Understanding Advance Care Planning: Living Wills, Health Care Directives, and POLST

1. Understanding Advance Care Planning: Living Wills, Health Care Directives, and POLST Margaret Isaac, M.D. Palliative Care Service Harborview Medical Center University of Washington

2. Outline Introduction A Few Words on Resuscitation Advance Directives Timing Communication Strategies

3. Outline Introduction A Few Words on Resuscitation Advance Directives Timing Communication Strategies

4. Advance Care Planning (ACP) • Process aimed at extending patient autonomy through periods of decisional incapacity. • Three steps: • thinking • talking • documenting   -UW Ethics in Medicine

5. Goals of ACP • maximize the likelihood that medical care serves the patient’s goals, • minimize the likelihood of over- or under-treatment, • reduce the likelihood of conflict • minimize the burden of decision making on family members or other surrogate decision makers -UW Ethics in Medicine

6. The Context • 25% of Americans over age 45 are unwilling to talk to parents about death • 50% of Americans state they are counting on friends, family members to carry out their wishes • But 75% have not discussed those wishes with anyone -National Hospice Foundation

7. "You don't want somebody else making those decisions for you. So I actually think it's a good idea to have a living will. I'd encourage everybody to get one. I have one; Michelle has one. And we hope we don't have to use it for a long time, but I think it's something that is sensible."

8. “People can choose to ignore issues [about life-prolonging therapy and medications], but in doing so they are making other decisions about the course of a terminal illness. In the process of confronting these hard decisions, if the right questions are asked, surprising opportunities can be revealed.”-Ira Byock, M.D., Dying Well

9. What is a “good death” (is there such a thing)?

10. François Mitterrand

11. “Good Death” Individual Personal Cultural Considerations Different aspects: Physical Psychological Spiritual

12. A “Good Death” is… • free from avoidable distress and suffering for patients, families, and caregivers • in general accord with patients' families' wishes • reasonably consistent with clinical, cultural, and ethical standards -Institute of Medicine

16. Outline Introduction A Few Words on Resuscitation Advance Directives The POLST Form Communication Strategies

17. Resuscitation Survival % of patients that survive CPR On TV : 75% (Diem et al., 1996) Survey estimate: 54% (Marco, et al. 2008) Real life In the hospital: (Ebell, et al., 1998) (Ehlenbach, et al., 2009) Immediate: 44% To discharge: 14%-18% Out of hospital: 8% (Nichol, et al., 2008)

18. Outline Introduction A Few Words on Resuscitation Advance Directives Timing Communication Strategies

20. What is an advance directive?

21. Advance Directive Two types: Living will - documents patient's wishes regarding medical treatment. Health care power of attorney (DPOA-HC, health care agent) – person designated by patient to make decisions about medical care if unable to make those decisions. End-of-Life Palliative Education Resource Center

22. Advance directives are…. Only invoked if a patient cannot communicate their own wishes Legal documents New(ish)

23. Health Care Directives/Living Wills • Many different forms/versions • Five Wishes • Available in 23 languages and Braille • Legal in 42 states (all WWAMI) • Lay language

24. Five Wishes Who you want to make health care decisions for you when you can't make them. The kind of medical treatment you want or don't want. How comfortable you want to be. How you want people to treat you. What you want your loved ones to know.

25. DPOA-HC • Surrogate decision maker priority • Guardian, if any • DPOA-HC • Registered domestic partner or spouse • Adult children • Parents • Adult siblings • Substituted judgment -RCW 7.70.065

26. POLST Physician Orders for Life Sustaining Treatment

27. POLST “Portable” form Summarizes wishes regarding life-sustaining treatment identified in an advance directive and includes patient wishes regarding various medical interventions. Washington State Dept of Health

29. Challenges with Advance Directives Changing wishes of patients Vague language of advance directives Uncertainty in prognosis Substituted judgment

31. Outline Introduction A Few Words on Resuscitation Advance Directives Timing Communication Strategies

32. A (real) case Mr. C is a 52 year man with severe pulmonary fibrosis 2/2 bleomycin toxicity, transferring to you in clinic for primary care. PMHx: testicular cancer (20 years ago), end-stage liver disease 2/2 hepatitis C, IVDU, anemia, thrombocytopenia, IVC thrombosis, chronic DVT

33. Chest Clinic note: “terminally ill man with ESLD, pulmonary fibrosis, pulmonary hypertension, chronic thromboembolic disease who is worsening” No disease-modifying treatments available. Recommendation: focus on symptom management Today, patient says values being at home, being independent, minimizing medical appts. “But if something happens, I want everything done.”

34. When to discuss advance directives Physicians usually over-estimate survival. Experienced physicians more accurate. Physicians with long-term relationship with patient less accurate. “Would I be surprised if this patient died within the next year?”

35. Should we address goals of care with this patient? What is the goal of the discussion? transition to comfort care? start hospice? BIG PICTURE: What’s important in the patient’s life? What type of medical care can promote this?

36. Outline Introduction A Few Words on Resuscitation Advance Directives Timing Communication Strategies

37. [a brief aside] This is hard. You won’t have to do this on your own (yet). There’s no “right” way to approach these conversations. Watch, listen to others Make note of phrases that work Try them out Don’t be afraid to bring it up with your colleagues, supervisors.

38. “The spoken word is the most powerful tool in medicine.” -Eric Cassell, M.D.

39. How to discuss advance directives Bring it up. “Mr. C, I’d like to spend a little time talking to you about the kind of medical treatment you want to receive.” Explain why discussion is important. “I know these conversations can be difficult. We have some choices to make about your medical care. I try to address this with all my patients who have serious illnesses.”

40. How to discuss advance directives Assess desired level of involvement in decision-making. “First, I’d like to get a sense of how involved you’d like to be. Some patients already have strong opinions about these issues, while others want recommendations from their doctor. Some patients have a close family member or friend that they’d like to include in decision making. How do you feel?”

41. How to discuss advance directives Start with an open-ended question to determine knowledge and understanding. “Mr. C, can you tell me what the doctors have told you about your illness?” Assess general goals and priorities. “When you look ahead at the time you have left, what do you hope for? What are you most afraid of?” “If you had to rank comfort, independence, and longevity, which is most important to you?”

42. How to discuss advance directives Give information and prognosis, when possible. “Mr. C – I’ve spent some time talking to your other doctors and reading your chart. Is it OK if I talk to you about my impressions? You have a very serious disease, and I wish there were something we could do to fix it. Unfortunately, we don’t have any medicine to make this problem go away.”

43. How to discuss advance directives Discuss specific elements of advance directive, make recommendations when appropriate. -identify surrogate Summarize decisions, sign form.

44. Tips in discussing advance directives Focus first on overall goals and priorities before talking about specific treatments (like CPR). Sit. Take your time. Listen more than you speak. When possible, share prognosis, and probability of success for a given treatment. Don’t be afraid of the “D” word.

45. Some Helpful Phrases “If you were to get so ill that we couldn’t talk directly, who would you want to be involved in your medical decisions?” “How do you want things to be when you die?” “If you should die despite all of our efforts, do you want us to use CPR, or other aggressive interventions to try to bring you back?”

46. Phrases to Avoid “Do you want us to do everything?” “Do you want us to try to restart your heart?” Vague language: “poor prognosis” “bad outcome”

47. Making Recommendations It’s OK to make recommendations regarding medical decisions. For example: “Mr. C., because you have such severe disease in your lungs and in your liver, I think that, if you were to die unexpectedly, it’s very unlikely we could resuscitate you and bring you back. Also, you’ve told me how important it is to you to have a peaceful death, at home with your family. Because of that, I’d recommend that if you were to die at home, we should allow you to have a natural death. Does this sound OK to you?”

48. Take-Home Points Advance Directives are important tools to make sure patients’ wishes are respected. Goals and priorities at the end-of-life are very individual and personal. Learning about general goals and priorities helps guide conversations about specific treatment options. Not addressing these issues means de facto decisions are made about treatment options.