Family Meetings and Shared Medical Decision Making

1
Family Meetings andShared Medical Decision Making

• Anthony J. Caprio, MD
• Assistant Professor of Medicine
• Division of Geriatric Medicine
• Center for Aging and Health
• University of North Carolina at Chapel Hill

2
Objectives

• Demonstrate the 6-step process to facilitate
  patient and family decision making
• Describe CPR facts and statistics
• Illustrate challenges in the use of language
• Manage conflict
• Summarize key features of a meeting

3
Pause and Reflect

• Your patient is an elderly man with advanced
  dementia and stage IV lung cancer. You just
  diagnosed pneumonia and you start to discuss
  code status with his wife. She says I want
  you to do everything to keep him alive.
• Describe your feelings about such an encounter.
• What do you say next?
• Is CPR medically appropriate?

4
CPR History

• First described in 1960, mostly for
  anesthesia-related cardiac arrests
• Later, CPR became the default treatment for
  cardiac arrest from any cause
• CPR was never intended for use in patients dying
  an expected death from a chronic, fatal, medical
  illness.
• Presumed consent (must explicitly refuse)
• What percentage of patients survive CPR?

5
Facts Survival After CPR

• Generally, only 10-15 survive to hospital
  discharge many with impairments
• Lower rates of survival (lt5)
• Unwitnessed arrest
• Rhythm other than VT/VF
• Co-morbidities
• Survival for nursing home patients 0-3
• Age alone not a strong predictor of survival

6
Public Perceptions of Survival

• General belief of 65 survival after CPR
• 67 of resuscitations successful on TV
• Probability of survival influences choices
• After learning the true probability of survival,
  only about 50 of adults still wanted CPR

7
Step 1 Preparation

• Review medical history
• Get agreement from the medical team
• Who will attend the meeting?
• Medical team members
• Patient, family members, friends, clergy
• Who will lead the meeting?

8
Starting the Meeting

• Quiet, private place with enough seating
• Allow adequate time
• Try to minimize interruptions (your pager)
• Introductions (both family and staff)
• Discuss purpose of the meeting
• It is important that we talk about some important
  decisions for your father. Often this can be
  difficult for families, but together

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Step 2 What does the family understand?

• Assess baseline knowledge
• What have you been told about her condition?
• What do you understand about how things are
  going?
• Educate
• It seems that you are not sure why his kidneys
  are failing. Let me try to explain
• Perception of suffering
• How do you thing she is doing in terms of pain?
• Do you think that she is suffering in any way?

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Step 3 Goals and Expectations

• Hopes and fears
• Given his current situation, what do you hope
  for?
• What are you most afraid of?
• Prognosis
• What do you think is most likely to happen?
• Ethnic and cultural influences
• What should I know about her beliefs and values,
  in order to provide the best care?

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Step 3 Goals and Expectations

• Focus on patients perspective
• You know him best. If he could speak to us now,
  how do you think he would want us to care for
  him?
• Frequently-mentioned goals
• Pain and symptom control
• Avoid prolongation of dying
• Achieve a sense of control
• Relieving burden on family
• Strengthen relationships

(Adapted from Singer PA, Martin DK, Kelner M.
Quality end-of-life care patients' perspectives.
JAMA 1999281163-8.)
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Step 4 Shared Decision-Making

• Use goals to provide context (build on Step 2)
• Youre saying that he would want to be kept as
  comfortable as possible and die peacefully. Not
  attempting to resuscitate him would be the best
  way to respect his wishes.
• Offer your own recommendation
• From what you have told me about her goals and
  given her current illness, I would recommend a
  DNR order. Her likelihood of survival is low and
  CPR would add to her suffering.

13
Use of Language

• Avoid confusing or misleading statements
• Do you want us to do everything?
• If his heart stops, should we restart it?
• Explain that to arrest means to die, and that CPR
  is only an attempt to reverse death
• If she dies despite our best efforts, do you want
  us to try and bring her back with CPR?
• Clarify that resuscitation involves a series of
  medical interventions applied sequentially to
  restore breathing and circulation
• If patients survive CPR, they are placed on a
  breathing machine and admitted to the ICU.
  Patients cant talk with the breathing tube in
  place.

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Shifting Focus

• Dont confuse DNR with Do Not Treat
• Even though we wont perform CPR, we will
  continue all other efforts to treat her using
  methods that might help without adding her
  suffering.
• Avoid mechanical or organ-specific descriptions
• If her heart stops, it is because she is so ill
  not simply because she has a problem with her
  heart. CPR cant fix her other medical problems.
• Comfort goals and a natural death
• We will keep him as comfortable as possible when
  the time comes.
• We can allow him to die peacefully.

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Language

• Sometimes when people die, or are near death,
  especially from a sudden illness, life support
  measures are used to try and bring them back.
  Alternatively, we could focus solely on keeping
  you comfortable. How do you feel about this?
• I understand your desire for CPR, but I will need
  some direction if you survive, since you will
  almost certainly be on a breathing machine in an
  ICU. It is very likely that you will not be
  able to make decisions for yourself.
• Who do you want to make decisions for you? Please
  give me some sense of how long we should
  continue life support if you are not able to
  make decisions and there is no improvement in
  your condition.

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Step 5 Respond to Emotions

• Acknowledge the emotion
• I see that this is very upsetting.
• You seem overwhelmed by this discussion.
• Legitimate the emotion
• A lot of people struggle with this decision.
• Many of my patients are initially frightened by
• Explore emotion and ensure understanding
• Tell me what worries you the most.

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Step 5 Respond to Emotions

• Empathize
• I imagine it feels overwhelming.
• I imagine that you feel conflicted.
• Provide support
• We will work through this together.
• Share the burden
• It is my responsibility to provide the best care
  possible. This means respecting her values and
  not making her suffer unnecessarily. Since CPR
  will likely hurt more than help, I will write a
  DNR order.

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Managing Conflict

• Establish ground rules
• Everyone gets a turn to speak without
  interruption.
• Begin with the common ground
• We are all trying to do the best we can for your
  Dad.
• We will continue all other effective treatments
• Set limits
• You both care deeply about your father and its
  natural to have some disagreements, but let me
  hear from each of you in turn about what you
  think he would want
• Take a time-out and revisit later

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Managing Conflict

• Acceptance of dying is a process it occurs at
  different times for different family members.
• Family illness can bring strong emotions and
  interpersonal problems to the surface
• Ask for help from a chaplain, social worker, or
  palliative care consultant

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Moving Forward Without Consensus

• Ensure that everyone has the same medical
  information
• Ensure that trust exists between the doctor and
  family
• Consider a time-limited trial
• Lets continue full aggressive support for
  another 72 hours, if there is no improvement,
  lets meet again and re-discuss the options.
• Clearly define the elements of improvement
• (e.g. mentation, oxygenation, renal function,
  etc.)

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Step 6 Planning and Follow-up

• Be ready to take the lead
• In order to respect his wish to die naturally, I
  will place a DNR order in the medical record.
• Summarize the decisions using clear language
• If things continue to worsen and he dies, we
  wont attempt to resuscitate him.
• Talk about what you will do
• Keep him as comfortable as possible
• Continue all treatments that might help him
  survive
• Identify a family spokesperson
• Schedule a follow-up meeting, especially if
  conflict exists/consensus cannot be reached

22
After the meeting

• Advance Care Planning Note
• Attendance record
• Summarize discussion
• Summarize decisions
• Write orders and complete paperwork
• Medical Orders for Scope of Treatment (MOST)
• CPOE
• Talk with the medical team

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6 Steps for Family Meeting

• Preparation
• Elicit Familys Understanding
• Establish Goals and Expectations
• Make Decisions (about CPR)
• Respond to Emotions
• Plan and Follow-up

(Adapted from von Gunten CF. Discussing
do-not-resuscitate status. J Clin Oncol
2001191576-81.)
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Key Points for Shared Decisions

• Always begin with the familys perspective
• Establish goals first
• Use goals to guide decisions
• Avoid euphemisms and mechanistic descriptions
• Make a recommendation if you have one

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Key Points About CPR

• CPR Survival is low with co-morbid illnesses,
  unwitnessed arrests, and unshockable rhythms
• Families often overestimate CPR survival
• Non-decisions regarding CPR have consequences
  (patients will be resuscitated)

26
Acknowledgments

• Co-authors for original training module
• Deborah King, PhD
• Timothy Quill, MD
• http//www.urmc.rochester.edu/SMD/gme/directors/ac
  gme.cfm
• Adapted with resources from the End of
  Life/Palliative Education Resource Center
• www.eperc.mcw.edu