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Decision-Making and Everyday Ethics. Lisa Vig MD MPH Staff 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

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decision making and everyday ethics

Decision-Making and Everyday Ethics

Lisa Vig MD MPH

Staff Physician, VAPSHCS

Division of Gerontology

and Geriatric Medicine, UW

setting the stage
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
Objectives
  • Describe players and perspectives
  • Review challenges of surrogate decision-making
  • Discuss things YOU can do
    • Before
    • During
    • After
physicians perspective
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 perspective6
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
slide7
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
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 perspective9
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
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
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.

surrogates make many decisions
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.htm

Hiltunen J Clin Ethics 1999, Gochman Hosp J 1990

caregiving and decision making
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 making14
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
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
Study Aim
  • To characterize how loved ones engage in surrogate decision-making and their responses to this process.
who participated
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
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
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
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
What helped and hampered decision-making?
  • Characteristics and life circumstances
  • Social networks
  • Relationship and communication with pt
  • 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

Characteristics and life circumstances
previous experience
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
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

Social Networks
working toward consensus
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 communication with 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

Relationship and Communicationwith Patient
keeping promises
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

Communication and Relationship with Clinician(s)
too many cooks
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

tips for surviving decision making
Tips for surviving decision-making
  • Before decisions are needed
  • During decision-making
  • Afterwards
beforehand loved one can communicate
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 they’d allow
  • Negotiate potential conflicts
    • Such as nursing home placement
  • Are you the legal decision-maker?
beforehand loved one can t won t communicate
Beforehand(Loved one can’t/won’t 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?
beforehand
Beforehand
  • Learn about the illness(es)
    • What’s the normal course?
    • What stage are they in?
    • What may happen as illness progresses?
  • Talk to involved others
  • Make a plan of how you’ll respond
  • Know about end of life resources
polst form
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

end of life resources
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 resources40
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
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 one’s preferences and values
  • Ask clinicians to make a recommendation
  • Ask for one clinician to relay all information
during decision making42
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 you’ll be able to live with
surrogate statement
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
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
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
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