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Decision-Making and
Everyday Ethics
Lisa Vig MD MPHStaff Physician, VAPSHCS
Division of Gerontology and Geriatric Medicine, UW
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
Objectives
Describe players and perspectives
Review challenges of surrogate decision-making
Discuss things YOU can do Before During After
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
Physicians’ Perspective
Ethical basis of decision-making Patients autonomous
Should make their own decisions Surrogates
Substituted judgment (Decision patient would have made)
Best interests (What’s best for the patient)
Surrogates’ interests shouldn’t factor in
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
Who’s the legal surrogate?
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
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
Patients don’t 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)
Patients allow leeway
1. 150 dialysis pts - how strictly follow living will 39% no leeway 31% complete leeway
2. 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.
Surrogates make many decisions
Patients who can’t 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/chartbook2000/default.htmHiltunen J Clin Ethics 1999, Gochman Hosp J 1990
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
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
Why surrogates’ viewpoints matter
Life w/ pt Emotional ties Financial impact Most affected by the decision
Relational autonomy patient and family as a unit
Study Aim
To characterize how loved ones engage in surrogate decision-making and their responses to this process.
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
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?
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)
Surrogate Perspectives
Ways surrogates make decisions
66% decisions based on conversations 10% decisions based on pt’s living will 18% defer decision-making to others 16% decisions based on shared 28% based on surrogate’s beliefs
Vig, J Amer Geriatrics Soc, 2006
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
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
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 I’d been through, and so it did help a lot.”
- Woman designated to make decisions for her husband
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
Social Networks
Helped Support and others to
talk to Working toward
consensus
Hampered Family conflict
Working toward consensus
“Family’s family and when they’re dying, they want to have their say….It was a hard time…But [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
Relationship and Communicationwith Patient
Helped Responsibility
Keeping promises Decision produces
“good” outcome Being involved
Keeping up on pt’s condition
Knowing patient’s preferences
Hampered Not able to follow prefs Emotions/attachment Weighing pt prefs
against quality of life
Keeping promises
“ I had made a promise to him. It was that simple…You make that kind of commitment and you’ve got to do what you’ve got to do to see that it’s fulfilled…he was helpless, there was nothing more he could do.”
- Woman who made a decision to stop the breathing machine for her father
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
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, they’d tell me something else. I was so confused during that time, I didn’t know what was going on. At that point I said, ‘ I want to speak to one persons and one person only. I can’t take in all this stuff.’ ”
- Woman who struggled to make a decision for her husband
Beforehand (Loved one can communicate)
1. Talk to your loved one Preferences for care What makes life worth living? When would life not be worth living?
2. Ask how much leeway they’d allow
3. Negotiate potential conflicts Such as nursing home placement
4. Are you the legal decision-maker?
Beforehand(Loved one can’t/won’t communicate)
1. 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?
Beforehand
1. Learn about the illness(es) What’s the normal course? What stage are they in? What may happen as illness progresses?
2. Talk to involved others
3. Make a plan of how you’ll respond
4. Know about end of life resources
POLST Form
Preferred goals of care Antibiotics Artificial fluid and nutrition Who to discuss info with
Available at www.wsma.org/patients/polst.htmlwww.doh.wa.gov/hsqa/emstrauma/resuscitation.htm
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
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
During Decision-making
1. Be aware of your needs and values How are these affecting your decision-
making?
2. Talk to others (friends, family, spiritual leaders)
3. Help clinicians understand your loved one’s preferences and values
4. Ask clinicians to make a recommendation
5. Ask for one clinician to relay all information
During Decision-making
6. 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
7. Consider what decision you’ll be able to live with
Surrogate statement
“I realize that, you know, there’s not much hope and I don’t 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
Afterwards
Gauge how you’re 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
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 they’re 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 husband’s caregiver