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

5. 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 • (What’s best for the patient) • Surrogates’ interests shouldn’t factor in

7. 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?

8. 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

10. 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)

11. 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.

12. 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

13. 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

14. 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

15. Decision-making Dynamics

16. Why surrogates’ viewpoints matter • Life w/ pt • Emotional ties • Financial impact • Most affected by the decision • Relational autonomy • patient and family as a unit

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

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

19. 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

20. 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?

21. 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)

22. 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

23. 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

24. 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

25. 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

26. 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

27. Helped Support and others to talk to Working toward consensus Hampered Family conflict Social Networks

28. 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

29. 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

30. 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

31. 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)

32. 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

33. What can YOU do?! Munch 1893

34. Tips for surviving decision-making • Before decisions are needed • During decision-making • Afterwards

35. 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?

36. 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?

37. 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

38. 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

39. 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

40. 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

41. 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

42. 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

43. 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

44. 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

45. 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

46. Thanks for all you do!