END-OF-LIFE CARE:
Module 4
Making Difficult Decisions
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Module #4
Vignette #1
It is the first day of the month and you have just started attending on the
general medicine wards. The team admits a 65 year old woman, Mrs.
G, with a new pathologic fracture of her hip. She has a history of breast
cancer metastatic to her bones and liver. Several months ago, the last
time you were attending, she was admitted with bilateral ureteral
obstruction and was treated with bilateral nephrostomies. The house
staff tell you that she does not want any surgery, radiation, or
chemotherapy, yet she ultimately wants to return home and wants to be
“full code.” The resident wonders if you could help “establish a code
status” for her.
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Module #4
Vignette #2
J.W. is a retired veterinarian who has had amyotrophic lateral sclerosis
for 2 1/2 years. He was a collegiate wrestler and has always been
athletic. He is married with two grown children and several
grandchildren. He has had a rapidly progressive course; currently, he is
able to breathe, feed himself, swallow, and propel himself in a
motorized wheelchair. Otherwise, he is completely dependent on his
wife for his ADLs. He has decided that he does not wish to be on a
ventilator or have a feeding tube. Once he reaches the stage where he
is “totally paralyzed” and can’t swallow, he would like a physicianassisted suicide. He comes to you, his primary care doctor, wanting to
find out what you can do for him when that time comes.
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Module #4
Learning Objectives
• Apply a tool for assessing preferences and
moving towards decisions
• Identify arguments for and against hastening
death
• Increase your skills in responding to requests to
hasten death
• Incorporate this content into your clinical teaching
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Module #4
Outline of Module
• Difficult decisions at the EOL
• Preferences and decision making
• A systematic approach for reaching informed
decisions
Break
• Requests to hasten death
• Pros and cons of the debate
• Strategies for responding to requests to
hasten death
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Module #4
Brainstorm
When a person is dying, what are some of the
most difficult decisions that come up?
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Module #4
Discussion
What makes these decisions particularly difficult
for you?
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Module #4
Summary
There is a lot here:
• Frustrating situations
• Strong feelings that we don’t often have a
chance to acknowledge
• A lot going on for the provider as well as the
patient and family
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Module #4
It is GOOD to Discuss
Preferences
Goals
Options
Opinions
Documentation
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Module #4
Goals of Care
• Identify the stakeholders
• Ascertain stakeholders’ cognitive understanding
• Assess stakeholders’ values
• Elicit ‘big picture’ goals first
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Module #4
What you might say...
“What is your understanding of…(your current
condition, your illness, why you are here)?”
“What have you been told about your
condition/illness?”
“What have your doctors told you?”
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Module #4
Brainstorm
• When you get to know the person better and
find out about their values, what issues tend
to emerge?
• What kinds of things are important to your
patients, what kinds of values do you learn
about?
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Module #4
Some Questions to Elicit
Values
“What are your overall goals of care?”
“I’m trying to understand how you see the big picture. We’ll
get to the specifics in a moment. Do you have a major
goal in your care? What is most important to you?”
“If you think about getting very sick, what worries you the
most?”
“Some people want to be kept alive as long as possible at
any cost, some focus on being as comfortable as
possible, and other people want only modest lifeprolonging interventions.”
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Module #4
Internally Clarify Your Own
Goals
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Module #4
Options
• Identify available options
• Present benefits and burdens
• Present probability
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Module #4
Present Benefits and Burdens
• Do your homework
• Know the basic facts before discussing difficult
decisions with the patient/family
• Benefits and burdens only make sense relative
to goals
• Present the ‘gray zone’ of decision-making, not
just extremely positive or negative scenarios
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Module #4
Discussion
• What other examples can you think of, where
clinicians need more data?
• How do you respond when you don’t know the
answer?
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Module #4
Present Probability
• For many decisions the probability of a particular
outcome is important
• Avoid exclusive use of qualitative terms
• Use percentages when possible
• Try to frame them in both ways
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Module #4
Discuss Probabilities
“Would numbers be useful to you here?
Remember, statistics are based on a
population, and you are an individual…”
“The chance of someone like you surviving
CPR is…%, the chance of not surviving
is…%”
“The chance of survival with significant brain
damage would be…%”
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Module #4
Opinions
• Incorporate patient/family preferences for
specific options
• Offer your opinion
– Separate data from opinion
– Provide a basis for your opinion
– Consider carefully what you are willing to do (an
option) and not willing to do (bottom line)
• Use neutral language
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Module #4
What You Might Say...
“Given what I know about you, it seems to me you
would probably do best with..."
“Based on what you said earlier about wanting to
die peacefully, I would recommend…”
“In my opinion, you would be best served by…”
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Module #4
Summarize and Verify the
Decision
“Now let me make sure that we all understand this
decision clearly.”
“What I heard you say was…”
“We’ve covered a lot of ground - tell me in your
own words the understanding we’ve come to.”
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Module #4
Documentation
• Record the essence of the discussion and who
participated
• Current and future preferences
• It is not enough just to write ‘DNR’ or ‘Full Code’
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Module #4
What You Might Write...
“I discussed possible tube feeding with the patient and his daughter. Possible
benefits and burdens identified. Patient said he’d never want food poured into
him if he couldn’t eat. I recommended against tube feeding at this time, and
patient and daughter agreed.”
“At this time the patient says he would like to return home under the care of his
wife and the hospice team. If his care proves burdensome to his wife or if he
should require acute symptom management, then they request that he be
transferred to the inpatient hospice unit.”
“Patient elects full code for now; if deemed terminally ill or unable to relate
meaningfully with the environment without reasonable chance of recovery, then
she would elect to change to comfort care.”
“Patient (or surrogate) requests DNR status.”
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Module #4
Role Play
Assess patient preferences: Take the GOOD
Steps
• Goals of Care
• Options
• Opinions
• Documentation
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Module #4
Debrief
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Module #4
Dealing with Conflict
• Focus on shared goals
• Keep communications open
• Use time as an ally
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Module #4
Summary
Discussing patient preferences is not always easy,
but you can significantly improve the skills needed
for this task.
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Module #4
Difficult Decisions Regarding
Requests for Hastening Death
The case has developed into the complexities of a
request for physician-assisted suicide…
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Module #4
What is Physician-Assisted
Suicide (PAS)?
• Physician provides the means to hasten death,
which the patient uses
• Legal under certain circumstances in Oregon
• PAS is not euthanasia
– Euthanasia = direct administration of a medication by
the physician or nurse with the intent of ending life
– Euthanasia is illegal everywhere
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Module #4
Brainstorm
Setting aside your own personal beliefs, why do
you think patients would consider hastening their
own death?
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Module #4
Arguments For and Against
PAS
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Module #4
Discussion
How might some of these arguments apply in Mr.
Smith’s case, both in favor of, and against,
providing him with the means to end his life?
Try to see both sides, for the purpose of this
learning experience
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Module #4
Summary
There is real diversity and heterogeneity of opinion
among people you respect, including your:
• Colleagues
• Patients
• Families
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Module #4
Strategies for Response to
Requests to Hasten Death
• Reaction
• Assessment
• GOOD
• Additional resources
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Module #4
Reaction
• Avoid a communication cut-off
• Don’t over-react or under-react
• Express empathy with the situation
• Understand that the request does not require an
immediate yes/no response
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Module #4
Assessment
• Depression
• Pain
• Serious misunderstandings
• Unmet needs
• Correctable social situations
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Module #4
Adapt the GOOD steps: Goals
Explore what’s going on
– “Help me understand why you’re making this request”
– “Why are you thinking about this issue?”
– “Is there something that you fear?”
– “What is your goal in wanting to hasten death?”
Who would be affected by this?
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Module #4
Options
• Explore what is available to address underlying
issues
• Explore other options and consequences
• Elicit support
• Arrange follow-up visits (this is key)
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Module #4
Opinions
• Bottom line statement
• Elicit stakeholders’ opinions
• Express your opinion/position
– “I will do everything possible to treat your pain.”
– “I believe I could keep you pain free.”
– “When the time comes, I’ll help keep you
comfortable.”
• Negotiate conflict
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Module #4
Additional Resources
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Psychiatrist
Psychologist
Chaplain
Pastoral care
Community leader
Social worker
Patient’s support system
Ethics Committee member
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Module #4
Conclusion
• The biggest mistake is not to think about these
issues
• You will be asked the question
• Whatever your bottom line, this request calls for
an empathic response
http://www.growthhouse.org/stanford
Module #4
Learning Objectives
• Apply a tool for assessing preferences and
moving towards decisions
• Identify arguments for and against hastening
death
• Increase your skills in responding to requests to
hasten death
• Incorporate this content into your clinical
teaching
http://www.growthhouse.org/stanford
Module #4
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End-of-Life Care