10
Palliative and End-of-Life Care
Amisha Parekh de Campos, Shila Pandey, and William E. Rosa
http://evolve.elsevier.com/Lewis/medsurg/
CONCEPTUAL FOCUS
Coping Palliative Care
Ethics Spirituality
Family Dynamics
Health Care Organizations
LEARNING OUTCOMES
1. Distinguish the purpose of palliative care and hospice care. 6. Explain the process of grief and bereavement at the end of
2. Describe the physical and psychologic manifestations at the life.
end of life. 7. Discuss the special needs of the nurse who cares for dying
3. Discuss ethical and legal issues related to palliative care. patients and their families.
4. Describe the nursing management of the dying patient. 8. Examine cultural and spiritual issues related to palliative
5. Explore the special needs of family caregivers in palliative care.
care.
KEY TERMS
advance care planning end of life
advance directives grief
anticipatory grief hospice
bereavement palliative care
brain death primary palliative care
death spirituality
do-not-resuscitate (DNR) order
Palliative care involves assessment and management of pain
PALLIATIVE CARE and other symptoms, support of caregiver needs, and care coor-
Palliative care is the active holistic care of persons with serious dination. The approach to care is patient- and family-centered.
health-related suffering from severe illness.1 The severe illness The goal is to reduce the burden of health-related suffering while
may be acute or chronic, with a high mortality rate. Patients improving quality of life (Fig. 10.1). Palliative care has been shown
with serious illnesses experience a significant burden of suf- to (1) improve quality of life for those with chronic illness, (2)
fering. The illness may impact quality of life and role function, decrease costs for their health care, and (3) ease caregiver burden.5
and create increased burden related to symptoms, treatment, or Palliative care can be provided as the primary focus of care
caregiver stress. or concurrently with medical/curative treatment (Table 10.1).
It is estimated that by 2060, 48 million people will die annu- Ideally, all patients receiving curative or restorative health care
ally with serious health-related suffering.2 While palliative care should receive palliative care at the same time. Care is pro-
can be started at any time, optimal benefits occur when it begins vided based on individual needs. Palliative care extends into the
following the diagnosis of a serious illness. These include neuro- period of end-of-life (EOL) care and offers patient and family
degenerative diseases, cancer, heart failure, chronic obstructive support while planning for EOL needs.6 Grief and bereavement
pulmonary disease (COPD), dementia, or end-stage kidney dis- care follows the patient’s death (Fig. 10.2).
ease.3 The growing number of people with conditions such as The American Nurses Association (ANA) and the Hospice
diabetes and heart disease contribute to the increased need for and Palliative Nurses Association suggest that every nurse
and use of palliative care.4 should deliver primary palliative care, regardless of setting. In
146
, CHAPTER 10 Palliative and End-of-Life Care 147
Palliative care
Hospice
All hospice is palliative care, but not all palliative care is hospice.
Fig. 10.3 Relationship of palliative care and end-of-life care/hospice.
Fig. 10.1 One goal of palliative care is to improve the quality of the (From Limerick M, Sutton M: Palliative care, J Oncol Navig Surviv
patient’s remaining life. (© FatCamera/iStock.com) 11:123, 2020. Reprinted with permission.)
health care professionals.8 Empathetic, respectful, and reflective
TABLE 10.1 Goals of Palliative Care communication among the patient, family, and the team is vital
• Provide relief from pain and other physical symptoms to ensuring patient- and family-centered care. Patients receive
• Maximize quality of life palliative care services in multiple settings. These include the
• Provide psychosocial and spiritual care
home, long-term and acute care, mental health agencies, reha-
• Help patients and their families determine goals of care
bilitation centers, and prisons. Many agencies have established
• Neither hasten nor postpone death; recognize dying as a natural process
• Provide support to the family and the caregivers during the patient’s
palliative care teams.
illness and in bereavement
• Recognize and respect the cultural values and beliefs of the patient and HOSPICE CARE
the family
Adapted from International Association for Hospice and Palliative Care Hospice care is a subcategory of palliative care (Fig. 10.3).
(IAHPC): Global consensus based palliative care definition, Houston, Hospice is a concept of EOL care with an emphasis on symptom
TX, 2018, The International Association for Hospice and Palliative Care. management, advance care planning, spiritual care, and family
Retrieved from https://hospicecare.com/what-we-do/projects/consen- support.9 Hospice clinicians provide compassion, concern, and
sus-based-definition-of-palliative-care/definition/.
support for patients in the last phases of a serious illness. The
main goal of hospice care is to help the patient to live as fully
Hospice and comfortably as possible while dying with dignity.
Disease-modifying therapy
Hospice care is an option when a patient has a limited life
(curative, life-prolonging, expectancy—specifically 6 months or less. The overall care
or palliative in intent) focuses on improving quality of life and maintaining comfort
while forgoing curative treatment. Hospice is often underused.
Palliative care Many wrongly assume the patient must be actively dying. On
Symptom control Bereavement
and supportive care care the contrary, it is important that the patient be referred to hos-
Presentation/ Death
pice as early as possible to ease the physical, emotional, and
diagnosis Illness Bereavement spiritual distress so common at the EOL.
Fig. 10.2 Continuum-of-care model showing integration of curative Almost half of the patients who die in the United States are
care, palliative and end-of-life/hospice care, and bereavement care. in hospice care. More than 75% of patients in hospice are over
(Redrawn from Robert Wood Johnson Foundation: The EPEC Project: the age of 65 years. Most patients have cancer, dementia, stroke,
Elements and models of end-of-life care, 1999.) or heart or respiratory conditions.9 Often hospice and palliative
care are used interchangeably. Palliative care is considered sup-
other words, all who care for seriously ill patients should pro- portive care when a serious illness is diagnosed and there is a
vide basic palliative care interventions.7 Primary palliative care need to manage symptoms and delineate care goals. All hospice
(or generalist palliative care) includes basic symptom manage- patients are under the philosophical umbrella of palliative care
ment, routine discussions about care goals, and the assessment but not all palliative patients receive hospice care.
of psychologic, social, cultural, and spiritual care.8 Specialist
palliative care clinicians offer complex symptom management,
have difficult discussions and clarify care goals, and help with
DOMAINS OF PALLIATIVE CARE
accessing the appropriate level of care. The National Consensus Project for Quality Palliative Care
The palliative care team is an interprofessional collabora- Guidelines outline 8 key domains for quality palliative care: (1)
tion. The team often includes nurses, advanced practice nurses, care structure and processes, (2) physical aspects of care, (3)
social workers, pharmacists, physicians, chaplains, and other psychologic and psychiatric aspects, (4) social aspects of care,
, 148 SECTION 2 Problems Related to Comfort and Coping
some symptoms with continued assessment and monitoring.
Structure and Symptom management considers physical, emotional, spiritual,
process
and cultural factors that can contribute to the burden of pain
and suffering related to serious illness.
Ethical and Pay close attention to the onset, quality, and severity of
Physical
legal symptoms. Note factors that worsen or relieve the symptom and
prior treatment such as medications or interventions. Consider
the impact of symptoms on function and quality of life. Timely
Care of the Psychological reassessment is needed to determine if treatments are effective,
patient nearing and if new symptoms arise, and if the patient and family can manage
end of life psychiatric the plan of care.
Domain 3: Psychologic and Psychiatric Aspects
A diagnosis of serious illness can impact the mental health of a
Cultural Social patient and family. Anxiety, depression, delirium, posttraumatic
stress disorder, and substance use may be a factor in the pro-
Spiritual, gression of the patient’s illness. The IPT can support, provide
religious, treatment, and coordinate care to manage emotional, psychoso-
existential cial, and/or existential distress.
Fig. 10.4 8 Domains of palliative care. (Created from National Consen- The nurses’ role is to ensure support for the patient and fam-
sus Project for Quality Palliative Care: Clinical practice guidelines for ily during their journey with serious illness. A social worker can
quality palliative care, ed 4, Richmond, VA, 2018, National Coalition for help manage psychologic symptoms and refer to counseling if
Hospice and Palliative Care. Retrieved from https://www.nationalcoali-
needed. Discuss any sign of suicidal ideation or a serious and/or
tionhpc.org/ncp.)
persistent mental illness immediately with the IPT. Treatment of
psychologic or mental health issues can include behavior, ther-
(5) spiritual, religious, and existential aspects of care, (6) culture apeutic, and pharmacologic interventions. Cultural or comple-
care, (7) care of the patient nearing end of life, and (8) ethical mentary therapies may be used.
and legal aspects (Fig. 10.4).5
Domain 4: Social Aspects of Care
Domain 1: Care Structure and Processes Social aspects include environmental and social factors that
Palliative care is coordinated and provided holistically. The affect the quality of life. Issues to address include access to
interprofessional team (IPT) works together to support the medication and treatment, transportation to appointments,
patient and family across all settings throughout the illness tra- financial constraints, and other social factors that surround
jectory. Nurses serve as advocates, provide direct care, coordi- persons who are uninsured, under-insured, homeless, or
nate additional care, teach, and continually re-evaluate patient undocumented.
and family needs. The IPT establishes a plan of care and con- Assess the patient and family’s social support and care envi-
tinually refines the plan based on the goals of the patient and ronment. Do they have access to reliable food, housing, and
communication with IPT members. transportation? This assessment should reflect their culture,
The initial patient assessment includes a history, examina- values, goals, and preferences. These may change over time so
tion, and discussions with the patient and family. Assess their continued reassessment is important. Identify specific roles and
understanding of the serious illness. Discuss advance care contributions of caregivers, along with resources and commu-
planning, including care goals and treatment preferences, and nity services.
review advanced directives. Obtain the patient’s medical his-
tory, medication record, and laboratory and diagnostic results. Domain 5: Spiritual, Religious, and Existential
Note the specific event or change that brought the patient into Aspects of Care
the health care setting. Do a brief review of systems. Note any Spiritual care is fundamental to addressing the suffering associ-
current symptoms. Assess for discomfort, pain, nausea, and dys- ated with serious illness.10 Spirituality is a broad concept that
pnea. Evaluate for comorbidities or acute episodes of problems, encompasses beliefs, values, and purpose related to the search
such as diabetes or headache. Ask about the patient’s food and for existential meaning and purpose. Some define spirituality
fluid intake and sleep patterns. How are they responding to the as a relationship with a supreme being that directs beliefs and
stress of a serious illness diagnosis? Consider factors related to practices. Spiritual needs do not necessarily equate to religious
the social determinants of health, caregiver support, and emo- beliefs in a higher power. A patient may not practice a partic-
tional and spiritual concerns. ular religion but have a deep spirituality. The IPT should care
for patients and families in a manner that respects their spiri-
Domain 2: Physical Aspects of Care tual beliefs and practices. The team should also respect when
Symptom management can improve the patient’s physi- patients and families decline to discuss their beliefs or accept
cal well-being and function. You can anticipate and prevent spiritual support.
Palliative and End-of-Life Care
Amisha Parekh de Campos, Shila Pandey, and William E. Rosa
http://evolve.elsevier.com/Lewis/medsurg/
CONCEPTUAL FOCUS
Coping Palliative Care
Ethics Spirituality
Family Dynamics
Health Care Organizations
LEARNING OUTCOMES
1. Distinguish the purpose of palliative care and hospice care. 6. Explain the process of grief and bereavement at the end of
2. Describe the physical and psychologic manifestations at the life.
end of life. 7. Discuss the special needs of the nurse who cares for dying
3. Discuss ethical and legal issues related to palliative care. patients and their families.
4. Describe the nursing management of the dying patient. 8. Examine cultural and spiritual issues related to palliative
5. Explore the special needs of family caregivers in palliative care.
care.
KEY TERMS
advance care planning end of life
advance directives grief
anticipatory grief hospice
bereavement palliative care
brain death primary palliative care
death spirituality
do-not-resuscitate (DNR) order
Palliative care involves assessment and management of pain
PALLIATIVE CARE and other symptoms, support of caregiver needs, and care coor-
Palliative care is the active holistic care of persons with serious dination. The approach to care is patient- and family-centered.
health-related suffering from severe illness.1 The severe illness The goal is to reduce the burden of health-related suffering while
may be acute or chronic, with a high mortality rate. Patients improving quality of life (Fig. 10.1). Palliative care has been shown
with serious illnesses experience a significant burden of suf- to (1) improve quality of life for those with chronic illness, (2)
fering. The illness may impact quality of life and role function, decrease costs for their health care, and (3) ease caregiver burden.5
and create increased burden related to symptoms, treatment, or Palliative care can be provided as the primary focus of care
caregiver stress. or concurrently with medical/curative treatment (Table 10.1).
It is estimated that by 2060, 48 million people will die annu- Ideally, all patients receiving curative or restorative health care
ally with serious health-related suffering.2 While palliative care should receive palliative care at the same time. Care is pro-
can be started at any time, optimal benefits occur when it begins vided based on individual needs. Palliative care extends into the
following the diagnosis of a serious illness. These include neuro- period of end-of-life (EOL) care and offers patient and family
degenerative diseases, cancer, heart failure, chronic obstructive support while planning for EOL needs.6 Grief and bereavement
pulmonary disease (COPD), dementia, or end-stage kidney dis- care follows the patient’s death (Fig. 10.2).
ease.3 The growing number of people with conditions such as The American Nurses Association (ANA) and the Hospice
diabetes and heart disease contribute to the increased need for and Palliative Nurses Association suggest that every nurse
and use of palliative care.4 should deliver primary palliative care, regardless of setting. In
146
, CHAPTER 10 Palliative and End-of-Life Care 147
Palliative care
Hospice
All hospice is palliative care, but not all palliative care is hospice.
Fig. 10.3 Relationship of palliative care and end-of-life care/hospice.
Fig. 10.1 One goal of palliative care is to improve the quality of the (From Limerick M, Sutton M: Palliative care, J Oncol Navig Surviv
patient’s remaining life. (© FatCamera/iStock.com) 11:123, 2020. Reprinted with permission.)
health care professionals.8 Empathetic, respectful, and reflective
TABLE 10.1 Goals of Palliative Care communication among the patient, family, and the team is vital
• Provide relief from pain and other physical symptoms to ensuring patient- and family-centered care. Patients receive
• Maximize quality of life palliative care services in multiple settings. These include the
• Provide psychosocial and spiritual care
home, long-term and acute care, mental health agencies, reha-
• Help patients and their families determine goals of care
bilitation centers, and prisons. Many agencies have established
• Neither hasten nor postpone death; recognize dying as a natural process
• Provide support to the family and the caregivers during the patient’s
palliative care teams.
illness and in bereavement
• Recognize and respect the cultural values and beliefs of the patient and HOSPICE CARE
the family
Adapted from International Association for Hospice and Palliative Care Hospice care is a subcategory of palliative care (Fig. 10.3).
(IAHPC): Global consensus based palliative care definition, Houston, Hospice is a concept of EOL care with an emphasis on symptom
TX, 2018, The International Association for Hospice and Palliative Care. management, advance care planning, spiritual care, and family
Retrieved from https://hospicecare.com/what-we-do/projects/consen- support.9 Hospice clinicians provide compassion, concern, and
sus-based-definition-of-palliative-care/definition/.
support for patients in the last phases of a serious illness. The
main goal of hospice care is to help the patient to live as fully
Hospice and comfortably as possible while dying with dignity.
Disease-modifying therapy
Hospice care is an option when a patient has a limited life
(curative, life-prolonging, expectancy—specifically 6 months or less. The overall care
or palliative in intent) focuses on improving quality of life and maintaining comfort
while forgoing curative treatment. Hospice is often underused.
Palliative care Many wrongly assume the patient must be actively dying. On
Symptom control Bereavement
and supportive care care the contrary, it is important that the patient be referred to hos-
Presentation/ Death
pice as early as possible to ease the physical, emotional, and
diagnosis Illness Bereavement spiritual distress so common at the EOL.
Fig. 10.2 Continuum-of-care model showing integration of curative Almost half of the patients who die in the United States are
care, palliative and end-of-life/hospice care, and bereavement care. in hospice care. More than 75% of patients in hospice are over
(Redrawn from Robert Wood Johnson Foundation: The EPEC Project: the age of 65 years. Most patients have cancer, dementia, stroke,
Elements and models of end-of-life care, 1999.) or heart or respiratory conditions.9 Often hospice and palliative
care are used interchangeably. Palliative care is considered sup-
other words, all who care for seriously ill patients should pro- portive care when a serious illness is diagnosed and there is a
vide basic palliative care interventions.7 Primary palliative care need to manage symptoms and delineate care goals. All hospice
(or generalist palliative care) includes basic symptom manage- patients are under the philosophical umbrella of palliative care
ment, routine discussions about care goals, and the assessment but not all palliative patients receive hospice care.
of psychologic, social, cultural, and spiritual care.8 Specialist
palliative care clinicians offer complex symptom management,
have difficult discussions and clarify care goals, and help with
DOMAINS OF PALLIATIVE CARE
accessing the appropriate level of care. The National Consensus Project for Quality Palliative Care
The palliative care team is an interprofessional collabora- Guidelines outline 8 key domains for quality palliative care: (1)
tion. The team often includes nurses, advanced practice nurses, care structure and processes, (2) physical aspects of care, (3)
social workers, pharmacists, physicians, chaplains, and other psychologic and psychiatric aspects, (4) social aspects of care,
, 148 SECTION 2 Problems Related to Comfort and Coping
some symptoms with continued assessment and monitoring.
Structure and Symptom management considers physical, emotional, spiritual,
process
and cultural factors that can contribute to the burden of pain
and suffering related to serious illness.
Ethical and Pay close attention to the onset, quality, and severity of
Physical
legal symptoms. Note factors that worsen or relieve the symptom and
prior treatment such as medications or interventions. Consider
the impact of symptoms on function and quality of life. Timely
Care of the Psychological reassessment is needed to determine if treatments are effective,
patient nearing and if new symptoms arise, and if the patient and family can manage
end of life psychiatric the plan of care.
Domain 3: Psychologic and Psychiatric Aspects
A diagnosis of serious illness can impact the mental health of a
Cultural Social patient and family. Anxiety, depression, delirium, posttraumatic
stress disorder, and substance use may be a factor in the pro-
Spiritual, gression of the patient’s illness. The IPT can support, provide
religious, treatment, and coordinate care to manage emotional, psychoso-
existential cial, and/or existential distress.
Fig. 10.4 8 Domains of palliative care. (Created from National Consen- The nurses’ role is to ensure support for the patient and fam-
sus Project for Quality Palliative Care: Clinical practice guidelines for ily during their journey with serious illness. A social worker can
quality palliative care, ed 4, Richmond, VA, 2018, National Coalition for help manage psychologic symptoms and refer to counseling if
Hospice and Palliative Care. Retrieved from https://www.nationalcoali-
needed. Discuss any sign of suicidal ideation or a serious and/or
tionhpc.org/ncp.)
persistent mental illness immediately with the IPT. Treatment of
psychologic or mental health issues can include behavior, ther-
(5) spiritual, religious, and existential aspects of care, (6) culture apeutic, and pharmacologic interventions. Cultural or comple-
care, (7) care of the patient nearing end of life, and (8) ethical mentary therapies may be used.
and legal aspects (Fig. 10.4).5
Domain 4: Social Aspects of Care
Domain 1: Care Structure and Processes Social aspects include environmental and social factors that
Palliative care is coordinated and provided holistically. The affect the quality of life. Issues to address include access to
interprofessional team (IPT) works together to support the medication and treatment, transportation to appointments,
patient and family across all settings throughout the illness tra- financial constraints, and other social factors that surround
jectory. Nurses serve as advocates, provide direct care, coordi- persons who are uninsured, under-insured, homeless, or
nate additional care, teach, and continually re-evaluate patient undocumented.
and family needs. The IPT establishes a plan of care and con- Assess the patient and family’s social support and care envi-
tinually refines the plan based on the goals of the patient and ronment. Do they have access to reliable food, housing, and
communication with IPT members. transportation? This assessment should reflect their culture,
The initial patient assessment includes a history, examina- values, goals, and preferences. These may change over time so
tion, and discussions with the patient and family. Assess their continued reassessment is important. Identify specific roles and
understanding of the serious illness. Discuss advance care contributions of caregivers, along with resources and commu-
planning, including care goals and treatment preferences, and nity services.
review advanced directives. Obtain the patient’s medical his-
tory, medication record, and laboratory and diagnostic results. Domain 5: Spiritual, Religious, and Existential
Note the specific event or change that brought the patient into Aspects of Care
the health care setting. Do a brief review of systems. Note any Spiritual care is fundamental to addressing the suffering associ-
current symptoms. Assess for discomfort, pain, nausea, and dys- ated with serious illness.10 Spirituality is a broad concept that
pnea. Evaluate for comorbidities or acute episodes of problems, encompasses beliefs, values, and purpose related to the search
such as diabetes or headache. Ask about the patient’s food and for existential meaning and purpose. Some define spirituality
fluid intake and sleep patterns. How are they responding to the as a relationship with a supreme being that directs beliefs and
stress of a serious illness diagnosis? Consider factors related to practices. Spiritual needs do not necessarily equate to religious
the social determinants of health, caregiver support, and emo- beliefs in a higher power. A patient may not practice a partic-
tional and spiritual concerns. ular religion but have a deep spirituality. The IPT should care
for patients and families in a manner that respects their spiri-
Domain 2: Physical Aspects of Care tual beliefs and practices. The team should also respect when
Symptom management can improve the patient’s physi- patients and families decline to discuss their beliefs or accept
cal well-being and function. You can anticipate and prevent spiritual support.
