Discussion 1: Hospice Social Work Discussion 1: Hospice Social Work Hospice is a concept of care that does not accelerate death or prolong life. It provid

 

Discussion 1: Hospice Social Work

Hospice is a concept of care that does not accelerate death or prolong life. It provides support and comfort to patients and caregivers in the face of a terminal illness that is no longer responding to standard medical treatment. Hospice services are delivered by a specialized team of health care professionals to provide comfort and dignity to patients in their last days of life. Social workers are an integral part of any hospice team. The burden of working with individuals at the end of life can be significant for members of a hospice team who are confronted with death on a daily basis. Hospice social workers in particular must be mindful of issues of secondary trauma and self-care.

To prepare for this Discussion:

Review this week’s resources. Consider hospice care at the end of life and the different programs providing hospice service. Examine the quality of each program. Think about the emotional burden experienced by a hospice social worker.

Post an explanation of the importance of an interdisciplinary team in end-of-life care. 
Briefly describe different programs providing hospice care with regard to team structure and scope of services. 
Compare the roles of a social worker on a hospice team in a hospital-based program and in a home hospice program. 
Explain your feelings about the emotionally intense work of hospice care. 
Finally, explain the strategies you might consider to cope with your emotions.

Be sure to support your postings and responses with specific references to the resources and the current literature using appropriate APA format and style.

N A T I O N A L A S S O C I A T I O N O F S O C I A L W O R K E R S

Palliative &
End of Life

Care

Palliative &
End of Life

Care

National Association of Social Workers

Gary Bailey, MSW

NASW President (2003–2004)

Palliative and End of Life Care

Expert Steering Committee

Susan Blacker, BSW, MSW, RSW,

Volunteer Leader

Iraida V. Carrion, LCSW

Yvette Colón, ACSW, BCD

Pamela M. Jackson, MEd

Stuart Kaufer, CSW, ACSW

Patricia O’Donnell, DSW, LICSW, CCM

Mary Raymer, ACSW

Sherri Roff, CSW, PhD Candidate

Elizabeth Smart, MA

Sharon Hines Smith, PhD, QCSW, MSW

Mila Ruiz Tecala, ACSW, DCSW, LICSW

Katherine Walsh-Burke, DSW

NASW Staff

Elizabeth J. Clark, PhD, ACSW, MPH

Executive Director

Toby Weismiller, ACSW

Tracy Whitaker, ACSW

Karyn Walsh, ACSW, LCSW

©2004 National Association of Social Workers.
All Rights Reserved.

Contents

7 Introduction

9 Definitions

13 Background

14 Guiding Principles

15 Standards for Professional Practice

26 Standards for Professional Preparation and Development

29 References

31 Resources

31 Acknowledgements

Standards
f o r P a l l i a t i v e a n d

E n d o f L i f e C a r e

Standard 1. Ethics and Values
The values, ethics, and standards of both the
profession and contemporary bioethics shall
guide social workers practicing in palliative and
end of life care. The NASW Code of Ethics
(NASW, 2000) is one of several essential guides
to ethical decision making and practice.

Standard 2. Knowledge
Social workers in palliative and end of life care
shall demonstrate a working knowledge of the
theoretical and biopsychosocial factors essential
to effectively practice with clients and
professionals.

Standard 3. Assessment
Social workers shall assess clients and include
comprehensive information to develop
interventions and treatment planning.

Standard 4. Intervention/Treatment Planning
Social workers shall incorporate assessments in
developing and implementing intervention plans
that enhance the clients’ abilities and decisions
in palliative and end of life care.

Standard 5. Attitude/Self-Awareness
Social workers in palliative and end of life care
shall demonstrate an attitude of compassion and
sensitivity to clients, respecting clients’ rights to
self-determination and dignity. Social workers
shall be aware of their own beliefs, values, and
feelings and how their personal self may
influence their practice.

Standard 6. Empowerment and Advocacy
The social worker shall advocate for the needs,
decisions, and rights of clients in palliative and
end of life care. The social worker shall engage
in social and political action that seeks to ensure

4

that people have equal access to resources to
meet their biopsychosocial needs in palliative
and end of life care.

Standard 7. Documentation
Social workers shall document all practice with
clients in either the client record or in the
medical chart. These may be written or
electronic records.

Standard 8. Interdisciplinary Teamwork
Social workers should be part of an interdisciplinary
effort for the comprehensive delivery of
palliative and end of life services. Social workers
shall strive to collaborate with team members
and advocate for clients’ needs with objectivity
and respect to reinforce relationships with
providers who have cared for the patient along
the continuum of illness.

Standard 9. Cultural Competence
Social workers shall have, and shall continue
to develop, specialized knowledge and
understanding about history, traditions, values,
and family systems as they relate to palliative
and end of life care within different groups.
Social workers shall be knowledgeable about,
and act in accordance with, the NASW
Standards for Cultural Competence in Social
Work Practice (NASW, 2001).

Standard 10. Continuing Education
Social workers shall assume personal
responsibility for their continued professional
development in accordance with the NASW
Standards for Continuing Professional
Education (NASW, 2002) and state
requirements.

Standard 11. Supervision, Leadership,
and Training
Social workers with expertise in palliative and end
of life care should lead educational, supervisory,
administrative, and research efforts with
individuals, groups, and organizations.

5

7

Introduction

All social workers, regardless of practice settings,
will inevitably work with clients facing acute or
long-term situations involving life-limiting
illness, dying, death, grief, and bereavement.
Using their expertise in working with
populations from varying cultures, ages,
socioeconomic status, and nontraditional
families, social workers help families across the
life span in coping with trauma, suicide, and
death, and must be prepared to assess such
needs and intervene appropriately.

Social work practice settings addressing
palliative and end of life care include health
and mental health agencies, hospitals, hospices,
home care, nursing homes, day care and senior
centers, schools, courts, child welfare and family
service agencies, correctional systems, agencies
serving immigrants and refugees, substance
abuse programs, and employee assistance
programs. Thus, social work is a broadly based
profession that can meet the needs of individuals
and families affected by life-limiting illness
and end of life issues.

Social workers are challenged to provide
expertise and skill in direct services to clients
and their families. At the same time, they
have the opportunity to influence a range
of professionals, consumers, and laypersons
regarding life-limiting illness, care of the dying,
and the bereaved. The need for social workers
trained and skilled in working with palliative and
end of life care situations has increased, because
of advancements in medical technology, rising
rates of chronic illness, increasing number of
elderly people, and longer life spans.

8

Palliative and end of life care is a growing
area of practice, and social workers may feel
unprepared to deal with the complex issues it
encompasses (Csikai & Raymer 2003; Christ &
Sormanti, 1999). These standards are designed
to enhance social workers’ awareness of the
skills, knowledge, values, methods, and
sensitivities needed to work effectively with
clients, families, health care providers, and the
community when working in end of life
situations.

9

Definitions

End of Life Care

End of life care refers to multidimensional
assessment and interventions provided to assist
individuals and their families as they approach
end of life. Whether sudden or expected, the
end of a person’s life is a unique experience that
has a great impact on the person, his or her
family system, and the family legacy.

End of life decisions encompass a broad range
of medical and psychosocial determinations that
each individual may make before the end of his
or her life. No person has to make decisions;
one can delegate, with or without an advance
directive, depending on one’s capacity to do so.
Individuals may address such decisions through
advance planning, or in emergencies, when
careful consideration is not possible, they may
leave the difficult decisions to be made by family
members and friends who may be ill prepared to
decide what their loved ones might have wanted.
Such decisions can include where one plans to
spend the final months before death and the
degree of self-sufficiency one wishes at that time.
The use of personal, family, and societal resources
to attain these decisions may change, depending
on the course of a particular illness, and are
among some of the most important decisions
individuals and family members may face.

Health care and end of life decision making
crosses ethical, religious, cultural, emotional,
legal, and policy areas. The complexity of issues
includes aspects such as weighing risk and
benefit; allocation of individual, family, and
societal resources; and the recognition of
changing goals of care. It concerns individuals’

10

deepest and most dearly held fears, values, and
beliefs. Palliative and end of life issues are often
delicate and controversial and require skilled,
insightful interdisciplinary care.

There is increasing agreement that attending to
needs along the continuum of illness, coming to
terms with end of life issues, making informed
decisions and ensuring society honors them, are
vital life tasks. It is with just such a constellation
of responsibilities that social work’s values and
skills can make a significant contribution
(Kaplan, 1995).

Palliative Care

Palliative care is an approach that improves
quality of life for patients and their families
facing the problems associated with life-limiting
illness. This is accomplished through the
prevention and relief of suffering by means of
early identification and comprehensive
assessment and treatment of pain and other
physical, psychosocial, and spiritual problems.
Palliative care:
■ provides relief from pain and other

distressing symptoms;
■ affirms life and regards dying as a

normal process;
■ intends neither to hasten nor to

postpone death;
■ integrates the psychological and spiritual

aspects of patient care;
■ offers a support system to help patients live

as actively as possible until death;
■ offers a support system to help the family

cope during the patient’s illness and in their
own bereavement;

11

■ uses a team approach to address the needs
of patients and their families, including
bereavement counseling, if indicated;

■ enhances quality of life and may also
positively influence the course of illness; and

■ is applicable early in the course of illness,
in conjunction with other therapies that are
intended to prolong life, such as
chemotherapy or radiation therapy, and
includes those investigations needed to better
understand and manage distressing clinical
complications (World Health Organization,
2003).

Hospice and Palliative Care

Considered the model for quality, compassionate
care for people facing life-limiting illnesses or
injuries, hospice and palliative care involve a
team-oriented approach to expert medical care,
aggressive pain and symptom management,
and emotional and spiritual support expressly
tailored to the patient’s needs and wishes.
Support is also provided to the patient’s loved
ones. At the center of hospice and palliative care
is the belief that each of us has the right to live
and die free of pain, with dignity, and that our
families should receive the necessary support to
allow us to do so.

Hospice focuses on caring, not curing and, in
most cases, care is provided in the patient’s
home. Care also is provided in freestanding
hospice centers, hospitals, and nursing homes,
and other long-term care facilities. Services are
available to patients of any age, religion, race, or
illness. Hospice care is covered under Medicare,
Medicaid, most private insurance plans, HMOs,
and other managed care organizations.

12

Palliative care extends the principles of hospice
care to a broader population that could benefit
from receiving this type of care earlier in their
illness or disease process. No specific therapy is
excluded from consideration. An individual’s
needs are continually assessed, and treatment
options should be explored and evaluated in the
context of the individual’s values, symptoms, and
changing goals. Palliative care may segue into
hospice care if the illness progresses (National
Hospice and Palliative Care Organization,
2003).

NASW endorses the Last Acts Precepts for
Palliative Care. (The precepts can be obtained
from http://www.lastacts.org)

Bereavement

Bereavement has been defined by several experts
as the objective situation of a person who has
experienced the loss of a significant person or
other attachment figure.

Grief

Grief is a reaction to loss, and, for each person
who has sustained a loss, is an individual
experience. Certain losses affect entire group
systems such as families, communities, cultures,
and countries. Grief affects people from every
standpoint, including physical, emotional,
behavioral, cognitive, and spiritual.

13

Background

During the past decade, consumer advocacy
groups, health professional organizations, and
government agencies have paid increased
attention to the quality and accessibility of care
along the continuum of illness and at the end
of life. As a result, health care professions are
focused on their own ability to train members
of their respective disciplines and to contribute
to the building of a knowledge base for
excellence in care. Social work is no exception.

A 2002 Social Work Leadership Summit on
End of Life and Palliative Care addressed the
need for a formalized collaborative effort in
the social work profession that focuses on
palliative and end of life care. During this
meeting, participants designed an agenda for
the profession to improve care and to elevate
social work’s role and contributions in this arena
(Project on Death in America, 2002).

Building on this foundation, the National
Association of Social Workers (NASW) has
developed Standards for Social Work Practice
in Palliative and End of Life Care, a useful
practice tool for social workers. The standards
reflect core elements of social work functions in
palliative and end of life care and professional
social work practice, and are targeted toward
social workers practicing in various settings
dealing with these issues. For many practicing
social workers in palliative and end of life care,
these standards reinforce current practices. For
others, they provide an objective to achieve and
guidelines to assist in practice.

14

Guiding Principles

Social workers have unique, in-depth knowledge
of and expertise in working with ethnic, cultural,
and economic diversity; family and support
networks; multidimensional symptom manage-
ment; bereavement; trauma and disaster relief;
interdisciplinary practice; interventions across
the life cycle; and systems interventions that
address the fragmentation, gaps, and insufficiency
in health care. These are critical areas for imple-
menting change in palliative and end of life care.

Social workers also have expertise in analyzing,
influencing, and implementing policy change
and development at local, state, and federal levels
that can be used to make important improvements
in the care of patients living with life-limiting
illness and the dying. Social work research in the
care of the dying is also developing and addressing
many previously overlooked areas of end of life
care, such as issues concerning ethnic, cultural,
and economic diversity, substance abuse,
incarceration, interventions at different life cycle
stages, problem-solving interventions, and
intervention in community contexts.

Social workers are concerned with enhancing
quality of life and promoting well-being for
individuals, families (defined broadly), and
caregivers. When confronting issues related to
palliative and end of life care, social workers
have a multidimensional role as clinicians,
educators, researchers, advocates, and community
leaders. When confronting ethical dilemmas in
palliative and end of life care, social workers can
draw on the principle of client self-determination
in matters where clients or their proxies are faced
with such issues (National Association of Social
Workers, 2003).

The scope of social work in palliative and end of
life care extends across many practice settings
and populations, and requires intervention at the
individual, family, group, community, and
organizational levels. The standards may be
regarded as a basic tool for social work practice
in palliative and end of life care, although
practice priorities may vary among settings.

15

Standards for Professional Practice

Standard 1. Ethics and Values
The values, ethics, and standards of both the
profession and contemporary bioethics shall
guide social workers practicing in palliative and
end of life care. The NASW Code of Ethics
(NASW, 2000) is one of several essential guides
to ethical decision making and practice.

Interpretation:

Social workers who practice in palliative and end
of life care must be prepared for challenges that
encompass evaluation of ethical dilemmas and
value conflicts and consider questions related to
religion, spirituality, and the meaning of life.
To be an effective practitioner in this area,
specialized training in palliative and end of
life care is preferred.

The minimal knowledge base needed for work
in this practice area includes an understanding
of the following basic ethical principles:
■ Justice: the duty to treat all fairly, distributing

the risks and benefits equally
■ Beneficence: the duty to do good, both for

individuals and for all
■ Nonmaleficence: the duty to cause no harm,

both for individuals and for all
■ Understanding/Tolerance: the duty to

understand and to accept other viewpoints,
if reason dictates that doing so is warranted

■ Publicity: the duty to take actions based on
ethical standards that must be known and
recognized by all that are involved

■ Respect for the person: the duty to honor
others, their rights, and their responsibilities,
as showing respect for others implies that we
do not treat them as a mere means to our end

16

� Universality: the duty to take actions that
hold for everyone, regardless of time,
place, or people involved

� Veracity: the duty to tell the truth
� Autonomy: the duty to maximize the

individual’s right to make his or her own
decisions

� Confidentiality: the duty to respect privacy
of information and action

� Equality: the duty to view all people as
moral equals

� Finality: the duty to take action that may
override the demands of law, religion, and
social customs

In addition, the social workers working in
palliative and end of life care are expected to
be familiar with the common and complex
bioethical considerations and legal issues such
as the right to refuse treatment; proxy decision-
making; withdrawal or withholding of
treatment, including termination of ventilator
support and withdrawal of fluids and nutrition;
and physician aid in dying. End of life issues are
recognized as controversial, because they reflect
the varied value systems of different groups.
Consequently, NASW does not take a position
concerning the morality of end of life decisions,
but affirms the right of the individual to
determine the level of his or her care. Particular
consideration should be given to special
populations, such as people with mental illness,
with developmental disability, individuals whose
capacity or competence is questioned, children,
and other groups who are vulnerable to coercion
or who lack decisional capacity.

17

Standard 2. Knowledge
Social workers in palliative and end of life care
shall demonstrate a working knowledge of the
theoretical and biopsychosocial factors essential
to effectively practice with clients and
professionals.

Interpretation:

The social worker possesses knowledge about
navigating the medical and social systems that
frequently present barriers to clients. Social
workers have expertise in communication, both
within families and between clients/families and
health care or interdisciplinary teams. Drawing
on knowledge of family systems and
interpersonal dynamics, the social worker is able
to examine the family’s experience in a unique
way, to conduct a comprehensive assessment,
and to assist the team to integrate
biopsychosocial, spiritual factors into their
deliberations, planning, and interactions.

Social work’s view includes an appreciation
of the socioeconomic, cultural, and spiritual
dimensions of the family’s life. As experts in
helping individuals and families maximize
coping in crisis—and at addressing the
psychosocial domains of symptoms, suffering,
grief, and loss—social workers are able to
provide intensive counseling as well as practical
services for those confronted by life-limiting
illnesses and assist with complex problems.

Essential areas of knowledge and understanding
about palliative and end of life care include:
■ the multifaceted roles and functions of social

worker clinicians
■ the physical and multidimensional stages

of the dying process

18

■ the physical, psychological, and spiritual
manifestations of pain

■ the range of psychosocial interventions that
can alleviate discomfort

■ the biopsychosocial needs of clients and
their family members;

■ the impact of ethnic, religious, and cultural
differences

■ illness-related issues such as decision making,
relationship with health care providers, dying
and death

■ the range of settings for palliative and end
of life care, including home care, nursing
homes, and hospice settings

■ the available community resources and how
to gain access to them

■ the impact of financial resources on family
decision making along the continuum of
illness and at the end of life

■ the development, use, support, and revision
of advance directives throughout the
progression of the illness

■ disparities across cultures in gaining access
to palliative and end of life care

■ the accreditation and regulatory standards
governing settings providing palliative and
end of life care

■ the needs faced by members of special
populations and their families, such as
children; those with physical, developmental,
mental, or emotional disabilities; and those
in institutionalized settings such as nursing
homes and nonmedical settings such as
correctional facilities.

Standard 3. Assessment
Social workers shall assess clients and include
comprehensive information to develop
interventions and treatment planning.

19

Interpretation:

Assessment is the foundation of practice.
Social workers plan interventions with their
clients based on assessments and must be
prepared to constantly reassess and revise
treatment plans in response to newly identified
needs and altered goals of care. Comprehensive
and culturally competent social work assessment
in the context of palliative and end of life care
includes considering relevant biopsychosocial
factors and the needs of the individual client
and the family (as defined by the client).

Areas for consideration in the comprehensive
assessment include:
■ relevant past and current health situation

(including the impact of problems such as
pain, depression, anxiety, delirium, decreased
mobility)

■ family structure and roles
■ patterns/style of communication and decision

making in the family
■ stage in the life cycle, relevant

developmental issues
■ spirituality/faith
■ cultural values and beliefs
■ client’s/family’s language preference and

available translation services
■ client’s/family’s goals in palliative and end

of life treatment
■ social supports, including support systems,

informal and formal caregivers involved,
resources available, and barriers to access

■ past experience with illness, disability,
death, and loss

■ mental health functioning including history,
coping style, crisis management skills and
risk of suicide/homicide

20

■ unique needs and issues relevant to special
populations such as refugees and immigrants,
children, individuals with severe and
persistent mental illness, and homeless people

■ communicating the client’s/family’s
psychosocial needs to the interdisciplinary
team.

Standard 4. Intervention/Treatment Planning
Social workers shall incorporate assessments in
developing and implementing intervention plans
that enhance the clients’ abilities and decisions
in palliative and end of life care.

Interpretation:

Social workers in all practice areas use various
theoretical perspectives and skills in delivering
interventions and developing treatment plans.
Initial assessments and team input inform and
guide plans of care. Social workers must be able
to adapt techniques to work effectively with
individuals from different age groups,
ethnicities, cultures, religions, socioeconomic
and educational backgrounds, lifestyles, and
differing states of mental health and disability,
and in diverse nonmedical care settings.

Essential skills for effective palliative and
end of life care include:
■ the ability to recognize signs and symptoms

of impending death and prepare family
members in a manner that is guided by
clinical assessment

■ competence in facilitating communication
among clients, family members, and members
of the care team

■ competence in integrating grief theories
into practice

21

■ competence in determining appropriate
interventions based on the assessment

■ competence in advocating for clients, family
members, and caregivers for needed services,
including pain management

■ competence in navigating a complex network
of resources and making appropriate linkages
for clients and family members

■ competence in supporting clients, families, and
caregivers including anticipatory mourning,
grief, bereavement, and follow-up services.

Interventions commonly provided in
palliative and end of life care include:
■ individual counseling and psychotherapy

(including addressing the cognitive behavioral
interventions)

■ family counseling
■ family-team conferencing
■ crisis counseling
■ information and education
■ multidimensional interventions regarding

symptom management
■ support groups, bereavement groups
■ case management and discharge planning
■ decision making and the implications of

various treatment alternatives
■ resource counseling (including caregiving

resources; alternate level of care options such
as long term care or hospice care; financial
and legal needs; advance directives; and
permanency planning for dependents)

■ client advocacy/navigation of systems.

Standard 5. Attitude/Self-Awareness
Social workers in palliative and end of life care
shall demonstrate an attitude of compassion and
sensitivity to clients, respecting clients’ rights to
self-determination and dignity. Social workers

22

shall be aware of their own beliefs, values, and
feelings and how their personal self may
influence their practice.

Interpretation:

To practice effectively, social workers in
palliative and end of life care must demonstrate
empathy and sensitivity in responding to the
pain, suffering, and distress of others. Specific
social work attitudes and responses that
encompass compassion and sensitivity in caring
for clients shall include, but not necessarily be
limited to, the following:
■ flexibility and adaptability on a daily basis,

to be able to confront human suffering
■ consistent individualization of client/client

system needs as the primary care unit
■ facilitative interactions with clients/client

systems
■ ability to communicate and work

collaboratively as an interdisciplinary
team member to achieve care goals

■ willingness to advocate for holding the
focus in palliative and end of life care on
client/client system choices, preferences,
values, and beliefs

■ awareness of compassion fatigue and the
ethical responsibility to mitigate this
condition

■ confidence and competence in professional
identify and in empowering the profession in
its vital role in palliative and end of life care.

Standard 6. Empowerment and Advocacy
The social worker shall advocate for the needs,
decisions, and rights of clients in palliative and
end of life care. The social worker shall engage
in social and political action that seeks to ensure
that people have equal access to resources to

23

meet their biopsychosocial needs in palliative
and end of life care.

Interpretation:

In advocacy efforts, social work provides unique
and essential skills and perspectives such as a
rich understanding of the person-in-
environment, communication skills, expertise in
group process and systems, a social justice
commitment, a strong background in values and
ethics, and a broad psychosocial and spiritual
knowledge base. Among the crucial components
of effective empowerment and advocacy are
identifying and defining needs from the client’s
perspective, including cultural

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