End-of-Life Care
|17
SKILLS AND PROCEDURES
SGill17.1 Supporting Patients and Families in Grief, p, 493
Sil 17.2 Symptom Management at the End of Life, p. 496
Skil17.3 Care of the Body After Death, p. 502
OBJECTIVES
Masteryof content in this chapter will enable the nurse to:
. Discussprinciples of palliative care. • Explain a nurse's role in assisting
• Explain hospice care.
. Develop approaches to physical symptom management at
the end of life.
• Develop approaches to spiritual symptom management at
the end of life.
MEDIAIRESOURCES
• http://evolve.elsevier.com/Perry/skills
• Review Questions
• Audio Glossary
• Case Studies
PURPOSE
Nurseshave historically played a vital role in the care of patients
and families facing serious, life-limiting illness and death. The
World Health Organization (2019) defnes palliative care as an
approach that "improves the quality of life of patients and their
families facing the problems associated with life-threatening ill-
ness, through the prevention and relief of suffering by means of
early identi cation and impeccable assessment and treatment of
pain and other problems, physical, psychosocial and spiritual." Pal-
liative care may be provided in conjunction with other life-sustain-
ing treatments such as surgery or chemotherapy. The goals of pal-
liative care include comprehensive management of pain and other
symptoms, and psychosocial and spiritual support provided by an
interdisciplinary team composed of physicians, nurses, therapists,
social workers, chaplains, and dietitians (National Consensus Proj-
ect for Quality Palliative Care [NCP, 2018) (Box 17.1). To be
successful, it is important to provide a caring presence and apply
therapeutic communication principles (Fig. 17.1).
At the end of life, palliative care may transition to hospicecare.
Hospice, an interdisciplinary, patient- and family-centered pro-
gram of care, helps people live as well as possible through the dying
process. Patients are eligible for hospice care asa Medicare or Med-
icaid bene t during the nal phase of a terminal illness, usually the
last 6 months of life. Because hospice is a philosophy of care, the
services can be provided at home; in freestanding hospice agencies;
or in nursing home, extended care, or acute care settings.
At the time of death nurses provide compassionate care to pa-
tients and family members by offering information, guidance, and
support and facilitating communication. In addition, nursesprovide
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Explain physiological changes in impending death.
patients and families in
grief and at the end of life.
• Discuss the process of postmortem care.
Discuss a nurse's role in facilitating autopsy and organ and
tissue donation requests.
• Answers to Clinical Review Questions
• Skills Performance Checklists
• Printable Key Points
postmortem care (e.g., care of the body after death) in a digni ed
manner, consistent with a patient's religious and cultural beliefs.
PRACTICE STANDARDS
• National Consensus Project for Quality Palliative Care (NCP),
2018--Palliative care principles and practice
• The Joint Commission (TJC): National Patient Safery Goals,
2021-Patient identi cation
PRINCIPLES FOR PRACTICE
• Expert palliative care involves helping patients reach peaceful
deaths at the end of life.
• Providing palliative care requires holistic assessment of a pa-
tient, management of physical signs and symptoms, and provi-
sion of psychosocial and spiritual support to patients and their
families.
• Symptoms are experienced by patient and can be reported
only by the patient. Signs that may accompany a patient's
symptoms are observed by the nurse.
• Management of physical symptoms at the end of life can de-
crease psychosocial distress, thus improving overall quality of
life (American Cancer Society [ACS), 2019b).
• As a nurse, listen carefully to understand the signifcance of a
loss to a patient or family member, identify concerns, and assess
his or her ability to sustain hope and move forward in life.
• To receive hospice care at home, a family caregiver must be
available and willing to provide care when a patient is no longe
able to function alone. Hospice team members offer 24-hou
49
 492 CHAPTER 17 END-OF-LIFECARE

BOX 17.1 • Patients are encouraged to set realistic goals and hen
helpideg
ways to achieve them so they can maintain theiruSUzl
Goals of Palliative Care and a sense of normalcy.
Sualtoutinh

• Provide patients relief from pain and other distressing symptoms. • When patients with advanced illness are no longerahle.
letone
• Af rm life and regard dying as a nomal process. ticipate in making decisions, they can communicaterhePe
• Aim to neither hasten nor postpone death. ues and preferences in an advance directive. Advancedi
• Integrate the psychological and spiritual aspects of patient care. directiy
are legal documents that explain how patientswanr
Offer a support system to help patients live as actively as possible nt the
medical decisions to be made if they cannot makethe d:
until death. decisig
• Offer a support system to help the family cope during the patient's themselves (ACS, 2019c).
illness and in their own bereavement. • An advance directive lets the health care teamandfamib
• Enhance quality of life and positively in uence the course of ilness. givers know what kind of health care patients wan.
patients want to make decisions when theycannot.Anadva
Adapted from World Health Organization (WHO): WHO de nition of palliative
care, 2019. htp://www.who.in/cancer/palliative/de nition/en/. Accessed July directive also helps patients think ahead of time aboutthekind
20, 2019. of care they want (ACS, 2019c).
• Ifa patient has an advance directive, place a copy inthene
cal record and instruct the patient to give copies to hisorh
health care provider and family members (seeagencypolicl
Know that some states have specihc forms that mustbe
(ACS, 2019c).
• Cardiopulmonary resuscitation (CPR) (see Chapter 28)isysd
in cases of cardiac and/or pulmonary arrest. Adults inCong
tion with the health care team may consent to a do notTesy
citate" (DNR) status verbally or in writing. Assurepatientsw
choose not to be resuscitated that they will continue toretei
full palliative care and symptom relief.
• Patients and families from culturally and linguisticallydive.
(CALD) backgrounds have varying preferences regarding
disclosure of a diagnosis and prognosis, and managementde
sion making in health care (Kirby et al., 2018).
• Culture affects the meaning of pain and suffering, howonee
presses grief, and ideas about an afterlife. In someculture,te
FIG. 17.1 Nurses use their presence and therapeutic communication words "cancer" or "palliative" are not used inconversationte
to assess how symptoms affect a patient's life. (From iStock.com/ cause they are associated with death (Kirby et al.,2018).
monkeybusinessimages.) • Given the wide range of cultural beliefs, rst engageinsě
re ection on your own cultural and personai beliefsaboutbs
accessibility and coordinate care between the home and inpa- and death. Gather knowledge on common end-of-lifeculhur!
tient settings. or religious practices; then validate through nurse-patient de
• As the time of a patient's death approaches, the hospice team cussions the relevance of these practices for a particularpatie:
provides intensive support to the patient and family. Hospice
bene ts include respite for family caregivers, limited hospital- EVIDENCE-BASED PRACTICE
ization for acute symptom management, and bereavement care
after death. The Hospice Foundation of America (2018) offers Communication and Decision Making
numerous resources. In end-of-life care there may be many different healthcare
pruvsi
• To nurture your capacity as a nurse to remain empathically en- ers and family caregivers involved in making decisionswithandit
gaged with patients and family members, you must also care for a patient. It is helpful when one person is in charge.Gainingn
yourself physically, spiritually, and emotionally. understanding of the challenges and obstacles and alsothehes
Recognize your own attitudes, feelings, values, and expectations way to approach these tough conversations is important kr 2l
about death and the individual, cultural, and spiritual diversity involved to provide for quality of life leading to apeacehul
deat.
existing in these beliefs and customs (American Association of Multiple perspectives from health care providers to family
careghvs
Colleges of Nursing [AACNI, 2016). have been the focus of recent research, inluding culturalcons
erations, which can assist the development ofstrategiestoenhmnt

PATIENT-CENTERED CARE communication and support decision making:

• An integrative review found end-of-life care to bethemosta
• A patient-centered approach to palliative and end-of-life care mon ethical dilemma faced by nurses, withcommunicationaht
engages a patient and family with an interdisciplinary team that prognosis, inadequate palliation, questions of potentialheal
provides education and supports the patient and family, helping and futility to be main sources of concern (Rainer et al,201N!
them to be informed and make autonomous decisions regarding • Nurses often felt that dying was not handled withsutfhcient
the patient's treatment (or discontinuation of treatment) (NCP, tention and comfort, and in one study it wasfoundthat et
2018). gency care was given because end-of-life discussionsdid n
• Talk with patients about their perception of time. Conversa- occur (Rainer et al., 2018).
tions regarding experience of time may help to nd daily ac- • Participants discussed the distressing appearance ofthe
tivities best tting the patient's wishes, aiming at making the patient, and a general theme was that nurses acceptedthedine
most of his or her remaining time (Rovers et al., 2019). process before physicians (Rainer et al., 2018).
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 SKILL 17.1
Aictsfocusedon communication with families. Some
rontlictaggressivetreatment rather than hospice; oth-
lintubationfora patient who couldeasily be aned;
Rn unrealisticabout the prognosis to the point
hichtheybecamehostile to the health care team (Rainer
2018).
.irative studyaimed to gain understanding of the exDe-
, eople from CALD backgrounds, four main themes
pn(1) terminologyin the transition to care; (2) com
tion, culture,and pain management; (3) (not) talking
kath anddying: and (4) religious faith as a coping strat-
hallengingthe terminal diagnosis (Kirby et al., 2018),
regard to care and developing a good relationship with
nitient and family caregivers, the researchers concluded
moreattentionis needed to develop effective communica-
dilk andrecognizethe CALD patient's individual cul-
inguistic, and spiritual needs and values (Kirby et al..
ilth careproviders need to identify and remedy misunder-
ines and be sensitive to cultural taboos and beliefs sur-
andingdeathand dying (Kirby et al., 2018).
Snlymeetingscan promote communication and decrease the
sahologicalburdens of decision making for families, includ-
geting a DNR order in place and allowing for questions to
kansweredand for families to have a place to discuss care op-
sFamily
meetingsprovide support and con dence to ad-
pateforpatients and make important care decisions (Wood
aal, 2019).
+SKILL 17.1 Supporting Patientts andl Fainilfes iin Gief
é
experiencesin situations of serious illness and at the end of
haveprofoundphysical, psychological, social, and spiritual ef-
iTSondying people, family memberS, friends, and caregivers. The
gÉ
ESOciatedwith serious illness or death arises from fear of the
saun, pain,sadness about leaving loved ones behind, loss of
aaTol,or unresolved guilt.
Hospitalization,
chronic illness, and disability involve multiple
IsesHospitalizedpatients lose privacy and control over normal
tines.With chronic illness a person's body no longer functions
zIoncedid,leading to a loss of self-esteem and social roles. Dis-
hltyandthreat of end of life creates nancial insecurity and of-
inthreatens interpersonal relationships. Death separates people
m thephysical presence of a person in their lives.
Gref
Gnefisanatural and normal response to loss; it is universal but also
ipsonalreaction (Gökler-Danısman et al., 2017). Grief is based on
JEnalexperiences, psychological makeup, cultural expectations,
adlamilyand spiritual beliefs. Losses at the end of life may be hnan-
m.physical,emotional, social, or spiritual. Examples of these losses
Ralıderolechanges, altered self-image, loss of income, or emotional
tes Thedepth and duration of grief (e.g., one's inner emotional
ponseto los) depend on the type of loss and the person's percep-
in ofit. Coping with grief involves a period of mourning (e.g, the
and,socialexpressions of grief and the behavior associated with
.Mourning
behaviorsandritualshelpgrievingindividualsadapt
S, receivesocial support, adjust expectations, and go forward in
Most mourning rituals are culturally in uenced, learned behav-
Eereavement includes grief and mourning (e.g., the inner emo-
alfesponsesand outward behaviors in response to loss).
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SUPPORTING PATIENTS AND FAMILIES IN GRIEF 493
SAFETY GUIDELINES
• Patients who are seriously ill experience decreased muscle
strength and limited endurance. However, they may prefer to
get out of bed for meals or to walk to the bathroom as long as
possible. Have them sit for a minute before getting out of bed.
Guard against falls by having patients use appropriate assistive
devices for walking. Remain with patients until they are safely
seated or lying down (see Chapter 12).
• Place a patient who wants to eat or drink in an upright position
and offer small bites of food or sips of water slowly to avoid as-
piration (see Chapter 31). Be sure that the nurse call system is
in an accessible location within the patient's reach at all times,
and consider calls as a high priority.
• Proper patient identi cation, especially in communicating a
patient's DNR or CPR status, ensures that caregivers will not
initiate unwanted and unhelpful medical interventions (TJC,
2021). Know the methods of your agency for designating a pa-
tient's resuscitation status.
Patients approaching end of life are more prone to diminished
skin perfusion, limited mobility, incontinence, and decreased
nutrition; all of these can contribute to the development of
pressure injuries (see Chapter 39) (Samuriwo, 2019).
• Nonpharmacological therapy and nonopioid pharmacological
therapy are preferred for chronic pain. Before starting and rou-
tinely during opioid therapy, discuss with patients and family
caregivers the known risks and realistic bene ts of opioid ther-
apy (Centers for Disease Control and Prevention [CDC], 2019).
As a nurse you help patients by understanding types of grief.
Normal or uncomplicated grief is evidenced by feelings, behaviors,
and reactions associated with loss such as sadness, anger, crying,
resentment, and loneliness. Families may feel the presence of the
lost person and yearn for his or her return. They may nd it di cult
to resume life as it was before their loss. An uncomplicated grief
experience often helps a person mature and develop life perspec-
tive. Anticipatory grief occurs before an actual loss or death and
involves gradual disengagement from what is being lost. For ex-
ample, ifa dying process is lengthy, the patient and family care-
giver prepare for death before it occurs and sometimes, but not al-
ways, display fewer common grief responses at the time of death.
Complicated grief (symptoms lasting 6 months or longer) occurs
when a person experiences signi cant distress related to the loss.
Criteria for a person experiencing complicated grief may include
an inability to accept the death of the loved one, emotional numb-
ness, bitterness, or anger; excessive avoidance of loss reminders;
dif culty trusting others; and expressing the feeling that life is
meaningless (Parisi et al., 2019).
People do not experience grief in the same way. Some people do
not report feeling distressed or depressed, and others feel distressed
for a lifetime without negative consequences. Not all people want
to process the emotional experience of grief, and focus instead on
resilience, growth, or positive outcomes after a loss.
Use basic knowledge of grief responses to support patients and
their families and to address other common psychosocial and spiri-
tual symptoms at the end of life. Patients and their families may
talk openly about a patient's approaching death, and others choose
not to acknowledge it. Health care providers, depending on their
own personal and cultural understandings of grief and death, often
 494 CHAPTER 17 END-OF-LIFECARE
avoid initiating conversations on these dif cult topics. Provide op-
portunities for discussion, paying close attention to a patient's re-
sponse and indications of a desire to talk further. Educating a pa-
tient and family about what to expect during the nal days or hours
can alleviate anxiety and promote a more positive death experi-
ence for all involved (NCP, 2018).
Delegation
The skills of assessing patients' or family members' grief reactions
and designing appropriate interventions cannot be delegated to
assistive personnel (AP). The nurse directs the AP to:
• Inform the nurse when a patient or family caregiver exhibits
behavior commonly associated with grief (e.g., crying, anger,
withdrawal)
STEP
ASSESSMENT
1. Identify the patient using at least two identifhers (e.g., name
and birthday or name and medical record number) according
to agency policy.
2. Sit near patient in a quiet, private location. Center yourself
and establish a quiet presence. Establish eye contact. Be
aware that use of eye contact in some cultures conveys
disrespect or discomfort.
3. Consider the in uence of patient's cultural background on
communication. Apply principles of plain language and
health literacy during assessment (NCP, 2018).
4. Assess patient's/family caregiver's health literacy.
5. Listen carefully to patient's story. Observe patient responses.
Use open communication.
6. Determine meaning of the los to patient: its type,suddenness,
and when it occurred. Use open-ended questions such as:
•"Tell me how your loss affects your family."
•"You said your illness was unexpected. Describe how that
made you feel?"
7. Combine knowledge of grief theory with observation of
patient behaviors. Validate observations by sharing them
with patient; paraphrase, clarify, or summarize, as in the
following examples:
•"You've mentioned several times that you feel hopeless."
•"It seems that this is hard for you to talk about."
•"You look sad. Is there something in particular that
brought on your tears?"
8. Encourage patient to describe the loss and its impact on daily
life (e.g., "You said your diagnosis changed your life forever.
Tell me more.").
9. Ask patient to describe the coping strategies that he or she
uses most often in dif cult times (e.g., "What or who helps
you in times of crisis?").
10. Assess family caregivers' unique needs and resources. Note if
patient receives care at home and who gives the care.
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• Form supportive relationships with patients andfamilw.
cate-
ers and inform the nurse when patients or family
caregie
have questions or concerns
• Alert the nurse to the arrival of family caregiverssothe
can discuss the plan of care and offer support
Interdisciplinary Collaboration
• Collaborate with the health care provider, socialwotken.
palliative care team to support the patient and familycare
• Collaborate with the interdisciplinary team toprovidefame
givers a list of resources for postloss support andgriefsupnom
Substance Abuse and Mental Health Services Admiisra
(SAMHSAJ; local community hospice and palliativecarere
zations and grief counselors; the American CancerSocietylA0S
RATIONALE
Ensures correct patient. Complies with The JointCommission
standards and improves patient safety (TJC, 2021).
Presence expresses caring and creates healing moments (Kiman
Seo, 2016). Privacy protects con dentiality andpromotesa
sense of safety for a patient when expressing thoughtsand
emotions.
Individual differences in uence patient's griefresponseand
communication style (Kirby et al., 2018).
Ensures patient/family caregiver has the capacity toobtain,
communicate, process, and understand basic health
information (CDC, 2020).
Develops trust in a caring relationship. Actively listeningto
patient's concerns and verbalizing patient's needsconvejs
empathy and compassion (Kim and Seo, 2016).
The type, meaning, suddenness, and time elapsed sincethe ls
in uence the grief experience and coping methods.
Use information about type and stage of grief to guidediscusin
not to judge patient's responses. Con rms accuracy ofyour
observations and validates patient's feelings. Promptspatient
to continue.
Listening to patient's description helps to minimizeassumpt
Familiar, effective coping strategies are often helpful inthe
current crisis, los, or grief experience.
Illness signi cantly affects family relationships.
Family caregivers need support and guidance to aid in proce
emotions and any fears they may have related toend-o
care (Given and Reinhard, 2017).
 SKILL 17.1 SUPPORTING PATIENTS AND FAMILIES IN GRIEF 495

STEP
satient's spiritual needs, beliefs, and resources. Focus
ssuchastrust, life purpose, faith/belief, and hope,
RATIONALE
Identi es patient's spiritual beliefs and values. Enables patient
autonomy by identifying beliefs and preferences for care or
rituals related to faith and/or spirituality. Offers a greater
understanding of patient's culture and values, leading to
patient-centered care (Kirby et al., 2018).

ANNING
axtedoutcomestollowing completion of procedures:
Patie
maintains
relationshipswith signi cantpeople. Patient in grief or loss retains connections with social network.
,Paient
expressesgrief in keeping with his or her cultural and Patient receives support necessary to retain cherished values and
eligixs practices. ways of being.
Patientuses effective coping strategies. Use of strategies will be re ected in patient's ability to identify
sense of relief.
Prientmaintains normal life routines. Patient adjusts to life-changing circumstances and maintains
sense of control.
eom door and bedside curtain. Provides patient privacy.

MPLEMENTATION
Showanempathic understanding of patient's strengths and Promotes nurse-patient trust, caring, compassion, and empathy.
needs.

Oerinformationabout patient's illness and treatment. Misunderstanding adds to patient's uncertainty, anxiety, and
Clarifymisunderstandings or misinformation. Use culturally suffering (Kirby et al., 2018).
anropriatelanguage and simple terms.
Encouragepatient to sustain relationships with others to Af liation with others offers support and helps patient stay
helpmaintain independence and receive necessary help. engaged in life.
lIncludepatient-identi ed support people in discussions.
4Helppatient achieve short-term goals (e.g., symptom relief, Helping patients identify and meet their personal goals
takcompletion,resolution of relational problems). contributes to their quality of life.
sAovidefrequent opportunities for patient and family Emotions change quickly and frequently during stress and
membersto express their fears and concerns. Be attentive complicate communication for nurses and patients.
oexpressionsof intense emotions.
Educateand support patient and family. Discuss procedures, Provides emotional support and comfort, decreases anxiety, and
planofcare, and anticipated changes. Use interdisciplinary allows patient to rest. Advocating for patient encourages
teamto support patient's needs and preferences. patient autonomy and incorporates patient preferences into
plan of care.
1.Instructpatient in relaxation strategies: mindfulness-based Complementary therapies have been shown in select cases to
stressreduction, guided imagery, meditation, hand massage, relieve anxiety and effectively reduce stress, thus providing
healingtouch (see Chapter 16). useful coping strategies (National Center for Complementary
and Integrative Health [NCCIH, 2016).
&Encouragevisits with loved ones, life review with stories or Reviewing positive and negative events in one's life allows a
photographs,or projects such as organizing photo albums or person to nd meaning in his or her experiences, resolve
joumal writing. con icts, and come to a place of acceptance.
.Facilitatepatient's religious/spiritual practices and Spiritual interventions help patients maintain hope and connect
connectionswith religious community. Use prayer or music with the core of their identity. Spiritual interventions can
andprovide a listening presence. Make a referral to a decrease anxiety, promote a sense of peace, and help patient
spiritualcare provider if appropriate nd meaning in his or her life (O'Brien et al., 2019).
10.Atend of discussion help patient to comfortable position. Promotes patient comfort and safety.
1.Placenurse call system in an accessible location within Ensures patient can call for assistance if needed and promotes
patient's reach. safety and prevents falls.
2Raisesiderails (as appropriate) and lower bed to lowest Promotes patient safety.
position.

EVALUATION

Natepatientdescriptions of relationships and activities with Provides information on extent to which patient retains
others.
relationalties.
Observe patient's behaviors during ongoing interactions. Demonstrates patient's ability to express grief and coping.
Elicitpatientperceptions of bene t or outcomes gained from Evaluates ef cacy of interventions.
eofcopinginterventions.
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 496 CHAPTER 17 END-OF-LIFECARE
STEP
4. Discuss progress toward performing routine activities at home.
5. Use Teach-Back: "I want to be sure I explained clearly how to
perform guided imagery. In your own words, tell me ways you
can use this technique." Revise your instruction now or
develop plan for revised patient teaching if patient is not able
to teach back correctly.
Unexpected Outcomes
1. Patient does not acknowledge loss and shows signs of extreme sorrow,
anger, withdrawal, or denial.
2. Family and patient relationships do not give patient needed support.
Recording
• Record interventions used to support patient coping and note
patient's verbal and nonverbal responses in nurses' notes in
electronic health record (EHR) or chart.
Hand-off Reporting
• Report patient's grief reactions to members of the interdisci-
plinary team, noting behaviors that affect health outcomes such
as treatment refusals or prolonged inactivity.
Special Considerations
Patient Education
• Give family caregivers basic information about common grief
responses and how to offer support. Coach them on ways to
provide physical, emotional, and spiritual support to patient
and one another (e.g., providing basic hygiene, listening atten-
tively, avoiding falsereassurances, allowing for the expression of
dif cult emotions, talking about normal family activities).
Vuinerable Populations
Pediatric
• Children's understanding of death, in uenced by age and develop-
mental level, differs from that of adults. Respect parents' wishes
about when and what to tell children about illness or death.
When discussing sensitive topics with children, encourage parents
to offer caring explanations at a level a child is able to understand.
• Play therapy or drawing helps children express thoughts, emo-
tions, or fears about illness or death.
+ SKILL 17.2 Symptom Management at the End of Life
High-quality palliative care offers vigilant symptom management
while avoiding futile treatment. The American Nurses Association
(ANA) states that nurses have a moral and ethical responsibility
to provide optimal care to persons experiencing pain (ANA,
2018). It is crucial to have an interdisciplinary team approach to
symptom assessment and treatment as pain and symptom manage-
ment are complicated processes (NCP, 2018) (see Chapter 16).
Patients living with life-limiting illness experience multiple,
complex physical, emotional, and spiritual symptoms. Relief of
symptoms is balanced with the possible side effects of medication
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RATIONALE
Evaluates patient's achievement of desired goals or needfor
revision.
Teach-back is an evidence-based health literacy
promotes patient engagement, patient safety, adherencee ary
quality. The goal of teach-back is to ensure that youha
explained medical information clearly so that patientsand
their families understand what you communicated to the
(Agency for Healthcare Research and Quality(AHRO
Related Interventions
• Consider referral to grief specialist professional (e.g.nuưrsepractire
psychologist, spiritual care provider).
Share and validate observations of family strain orpatientconcarne
family interactions.
Consider family-patient discussion with health care team.
Be alert to all family members' grief reactionsbecausethet
feel guilt, resentment, or helplessness with the illnessordeg
of a sibling, child, or grandchild. Facilitatecommunicationa
family members who must be separated from thechild.
Surrogate decision makers, usually the parents, need tomakeheds
care decisions for infants and young children. Somedecisionsz
dif cult because outcomes in children are oftenunpredictable.
Parents value obtaining adequate information andcommun.
cation, being physically present with their child,and chil
receiving adequate pain management, social support,anden.
pathy from health care providers at end-of-life (Latha,
2016.
Gerontological
Losing a partner after a long and satisfying relationship isver
diffcult and is essentially a loss of self. The mourning isasmuch
for oneself as for theindividual (Touhy and Jett,2018).
• Intense grief may cause a temporary decrease incognitivefn:
tion that can manifest as confusion (Touhy and Jett,2018).
• Many older adults have coexisting medical conditionsthatat
their symptom burden. They also have lived long enoughtohave
experienced cumulative losses, including members oftheirfam
and support group, which complicates their grief
experience.
Home Care
• Follow up with the grieving family caregivers a few weksate
the death to offer support and check in to see if theyareinne
of any other services.
(Harman and Bailey, 2020; Pirschel, 2016). Managing patiens
symptoms at the end of life begins by understanding theimpat
that these symptoms have on patients' and their family caregines
lives from their shared and individual point of view(Fig.17
Ethnicity and culture are strongly related to attitudestovardlit
sustaining treatments during terminal illness and theuseofhopať
services (Kirby et al., 2018). Consider these factors whenyouas
all symptoms and concerns thoroughly because a patient's texd
not being heard or believed compounds themagnitudeof sf
toms. Patients identify pain as their most common and sn
 SKILL 17.2 SYMPTOM MANAGEMENT AT THE END OF LIFE 497

Delegation
Supportive care for symptom managenent can be delegated to as-
Sistivepersonnel (AP). However, the nurse must conduct the ini
tialassessmentsof symptoms and determination of therapies. The
nurse directs the AP to:
• Notify the nurse if patient reports new symptoms or if existing
symptoms worsen or change
• Provide basic comfort care such as positioning, room tempera-
ture control, hygiene, and mouth care
• Report possible adverse effects of drug therapy as instructed by
the nurse
• Speak to unconscious or dying patients because hearing is the
last sense to diminish

Interdisciplinary Collaboration
• Symptom management at end-of-life requires an interdisciplin-
A patient-centered approach involves family and patients
72. ary approach as nurses work with health care providers and seek
ps incare. (From Williams PA: deWit's fundamental concepts
complementary strategies to enhance a patient's comfort.
s fornursing,ed5, St. Louis, 2018, Elsevier.)
Equipment
(seeChapter 16). In addition to the psychological and • Personal care items most preferred by patient
interventions discussed in Skill 17.1, nurses manage • Comfort and hygiene products
gical symptomsat the end of life. • Clean gloves

STEP RATIONALE

ASSESSMENT
lentifypatient using at least two identi ers (e.g., name and Ensures patient safety. Complies with The Joint Commission
ohdayor name and medical record number) according to standards and improves patient safety (TJC, 2021).
gcy policy.
LAsespatient's/family caregiver's health literacy, level of Ensures patient/family caregiver has the capacity to obtain,
aderstanding,and experience with symptoms. communicate, process, and understand basic health
information (CDC, 2020).
1A&patientsto describe symptoms in their own words. Use open- Symptoms are personal perceptions and experienced only by the
nd romptssuchas "Describe your leg pain to me" or "Tell me patient.
t howyouaresleepingsinceyoustartedtaking thismedicine."
LAllowsuffcient time for patients to describe their symptoms Ensures a more complete assessment. Prevents you from making
ndencourage them to say more: assumptions about patient's symptoms, prematurely stopping
sthereanything else bothering you?" the assessment process.
"You'vetold me about your . pain. Do you have pain
anywhere else"
iAsespatient'semotional health. Does the patient feel Emotional conditions have potential to worsen fatigue in patients
zxios,sad,depressed, bored, or understimulated? Use with cancer (ACS, 2019a).
sndardizedtool toassess anxiety if available (AACN, 2016).
iAsespatient'spain severity on a pain scale of O to 10 (see Consistent use of a standard pain scale helps assess changes in
Chagter16). If patient cannot self-report pain, observe for patient pain levels and evaluate effectiveness of pain
tieesymptoms (ACS, 2019a): interventions. Using a pain scale is recommended by the
American Cancer Society (ACS, 2019b) as a helpful way to
describe patients' responses to pain-relief measures.
Noisybreathing -labored, harsh, or rapid breaths Patients unable to report or verbalize pain show nonverbal signs
Makingpaincdsounds -including groaning, moaning, or of pain.
expresing hurt
cial expressions-looking sad, tense, or frightened;
frowningor crying
Body languagetension, clenched sts, knees pulled up,
inlexibility,restlessness, or looking like he or she is trying
toget away from the hurt area
Bodymovement--changing positions to get comfortable
but cannot
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 498 CHAPTER 17 END-OF-LIFECARE

STEP RATIONALE

7. Perform hand hygiene. Reduces transmission of microorganisms.

8. Assess for feeling of breathlessness (does patient feel that he Dyspnea, air hunger, or shortness of breath resultsfro
m tnet:h
or she is getting enough air?), respiratory rate, breathing or respiratory changes. Near the end of life, ne-Stuke
patterns, and lung sounds. Assess for presence of airway respirations are common and are characterized byalternat
secretions. periods of apnea and hyperprnea.
9. Observe condition of skin, especially dependent areas such as Decreased peripheral circulation and activity levelcontri
tributet
the back, hecls, and buttocks (see Chapters 6 and 39). skin breakdown (Samuriwo, 2019).
10. Inspect patient's oral cavity, including mucosa, tongue, and Dehydration, diffculty swallowing, and in ammation ofmy
teeth (see Chapter 6). are common at end of life.
11. Assess bowel function (see Chapter 35). Patients experience constipation because ofdecreasedoral :.
immobility, and medications such as opioids (CIC, 20191
Patients who have diarrhea are at risk fordehydration
a. Determine usual bowel elimination pattern (frequency,
character, usual time of day) and effectiveness of usual
bowel management routines.
b. If patient is passing liquid stool, assess for presence of fecal Watery stool leaking around blockage indicates fecalimractie
impaction (see agerncy policy).
C. Review medication regimnens, prescriptions, and over-the- Medications can alter bowel elimination patterns.Diarthea
counter drugs known to cause constipation (e.g., opioids, results from infections, diseases, or medications (e.g,
antacids). antibiotics or chemotherapy). Change in therapy mightbe
necessary.
d. ldentify typical food and uid intake over I week and Oral intake and activity levels in uence bowelelimination
patient's activity levels. patterns.
12. Assess urinary elimination (see Chapter 34) and ability to Urinary incontinence results from patient's diseaseproces,
control urination. If incontinent, assessfor skin breakdown altered level of consciousness, or medications(diuretics,
or patient discomfort. anticholinergics, opioids).
13. Assess patient's appetite, ability to swallow, and for presence Medications, pain, depression, disease progression, ordecreaet
of nausea or vomiting. Use standardized tool for assessment if blood Aow to digestive organs near death oftencontribute
available (AACN, 2016). nausea, vomiting, and decreased appetite.
a. Consider presence of nausea in patients receiving enteral Patients who have decreased consciousness are unable torepor
feedings. nausea.
14. Assess daily food and uid intake in relation to patient's Nutrition screening helps to identify defcits and allowsfor
condition and preferences. interventions to be carried out to improve nutritionalstatus
(see Chapter 31).
15. Use descriptive scale to assess fatigue (e.g., scale with Metabolic demands of a disease, anemia as a result of
descriptors none, moderate, severe). Ask if fatigue limits chemotherapy, treatments, and cumulative effects ofother
patient's ability to perform desired activities. symptoms cause weakness and fatigue (ACS, 2019a).
16. Assess for terminal delirium in patient near death (e.g., Allows you to identify this condition and implement
confusion, restlessness, and/or agitation, with or without day- interventions to keep patient safe and decreasepatient
night reversal) (Finucane et al., 2017). anxiety.
a. Consider if patient has pain, nausea,dyspnea, full bladder Risk factors for presence of delirium are commonphysical
or bowel, poor sleep patterns, anxiety, or joint pain from problems that need to be treated or ruled out ascausative
immobility. factors.
b. Review medical record for hypercalcemia, hypoglycemia, Metabolic imbalances cause restlessness or delirium.
hyponatremia, or dehydration.
C. Review patient's medications. Unintended responses to medications result in changedactivity
states.
d. Determine if patient has unresolved emotional or spiritual Spiritual distress contributes tO restlessness or increasedpain.
issues.
17. Assess patient's or family caregiver's goals for symptom Ensures patient or family caregiver are able to makedecisios
management. about symptom management.

PLANNING
1. Expected outcomes following completion of procedure:
• Patient reports acceptable level of pain. Indicates pain control.
• Patient reports feeling warm and comfortable. Warming interventions help reverse effects ofreducedperiherl
circulation.
• Patient reports comfortable eating and drinking patterns. Optimal food and uid intake are based on patientpreference
and comfort.
fl
fl
fl
fl
fl
 SK
.2 SYMPTOM MANAGEMENT AT THE END OF LIFE 499

thassoft,formedbowelmovements.
,Ainemainsfree of irritation or breakdown.
is not restless.
prient
Drient reports less distress from
,Prientexperiencesless respiratory distress.
m door and bedside curtain.
n and
oganizeequipmentatbedside.
RATIONALE
Indicatesadequate bowel function and peristaltic activity.
Interventions to protect skin from bowel or urinary incontinence
are effective.
Therapies have calming effect.
tigue. Energy conservation methods are effective; patient adjusts to
changes in activity level.
Patient is less apprehensive and breathes easily.
Provides patient privacy.
Ensures more effcient procedure.

PLEMENTATION
eom handygiene.
nain relief. Use multimodal interventions.
.Administerordered analgesics and adjuvants. Confer with
healthcare provider and recommend an around-the-clock
ATC)dosing schedule, especially if pain is anticipated
irmajorityofday. A variety of extended- or controlled-
leaseoral opioid formulations (dosing intervals of 8, 10,
12, or
4hours)and transdermal patches (72 hours) are
effective.
A Povide nonpharmacological interventions
mindfulness-basedstress reduction, music therapy,
relaxationexercises, and guided imagery (see Chapter 16).
cProvidepatient and family education on causes and
patternsof pain and safety of opioid use and explain
interventions.
dReassesspatient's pain l hour after administration
medicationor alternative therapy.
Povidegeneral comfort measures.
aProvidebath and skin care based on patient's preferences
andhygiene needs (see Chapter 18). Note: Daily baths
arenotalways desired or necessary at end of life if they
caUusediscomfort, fatigue, or increased pain.
b.Provideeye care and use arti cial tears in patients
decreasedconsciousness (see Chapter 19).
c.Repositionfrequently; do not position on tubes or other
objects.
4Provideoral hygiene after meals and at bedtime
ndmore frequently in mouth-breathing or unconscious
patients(see Chapter 18).
a Ue antifungal oral rinses as prescribed or sodium
bicarbonateor normal saline rinses.
bMoistenlips with nonpetroleum balm.
Initiatebowelmanagement regimen to reduce risk for
Gonstipationor diarrhea:
aGivepatient whatever Aluids he or she enjoys if medically
tolerated.Near end of life, patient may refuse
not force fAuid intake
D.
Encourageregular physical activity (e.g., walking) if
tolerated.
fl
fl
fl
fi
fl
fi
fi
Reduces transmission of microorganisms.
Management of symptoms should be multimodal (NCP, 2018;
ANA, 2018).
Opioids should be given on a xed dosage schedule ATC rather
than "as needed" (prn), with doses given before pain returns
(Burchum and Rosenthal, 2019). An ATC medication
lessens the severity of end-of-dose pain, allowing a patient to
sleep through the night and reducing "clock watching" for
the next dose. Extended-release medications maintain
constant serum opioid concentration, minimizing toxic and
subtherapeutic concentrations (Burchum and Rosenthal,
2019).
such as Nonpharmacological measures supplement pain medication and
can increase patient comfort (CDC, 2019; Strada and
Portenoy, 2020). Music interventions have been found to
decreasepain, anxiety, nausea, shortness of breath, and
feelings ofdepression, along with providing signi cant
increases in feelings of well-being (Peng et al., 2019).
Encourages patient autonomy and reduces emotional distress,
clarifying misinformation about opioid therapies.
of pain To determine if desired effect of medication or alternative
treatment was achieved; if patient has reduced pain level.
Clean skin promotes comfort.
with Eye irritation causes pain. Blink re ex diminishes near death,
causing drying of cornea.
Prolonged, even slight pressure from weight of patient's body or
objects causes skin injury.
while awake Oral mucosa integrity is needed for normal swallowing and to
minimize anorexia and malnutrition. Mouth rinses remove
oral debris and clean the mouth. Dehydration develops as
patient experiences metabolic changes and uid intake
declines.
Patients near death breathe through the mouth, drying oral
mucosa.
Prevents skin breakdown.
Interventions improve peristalsis in constipation, soften fecal
mass, and decrease abdominal discomfort.
Decreased blood ow to intestines at end of life causes anorexia.
uids. Do
Decreased physical activity can lead to malnutrition and loss of
muscle mass (Arends et al., 2017).
 500 CHAPTER 17 END-OF-LIFECARE

STEP RATIONALE
C. Administer daily stool softener or laxative, especially in
patients using opioids for pain management.
d. In case of diarrhea, provide low-residue diet; treat Treatments reduce incidence and severity ofdiarrhea
infections or discontinue medications if possible. can lead to dehydration.
Administer antidiarrheal medications. Patients with
chronic diarrhea require rigorous skin care to promote
comfort.
6. Manage urinary incontinence with intervention appropriate Urinary output declines near death, making it possibleto
for patient's conditions (e.g., condom catheter, adult manage incontinence without an indwelling catheter.
incontinence pads (see Chapter 34)).

Clinical Judgment Consider an induelling catheter only if skin integrity, patient preference, or fatigue from bedchangesbecomesanissue.

7. Offer patient favorite foods in amount and at time he or she
desires. Do not overly encourage patient to eat.
a. Treat nausea by administering antiemetics intravenously or
rectally as prescribed. As nausea subsides, offer clear liquids
and ice chips. Avoid caffeinated liquids, milk, and fruit
juices.
8. Manage fatigue.
a. Help patient identify valued or desired tasks and preferred
time of day to perform tasks and determine how to
conserve energy for only those tasks. Help with activities
of daily living. Eliminate extra steps in activities.
b. Explain care activities before performing and include
patient in setting daily schedule.
C. DiscuSs with patient easy ways to incorporate exercise (e.g.,
yoga, walking, biking, and swimming) into daily activities.
9. Support patient's breathing efforts.
a. Position for comfort in semi-Fowler or Fowler position.
Patients may be experiencing gastrointestinal (GI) distres,dhy
mouth, or other symptoms related to theirdiseaseproces whid
may contribute to decreased oral intake. In addition,patien
nearing nal hours of lifedecreasetheir oralintakesa t
slowing of bodily functions and/or altered level ofconsciouses
GI mucosa tolerates clear liquids more readily. Certainliquid
increase stomach acidity.
Taking rest breaks during activity will help conserveenergy.
Tired
patients need help and monitoring to ensure patientsafety,
Minimizes anxiety and maintains patient's autonomyand
involvement.
Research has shown that even for people with
advanced-stage
cancer, exercise can lessen pain and decrease anxiety,stres,
depression, shortness of breath, and fatigue.
Promotes maximal ventilation, lung expansion, anddrainagedf
secretions.

Clinical Judgment Elevating head of bed above 30 degreesincreases risk of pressure injury formation. If patient requires Fowlerpostiontohaste
comforably, tun often and increasefrequency of skin monitoring.

b. Elevate head to facilitate postural drainage. Turn from Deep airway suctioning causes discomfort and is not effectivein
side to side to mobilize and drain secretions. Suction reducing airway noise or secretion clearancc (Harmanand
only ifnecessary. Bailey, 2020).
c. Provide ordered antimuscarinic medications. Anticholinergic medications reduce saliva and excesive
secretions, thus decreasing noisy respirations.
d. Stay with patients experiencing dyspnea or air hunger. Sharing control with patients reduces anxiety thatcontributes
Use interventions that patients perceive as relieving to feelings of air hunger. Morphine is the drug ofchoicefor
their shortness of breath (choice of oxygen-delivery dyspnea, decreasing respiratory rate and decreasinganxiety;
modes, fan near face, body position). Administer opioids Use of oxygen has little bene t unless patient feelsbeter
or anxiolytics as prescribed. Benzodiazepines may also be using it.
administered for anxiety related to dyspnea. Keep room
cool with low humidity.
10. Manage restlessness.
a. Keep patient's room quiet with soft lighting and at Reduces unnecessary external stimulation andprovides
comfortable temperature. Offer family members comforting space. Privacy allows family members chancet
opportunities to maintain close contact. Encourage use of provide verbal assurances and touch. Presence of afamily
soft music, prayer, or reading from patient's favorite book. member to hold a hand provides a calming effect.
fi
fi
 SKILL 17.2 SYMPTOM MANAGEMENT AT THE END OF LIFE 501

STEP
.lleleast-sedating
pharmacological options to control
stlessness.Consult with interdisciplinary team about
irating a medication (e.g., lorazepam). Discontinue all
nesential medication. Use subcutaneous, transdermal,
aiblingual,or rectal medication delivery routes.
4.Manage anxiety:
Paide counselingand supportive therapy. Consult with
ascribing health care provider for benzodiazepines, the
ings of choice. Offer available counseling services (e.g.,
pastoralcare, psychologist, social work).
RATIONALE
Reduce delirium without making patient unconscious. Control
of restlessness relieves family's concern that patient is in pain
or distress. Determine cause of delirium, if possible, to
decrease use of medication (Harman and Bailey, 2020).
Counseling improves patient/family understanding of the
disease and its expected course and identi es strengths and
coping strategies.

al Judgment Caution: The use of benzodiazepines in very elderly patients canresudein a paradoxical agitation.
Nical

Removeanddispose of gloves. Perform hand hygiene. Reduces transmission of microorganisms.

Raiseside rails (as appropriate) and lower bed to lowest Ensures patient safety.
psition.
uResurenurse call system is in an accessible location within Ensures patient can call for assistance if needed.
patient's reach.

JALUATION
såpatientto rate pain on scale ofO to 10 (see Chapter 16) Determines extent of pain relief.
devaluatepain characteristics. Assess behavior in nonverbal
patents.

t åpatientto describe mouth comfort, and inspect oral cavity. Evaluates condition of oral cavity and ability to chew or swallow.
tSaluate
frequencyof defecation; after patient defecates, Determines status of bowel function and character of stool.
ngect feces.

Chseneskin condition. Determines if skin tears or areas of pressure or maceration are

present.
Adpatientto rate fatigue (scale from none to moderate to Determines if patient is less distressed with activity.
sere)andcompare with baseline. Observe for fatigue or
àrnes ofbreath when patient performs activities.
EChervepatient's respiratory patterns and ask if breathing is Determines if respiratory distress is relieved.
2ayand comfortable.

1Cherve
patient's behavior or ask family to report on it. Note Determines level of comfort and extent ofrestlessness.
el ofrestlessness.
| UkTeach-Back: "I want to be sure I explained that we want Teach-back is an evidence-based health literacy intervention that
DControl
yourpain, and this requires you to describe it. Tell promotes patient engagement, patient safety, adherence, and
zeshatthe numbers on the pain scale mean. Tell me when it quality. The goal of teach-back is to ensure that you have
szgoodtime to let me know about your pain before it gets explained medical information clearly so that patients and
0severe."
Revise your instruction now or develop a plan for their families understand what you communicated to them
risedpatientor family caregiver teaching if patient or family (AHRQ, 2020).
cHegiveris not able to teach back correctly.

Iherpected Outcomes Related lInterventions

Ureorseveralsymptoms remain unresolved, with patient reporting
te orno relief.
ientbecomesanxious,fearful, or exhausted as a result of continued
Sjmptoms.
• Increase frequency of or change an intervention.
• Try combination therapies.
• Give patients therapy choices and try different interventions.
• Explain goals of therapies and possible reasons for symptoms.
• Answer call lights quickly and explain plan of care throughout the day.

Pecording
Hand-off Reporting
ecorddetaileddescription of patient symptoms, related inter- • Report unexpected new symptoms or uncontrolled existing
lCtions,and patient response in nurses' notes in electronic symptoms to health care provide.
athrecord (EHR) or chart and/or appropriate ow sheets.
econsistent
descriptors for comparison over time. Special Considerations
nent your evaluation of patient and family caregiver Patient Education
aming • Involve family members in the patient's care (see Fig. 17.2). With
dsUccessful
symptom interventions in the care plan. proper instruction they can perform most symptom-management
fl
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 502 CHAPTER 17 END-OF-LIFECARE
interventions, deliver personal care (e.g., bathing, oral hygiene),
and administer medications in the home setting.
Recognize a patient's transition to the active dying phase and
communicate to the patient and family the expectation of im-
minent death. Educate the patient and family members about
signs of imminent death (NCP, 2018).
Vulnerable Populations
Pediatric
• Allow young children to visit a dying parent or grandparent if
desired. Encourage parents to express their concerns about how
to talk about death and loss with their child.
• Teach parents how to recognize andassess pain in a nonverbal child.
Encourage involvement of siblings of a child who is dying on the
basis of their needs and readiness (Hockenberry et al., 2019).
Gerontological
• Include older adults in conversations and accommodate com-
munication limits (e.g., hearing de cits).
• Older adults need companionship and maintenance of self-esteem.
Detached caregiver behaviors such as being slow to respond to
physical discomforts, failing to keep room odor free, and speaking in
+ SKILL17.3 Care ofthe BodyAfteriDeath
Nurses provide postmortem care in patients' homes and institu-
tional settings. Treat the body after death with respect according to
the cultural and religious practices of the family and in accordance
with local law (NCP, 2018). Religious and cultural practices gov-
ern how to care for a body near or after death (Kirby et al., 2018)
(Box 17.2).
Two legal considerations arise at the time of death. First, the
1986 Omnibus Budget Reconciliation Act (OBRA) legally re-
quires that a patient's survivors be made aware of the option of
organ and tissue donation. In most states citizens can sign the back
of their driver's license if they wish to be an organ or tissue donor.
However, a family member still usually gives consent for donation
at the time of death. Patients may indicate their wish to donate
organs and tissue in an advance directive.
In the case of vital organ donation (e.g., heart, lungs, liver,
pancreas, or kidneys), a patient must remain on life support until
the organs are surgically removed. Often the nurse's role in organ
procurement includes helping to identify potential organ donors,
providing care for the donor's body, and caring for the family
throughout the donation process (Tocher, 2019). Family members
often need help understanding what "brain death" (i.e., the irre-
versible absence of all brain function, including the brainstem)
means for a person who has died. Patients appear to still be alive
because life support keeps the deceased's organs functioning until
they can be retrieved. Tissues such as eyes, bone, and skin are re-
trieved from deceased patients not on life support. Because of the
sensitive nature of making requests for organ donation, profession-
als educated in organ procurement often assume that responsibility.
They inform family members of their options for donation, provide
information about costs (no cost to the family), and inform them
that donation does not delay funeral arrangements.
Nurses also play a role in the donation request process. Facilitate
the conversation by providing a private place and helping to identify
the surrogate to be involved in the request. Sometimes you notify the
local donor registry to determine if a patient quali es for organ dona-
tion because certain medical conditions prohibit donation. Reinforce
fi
fi
hushed tones of voice are often perceived by theperson-
ment. Encourage a family caregiver, friend,sittet.or bhn
teer to stay with the patient during the night, SoMe
who have developed a lifestyle around aloneness odtal
s preter
sensitive to patient's preferences (Touhy and Jett.201
18)
• Assessing and addressing pain in an older adultwho ho
impaired or nonverbal is sometimes diffcult and
olvesptor
symptom management.
Disabled
• Address the patient directly; use the patient's prefer
munication method and tools; slow downcommuni
volve familycaregiversbut beattentivetoinappro
propriate.
over of decision making (Sullivan et al., 2018).
• Support the patient to assure health care needs,cone
perspectives are understood (Sullivan et al.. 2018)
Home Care
• Recommend that family caregivers monitor their om
levels and request respite care when they need relief.S
resources for help with meals, shopping, or stayingwith
patient while family goes out.
BOX 17.2
Religious and Cultural Considerations in Care
of the Body Near and After Death
BuddhismPeople prefer a quiet place for death. Incensemaybe
used. When the person has died, cover the body with acotton
sheet. Leave the deceased's mouth and eyes open.Otherssho
not touch the body. Maintain strict silence after death.Autopsyad
organ donation are permitted.
Christianity-Christian denominations have varying pracices atting
of death. Bible texts may be read near or at the time ofdeath.
Protestants receive the sacraments of Holy Communionor
sometimes baptism. Roman Catholics often requestsacramentsg
Penance, Anointing of the Sick, and Holy Communion at theerdd
life. Many Christian groups offer prayers and anointing andview
death as "going home" to Jesus. There are no prescribedrituastr
body preparation, and autopsy and organ donationareusualy
permissible.
Hinduism-People prefer to die at home or in a quiet setting.Becas
of a belief in reincarmation,
efforts are made to resolverelationsçs
before death. The head of a person nearing death shouldfacete
east with a lamp placed near the head. If the dying personis ut#
to chant his mantra, a family member can chant it into theight
Passages from the Bhagavad Gita are recited. Familymembers
prefer to wash the body after death and are present tochant,pa,
and use incense. Hindus prefer cremation of the body.
Islam-A Muslim reader recites verses from the Qur'anwhenthe
person is near death. Family members prepare the body,andnon
Muslims should not touch it. Close the person's eyesafterdeath
and straighten the arms and legs. Autopsy or organ dontions
generally not permissible, except as required by law.
Judaism--Deathbed confessional, blessings, and readingsfromte
Torah are traditional in Orthodox Judaism. A familymemberrerat
with the body until burial, which takes place within 24hours,noton
the Sabbath. A family member closes the deceased'sejes o
death. Synagogue burial societies may prepare the body,whdns
wrapped in white linen. Organ donation prohibitions mayexst
Orthodox Judaism, but not for all Jews. Autopsies maybe
considered if organs are not removed.

ithe procedure and inform the family about how you
edeceased'sbody. Above all, honor the family's cul.
a hvthe
ctices aand
aelgSpractices nd support their nal decisicon. Donor
ort thatdonatingorganshelpedthem in their grief
yetenr
ghatheyfelt positive about the experience.
legal and medical signi cance often
sondprocedureof
r adeathisan
autopsy,
or
postmortem
examination,
iatter
the surgical dissectionof a body after death, helps
the exactcauseand circumstances of a death, discovers
of adisease,orprovidesresearchdata. It is not per-
Aeath. State laws determine when autopsies are
inhut theyareusually pertormed in circumstances of un-
hle&. violent trauma; unexpected death in the home)
ath occurswithin 24 hours of hospitaladmission.Be
answer qucstions and support the family's choices.
lly donotdelayburial orchangetheappearance
esed. but there may be a cost to families.
legation
dcane ofa body after death can be delegated to assistive per-
AP. However,it is often easier for the nurse and AP to work
her ntoridingpostmortem care. The nurse directs the AP to:
k agencypolicy in cases of autopsy or organ and tissue
jnatin
STEP
ASSESSMENT
kntif patientusing at least two identi ers (e.g., name and
hrhday or name and medical record number) according to
gency policy.
thealthcareprovider to establish time of death and
kermine if he or she has requested an autopsy. If an autopsy
srlannedor a possible crime is involved, use special
mecautionsto preserve evidence (see agency policy).
Determineif family members or signi cant others are present
nd iftheyhave been informed of the death. Identify
sIogate(next of kin or durable power of attorney [DPOA]).
Determineif patient's surrogate has been asked about organ
ndtissuedonation and validate that donation request form
hsbeensigned. Notify organ request team per policy.
Providefamily members and friends a private place to gather.
Allowthem time to ask questions (including those about
medicalcare) or discuss grief.
Askfamilymembers if they have requests for preparation or
vievingof the body (e.g., washing the body, position of body,
Şecialclothing, shaving). Determine if they wish to be
Mesentor help with care of the body.
1.Cntactsupport person (e.g., pastoral care, social work) to stay
aithfamilymembers not helping to prepare the body.
intimelymanner a bereavement care plan after patient's
ahenfamilyremains the focus of care (NCP, 2018).
Cnsult health care providers' orders for special care
directivesor specimens that are to be collected.
Performhandhygiene; apply clean gloves, gown, or
protective barriers.
Asesgeneralcondition of the body and note presence of
resings,tubes,and medical equipment. (If leaving room at
thitime,remove personal protective equipment and perform
hand hygiene.
fi
fi
fi
fi
fi
fi
SKILL 17.3 CARE OF THE BODY AFTER DEATH 503
• Honor family cultural or religious rituals when performing post-
mortem care
• Handle the body with dignity and respect for privacy
Interdisciplinary Collaboration
• Collaborate with the health care provider and support services
to assist family caregivers during this time of death, ensuring
that the body is cared for with dignity and family caregivers are
supported.
Equipment
• Clean gloves and isolation gown
• Plastic bag for hazardous waste disposal
• Washbasin, washcloth, warm water, and bath towel
• Clean gown or disposable gown for body as indicated by agency
policy
• Shroud kit with name tags
• Syringes for removing urinary catheter
• Scissors
• Small pillow or towel
• Paper tape, gauze dressings
• Paper bag, plastic bag, or other suitable receptacle for patient's
belongings to be returned to family members
• Valuablesenvelope
RATIONALE
Ensures correct patient. Complies with The Joint Commission
standards and improves patient safety (TJC, 2021).
Certi es patient's death. Autopsy can determine cause of death
and reveal more about a disease. Patient's legal representative
and the health care provider or designated requester must sign
an autopsy consent form.
Veri es that family has been notiied of patient's death to avoid
patient's inappropriate communication of this sensitive information
(Greenway and Johnson, 2016).
Federal guidelines require documentation that request has been
made.
Creates safe environment for grieving family. Questions provide
information about how they are coping with loss and their
needs.
Respects individuality of patient and family and supports their
right to having cultural or religious values and beliefs upheld.
Provides closure for those who wish to help with body
preparation.
Provides family support during an emotional time.
Implement
death
Specimens may be used in determining cause of death.
Reduces transmission of microorganisms
Validates if tissue damage was present before postmortem care.
 504 CHAPTER 17 END-OF-LIFE CARE

STEP RATIONALE

PLANNING
1. Expected outcomes following completion ofprocedure:
• Body is free of new skin damage. Careful handling of body prevents lacerations, ises, or
abrasions during postmortem care.
• Signiicant others able to express grief. Signihcant others feel supported through their loss.

Clinical Judgment Position the patient on the back using the appropriate equipment, as per agency policy. It is imporant tostraighuenbe bt
before rigor mortis begins (Greenway and Johnson, 2016).

2. Position patient supine in bed, arms at side, in a private room Provides staff with larger area for postmortem careandfor
if possible. If patient has a roommate, explain and move him members to gather in a private setting. Reducestransn
or her to another location temporarily. Remove and dispose of of microorganisms.
gloves and perform hand hygiene.
3. As soon as possible, a patient's death must be "pronounced" by These steps make it possible for an offcial deathcertihcateto
someone in authority (e.g., physician in hospital or nursing prepared.
agency or hospice nurse). This person completes forms
certifying the cause, time, and place of death. The legal form is
necessary for life insurance and nancial and property issues. If
hospice is helping, a plan for what happens after death is
already in place (National Institute on Aging [NIA), 2017).
4. Close room door and bedside curtain. Provides privacy.
5. Direct AP to gather needed equipment and arrange at bedside. Because this is often an emotional time for familymembers,
organized ef cient care is important.

IMPLEMENTATION
1. Help family members notify others of the death. Promptly Followinga death, grieving persons have dif cultyfocusingcn
notify the mortuary, as chosen by the family, and discuss details and often need guidance. Being informedincreases
a
plans for postmortem care sense of control.
2. If patient has made tissue donation, consult agency policy for Retrieval of tissues (e.g., eyes, bone, skin) may requirespecial
guidelines regarding care of the body. procedures.
3. Perform hand hygiene; apply clean gloves, gown, or Reduces transmission of microorganisms.
protective barriers.

Clinical Judgment Have family caregivers helping in postmortem care wear a goun and gloves to protect them from body uids.

4. Remove indwelling devices (e.g., urinary catheter,
endotracheal tube). Disconnect and cap off (no need to
remove) intravenous lines. Do not remove indwelling devices in
cases of autopsy (follow agency policy).
5. Clean the mouth and clean and replace dentures as soon as
possible (Greenway and Johnson, 2016). If dentures cannot
be replaced, send them with body in clearly labeled denture
cup and transport with body to mortuary. If culturally
appropriate, close mouth with rolled-up towel under chin.
6. Place small pillow under head or position according to
cultural preferences. Do not tie hands together on top of
body. Check agency policy regarding need to secure hands
and feet. Ue only circular gauze bandaging on body.
7. Close eyes by applying light pressure for 30 seconds. Use
saline-moistened gauze if corneal or eye donation is to take
place (Greenway and Johnson, 2016). Some cultures prefer
that eyes remain open.
8. Groom and arrange hair into preferred style, if known.
Remove any clips, hairpins, or rubber bands. Do not shave
patient. Some faith groups prohibit shaving.
Creates normal appearance for family viewing ofbody.
Removing intravenous catheters allows uids toleak.
Removal of tubes and lines is contraindicated if anautopsys
planned.
Gives face more natural appearance. If dentures are not
replaced, it can be very diffcult later for workers atfuneral
home to place dentures.
Patient appears natural. Weight of limp armscausesskin
damage and discoloration if hands are tied. Someagencies
require securing appendages to prevent tissuedamagewhen
body is being moved.
Closed eyes convey to some people a more peaceful andnatural
appeararnce. Gauze prevents corneal drying.
Hard objects damage or discolor face and scalp.

Clinical Judgment Shaving a recently deceased person is not recommended, because the skin is still wanm and bruising and markingmayaper
days laer (Greenway and Johnson, 2016).
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 SKILL 17.3 CARE OF THE BODY AFTER DEATH 505

STEP
slnd body parts. Some cultural practices require that
4 membersclean the body (see Box 17.2).
soiled dressingsand replace with cleandressings,
Rem
enapertape or circular gauze bandaging.
RATIONALE
Prepares body for viewing and reduces odors. Mortuary
personnel provide complete bath.
Changing dressings controls odors and creates more acceptable
appearance. Paper tape minimizes skin damage when tape is
removed.

udgment
Juc Teming a recendly dead body to the side sometimes causes the ow of exhaled air. This is a nomal event and not a sign of life.
inical

,eabsorbent
padunderbuttocks. Relaxation of sphincter muscles at time of death causes release
of urine or feces (Greenway and Johnson, 2016). Use
appropriate disposal for urine, bowel, or emesis if patient is
taking hazardous drugs.
Dlaceclean gown on body. Some agencies require gown Provides privacy and prepares body for viewing.
nval beforeplacing body in shroud.
lientify
persconalbelongings that stay with body and those Prevents loss of valuable or meaningful property.
ohegiven to family.
alifamilyrequests viewing, respect individual
cultural Maintains respect for patient and those viewing body. Prevents
onctices.Otherwise, place clean sheet over body up to chin exposure of body parts. Removing medical equipment
harmsoutsidecovers. Remove medical equipment from provides more peaceful, natural setting.
nom.Providesoft lighting and chairs.
&Allowfamily time alone with body and encourage them to Compassionate care provides family members with meaningful
ygoodbyewith religious rituals and in a culturally experience during early phase of grief. Ensure privacy and a
anpropriate
manner. Some families want time to sit quietly safe environment. Provide chair at bedside for family
ith thebody, console each other, and share memories member who might collapse.
NIA,2017).Some cultural practices include maintaining
sienceat the time of death, whereas in other cultures grief
iš
expressedwith intense emotional displays, loud wailing,
onfalling out." Do not rush any grieving process.
s Aferviewing, remove linens and gown per agency policy. Shroud protects injury to skin, avoids exposure of body, and
Placebody in shroud provided by the agency (see illustration). provides barrier against potentially contaminated body uids.

STEP 16 Body in shroud.

1.Placeidentifcation label on outside of shroud if required by
agencypolicy. Follow agency policy for marking a body that
posesan infectious risk to others. Remove and dispose of
personalprotective equipment and perform hygiene.
6.Arangeprompt transportation of body to the mortuary. If
jouanticipate a delay, transport body to the morgue.
Ensures proper identi cation of body. Reduces exposure of
morgue and mortuary staff to contamination.
Mortuary personnel get best results if embalming occurs before
full rigor mortis (i.e., stiffening of body after death) occurs.

EVALUATION
Observefamily members', friends', and signi cant others' The need for referral or help is based on evaluation of person's
Teponse to the loss. unique response to loss.
Neappearanceand condition of patient's skin during Validates condition of skin and provides information for
preparationof the body. postmortem care documentation should any inquiries come
later.
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 506 CHAPTER 17 END-OF-LIFECARE

STEP RATIONALE
Unexpected Outcomes Related Interventions
1. A family member becomes immobilized with grief and has dif culty • Enlist the help of a family member or trusted friend to provito
oiớedrestoy
functioning. and support.

2. A grieving person becomes agitated and threatens or strikes out against • Call for assistance from a psychiatric nurse practitioner
,spirtualc
others. provider, or social worker who has a relationship with thefam
• Enlist help from security staff or crisis interventionprofessionalt.
alis,
is a concern.

Recording Parents frequently want to hold their child'sbody:after

• Record time of death in the nurses' notes in electronic health Parents of deceased newborns often want amementod
record (EHR) or chart, describe any resuscitative measures baby (e.g., picture, article of clothing, footprint, orlockof
taken (if applicable), and note the name of the professional Make every effort to honor parent requests.
certifying the death
Record any special preparation of the body for autopsy or organ/ Gerontological
tissue donation. Note whom you called and who made the re- • Some older adults have very small families andsurvivineCit
quest for organ/tissue donation. of friends. Nurses and other care providers are
sometimes
Record name of mortuary and names of family members noti ed only human presence during death. Arrange forsomeone
to
at the time of death and their relationship to the deceased. with the person when death is imminent.
Record on appropriate form personal articles left on the body
(e.g., teeth or glasses), jewelry taped to skin, or tubes and lines Home Care
left in place. Note how valuables and personal belongings were Educate family members caring for a patient dying athre.
handled and who received them. Secure signatures as required about what to expect at the time of death (Table17.1).
by agency policy. • Consider the type of support that family members willnee .
Record time the body was transported and its destination. Note the time of death and make arrangements.
the location of body identi cation tags. After death in the home, follow agency guidelinesfor bt
preparation and transfer and for disposal of durablemed
Special Considerations equipment (e.g., tubing, needles, syringes), soiled
dressings
:
Vulnerable Populations linens, and medications. Instruct family members insafezs!
Pediatric proper handling and disposal of medical waste.
Offer family members, especially parents, the opportunity to be Ensure that family caregivers have resources tosupport
them
with the child throughout the dying process and to help with grieving, such as local counselors or hospiceorganizationsa
body preparation. needed.

TABLE 17.1
Physical Signs and Symptoms in the Final Stages of Dying
Physical Signs and Symptoms Rationale Intervention
Cooiness, color, and temperature change in Peripheral circulation diminished as blood Place socks on feet. Cover with lightblanket
hands, ams, feet, and legs; motting of legs: shunts to vital organs Do not use electric blanket becauseperson
perspiration Patient may feel cool to touch, but core is unable to report excess heat.
temperature normal

Increased sleeping Decreased energy, psychological withdrawal, Spend time with person; hold his or herhand
medications Speak to person, even if no response.

Disorientation, confusion of time, place, person Metabolic changes, medications, changing ldentify self by name; reorient person toime
sleep/wake cycles, decreased oxygenation and place. Decrease environmentalstimu

Incontinence of urine and/or bowel Decreased muscle tone and consciousness Change bedding as appropriate. Use bedpads
try not to use indweling catheters.

Upper airway secretions; noisy respirations Decreased cough re ex, inability to expectorate Elevate head with pillow or raise head ofbed
secretions or clear throat, relaxation of glottis, turn head to side to drain secretions.Suctan
decreased muscle tone minimally.
Restlessness Metabolic changes and decrease in oxygen to Calm patient by speech and action;reduce
brain light, rub back, stroke arms, or readalbud.
Do not use restraints.
Decreased intake of food and uids, nausea Blood shunted away from gastrointestinal (GI) Do not force patient to eat or drink: giveice
tract, causing decreased Gl motility and chips or popsicles if desired, Providemouth
anorexia; ketosis care.
Adapted from Touhy TA, Jett KF: Ebersole and Hess' gerontological nursing and healthy aging., ed 5, St. Louis, 2018, Elsevier.
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 CHAPTER 17 END-OF-LIFE CARE 50

American Association of Colleges of Nursing (AACN): CARES: competenci

AINICALREVIEW TIONS and recommendations for educating undergraduate nursing students. Preparir
nurses to care for the seriously ll and their families, 2016. https:/www.aacnnursin
enursecaring for an 89-year-old Hindu Woman who has a 10-
pthe org/Portals/42/ELNEC/PDF/New- Palliative-Care-Competencie
v ofmetastaticbone cancer. The patient has been admitted for pdfver= 2017-07-27-151036-973. Accessed August 15, 2020.
xe andhasexpressedto herfamily that she does not want American Cancer Society (ACS): Physicalchangesas you nea the end of life, 2019:
essive therapyand wants to be made comfortable. She does https://www.cancer.org/treatment/end-of-life-care/nearing-the-end-of-life
nn avancedirective;her threedaughters are at the bedside physical-symptoms.html. Accessed August 15, 2020.
American Cancer Society (ACS): Developing a pain control plan, 2019b. https:
and aeunsureas to the type of care their mother should receive.
www.cancer.org/treatment/treatments-and-side-effects/physical-side-effect
gg tothedaughtersspeakabout an advancedirective, you pain/developing-a-pain-control-plan.html. Accessed August 15, 2020.
some inaccurateinformation. Which statement made by the American Cancer Society (ACS): What is an Advance Directive? 2019c. https:
9dhtersisinaccurate regarding advance directives? www.cancer.org/treatment/fnding-and-paying-for-treatment/understanding
e nursesarehelpingmom to set realisticgoals for her plan of nancial-and-legal-matters/advance-directives/what-is-an-advance-health
care-directive.html. Accessed July 21, 2019.
cae.
American Nurses Association (ANA): The ethical responsibility to manage pain and th
think anadvance directive can help mom make medical
sffering it cases, 2018. https//www.nursingworld.org/practice-policy/nursing
dacsionsfor herself." excellenceļof cial-position-statements/id/the-ethical-responsibility-to-manage
tt t00S00nto make an advance directive; mom can speak for pain-and-the-suffering-it-causes/. Accessed July 23, 2019.
hersel now. " Arends J, Bachmann P, Baracos V, et al: ESPEN guidelines on nutrition in cance
Womtalked about having a 'do not resuscitate' (DNR) order; we patients, Clin Nutr 36(1 ):11, 2017.
shoudtalk to her about that. Burchum JR, Rosenthal LD: Lehne's phamacology for nuTsing care, ed 10, St. Louis
2019, Elsevier.
. Te faniy asks you about palliative care. You explain that the goals Centers for Disease Control and Prevention (CDC): CDC Gideine for Prescrbiny
doalatvecareinclude which of the following? (Select all that Opioids for Chrơnic Paàn-United States, 2019. https://wwwcdc.gov/drugoverdose
prescribing/guideline.html. Accessed August 14, 2020.
1.Providepatients relief from pain Centers for Discase Control and Prevention (CDC): What is health literacy, 2020
2 Promote perspective that dying is not a natural process https://www.cdc.gov/healthliteracy/learn/index.html. Accessed December 5
2020.
3Atfemptto hasten the disease path
Finucane AM, et al: The experiences of caregivers of patients with delirium, anc
4 Help the family caregivers cope
their role in its management in palliative care settings: an integrative literature
5Enhancepatient's quality of life review, Psychooncology 26:291, 2017.
1Yourpatient is becoming restless and complaining that she is having Given BA, Reinhard SC: Caregiving at the end of life: the challenges for family care
totblebreathing. Which of the following symptoms would you givers, Generations 41(1):50, 2017.
egectto nd when assessing this patient? (Select all that apply) Gökler-Danışman I, et al: Experience of grief by patients with cancer in relation to
perceptions of illness: the mediating roles of identity centrality, stigma-induced
1. Rapid noisy breathing
discrimination, and hopefulness, J Psychosoc Oncol 35(6):776, 2017.
2 Warm skin to touch Greenway J, Johnson P: How to care for a patient after death in hospital, Nurs Stand
3 Fightened facial expression 30(33):36, 2016.
4.Ouiet breathing Harman SM, Bailey FA: Palliative care: the last hours of day and life, 2020, UpToDate.
5. Clenched sts https://www.uptodate.com/contents/palliative-care-the-last-hours-and-days-of-life.
Accessed August 15, 2020.
Ybrpatientdied 15 minutes ago with one of her daughters at the
Hockenberry MJ, et al: Wong's nursing care of infants and children, ed 11, St. Louis,
bedside.The daughter comes out of the room, hugs you, and 2019, Mosby.
epressesto you that she is glad her mother is no longer suffering. Hospice Foundation of America: Hosțpice care and resources, 2018. http://www.hos-
Basedon this interaction, which of the following statements would picefoundation.org/Hospice-Care. Accessed July 21, 2019.
beaporopriateresponses to the daughter? (Select all that apply) Kim S, Seo M: Description of good patiernt care at the end of life, Appl Nurs Res
1. "t is not right to be joyful when someone dies." 32:245, 2016.
Kirby E, et al: "It doesn't exist..": negotiating palliative care from a culturally and
2. Do you need me to call anyone for you?"
linguistically diverse patient and caregiver perspective, BMC Palliat Care
3. Do you have a request for the way the body is prepared?" 17:90, 2O18.
4. "Iwillcall our support
person to come be with you." Latha SM, et al: Parent's perspectives on the end-of-1life care of their child with
5 "Doyou have the exact time of death so l can record it?" cancer: Indian perspective, Indian J Palliat Care 22(3):3 17, 2016.
.Bzsedon the patient's Hindu culture, you will care for the patient National Center for Complementary and Integrative Health (NCCIH): Relaxation
aerdeathin a speci c manner. Which of the following techniques for health, 2016. https://nccih.nih.gov/health/stress/relaxation.htm.
Accessed August 14, 2020.
OnSderationswill you focus on in the care of this patient? (Select
National Consensus Project for Quality Palliative Care (NCP): Clinical practice guide-
d thatapply)
lines for quality palliative care, ed 4, 2018. https://www.nationalcoalitionhpc.org/
1.Ensurethere is cheerful Hindu music playing in the room. wp-content/uploads/20O18/10/NCHPC-NCPGuidelines_4thED_web_FİNAL.
2.Thedaughter may choose to chant in her mother's ear. pdf. Accessed August 15, 2020.
3.Thedaughters will wash their mother's body. National Institute on Aging (NIA): End of life: what to do after someone dies, 2017.
.SingaChristianprayer for the woman to return to Jesus. https://www.nia.nih.gov/health/what-do-after-someone-dies. Accessed July 23,
2019.
D.Alowdaughters to make confessions at the mother's bedside.
O'Brien MR, et al: Meeting patients' spiritual needs during end-of-life care: a
qualitative study of nurses' and healthcare professionals' perceptions of spiritual
GttheEvolvesite for Answers to Clinical Review Questions. care training, J Clin Nrs 28(1-2): 182, 2019.
Parisi A, et al: The relationship between substance misuse and complicated grief: a
systematic review, J Subst Abuse Treat 103:43, 2019.
REFERENCES Peng CS, et al: Music intervention as a tool in improving patient experience in
palliative care, AmJ Hosp Palliat Care 36(1 ):45, 2019.
cy forHealthcareResearch and Ouality (AHRO): Teach-Back: Interven- Pirschel C: Ethical dilemmas at the end of life, ONS Connect 31(9):10, 2016.
ck SartGuideFullPage,Rockville, MD, March 2020,Agency for Rainer ), et al: Ethical dilemmas in nursing: an integrative review, J Clin Nurs
niealthcareResearch and Quality. https://www.ahrq-gov/health-literacyl 27(19-20):3446, 2018.
qulity-tesources/tools/literacy-toolkit/healthlittoolkit2-tool5.html. Accessed Rovers JJE, Knol EJ, Pieksma J, et al: Living at the end-of-life: experience of time
August 15, 2020.
of patients with cancer, BMC Palliat Care 18(1 ):40, 2019.
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