment of the ICU and competing priorities for nursesrsquo time The mission of ICU care is to help patients survive a life-threatening event while preserving or restoring QOL20 Thus death and ICU care seem by definition mutually exclu-sive However ICU admission often occurs as a therapeutic trial and requires a change in goals from restorative care to EOL care when that trial fails20 When this occurs the oncology patient and family in the ICU may be faced with the realities that cancer-specific treatment is no longer viable and that the problem for which the patient was admitted to the ICU is neither reversible nor survivable

The ICU culture is influenced in part by the death-denying paradigm that exists in Western culture which can make an ICU death extremely challenging for patients and fami-lies especially when combined with cliniciansrsquo discomfort with prognostication2021 Cook and colleagues22 succinctly summarized the mod-ern American attitude toward death as being death denying ldquoconsumeristrdquo or focused heavily on demand for all that health care technology offers and rife with providersrsquo desire for heroism and thus prohibitive of con-versations about death and dying Rather than




viewing death as natural inevitable expected and perhaps imminent the goal in the ICU is to prevent or delay death in every way22

ICU care for critically ill cancer patients usu-ally focuses on a goal of correcting or reversing a life-threatening event thus broader goals of care may become a lower priority17 Typically ICU care is aimed at using technology to its fullestmdashor ldquodoingrdquomdashto achieve physiologic goals and stability rather than focusing holisti-cally on the patientrsquos and familyrsquos goals and preferences23 Therefore making the transition from ldquodoingrdquo for the patient to ldquobeingrdquo with the dying cancer patient and his or her family can be a challenge for the critical care nurse

The open physical layout of most ICUs though optimal for close monitoring of criti-cally ill patients and quick access and reac-tion to emergent events is certainly less than optimal for a quiet and peaceful death Criti-cal care nurses must understand this high-tech low-touch setting and modify it to the extent possible for the final hours of life of critically ill patients with cancer and their families The life-saving technology in the ICU creates a noisy environment with alarms intense lighting fast-paced move-ments between and among patients and ver-bal communication among clinicians that may be distressing In addition restrictive visiting hours lack of space and less privacy are challenging environmental factors in the ICU24 An encouraging trend is adoption of more liberal ICU visiting hours as recom-mended by accrediting bodies such as The Joint Commission25

Lastly competing priorities for critical care nursesrsquo time create a barrier to EOL care in the ICU A survey of 1400 critical care nurses iden-tified several barriers to providing EOL care in the ICU including having family members con-tinually call the nurse for updates which stopped the nurse from providing direct care family members not understanding what life-saving measures really meant and nursesrsquo per-ceptions that physicians involved in caring for patients often disagreed about the goals of care26 Another survey of nurses yielded similar results with the addition of time constraints lack of adequate staff and the perspective that the dying patient is lower priority and is often assigned to a travel nurse or float nurse rather than being assigned 1-on-1 with a nurse who is highly skilled in providing EOL care21

Recommendations for Providing a ldquoGood Deathrdquo in the ICU Despite these barriers critical care nurses play an integral role in helping cancer patients and families find closure and peace during the final hours of life Nursing interventions during the final hours of life must optimize the time the patient has left and minimize distress to family members24 The remainder of this article aims to serve as a guide for critical care nurses for providing a ldquogood deathrdquo for oncology patients and their families in the ICU Recom-mendations for doing so are organized by the following categories tenets of hospice care creating sacred spaces spiritualexistential care communication and psychosocial care physical care after death care and system changequality improvement (QI) Table 1 lists recommended nurse-led interventions organ-ized according to Kehlrsquos attributes and ele-ments of a good death and the corresponding recommendations from the American College of Critical Care Medicinersquos consensus state-ment for quality EOL care in the ICU20

Tenets of Hospice Care The fundamental tenets of hospice care include an interprofessional approach whole person care and attention to the biopsychoso-cial and spiritual needs of the patient and fam-ily all of which can be achieved in the ICU setting Critical conversations and family dis-cussions outlining and establishing goals of care are the cornerstone of care delivery as oncology patients live their final hours in the ICU setting40 The goal of this care delivery is not to prolong life or hasten death but to maximize QOL and promote a dignified death By attending to physical symptoms spiritual needs psychological concerns and communication issues critical care nurses can extend these underlying core principles of hos-pice care into the ICU setting and apply them to the patient and family experience

Another distinguishing characteristic of the hospice care delivery model is formal ongoing bereavement support Unfortunately this serv-ice is not usually offered in the ICU setting unless a patient has been officially enrolled in a hospice benefit As hospice care is patient-and family-centered care this benefit allows surviving family members to receive formal bereavement follow-up for 1 year after the



BRENNAN ET AL AACN

Table 1 Recommendations for Nurse-Led Interventions Organized by Kehlrsquos Attributes of a Good Death and American College of Critical Care Medicine Guidelines

Attributes and Elements of a

ldquoGood Deathrdquo (based on

patientsrsquo familiesrsquo and

providersrsquo perceptions)12

Being in control

Choiceswishes honored and communicated

Clear decision making

Option for suicide euthanasia

Control over death (location timing presence or absence of others)

Being comfortable

Lack of distress

Symptom management (physical pain dyspnea emotionalpsychosocial fear anxiety cognitive remaining mentally alert spiritual distress)

Comforting (hugging)

Hope

Managed to degree that patient wishes

Assess symptoms through family members29

When possible assess pain through use of the Behavioral Pain Scale or the Pain Assessment Behavior Scale

Assess dyspnea via behavioral correlates such as tachypnea tachycardia accessory muscle use diaphragmatic breathing nasal flaring and fearful facial expression

Use opioids the recommended drug of choice to treat pain and dyspnea in the dying patient

See work by Truog and colleagues20

for full description of symptom assessment and treatment at end of life

Convey to the family that priority has moved from hemodynamic stability to goal of comfort and dignity

Conduct symptom assessments at least every 1 to 2 hours

Advocate for adequate symptom management according to patientrsquos and familyrsquos preferences

Minimize stimulation by dimming lights moving the patient to a bed away from the nursesrsquo station removing unnecessary equipment and lines

Reassure family that the goal of morphine use is for symptom management and that vigilant symptom assessment and appropriate titration will occur to minimize risk of hastening death30

Sense of closure

Saying goodbye

Completion of unfinished business (work family events funeral arrange -ments financial legal affairs in order)

Preparation for death

Communication of words of healing and affirmation31-34

American College of Critical

Care Medicine Guideline20

Initiate ongoing direct communication at bedside andor in formal family meetings during which clinicians increase proportion of time listening to patient and family

Obtain clarity on goals of care by asking what the patientfamily is hoping to achieve

Provide prognosis information

Discuss which goals are realistic to achieve and which interventions will help achieve them

Communicate openly with family about timing of death by using language that demonstrates ldquohoping for the best preparing for the worstrdquo

Be compassionate by honoring familyrsquos hopes while also preparing them for possibility of death

Critical Care NursendashLed

Interventions

Coordinate family meeting

Option for assisted suicide is legal in Oregon and Washington and requires that the patient has ability to take the medication2728

Coordinate with social worker regarding patientrsquos and familyrsquos needs

Educate patient and family on what to expect during the final hours

Remind family that hearing remains present longer than other senses and encourage them to continue talking to or reading to the patient and playing music if preferred24(p636)

(continued)




Table 1 Recommendations for Nurse-Led Interventions Organized by Kehlrsquos Attributes of a Good Death and American College of Critical Care Medicine Guidelines (Continued)



patientsrsquo familiesrsquo and American College of Critical Critical Care NursendashLed

providersrsquo perceptions)12 Care Medicine Guideline20 Interventions

Affirmation or value of dying Attempt to understand who the Assess patientrsquos needs from a person recognized patient is as a person holistic perspective

Dignity Tailor interventions accordingly

Being a whole person with Assess for rituals before final physical emotional social spiritual needs

hours to prepare for patientrsquos individual preferences

Quality of life living fully

Individuality

Living until one dies

Trust in care providers

Access to care

Good communication among providers and with family

Care providers are those who know patient well serve as patient advocates and are nonjudgmental about patientfamily decisions

Conduct regular interprofessional team rounds

Prepare with interprofessional team members in advance of family meetings

Consult palliative care and ethics teams as needed

Promote an ICU culture that supports principles of effective communication

Communicate with oncology team and PCP upon patientrsquos admission to ICU

Invite oncology team to family meetings

Provide updates to other providers as needed throughout ICU stay and during final hours

Contact oncology providers and PCP upon death

Focus on appropriate word choice and use layperson terms eg

Recognition of impending death

Awareness ldquobreathing pattern near deathrdquo rather than ldquoagonal Acceptance respirationsrdquo20(p956)

Be present and available to the family after withdrawal of life-sustaining treatments

Explain that exact time of death is difficult to predict but that symptoms will be controlled and death typically occurs within minutes to hours after withdrawal of mechanical ventilation3536

Beliefs and values honored

Honoring beliefs values practices of personal cultural spiritual nature

Desires different from domi-nant culture are honored

Ask about the patient and familyrsquos spiritual beliefs and needs

Make an effort to distinguish between spirituality and religion

Remember that spiritual assessment is not the sole responsibility of chaplains but rather all critical care clinicians

Elicit patient and familyrsquos values cultural practices

Work to assist family in carrying out any practices they wish to conduct at the bedside

Verbally recognize that patients and families experience the final hours in their own unique way and form their own unique meaning from the experience24(p630)

(continued)



BRENNAN ET AL AACN






Burden minimized Listen to and value family input Arrange for a companion or sitter to be with the confused or restless

Minimizing burden on family Support familyrsquos emotions patient to give family a break

Freedom from financial burden Explicitly recognize and directly Encourage family to rotate visitation

support familyrsquos decisions Independence on part of and take breaks to eat and sleep patient

Relationships optimized Recognize that some family members Encourage family to maximize time may wish to be present during with patient especially ifwhen

Having enough time and resuscitation invasive procedures the patient is lucid24(p636)

communication with or withdrawal of them family and friends Discuss turning off sedative

Provide a quiet space free from medications to promote increaseReconciliation technology and alarms in patientrsquos level of consciousness

Forgiveness gratitude if aligned with goals of care37

and love33

Good social support from family friends and community

Appropriateness of death Make an effort to communicate that Be aware of the level of ldquoappropriate-life-sustaining treatments may be nessrdquo of the death such as the age of

Age withdrawn but care itself is not the patient length of time since

Terminal disease state being withdrawn and the patient diagnosis and whether the patient and family will not be abandoned and family were aware of the terminal

Appropriate use of nature of the cancer diagnosis technology and medical Continue to discuss whether specific

interventions treatments and drugs will Focus on benefitburden and goals contribute to or take away from of care when making decisions the goal of comfort about interventions

Discuss the meaning of the circumstances around the patientrsquos death with family members Ask family to tell the story of the patientrsquos illness if they are willing

Provide empathy and emotional support

Leaving a legacy Create ldquoget to know yourdquo posters on the unita

Being remembered and contributing to others Use materials such as hand molds especially for elders journals quilts and music to

facilitate leaving a legacy Leaving behind emotional

physical financial or Arrange for the music therapist to social legacy assist with making a CD of the

patientrsquos favorite music

Honor patients after they die by observing a moment of silence or reading a prayer or poem together

(continued)









Family care

Family choose level of involvement in care of dying person and in death

Family as care recipients

Preparation of family for death



Recognize that a large proportion of ICU patients are unable to make their own decisions because of illness or sedation

Ensure that shared decision making occurs among clinicians and family members andor health-care proxy guardian or hospital ethics committee


Interventions

Elicit family membersrsquo preferences for being present for withdrawal of technology such as mechanical ventilation and for the actual death

Ask family members if they would like to be involved in the physical care of their loved one (washing face turning and repositioning etc) and whether they would like to bring personal items from home (blankets toiletries etc)38

Provide privacy but remain in visual contact so that family can ask questions as needed39

Focus on symptom management promote comfort and provide a peaceful environment which may help family members perceive the death as a good one38

Offer for family members to lie with or hold their loved one in bed

aCreating ldquoget to know you postersrdquo may include asking the patientrsquos family to bring in photos artwork poetry or other artifacts important to the patient These posters are an opportunity for the staff to get to know the patient and what is important to him or her

Abbreviations ICU intensive care unit PCP primary care provider

death of the loved one Therefore the ICU team should pay particular attention to the anticipatory grief needs of the family members andor family unit to ensure proper referral for grief and bereavement support resources

Creating Sacred Spaces A good death is a sacred act41 When goals of care shift from one of aggressive treatments to more comfort-oriented care a shift of environ-mental space is also warranted Hospice care is usually provided in patientsrsquo homes or in another home-like setting such as a nursing home or residential hospice A striking con-trast exists between the characteristics of these home-like environments and those of the high technology environment of the ICU When it is not possible or there is not enough time to transfer a patient out of the ICU critical care nurses must know how to create a calm

peaceful more home-like environment within the ICU setting

However this can be very challenging due to space limitations and lack of open access to the ICU Nurses play a central role in helping to create this space Following are suggestions that may allow for a home-like environment in the ICU setting moving the bed to the area of the unit farthest away from high traffic areas reassuring the family that the relocation does not mean abandonment but rather privacy and comfort dimming lights and playing the patientrsquos favorite music or involving a music therapist from the hospital to play a favorite instrument displaying pictures of special memories or people in the patientrsquos life and encouraging the family and significant others to share important messages in a calm thera-peutic tone of voice In turn this environment may set the tone for health care providers to



BRENNAN ET AL AACN

increase their skills in recognizing patient and family concerns as well as to communicate effectively By creating this space it allows our own humanity to touch the humanity of another42

SpiritualExistential Care Researchers across the country have begun to understand the influence of spirituality on health-related outcomes and how spiritual and religious needs influence care decisions in seri-ous illness Phelps and colleagues43 interviewed 345 advanced cancer patients over 6 years in 7 tertiary care centers representing multiple geographical locations within the United States This study known as the ldquoCoping With Cancer Studyrdquo sought to determine the sup-port of spiritual needs by the medical system and the religious community the relationship between spiritual support and QOL and the relationship of religiousness and spirituality to treatment preferences at the EOL Spiritual needs of these patients were minimally or not at all supported by both the religious commu-nity and the medical system (47 and 72 respectively) and higher levels of religiousness were associated with wanting all measures to extend life particularly in the African Ameri-can and Hispanic populations

Lower rates of advanced care planning among minority patients may arise in part from spiritual appraisals of illness and healing for example the belief that there will be a divine miracle and that only God knows onersquos time to die To better understand this phenomenon Balboni and colleagues44 observed the earlier-referenced patients until their death They con-cluded that patients whose spiritual needs were largely or completely supported by the medical and spiritual community received more hospice care and had higher QOL scores near death In fact high religious coping or patients whose spiritual needs were largely or completely sup-ported were more likely to receive hospice level of care and less likely to receive aggressive and life-prolonging care than patients whose spiritual needs were not supported

Although there has been a growing body of literature as well as attention from the press about the role of spirituality in health care these data have illuminated the critical need to address an area of human care that is often neglected and simply ignoredmdashthe gap between the provision of spiritual care from the community and the provision of medical care

to patients with serious illness Unfortunately there are critical issues concerning who should deliver the care the role of the health care provider and the appropriate application of spiritual care in advanced illness A 2009 white paper45 ldquoImproving the Quality of Spiritual Care as a Dimension of Palliative Care The Report of the Consensus Conferencerdquo attempted to address these issues The premise of the article was that spiritual care is a fundamental compo-nent of quality palliative care and that providing spiritual care is within the purview of everyone involved in the care of the patient with serious ill-ness and his or her family In addition to collabo-rating with spiritual care providers and chaplains ICU nurses caring for patients during the final hours of life are encouraged to use this white paper as a resource for providing spiritual care at the EOL

Communication and Psychosocial Care Because nurses are present at the bedside 24 hours a day they need expert communication skills compassionate presence and therapeutic listening to develop relational bonds with the patient and family Berry and Griffie24(p630)

describe 4 characteristics of the nursersquos approach to patients and families that are essential to pro-viding care during the final hours empathy or putting oneself in the otherrsquos place and setting aside onersquos own biases unconditional positive regard or nonjudgmental acceptance and respect genuineness or being real trustworthy and open rather than using a professional faccedilade as well as admitting to onersquos own limita-tions and inability to have all the answers and attention to detail which includes critical think-ing avoiding making assumptions and being aware of how onersquos actions and words will be interpreted by others Nurse-led interventions during the final hours should be centered on communication that incorporates these 4 char-acteristics Specific areas of communication that are important to consider during the final hours are described below and include a shift from ldquodoingrdquo to ldquobeingrdquo family dynamics responses to familyrsquos questions and continuous goals of care discussions

During the final hours critical care nurses need to shift from a mind-set of ldquodoingrdquo to a mind-set of ldquobeingrdquo to meet the EOL care needs of patients23 A first step in making this shift that may be helpful is to conduct a self-reflection on onersquos own comfort level with contemplating and discussing death and onersquos




Table 2 Responses to Family Questions

Questions

When will my family member die

Is my family member thirstyhungry Is heshe going to starve to death

Is the oxygen necessary

My family memberrsquos breathing is loud and gurgling Is it painful Is he or she choking

Can you just give my family member something to ldquoend itrdquo

Will giving my family member morphine hasten his or her death

My family member seems to be improving today compared with yesterday Does this mean heshe is getting better

My grandfather died of cancer years ago and it was horrible to watch him suffer Will my grandmother also die like that

Recommended Responses

It is difficult to predict exactly when a person will take his or her last breath We encourage people to call any loved ones who would like to see the patient and to say a final goodbye when they leave in case their loved one dies before they return to the hospital Sometimes patients wait for specific family or friends to visit or sometimes wait for everyone to leave

We know from research that patients often stop eating and drinking as part of the natural process as they near death24

We also know that providing artificial nutrition and intravenous fluids may cause discomfort24 We do provide food and water orally for comfort if the patient is awake enough to do so and asks for it or if we think it will improve comfort24 The cause of death will be the natural course of disease not dehydration or starvation

It is important to discuss the benefit versus the burden that the oxygen is posing to your family member at this time If you think your family member is more comfortable with the oxygen on we can keep it on but it may not be necessary to keep it in place at this point especially if it is causing your family member discomfort

This congestion is normal at the end of life We can elevate the head of the bed do some gentle suctioning of the mouth and administer a drug that will help dry up some of the secretions48 This symptom tends to be more uncomfortable to us as observers than to the patient48

Legally and ethically I am unable to do this But what I can do with the rest of the interprofessional team is work to relieve your loved onersquos pain and suffering and to help himher die comfortably and with dignity

When we administer pain medications and other therapies our intent is to relieve unnecessary suffering pain and other symptomsmdashnot to hasten death3739

As your family member continues to take in less fluid we expect the swelling to go down in hisher body especially around any tumors heshe has and in the lungsmdashheshe therefore breathes a little more easily and hisher pain decreases24 These are temporary improvements that we expect and we encourage you to spend time with your loved one during this time of relief of symptoms24

We will do everything we can to make your grand-mother comfortable and we have a variety of medica -tions and techniques available to help relieve her pain We will check on your grandmother frequently to ensure that she is comfortable If you perceive that your family member is experiencing discomfort please let me know and we will work to provide her with relief38



BRENNAN ET AL AACN

own acceptance of the inevitable nature of death46 By directly facing the uncertainties and discomforts of dealing with death clini-cians are better equipped to engage in honest direct conversations with patients and families at the EOL and thereby provide compassion-ate respectful and effective care46

Family Dynamics ldquoFamilyrdquo should be thought of in broad terms as the people patients depend on for social economic and psychological support which often includes close friends and coworkers24

Family members are often the surrogate deci-sion makers for patients in the ICU who can no longer communicate their own wishes Adult children often become primary caregivers and take on the role of ldquoparentingrdquo their parents24

which can be a difficult and emotional role reversal Recent long-standing or unresolved family issues may resurface24 It is important for the nurse to be sensitive to family dynamics that may arise to be nonjudgmental in his or her approach to conflict and to maintain clear consistent communication with family mem-bers about the patientrsquos status Prendergast and Puntillo39 recommend that clinicians ldquoantici-pate that some family members may respond with anger emotional outbursts or temporary inconsolable griefrdquo Other aspects of family dynamics that the nurse should seek to under-stand are the family structure and hierarchy past and negative experiences with the health care system and the fact that grief may include denial and false hopes guilt and fear of letting go depression and passivity an inability to make decisions anger andor irritability24

These emotional reactions can be compli-cated by the context of a long course of cancer treatment which may include guilt or anger related to life choices such as the patient with lung cancer who has a history of smoking Many persons with cancer spend time focusing on leaving a legacy or creating something to leave behind such as music poetry stories or doing something they always wanted to do such as plant a garden or build a porch47

Thus during the final hours in the ICU patients and their families may be facing the devastating reality that not only their hopes for a cure but also their ideas for leaving a legacy will not be fulfilled

The critical care nurse at the bedside is the most likely team member to face family membersrsquo questions especially during the

emotionally charged period when goals are shifting to EOL care These questions arise from the complex interactions of the 4 domains of QOL at EOL physical psycho-logical social and spiritual needs of the dying person Skilled and empathic commu-nication and honest answers are critical Nursesrsquo skills vary in finding the right words to sensitively deliver responses to familiesrsquo questions and concerns Some recommended responses to family membersrsquo questions commonly asked at the EOL are provided in Table 2 as a resource for nurses responding to families of critically ill patients with can-cer at the EOL

Continuous Goals of Care Discussions As previously mentioned the dying patient in the ICU usually is not able to speak for himself or herself during the final hours of life because of high severity of illness sedative medica-tions intubation or other factors and as a result families often serve as surrogate decision makers in the ICU setting49 A recent system-atic review50 synthesized the findings of multi-ple randomized controlled trials that tested interventions designed to improve communi-cation between ICU providers and families of adult patients The researchers concluded that ldquothe evidence supports the use of printed information and structured communication by the usual ICU team ethics consultation or palliative care consultation to improve family emotional outcomes and to reduce ICU length of stay and treatment intensityrdquo50

Other recommendations for decision mak-ing include using a consensus approach through family meetings with the aim of establishing goals of care and continually revising goals as needed2449 Attendees at fam-ily meetings should include the patientrsquos family decision makers physician or provider critical care nurse chaplain and social worker24 One of the most important parts of the meeting is to start by asking what the family membersrsquo understanding of the patientrsquos status is and what the family would like to know followed by more listening than talking on the part of the health care team members204951 Content of the discussion should include a review of the patientrsquos current symptoms and comfort level options for alleviating symptoms pros and cons of each option and a prognostic esti-mate24 Questions and concerns from family members should be elicited so that confusion




or misunderstandings can be corrected20 The plan for symptom relief should be verbally conveyed to the family at the end of the meet-ing along with an offer to meet again when needed2449

During the final hours of life for the cancer patient in the ICU the nursersquos presence and communication skills take on primary impor-tance This switch in priorities can be challeng-ing for the nurse who must be mindful of the need to discuss this shift with families and col-leagues The rationale for activities such as monitoring vital signs should be discussed If the goals of care no longer include intervening when changes in blood pressure or oxygen sat-uration occur monitoring of these vital signs is no longer necessary24 Traditional assessment of vital signs can be replaced with the nursersquos skilled assessment of comfort and symptoms which may include assessment of pain respira-tory rate level of dyspnea amount of oral secretions fever and others that are aligned with goals of care Rather than automatic withdrawal of all medical treatments the nurse must base his or her care on a discussion of the expected benefit compared with the potential burden for administration of intra-venous fluids antibiotics and other medica-tions renal dialysis deactivation of implantable cardioverter defibrillators and oxygen24

If not already involved in the patientrsquos care the palliative care service is an excellent resource for critical care nurses in providing recommendations for quality EOL care38

Social workers and spiritual care providers can assist in goals of care discussions socialemo-tional therapeutic interventions and ongoing spiritual care assessments Pharmacists may also be helpful in assisting with symptom man-agement recommendations38 Lastly consult-ing hospice and accessing their services can be extremely valuable to both family members and clinicians even if there is not enough time to transfer the patient out of the ICU

Physical Care Many critically ill patients will experience pain and other symptoms at some point during their ICU experience so expert management and swift abatement are paramount Although nurses and other interprofessional team mem-bers play a vital role in the management of physical pain and symptoms throughout the entire ICU admission care provided in the hours before death is arguably the most

critical and memorable in the familys eyes This is a crucial time to actively involve the family in the care of the patient if they prefer The following recommendations for physical care of the patient with cancer dying in the ICU are organized by family involvement pain and symptom management withdrawal of life-sustaining treatments signs and symptoms of approaching death care of the body after death and care of the family and health care providers after death

Family Involvement The critical care nurse plays a key role in sup-porting family involvement in the physical care of the dying cancer patient First the nurse must assess the familyrsquos personal cultural andor ethnic preferences for providing physi-cal care of the patient Ideally this assessment is conducted before the active dying phase so the nurse allows time to obtain the resources needed for EOL rituals Second it may be diffi-cult for family members to become closely involved in caring for their loved one after days or weeks of being at a distance due to the patientrsquos acuity level amount of technology attached to the patient and around the bedside andor the need for protective isolation cloth-ing in the setting of multiple drug-resistant infections The nurse will need to remove these barriers physically or figuratively and invite the family to resume normal relations with the dying patient including physical care activities if this is important to the family members In the dying critically ill patient with cancer there is no evidence to support the optimal removal of pro-tective isolation and therefore the nurse must use judgment that is consistent with institutional policy and meets the needs of the patient and family at the EOL It should be noted that encouraging family involvement in care of the patientrsquos body can serve as a means for the family to feel useful and less helpless during the final hours24

Third the nurse should ask the family if they would like to participate in activities such as washing the patientrsquos face and hands comb-ing his or her hair applying lotion and provid-ing mouth care38 If the patient is spontaneously breathing during the final hours the nurse can show family members how to roll washcloths or towels and place them under the patientrsquos chin to provide support to the patientrsquos mouth as level of consciousness decreases Fourth family members should be encouraged to



BRENNAN ET AL AACN

conduct rituals or bring traditions to the bed-side such as telling stories singing or playing music or praying The critical care nurse will most likely need to modify the immediate envi-ronment by providing extra chairs tissues and privacy and by encouraging family mem-bers to bring in blankets photos music reli-gious ornaments and pillows from home39

Finally the nurse may need to encourage the family to talk to the patient tell the patient who is there express any final thoughts be present and hold the patientrsquos hand33

Pain and Symptom Management Pain and symptom management in the dying cancer patient in the ICU can be complex due to high severity of illness and potential con-cerns about whether symptoms will be ade-quately managed especially if control of pain and other symptoms has been a challenge throughout the patientrsquos cancer trajectory These patients may be in multisystem organ failure and as a result multiple life-sustaining technologies may be in use such as mechanical ventilators vasopressors hemodialysis or con-tinuous renal replacement therapy enteral or parenteral nutrition frequent blood transfu-sions and others In addition many patients will have indwelling urinary catheters and fecal incontinence systems Generally the most fre-quent symptoms patients experience at the EOL which are often not well controlled include pain agitated delirium dyspnea and increased secretions which often results in noisy breathing (or ldquodeath rattlerdquo)24 Pain and dyspnea are the most common symptoms patients in the ICU experience at EOL2052

Accurate symptom assessment can be a chal-lenge in ICU patients when they are unable to self-report A close family memberrsquos assessment of symptoms should not be ignored or dis-missed In fact an integrated approach that involves proxy raters of patientsrsquo symptoms may be the most valuable method of symptom assessment29

The most effective treatment for pain and dyspnea is opioids titrated to the comfort level of the patient2053 Morphine is often considered the gold standard although choice of opioid may vary by unit or by prescriber preference Other commonly used opioids include fentanyl and hydromorphone (Dilaudid) Morphine is typically administered intra-venously by continuous infusion in the ICU setting in adult doses ranging from 2 to 10 mg

depending in part on whether the patient is opioid naive or not20 One hundred mcg of fen-tanyl and 15 to 2 mg of hydromorphone are approximate equivalent intravenous doses to 10 mg of morphine but it is important to remember that onset and duration of each drug varies20 Dosages and rates of continuous infusions are determined by weight and when the decision occurs to increase a continuous infusion of an opioid to relieve symptoms bolus doses should be administered as well to prevent delays in symptom relief20 Consulta-tion with palliative care specialists andor pre-scribers familiar with initiation and titration of opioids is advised to ensure maximum com-fort Although critical care and advanced prac-tice nurses are experts at assessing and monitoring pain and dyspnea concerns may arise about whether opioids hasten death Clinically careful monitoring can alleviate such concerns as sedation precedes respira-tory depression from opioids30 In addition morally and legally death that is hastened from the use of opioids at the EOL for the pur-pose of symptom relief is deemed acceptable by virtue of the ldquodouble effectrdquo phenome-non39 Double effect means that the use of opi-oids for the purpose of avoiding suffering or distress may also have the additional effect of hastening death which is acceptable because the intent of administering the opioids is to provide comfort not to cause death37 The principle of double effect provides moral guid-ance to the nursersquos role in administering med-ications that relieve distress and discomfort in the dying patient

In addition to pain and dyspnea the criti-cal care nurse will encounter other frequent symptoms or physical changes during the final hours of life of the critically ill patient with cancer If the patient has excess secre-tions the nurse can advocate for decreasing intravenous fluids and gently suction these secretions from the oropharynx as needed andor administer anticholinergic medica-tions such as atropine glycopyrrolate (Robinul) or scopolamine3854 Repositioning the patient onto his or her side with the head of the bed elevated may discourage secretions from pooling in the back of the throat and causing ldquodeath rattlerdquo38 Haloperidol (Haldol) may be administered for restlessness or delir-ium benzodiazepines for anxiety and an antipyretic for fever2038 Typical adult dosing of haloperidol is 05 to 20 mg intravenously




and of lorazepam is 1 to 3 mg intravenously every 2 to 4 hours for both drugs20

Withdrawal of Life-Sustaining Treatment The path leading to the decision to withdraw life-sustaining treatments in the critically ill patient with cancer can be a long and over-whelming one especially because the patient has typically lost decisional capacity thus put-ting family members in the position of being proxy decision makers The critical care nurse plays a pivotal role in both the deci-sion-making process and the actual with-drawal When the shared decision occurs that continuing life-sustaining treatments is either no longer consistent with the patientrsquos prefer-ences andor the burden of such treatments outweighs the benefit any and all treatments considered life sustaining such as blood prod-ucts hemodialysis or continuous renal replacement therapy vasopressors mechanical ventilation total parenteral nutrition antibi-otics and artificial hydration and nutrition may be withdrawn or withheld These deci-sions are influenced by the patientrsquos religious spiritual cultural and social values2039 Fami-lies may have grown accustomed to continu-ous monitoring of vital signs regular blood draws specific laboratory values and other diagnostic tests20 Again the critical care nurse plays the key role in sensitively explaining to the family that the focus is no longer on the machines bedside monitors or vital signs but on comfort The nurse should explain to the family that turning off monitors in the room may be a helpful way to create a more sooth-ing home-like environment while also being sensitive to the fact that the family may be attached to watching the monitors and may not be immediately amenable to this recom-mendation On the basis of the nursersquos assess-ment of the familyrsquos needs in preparation for the death the nurse can explain what to expect in general after withdrawal of various treatments These discussions may help the family focus more attention on watching their loved one instead of the monitors During this sacred time the critical care nursersquos voice demeanor body language and actions are crit-ical for avoiding a negative memory of the dying experience for the family and loved ones

Terminal weaning of mechanical ventilation is common at EOL and may include leaving the endotracheal tube in place if the patient cannot

support his or her airway As a result dyspnea air hunger and discomfort should be antici-pated39 Terminal weaning with removal of the endotracheal tube which helps to facilitate closer contact with family members may occur if clinicians have confidence that the patient will be able to maintain his or her airway or the dyspnea can be adequately managed with opioids39 The critical care nurse must ensure that a plan with adequate orders for appropri-ate medications is in place to manage air hunger and respiratory distress if it occurs Authors of 2 recent reviews of the literature on the topic of terminal weaning concluded that more research is needed in this area in order to develop consensus guidelines and reduce geo-graphic variation in practice3555 In the absence of strong evidence and consensus guidelines the recommended practice for withdrawal of mechanical ventilation is to conduct a prelimi-nary assessment of the patientrsquos symptoms and comfort identify the likelihood that the patientrsquos airway will be maintained after extu-bation make a decision about premedication needs and plans for full removal of the endotra-cheal tube share the plan with the family and describe what can be expected throughout the process and continually reassess the patient for symptoms and comfort and the family for dis-tress3555 For example the nurse should assess for symptoms such as the presence of tachyp-nea tachycardia accessory muscle use restless-ness nasal flaring grunting and fearful facial expression and treat symptoms with opioids andor benzodiazepines using the ldquostart low and go slowrdquo philosophy titrating up as needed203555 A brief interruption of sedatives may also be warranted for meaningful commu-nicative interactions to occur between the fam-ily members and the patient37 The goal is relief of symptoms and can be elicited in the form of familyrsquos perceptions of their loved onersquos comfort level

It is important to discuss with family members that death tends to occur within minutes to hours after withdrawal of mechanical ventilation3536

Although studies have shown that there is no sig-nificant correlation between analgesia use and length of survival after withdrawal of mechanical ventilation it is important to recognize that there may be a gray area between palliation and has-tening death because patients are typically close to death before ventilation is withdrawn35 Open communication with family members and clear documentation of these discussions55 the patientsrsquo



BRENNAN ET AL AACN

symptoms interventions initiated to promote their relief and the outcome of the interventions is an important nursing role in the setting of withdrawal of mechanical ventilation

After the Death Family members may be interested in partici-pating in postmortem care alone or with assis-tance from nurses and patient care assistants on the basis of their personal cultural or eth-nic preferences39 Again the nurse is strongly encouraged to assess these preferences before the death occurs whenever possible Facilitat-ing the organ donation process is an important role for the critical care nurse1520 However patients are not eligible for organ donation if they have a current malignancy or an infectious disease which excludes most oncology patients dying in the ICU However some patients with cancer can donate corneas56 Critical care nurses need to be aware of the institutional policies and state regulations that apply to organ donation in their settings

Family members may have differing percep-tions about whether the patient experienced a ldquogood deathrdquo or not38 Few studies have been conducted to determine the bereavement needs of families after the death of a loved one in the ICU setting57 In the absence of strong evidence one suggestion is for ICUs to incorporate some of the underlying principles of grief and bereavement programs formally offered by hospice programs keeping in mind that not all family members will need formal bereavement counseling Another suggestion is for critical care units to develop resource lists that identify formal bereavement programs offered in their community In addition follow-up phone calls can be made to family members at defined times (eg at 1 3 and 6 months) and most importantly at the 1-year anniversary of the loved onersquos death Memorial services may also be held annually to honor and remember those who have died thereby allowing the critical care unit team to reconnect with the family58

Health-care professionals typically do not receive formal training on how to cope with death in the workplace and are often ill pre-pared to deal with the emotions of death and dying It is important therefore for clinicians to have access to hospital chaplains ethics committee members and unit managerslea-ders to help them debrief after caring for a dying patient and family39 Symptoms of post-traumatic stress disorder burnout and moral

distress may occur after providing EOL care20

Unit-based rituals such as support groups reg-ular debriefings access to spiritual or psycho-logical specialists or writing in journals to share thoughts and feelings about the loss of a patient may be helpful for processing grief and preventing burnout associated with unre-solved distress after caring for dying patients20

A companion article in this symposium by Wiencek et al59 offers a discussion of moral distress and resources for critical care nurses who care for critically ill patients with cancer

System ChangeQI Although the hospital system can enhance and support EOL care it can also create barriers and challenges related to the delivery of care not only for cancer patients at EOL but for all patients System changes in terms of institu-tional policies and organizational structures and processes are often sought to overcome such barriers and challenges For example Beckstrand and Kirchhoff26 instituted a 3-step process when a patient was admitted to an ICU that included introducing the patient and family to unit procedures for accessing infor-mation about the patientrsquos status giving the family an informational pamphlet about unit procedures and letting the family know that the nurse will call a designated family member daily to provide an update on the patientrsquos condition This system change resulted in fewer incoming calls to the unit from family members increased family satisfaction with care and an increase in familiesrsquo information needs being met26

Another example of system change is incor-porating EOL needs for patients and families into staffing and nurse assignment decisions but a lack of data on this topic is a barrier to identi-fying the best methods for implementing such a practice and is an area for future research

A great deal of research has been conducted on the topic of QI in the ICU with EOL care being identified as an important area20

Research in this area has moved from identify-ing EOL care domains and the related QI indi-cators specific to the ICU to testing QI interventions aimed at improving the quality of EOL care in the ICU6061 Curtis and col-leaguesrsquo61 recent randomized controlled trial of an intervention that involved educating ICU clinicians on incorporating palliative care prin-ciples into their practice did not result in any improvement in patient or nurse outcomes




The study provides evidence that palliative care delivered in an integrative model may be less effective than a consultative model especially if clinicians are trained by individuals outside their facility such outside training resulted in less institutional buy-in and ldquouptakerdquo of the intervention in their study61

Additional research in the area of system change and QI specific to EOL care in the ICU is needed Acute and critical care nurses are integral to such research The prospect of con-ducting QI andor research may seem over-whelming and therefore forming a committee with the support of the unit manager and other hospital leaders such as the quality management department may be useful Nurses who want to improve EOL care in a specific ICU can consider conducting a QI projectmdashsuch as creating a brochure with photos of staff phone numbers and commu-nication procedures for familiesmdashas a feasible starting point that engages the team and potentially demonstrates improvements in patient and family satisfaction

Conclusion The final hours of life for the oncology patient in the ICU can be an emotional and overwhelming experience for patients and families yet this is an opportunity for experi-enced critical care nurses to demonstrate skilled and compassionate care for patients at a sacred time as they make their final lifersquos transition and for families who will carry the memory of those final hours with them Crit-ical care nurses play a key role in ensuring that patients experience a ldquogood deathrdquo in the ICU and in promoting an environment of shared decision making and effective inter-professional communication that minimizes distress for families

This article describes the context and mean-ing of the transition from curative to EOL care for oncology patients and families summa-rizes the tenets of hospice care and current evi-dence-based guidelines for EOL care in the ICU and provides a list of recommendations for interventions nurses can implement while caring for patients at the bedside during the final hours Areas for future research include identifying whether differences exist in cancer patientsrsquo EOL experiences compared with other patients in the ICU promoting consis-tency in withdrawal of mechanical ventilation

practices across settings and identifying addi-tional system changes and QI interventions that improve the quality of EOL care for patients in the ICU

REFERENCES 1 National Cancer Institute Cancer Trends Progress Report

mdash20092010 Update httpprogressreportcancergovdoc _detailasppid1ampdid2009ampchid96ampcoid929ampmid trends Accessed March 10 2011

2 Earle CC Landrum MB Souza JM Neville BA Weeks JC Ayanian JZ Aggressiveness of cancer care near the end of life is it a quality-of-care issue J Clin Oncol 2008 26(23)3860ndash3866

3 National Hospice and Palliative Care Organization NHPCO Facts and Figures Hospice Care in America httpwww nhpcoorgfilespublicStatistics_ResearchHospice_Facts _Figures_Oct-2010pdf Accessed March 10 2011

4 Angus DC Barnato AE Linde-Zwirble WT et al Use of intensive care at the end of life in the United States an epidemiologic study Crit Care Med 200432(3)638ndash643

5 Wright AA Keating NL Balboni TA Matulonis UA Block SD Prigerson HG Place of death correlations with quality of life of patients with cancer and predictors of bereaved care-giversrsquo mental health J Clin Oncol 201028(29)4457ndash4464

6 National Comprehensive Cancer Network NCCN Guidelines for Supportive Care Palliative Care 2010 httpwwwnccnorgprofessionalsphysician_gls f_guidelinesaspsupportive Accessed February 27 2011

7 Campbell ML Palliative care consultation in the inten-sive care unit Crit Care Med 200634(11)(suppl)S355ndash S358

8 Ferrell BR Dahlin C Campbell ML Paice JA Malloy P Virani R End-of-life Nursing Education Consortium (ELNEC) Training Program improving palliative care in critical care Crit Care Nurs Q 200730(3)206ndash212

9 Nelson JE Bassett R Boss RD et al Models for structur-ing a clinical initiative to enhance palliative care in the intensive care unit a report from the IPAL-ICU Project (Improving Palliative Care in the ICU) Crit Care Med 201038(9)1765ndash1772

10 Goldsmith B Dietrich J Du Q Morrison RS Variability in access to hospital palliative care in the United States J Palliat Med 200811(8)1094ndash1102

11 Temel JS Greer JA Muzikansky A et al Early palliative care for patients with metastatic nonmdashsmall-cell lung cancer N Engl J Med 2010363(8)733ndash742

12 Kehl KA Moving toward peace an analysis of the concept of a good death Am J Hosp Palliat Care 200623(4)277ndash286

13 Beatty K Winkelman C Bokar JA Mazanec P Advances in oncology care targeted therapies AACN Adv Crit Care 201122(4)323ndash334

14 Sulmasy DP Astrow AB He MK et al The culture of faith and hope Cancer 2010116(15)3702ndash3711

15 Daly BJ End-of-life decision making organ donation and critical-care nurses Crit Care Nurse 200626(2) 78ndash86

16 Campbell TC Carey EC Jackson VA et al Discussing prognosis balancing hope and realism Cancer J 2010 16(5)461ndash466

17 Chaitin E Stiller R Jacobs S Hershl J Grogen TWeinberg J Physician-patient relationship in the intensive care unit erosion of the sacred trust Crit Care Med 2003 31(5)(suppl)S367ndashS372

18 Mack JW Block SD Nilsson M et al Measuring thera-peutic alliance between oncologists and patients with advanced cancer the Human Connection Scale Cancer 2009115(14)3302ndash3311

19 Kasberg H Brister L Barnard B Aggressive disease aggressive treatment the adult hematopoietic stem cell transplant patient in the intensive care unit AACN Adv Crit Care 201122(4)360ndash375



BRENNAN ET AL

20 Truog RD Campbell ML Curtis JR et al Recommenda-tions for end-of-life care in the intensive care unit a con-sensus statement by the American College of Critical Care Medicine Crit Care Med 200836(3)953ndash963

21 Beckstrand RL Callister LC Kirchhoff KT Providing a ldquogood deathrdquo critical-care nursesrsquo suggestions for improving end-of-life care Am J Crit Care 200615(1)38ndash45

22 Cook D Rocker G Giacomini M Sinuff T Heyland D Understanding and changing attitudes toward withdrawal and withholding of life support in the intensive care unit Crit Care Med 200634(11)(suppl)S317ndashS323

23 Rushton CH Williams MA Sabatier KH The integration of palliative care and critical care one vision one voice Crit Care Nurs Clin North Am 200214(2)133ndash140 vii

24 Berry P Griffie J Planning for the actual death In Ferrell BR Coyle N eds Oxford Textbook of Palliative Nursing 3rd ed New York NY Oxford University Press 2010629ndash644

25 The Joint Commission Advancing Effective Communi-cation Cultural Competence and Patient- and Family-Centered Care A Roadmap for Hospitals March 1 2010 httpwwwjointcommissionorgAdvancing_Effective_ Communication_Cultural_Competence_and_Patient_and_ Family_Centered_Care Accessed July 1 2011

26 Beckstrand RL Kirchhoff KT Providing end-of-life care to patients critical-care nursesrsquo perceived obstacles and supportive behaviors Am J Crit Care 200514(5)395ndash403

27 Oregon Health Authority Death with Dignity Act Public Health 2010 httppublichealthoregongovProvider-PartnerResourcesEvaluationResearchDeathwithDig-nityActPagesindexaspx Accessed June 21 2011

28 Center for Health Statistics Washington State Depart-ment of Health Death with Dignity Act 2011 httpwww dohwagovdwda Accessed June 21 2011

29 Nekolaichuk CL Bruera E Spachynski K MacEachern T Hanson J Maguire TO A comparison of patient and proxy symptom assessments in advanced cancer patients Pal-liat Med 199913(4)311ndash323

30 Campbell ML Treating distress at the end of life the principle of double effect AACN Adv Crit Care 200819(3)340ndash344

31 Steinhauser K Alexander S Byock I George L Tulsky J Seri-ously ill patientsrsquo discussions of preparation and life com-pletion an intervention to assist with transition at the end of life Palliative and Supportive Care 20097(4)393ndash404

32 Steinhauser K Christakis N Clipp E McNeilly M McIntyre L Tulsky J Factors considered important at the end of life by patients family physicians and other care providers JAMA 2000284(19)2476ndash2482

33 Prince-Paul M Exline J Personal relationships and com-munication messages at the end of life Nurs Clin North Am 201045(3)449ndash463

34 Keeley M Turning toward death together the functions of messages during final conversations in close relation-ships J Soc Pers Relat 200724(2)225

35 Campbell ML How to withdraw mechanical ventilation a systematic review of the literature AACN Adv Crit Care 200718(4)397ndash403

36 Cooke CR Hotchkin DL Engelberg RA Rubinson L Cur-tis JR Predictors of time to death after terminal with-drawal of mechanical ventilation in the ICU Chest 2010138(2)289ndash297

37 Mularski RA Puntillo K Varkey B et al Pain manage-ment within the palliative and end-of-life care experi-ence in the ICU Chest 2009135(5)1360ndash1369

38 Wiegand DL Petri L Is a good death possible after with-drawal of life-sustaining therapy Nurs Clin North Am 201045(3)427ndash440

39 Prendergast TJ Puntillo KA Withdrawal of life support inten-sive caring at the end of life JAMA 2002288(21)2732ndash2740

40 Prince-Paul M When hospice is the best option an opportunity to redefine goals Oncology (Williston Park) 200923(4)(suppl Nurse Ed)13ndash17

AACN

41 Ferrell BR A good death In Ferrell BR Coyle N eds Oxford Textbook of Palliative Care New York NY Oxford University Press 20101351

42 Bryson K Spirituality meaning and transcendence J Pall Support Care 20042(3)321ndash328

43 Phelps A Maciejewski P Nilsson M et al Religious cop-ing and use of intensive life-prolonging care near death in patients with advanced cancer JAMA 2009301(11) 1140ndash1147

44 Balboni TA Vanderwerker LC Paulk B et al Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life J Clin Oncol 200725(5)555ndash560

45 Puchalski C Ferrell B Virani R et al Improving the qual-ity of spiritual care as a dimension of palliative care the report of the consensus conference J Palliat Med 2009 12(10)885ndash904

46 Levy MM Making a personal relationship with death In Curtis JR Rubenfeld GD eds Managing Death in the ICU The Transition From Cure to Comfort New York NY Oxford University Press 200131ndash36

47 Lipson EJ Art in oncology how patients add life to their days J Clin Oncol 201129(10)1392ndash1393

48 Wee B Hillier R Interventions for noisy breathing in patients near to death Cochrane Database Syst Rev 2008(1) CD005177 doi 10100214651858CD005177pub2

49 Curtis J White D Practical guidelines for evidence-based ICU family conferences Chest 2008134(4)835ndash843

50 Scheunemann L McDevitt M Carson S Hanson L Ran-domized controlled trials of interventions to improve communication in intensive care a systematic review Chest 2011139(3)543ndash554

51 Curtis JR Patrick DL How to discuss dying and death in the ICU In Curtis JR Rubenfeld GD eds Managing Death in the Intensive Care Unit The Transition From Cure to Comfort New York NY Oxford University Press 2001 85ndash102

52 Puntillo KA Morris AB Thompson CL Stanik-Hutt J White CA Wild LR Pain behaviors observed during six common procedures results from Thunder Project II Crit Care Med 200432(2)421ndash427

53 Viola R Kiteley C Lloyd NS Mackay JA Wilson JWong RK The management of dyspnea in cancer patients a system-atic review Support Care Cancer 200816(4)329ndash337

54 Kintzel PE Chase SL Thomas W Vancamp DM Clements EA Anticholinergic medications for managing noisy respirations in adult hospice patients Am J Health-Syst Pharm 200966(5)458ndash464

55 Curtis JR Vincent JL Ethics and end-of-life care for adults in the intensive care unit Lancet 2010376(9749) 1347ndash1353

56 Donor Alliance Question and Answer What about factors such as age or pre-existing medical conditions 2010 httpwwwdonorallianceorginfo-page-17 Accessed June 22 2011

57 Williams CM The identification of family membersrsquo con-tribution to patientsrsquo care in the intensive care unit a naturalistic inquiry Nurs Crit Care 200510(1)6ndash14

58 Lautrette A Darmon M Megarbane B et al A commu-nication strategy and brochure for relatives of patients dying in the ICU N Engl J Med 2007356(5)469ndash478

59 Wiencek C Ferrell B Jackson M The meaning of our work caring for the critically ill patient with cancer AACN Adv Crit Care 201122(4)397-407

60 Clarke EB Curtis JR Luce JM et al Quality indicators for end-of-life care in the intensive care unit Crit Care Med 200331(9)2255ndash2262

61 Curtis JR Nielsen EL Treece PD et al Effect of a quality-improvement intervention on end-of-life care in the intensive care unit a randomized trial Am J Respir Crit Care Med 2011183(3)348ndash 355



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critical care nurse cares for critically ill patients with cancer and their families during a time when these trends are converging and resources may be limited for providing quality end-of-life (EOL) care

One potential strategy for improving EOL care in the ICU is to integrate palliative care more fully or earlier in the ICU course Pallia-tive care focuses on effective pain and symptom management and incorporation of psychoso-cial and spiritual needs into the patient and familyrsquos plan of care with the goal of prevent-ing and relieving suffering for patients with life-threatening or debilitating illnesses regard-less of the stage of disease6 Efforts to integrate palliative care into ICU care include providing ICU clinicians with training through the End-of-Life Nursing Education Consortium and Education for Physicians on End-of-Life Care and access to a hospital-based palliative care consult service78 The Improving Palliative Care in the ICU Project recently published a review of the 2 main models of providing pal-liative care in the ICU9 The consultative model consists of palliative care consultants who provide recommendations for caring for patients in the ICU whereas the integrative model involves embedding palliative care prin-ciples into daily practices of the ICU team9

Although integration of palliative care has the potential to reduce the number of patients with cancer dying in the ICU much of the growth in palliative care programs has occurred in large academic medical centers and critical care nurses who work in smaller for-profit or community hospitals may not have access to palliative care programs10

Although palliative care programs have grown tremendously in the past decade with increas-ing evidence of their effectiveness in improving quality and length of life11 many patients with cancer are not being managed by palliative care experts at the EOL Experienced critical care nurses need the knowledge and skills to provide quality EOL care for patients with cancer and to preserve a good memory of the final hours for family members

The aim of this article is to provide guid-ance to nurses who are caring for oncology patients and their families during the final hours of life in the ICU setting using the tenets of a ldquogood deathrdquo described by Kehl as an organizing framework for recommendations12

These tenets are derived from Kehlrsquos extensive review of the literature but there is individual

variation among patients and families with regard to what a ldquogood deathrdquo entails based on their respective goals values and customs This article will also review the context and meaning of EOL in the oncology population and discuss common barriers to providing a ldquogood deathrdquo in the ICU In addition this article aims to summarize the principles of hospice care and provide recommendations for addressing spiritual existential psychoso-cial and physical needs at EOL facilitating communication fostering positive coping for family members and health care providers and promoting system change Lastly specific interventions that critical care nurses can implement will be listed in accordance with current guidelines for providing EOL care in the ICU

Conceptual Framework Kehlrsquos12 concept analysis of a ldquogood deathrdquo serves as the guiding framework for this arti-cle Kehlrsquos extensive review of the literature identified the following attributes of a ldquogood deathrdquo being in control being comfortable having a sense of closure having trust in care providers recognizing the impending death and leaving a legacy Kehl also specified the importance of minimizing burden optimizing relationships affirmingrecognizing the value of the dying person honoring beliefs and val-ues caring for family and acknowledging the level of appropriateness of the death (eg whether the dying person is young or the death is unexpected) Kehl also presented elements of each attribute that are important to take into consideration when caring for the dying patient

Context and Meaning of EOL Care in the Oncology Population There is no empirical evidence that EOL care needs are different in the oncology popula-tion than in patients with other terminal diagnoses However there are important characteristics specific to the context and meaning of the transition from curative care to EOL care in the oncology population These characteristics include the societal and family expectations of cure use of metaphors that liken cancer to a battle providersrsquo discomfort with prognostication and EOL discussions and the existence of well-formed often long-standing relationships with oncology providers Each characteristic is described here with the












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Being in control





Being comfortable

Lack of distress



Hope













Sense of closure

Saying goodbye













Interventions






(continued)














Individuality



Access to care

























(continued)



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and love33















(continued)









Family care









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NCI200171_Layout 1 301011 1033 AM 81










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Being in control





Being comfortable

Lack of distress



Hope













Sense of closure

Saying goodbye













Interventions






(continued)














Individuality



Access to care

























(continued)



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and love33















(continued)









Family care









Interventions














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Being in control





Being comfortable

Lack of distress



Hope













Sense of closure

Saying goodbye













Interventions






(continued)














Individuality



Access to care

























(continued)



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and love33















(continued)









Family care









Interventions














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Questions





















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Being in control





Being comfortable

Lack of distress



Hope













Sense of closure

Saying goodbye













Interventions






(continued)














Individuality



Access to care

























(continued)



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and love33















(continued)









Family care









Interventions














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Questions





















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Individuality



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(continued)



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and love33















(continued)









Family care









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and love33















(continued)









Family care









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Providing a “Good Death” for Oncology Patients During the...

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