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

The Players

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

Decision-making Dynamics

Why surrogates’ viewpoints matter

Life w/ pt Emotional ties Financial impact Most affected by the decision

Relational autonomy patient and family as a unit

Surrogate Decision-Making Study(Funded by NIH)

Wood 1930

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

What can YOU do?!

Munch 1893

Tips for surviving decision-making

Before decisions are needed During decision-making Afterwards

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

Thanks for all you do!