Helping patients and
Families with End-of-Life
Decisions
A Competency for
Hospice Social Workers
Gail Henson, Ph.D.
Hospice Institute, Bellarmine University
Why have such a workshop about
facilitating end-of-life discussions?
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You as the Hospice Social Worker have significant
training in family systems and in psychosocial
strategies that are especially valuable.
Patient autonomy is paramount and you understand
that.
Advances in medicine & technology make decisions
increasingly complex.
Conflicting values between patient and family or
among family members
Limits in family knowledge about or comprehension of
treatment options, prognosis
Limits in family resources
Accommodation of cultural perspectives on end-of-life
Knowledge, skills and attitudes can always grow in
order to deal with….
As social workers you….
Manage a LOT!
Let’s see what that looks like!
Interactive exercise 1
See
Handout
Introduction
Objectives for workshop
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1. Identify common end-of-life decisions Hospice
social workers help patients and families make
2. Identify NHPCO Core Clinical Skills for
Hospice/Palliative Care Social Workers and
National Association of Social Workers Standards
of Social Work Practice in Palliative and End of
Life Care relevant to your experience at Hospice.
3. Identify knowledge, skills, and attitudes
valuable to develop as Hospice social workers in
helping patients and families make end-of-life
decisions.
Objectives
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4. Identify individual challenges or barriers you
encounter as a Hospice social worker discussing
end-of-life decisions with patients and families.
5. Evaluate case studies about Hospice social
workers helping patients and families make endof-life decisions.
6. Design a plan and strategies for developing
knowledge, skills, attitudes, values to make
discussions related to end of life decision-making
more effective for patients and families.
7. Demonstrate skill in facilitating end-of-life
discussions between patients and families.
So what do you need to talk with families
more effectively about EOL Decisions?
 Knowledge?
 Skills?
 Dispositions?
Objective 1
Identify common end-of-life
decisions Hospice social workers
help patients and families make.
Has the nature of decisions or the
manner of decision-making
changed with Open Access or the
Experience Model?
See
Handout
Objective 1
Objective 2 Professional Standards
 NASW
Standards of Social Work
practice in Palliative and End of Life
Care
NHPCO Core Clinical Skills for
Hospice/Palliative Care Social Workers
 JCAHO Standards related to Social Work
Practice and competency
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See
Handout
Objective 2
NHPCO Core Clinical Skills for
Hospice/Palliative Care Social Workers
 1.
Assessment process
 2. Co-Case Management/Team work
 3. Interventions/counseling
 4. End-of-life Care Planning *
 NHPCO
Standards relate to JCAHO
Standards, an important issue in this
See
tightly regulated work.
Handout
Objective 2
Assessment Process- NHPCO
 Psychosocial
history
 Mental health
status
 Sexuality
See
Handout
Objective 2
 Spirituality
 Risk
Assessment
 Care Plan
Development
 Long-Term
Care Planning
Co-Case Management/Team Work
NHPCO
 Hospice
Program
criteria
 Confidentiality
 Advocacy
 Proactively
accessing
resources
 Insurance
Benefit
 Care
planning
with multiple
disciplines
 Working closely,
proactively with
RN/Case
manager
 Documentation
 Infection control
See
Handout
Objective 2
Interventions/counseling
NHPCO
Working with
Diversity
 Interviewing skills
 Supportive
counseling with
adults, children,
adolescents
 Patient/family
education
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Life Review
 Crisis intervention
 Suicide
preventions/
interventions
 Symbolic messages
of the dying
 Loss and grief
theory
See
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Handout
Objective 2
End-of-Life Care Planning*
NHPCO
Knowledge of
DPOA, Living Wills,
Directives to
Physicians
 Decision-making
capacity/patient
representatives
 Provision of Care
for Dependents
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Signs and
Symptoms of
Impending Death
 Rituals and
Practices
 Funeral Planning
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This is our emphasis
See
Handout
Objective 2
Objective 2
NASW Standards of Social Work practice in
Palliative and End of Life Care—
Ethics and values
 Knowledge
 Assessment
 Intervention/treat
ment planning
 Attitude/selfawareness
 Empowerment and
advocacy
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Documentation
 Interdisciplinary
teamwork
 Cultural
competence
 Continuing
education
 Supervision,
 leadership,
See
training
Handout
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Objective 2
Exercise for Objective 2
 Using
the NHPCO and NASW
guidelines, put an asterisk to identify
two areas which you demonstrate
competence (a, b)
 Which are most relevant to your
work as a Hospice social worker?
See
Handout
Objective 2
Objective of workshop 3
Identify knowledge, skills,
attitudes, values critical to
Hospice social workers in
discussing end of life
decisions
See
Handout
Objective 3
Objective 3 What do you need?
 What
knowledge, skills, attitudes do
you routinely use in discussing EOL
issues with patients and their
families?
 Please
journal on your handout.
 Then discuss with your table.
See
Handout
Objective 3
Objective 4 What challenges does
the decision-making process with
patients and family pose?
Identify frustrations,
challenges or
barriers you
encounter as a
Hospice social
worker in
addressing end-oflife decisions with
patients and families
Decision issues
 Style issues
 Word choice issues
 Decision-making
ability
 Conversation
openers
See
 Wrong
Handout
Objective 4
decisions?
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The mere thought of death
Makes patient and
family decisionmaking tough for all
concerned.
Just makes you want
to……..sometimes.
Death
In the
Sickroom
Munch
Have you
experienced
a situation
like this?
“The Dead Mother”
Edward Munch
“If I take her off the
feeding tube, she’ll
starve to death.”
a.Issue-related challenges. In what situations
have you experienced frustration when patients
don’t make a decision—or do not communicate a
decision they may have made privately?
Some of the decisions
social workers express
the need for patients
to decide include
 *guardianship for
children
 *who will be
healthcare surrogates
 *advance directives
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*writing a will
*not making an active
decision about
treatment
What else would you
add?
Decision-making
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Do you have any other comments about the
frustration expressed by one Hospice social
worker with patients who won’t make decisions?
“Not to decide is to decide,” said the social
worker.
Can you identify any decision-making situations
in which the challenges/barriers/or frustrations
might come from within you?
Can you identify any decision-making situations
in which the challenge or barrier might come
from the patient, family or another source?
Patient associated barriers to clear
end-of-life treatment decisions
Cultural diversity (Chinese
American=disrespect to discuss EOL)
 Lack of familiarity with health care system
 Educational background
 Desire to delegate decisions entirely to
family.
 Awareness of hospice services
 Trust in family members
 Lack of understanding about what CPR,
IVs, artificial hydration really do.
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Haley, “Family issues…” 2002
Challenges in Decision-making
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Communication style issues.
Sometimes communication styles can
affect the effectiveness of your
interactions with the family and patient
when making end-of-life decisions.
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What situations might require you to take a
more direct style?
What situations or decisions might make you
take a non-directive style?
Word choice
Challenges in decision-making
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Decision making strategies. Decision-making
about end-of-life issues often is a chaotic, stressfilled time for all participants. Numerous models
of decision-making exist, such as the one below.
1. Decision identification
2. Decision analysis
3. Solution criteria
4. Solution suggestions
5. Solution evaluation & selection
6. Solution implementation
Identify one situation in which you have helped a
patient and/or family make a decision about some
aspect of the end-of-life. How did the decision
actually get made?
Decisions involving medical futility
 Miscommunication
 Conflict:
family member or health
care surrogate may have different
goals, values*
 Misunderstandings over prognosis
 Personal factors like guilt, distrust
 The family member/surrogate may
stand to benefit from death
EPEC, Module 10
O.A.S.I.S. Exercise
 Open—
Articulate the
question/problem/issue (does the
person perceive there to be an
issue/problem/question)
 Search
for solutions
 Integrate options into action
 Study and evaluate
So you have to talk—how to get
started
Allow the patient to
talk about
whatever—they
may give you an
opening…
“When I’m no
longer here, I want
you to have this…”
“It seems like every
friend I have is
gone…”
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Answer such
leading statements
with responses
that invite more
conversation
“You seem to feel
that life is getting
short…”
“It must be getting
very lonely for
you…”
Case studies
 Please
examine the case studies in
the materials provided.
 What decisions have to be made?
 Identify the knowledge, skills, and
attitudes the Hospice social worker
must have to deal with them.
 Demonstrate some possible
See
Handout
responses to this case.
Objectives 5, 7
This addresses Objectives 5 and 7
Now make it personal……
Objective 6 Develop a personal plan
for developing your knowledge,
skills, or attitudes to use when
helping patients and families make
end-of-life decisions
See
Handout
Objective 6
Objective 6 Your Personal Plan
What do I
need/want?
Goal/end
Resources/
Strategies to
achieve goal
Knowledge
Skills
Attitudes
See
Handout
Objective 7
Role playing
 Select
one of the frustrating or
challenging situations in end-of-life
decision making with patients and/or
families that you described earlier.
 As
a table, demonstrate an effective
way to respond to the situation.
Helping patients and
Families with End-of-Life
Decisions
A Competency for
Hospice Social Workers
Gail Henson, Ph.D.
Hospice Institute, Bellarmine University