Decision-Making and Everyday Ethics

1
Decision-Making and Everyday Ethics

• Lisa Vig MD MPH
• Staff Physician, VAPSHCS
• Division of Gerontology
• and Geriatric Medicine, UW

2
Setting the Stage

• Medical decision-making is complicated
• Lots of players
• Diverse backgrounds, experiences, values
• Different points of view
• Potential for conflict
• May make take a toll on caregivers

3
Objectives

• Describe players and perspectives
• Review challenges of surrogate decision-making
• Discuss things YOU can do
• Before
• During
• After

4
The Players
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Physicians Perspective

• View decisions as discrete events, not part of a
  continuum of caregiving
• Duty to the patient
• May not recognize impact on families
• May not get big picture (esp trainees)
• May not recognize impact of their own beliefs
• Rely on ethical framework for decision-making

6
Physicians Perspective

• Ethical basis of decision-making
• Patients autonomous
• Should make their own decisions
• Surrogates
• Substituted judgment
• (Decision patient would have made)
• Best interests
• (Whats best for the patient)
• Surrogates interests shouldnt factor in

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Whos the legal surrogate?

• VA System (RI-06)
• DPOA
• Court appointed guardian
• Spouse
• Adult child
• Parent
• Adult sibling
• Grandparent
• Adult grandchild
• Close friend
• (someone who shows care/concern and is familiar
  w/ pt activities)

• WA State (RCW 7.70.065)
• Court appointed guardian
• DPOA
• Spouse/Registered partner
• Adult children
• Parents
• Adult siblings

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Patients Perspective

• Sick, stressed, and overwhelmed
• May not want to make decisions
• May want loved ones involved
• Concerned about burdening loved ones
• Allow loves ones leeway in implementing their
  preferences

9
Patients Perspective

• May not want to make decisions
• Older people more apt to defer decision-making
• when capable of making decisions
• Ethically permissible

Jenkins, Br J Cancer 2001 Degner, JAMA
1997 Cassileth, Ann Int Med 1980
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Patients dont want to burden loved ones

• 48 dialysis pts (Singer, Arch Int Med, 1998)
• Literature review (Stewart, JPSM, 1999)
• 213 cancer pts (Chochinov, Lancet, 2002)
• 26 terminally ill veterans (Vig, Arch Int Med,
  2004)

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Patients allow leeway

• 150 dialysis pts - how strictly follow living
  will
• 39 no leeway ?31 complete leeway
• 300 pts with 50 chance of dying in 2 yrs
• 54 preferred surrogates decisions over their
  own
• Reasons
• Trust in surrogate knowledge
• Trust in relationship with surrogate
• Concern for surrogates best interest

Sehgal A, JAMA. 1992. Terry BP, J Clin Ethics.
1999.
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Surrogates make many decisions

• Patients who cant make own decisions
• 44-69 of nursing home residents
• 50 of adult family home residents
• 75 of pts with life-threatening illness
• 42-66 of hospice enrollment by surrogates
• Patient defers decision-making

Casarett JAGS 2004, Chen JAGS 2003, Kim Am J
Geriatr Psych 2002, www.agingstats.gov/chartbook
2000/default.htm Hiltunen J Clin Ethics 1999,
Gochman Hosp J 1990
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Caregiving and decision-making

• Can be stressful and deleterious to health
• Risks for depression, burnout, PTSD
• 1/3 of surrogates who made decisions for a loved
  one in an ICU had PTSD symptoms
• 82 of those making end of life decisions had
  PTSD symptoms

Azoulay, Am J Respir Crit Care Med 2004
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Caregiving and decision-making

• Care focused not only on the patient, but also
  the family (Hospice care)
• Decreased rates of depression in family members
• Decreased overall mortality in family members

Christakis, Soc Sci Med 2003 Bradley, Am J Psych
2004
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Decision-making Dynamics
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Why surrogates viewpoints matter

• Life w/ pt
• Emotional ties
• Financial impact
• Most affected by the decision
• Relational autonomy
• patient and family as a unit

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Surrogate Decision-Making Study(Funded by NIH)
Wood 1930
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Study Aim

• To characterize how loved ones engage in
  surrogate decision-making and their responses to
  this process.

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Who participated?

• Designated decision-makers (surrogates) for
  older, chronically ill veterans
• Might need to make decisions in near future
• Eligibility criteria
• Cognitively intact,
• English speaking,
• Able to participate in a telephone interview,
• Previously made medical decisions
  for someone else

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Methods

• Telephone interview
• Has your loved one ever discussed his/her wishes
  for medical care if he/she had life-threatening
  illness with you? Tell me about that/those
  conversations.
• Did you make decisions during that time? Tell me
  about that.
• Can you think of anything that might have made
  the process of making decisions easier for you?

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Results

• 50 surrogate decision-makers
• Average age 63 yrs (range 40-84)
• Ethnicity 90 White
• Gender 90 Female
• Relationship to patient
• Spouse 68
• Adult child 14
• Other family 8
• Friend 10
• Knew patient average 40yrs (range 5-76)

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Surrogate Perspectives

• Ways surrogates make decisions
• 66 decisions based on conversations
• 10 decisions based on pts living will
• 18 defer decision-making to others
• 16 decisions based on shared
• 28 based on surrogates beliefs

Vig, J Amer Geriatrics Soc, 2006
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What helped and hampered decision-making?

1. Characteristics and life circumstances
2. Social networks
3. Relationship and communication with pt
4. Communication and relationship with clinician

Vig, J Gen Int Med 2007
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Characteristics and life circumstances

• Helped
• Previous decision-making experience
• Coping strategies
• Religious community
• Spiritual beliefs
• Decision you can live with

• Hampered
• Competing responsibilities
• Own health
• Physical distance
• Financial barriers

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Previous experience

• I had lost both parents of the same thing, so I
  had been through it before. And I knew how to
  talk to him and bring up stuff that I knew that
  Id been through, and so it did help a lot.

- Woman designated to make decisions for her
husband
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Living with the decision

• To not do something that someone has asked me
  would be a harder thing to live with than not
  doing it.

- Woman who made the decision to stop the
breathing machine for an elderly neighbor
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Social Networks

• Helped
• Support and others to talk to
• Working toward consensus

• Hampered
• Family conflict

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Working toward consensus

• Familys family and when theyre dying, they
  want to have their say.It was a hard timeBut
  my brother and I finally came to an agreement
  because I found some sort of way to wait for him
  to come to terms with losing our mother.

- Woman who made decision to stop breathing
machine for her mother
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Relationship and Communicationwith Patient

• Helped
• Responsibility
• Keeping promises
• Decision produces good outcome
• Being involved
• Keeping up on pts condition
• Knowing patients preferences

• Hampered
• Not able to follow prefs
• Emotions/attachment
• Weighing pt prefs against quality of life

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Keeping promises

• I had made a promise to him. It was that
  simpleYou make that kind of commitment and
  youve got to do what youve got to do to see
  that its fulfilledhe was helpless, there was
  nothing more he could do.

- Woman who made a decision to stop the breathing
machine for her father
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Communication and Relationship with Clinician(s)

• Helped
• Clinician availability
• Frank information
• Prognosis, recovery
• How death would occur
• Positive reinforcement
• Respect
• Getting recommendations

• Hampered
• Too many involved clinicians

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Too many cooks

• There were just too many people there were too
  many different stories. I was being told one
  thing and then another team would come through,
  theyd tell me something else. I was so confused
  during that time, I didnt know what was going
  on. At that point I said, I want to speak to
  one persons and one person only. I cant take in
  all this stuff.

- Woman who struggled to make a decision for her
husband
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What can YOU do?!
Munch 1893
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Tips for surviving decision-making

• Before decisions are needed
• During decision-making
• Afterwards

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Beforehand (Loved one can communicate)

• Talk to your loved one
• Preferences for care
• What makes life worth living?
• When would life not be worth living?
• Ask how much leeway theyd allow
• Negotiate potential conflicts
• Such as nursing home placement
• Are you the legal decision-maker?

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Beforehand(Loved one cant/wont communicate)

• Think about their life and values
• How did they respond to illness/deaths of others
  (family, friends, TV) ?
• When would life not be worth living for them?

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Beforehand

• Learn about the illness(es)
• Whats the normal course?
• What stage are they in?
• What may happen as illness progresses?
• Talk to involved others
• Make a plan of how youll respond
• Know about end of life resources

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POLST Form

• Preferred goals of care
• Antibiotics
• Artificial fluid and nutrition
• Who to discuss info with
• Available at
• www.wsma.org/patients/polst.html
• www.doh.wa.gov/hsqa/emstrauma/resuscitation.htm

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End of Life Resources

• At the end of their life, would your loved one
  want
• Maximize quality of life and comfort
• Be at home
• Receive support by experts in symptom management
  who come to the home and are available 24/7 via
  phone
• Not pay for clinician visits, equipment or
  medications
• Hospice Care

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End of Life Resources

• Hospice care
• For last 6 months of life
• Patients can receive hospice for longer
• Can graduate if doing well
• If graduate or disenroll, can sign up again in
  future
• Hospice will support you in caring for your loved
  one allowing you more time to spend with your
  loved one

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During Decision-making

• Be aware of your needs and values
• How are these affecting your decision-making?
• Talk to others (friends, family, spiritual
  leaders)
• Help clinicians understand your loved ones
  preferences and values
• Ask clinicians to make a recommendation
• Ask for one clinician to relay all information

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During Decision-making

• Be aware of resources that can help YOU
• Social workers and chaplains can provide you with
  support
• Palliative care teams and Ethics teams can help
  everyone come to a good decision
• Consider what decision youll be able to live
  with

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Surrogate statement

• I realize that, you know, theres not much hope
  and I dont want to put her through it. If we
  can keep things going and have some progression,
  then, I think, I need to do that for her. I need
  to have something that I can live with.

Sister of ICU pt
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Afterwards

• Gauge how youre doing watch out for
• Depression
• Sadness, decreased energy, guilt, insomnia, lack
  of interest in things
• PTSD
• Reliving the experience over and over, recurrent
  dreams about the event, numbness, sleep problems,
  outbursts, hypervigilance
• Talk to those who can support you
• Go see YOUR primary care provider

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Happy Endings

• Dr. F. was fairly new to me, but when a doctor
  treats the spouse with a lot of respect and
  answers questions like theyre important, they
  give you the feeling of competence. And I think
  Dr. F. made me feel like a very important part of
  the team.

• Woman who had previously been her husbands
  caregiver

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Thanks for all you do!