Chapter 13

Palliative and End-of-Life

Care
Palliative Care

Interdisciplinary collaboration (single plan of

integrated care)
Comprehensive symptom management,
psychosocial care, and spiritual support needed to
enhance the quality of life for any person with
advanced illness
Appropriate for patients at any age and at any state
in a serious illness even while pursuing disease-
directed or curative therapies and extending into
illness

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Institute of Medicine 2014

Dying in America: Improving Quality and Honoring

Individual Preferences Near the End of Life.
Recommendations for improving end-of-life care
o Widespread and timely access
o Comprehensive coverage
o Improved clinician–patient communication
o Greater emphasis on advance care planning
o Professional education and development
o Stronger public education and engagement

Copyright © 2022 Wolters Kluwer · All Rights Reserved

National Consensus Project

Guidelines for a more comprehensive and human

approach to the care of the seriously ill patient at
any state, age, setting, or prognosis.
2018 update
Refer to Chart 13-1

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Settings for Palliative and End-of-Life
Care

Institution-based
o Hospital
o Long-term care facility
Outpatient-based
o Outpatient clinic
o Ambulatory setting
Community-based
Hospice care

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Institution-Based Palliative Care

Interdisciplinary consultation for pain management,

symptom management, goals of care discussions,
end-of-life issues, psychosocial distress, spiritual or
existential distress
Most common patients are often older with a serious
illness other than cancer and typically have a full
code status
In 2011, The Joint Commission launched
certification program for palliative care

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Outpatient-Based Palliative Care

Provide palliative care services and support to

patients and families who opt not to, or are not
eligible for, home hospice but could benefit from
comprehensive palliative care in the community

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Community-Based Palliative Care

Home-based primary care has increased in

popularity and incorporates palliative care skills, and
specialty palliative care home programs that were
developed with the goal of managing symptoms and
providing support in the home.
Covered by The Affordable Care Act

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Hospice Care

All hospice care is palliative care

Focus is on quality of life and includes realistic
emotional, social, spiritual, and financial preparation
for death
Coordinated program of interdisciplinary services
provided by professional caregivers and trained
volunteers to patients with serious, progressive
illnesses that are not responsive to cure
Recognized by Medicare in 1983 (Chart 13-2)
Goal is patient remains at home

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Principles of Hospice Care

Death must be accepted

Patient’s total care best managed by
interdisciplinary team whose members communicate
regularly
Pain and other symptoms must be managed
Patient/family should be viewed as single unit of
care
Home care of dying necessary
Bereavement care must be provided to family
members
Research and education should be ongoing
Copyright © 2022 Wolters Kluwer · All Rights Reserved
Four Levels of Hospice Care

Routine home care

Inpatient respite care
Continuous care
General inpatient care

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Most Common Hospice Diagnoses

Dementia
Heart disease
Lung disease

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Question #1

A family is asking why their father with end-stage

COPD is being referred to hospice care. Which of the
following would be the best response from the nurse?
A. Hospice care provides complete pain control
B. Hospice assists the family and patient to prepare
for death
C. Hospice will follow the patient’s choice for “DNR”
status
D. Hospice is provided in the home and will allow the
family to be involved in the decisions for care

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Answer to Question #1

B. Hospice assists the family and patient to prepare

for death
Rationale: Hospice is an interdisciplinary team
approach that provides services to the patient and
family to prepare for death. Hospice care would
include pain control, but complete pain control cannot
be guaranteed. A patient’s “DNR” status respected for
all patients in any setting, not just hospice. Hospice
care can be provided in the home, hospital, nursing
home, or hospice home settings; as with all practice
areas of health care, family involvement is
encouraged if the patient chooses this.

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Communication

Tenet of palliative and end-of-life care

Nurses must be able to assess patient and family
responses to serious illness and support their values
and choices throughout the continuum of care
First, nurses must consider their own experiences
and values regarding illness and death

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Critical Points for Communication

Time of diagnosis
When treatment fails
Effectiveness of interventions
Consideration for hospice care

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Nursing Approach to Communication

Patience
o Open-ended questions to allow patient and
family to voice concerns
o Refer to Chart 13-3
Empathy
o Respond to emotion
o Refer to Table 13-3
Honesty
o Explore misconceptions and need for information

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Roles of the Nurse

Family Meetings
o Refer to Chart 13-4
Advanced Care Planning
o Refer to Chart 13-5
Symptom Assessment and Management through
stages of the dying process
o Refer to Table 13-4

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Question #2

A patient recently diagnosed with a terminal illness

tells the nurse, “I am afraid to die but I don’t want to
hang on with a bunch of tubes and medications
keeping me alive.” Which of the following is the most
appropriate way for the nurse to respond?
A. “There is nothing to fear, you can stop treatment
at any time.”
B. “Don’t worry, your family can make those
decisions later.”
C. “Have you signed a Do Not Resuscitate Order?”
D. “You can complete an advance directive; has
anyone explained that option to you?”
Copyright © 2022 Wolters Kluwer · All Rights Reserved
Answer to Question #2

D. “You can complete an advance directive; has

anyone explained that option to you?”
Rationale: The patient, while of sound mind, can make
decisions now about future interventions. An advance
directive communicates patient preferences regarding
end-of-life care for when the patient is terminally ill
and unable to verbally state their wishes, providing
the patient control over their future health care
decisions should they become incapacitated. The
nurse should never disregard a patient’s fear of dying
nor ask the patient to wait to make a decision about
their care.

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Symptom Assessment and Management

Physiologic changes
o Pain
o Dyspnea
o Impaired secretions
o Anorexia and cachexia
o Anxiety and depression
o Delirium
Time of death

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Hope and Meaning in Illness

Hope: a multidimensional construct that provides

comfort as a person endures life threats and
personal challenges
Hope-fostering
o Spirituality/faith, relationships with loved ones,
humor, positive memories
Hope-hindering
o Isolation, uncontrollable pain/discomfort,
abandonment

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Nursing Interventions for Hope

Answer questions honestly and accurately in ways

the patient can understand
Listen attentively
Support patient choices
Facilitate communication with family

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Culturally Sensitive and Spiritual Care

Assess values, preferences, beliefs, expectations

and practices.
Nurse must set aside own assumptions and attitudes
toward death and dying
Spirituality contains features of religiosity; however,
the two concepts are not interchangeable
Refer to Chart 13-8

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Grief, Mourning, Bereavement

Grief refers to the personal feelings that accompany

an anticipated or actual loss
Mourning refers to individual, family, group, and
cultural expressions of grief and associated
behaviors
Bereavement refers to the period of time during
which mourning for a loss takes place

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Uncomplicated Grief and Mourning

Grief is not a linear process

There is no right way to cope
Nurse must promote family cohesion during grief
and mourning
Provide opportunities after death for social and
cultural rituals to facilitate acceptance of death and
loss as permanent

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Question #3

Which actions by a surviving family member indicate

uncomplicated grief and mourning?
A. Soon after death speaking of the deceased loved
one in the past tense
B. Refusing to discuss funeral arrangements
C. Reluctance to attend a survivors’ support group
D. Avoiding family gatherings

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Answer to Question #3

A. Soon after death speaking of the deceased loved

one in the past tense
Rationale: Acceptance of death begins with
reconciliation of the fact that the deceased is gone
and will not return. Some choose to preplan funerals
with the soon to be deceased to provide the means for
patient and family to begin to accept the reality and
finality of death. Those adjusting to life after the
death of a loved can recognize the permanence of loss
and move forward with the help of support groups,
and other family members. Attending support groups
and family gatherings is a healthy response by a
survivor with uncomplicated grief.

Copyright © 2022 Wolters Kluwer · All Rights Reserved

Special Issues for Nurses at End of Life

Ethical dilemmas
Care/cure dichotomy
Resiliency

Copyright © 2022 Wolters Kluwer · All Rights Reserved