Determining Preferences for Care

1. Determining Preferences for Care Karen M. Knops, M.D. Dept. of Palliative Care October 2004

2. “It is more important to know what kind of patienthas a disease than what kind of disease a patient has” (Sir William Osler)

3. Evaluating Goals of Care: The Context 1. Patient desires and goals are not the same as our desires and goals 2. Problems arise when we don’t realize or acknowledge #1 3. In medicine, a systematic approach to complex problems can prevent oversights, redundancy, and confusion

4. The Benefits of Evaluating Goals of Care: • Guide decision-making and prevent unnecessary treatments • Identify misconceptions, barriers to care • Evaluate spirituality, perspective on life, support system, level of function • CYA

5. Current Models of the Goals-of-Care Discussion • The “Withdrawal of support” • The “DNR/DNI” • The talk so vague that patient does not realize that end-of-life issues were discussed • The Advance Care Plan/ DPA talk • The Hospice Referral (aka the “Hasta la vista”) We often ask patients and surrogates to speak our language and fit with existing care options

6. A Systematic Approach Step 1: Start where they are - Open the with a summary Step 2: Find out where they want to go and explore how to get there - GOOD

7. Step 1: Start where they are • Solicit a summary : “What have you been hearing about your condition so far?” “Can you tell me where you are at in your illness and your treatment?” • Offer a summary: “Let me see if I can summarize what has happened so far…”

8. Step 2: Find out where they want to go • Goals • Options • Opinion • Documentation

9. GOOD - Goals • Sometimes patient/family are able to clearly and solidly articulate goals • When goals are poorly articulated, we can start by inquiring about three areas of concern

10. Three Domains of Patient Perspective, Three Players in the Illness Narrative Disease Death Suffering

11. Disease Suffering Death The “Trade-Offs” Patient’s perspective on the role of disease and desire for medications & interventions to cure or control it Patient’s perspective on the role of suffering and desire for medications & interventions to ease suffering Patient’s perspective on death and desire to hasten or control circumstances of death

14. Identifying Goals • Highlight conflicting goals or expectations that are unrealistic (Illustrates what “homework” the patient needs to do) • Provides a framework for discussing complex patients with other team members and readdressing patient goals at a later date

15. Translate Goals to a Plan of Care • Goals • Options • Opinion • Documentation

16. GOOD - Options • Present the options that are most relevant, as identified in the “goals” discussion • Benefits and burdens of each option • Present Probability

18. Translate Goals to a Plan of Care • Goals • Options • Opinion • Documentation

19. GOOD - Opinion • Offer your opinion given all of the information and patient/family goals • Use neutral language • Separate data from opinion • Provide a basis for your opinion • Consider carefully what you are willing to do and not willing to do

20. Translate Goals to a Plan of Care • Goals • Options • Opinion • Documentation

21. GOOD - Documentation • Record the essence of the discussion and who participated • Current and future preferences and a few lines about the basis of these preferences • It is not enough to write DNR or Full Code • Make important preferences easy to find

22. Three Players in the Illness Narrative: Disease Suffering Death

23. Three Areas of Care: Disease Directed Care Palliative Care End of Life Care

24. Disease Directed Care Disease & Palliative Care Palliative Care End of Life Care

25. Disease Directed Care Disease & Palliative Care Disease & EOL Care Palliative Care End of Life Care

26. Disease Directed Care Disease & Palliative Care Disease & EOL Care Palliative Care Traditional Hospice End of Life Care

27. Disease Directed Care Disease & Palliative Care Disease & EOL Care Comprehensive Care Palliative Care Traditional Hospice End of Life Care

28. Vignettes?

29. Disease Directed Care H.M. 68 year old woman Class III CHF Can’t golf anymore Enjoys time with grandchildren Good social and emotional support Church and family involved “Life isn’t bad. I just take things as they come. I think about death sometimes, but I definitely want to see my grandchildren graduate from high school” Disease Directed Care Disease Suffering Death

30. Palliative Care R.B. 58 yo man 12 year h/o idiopathic peripheral neuropathy causing sensation of burning and tightness in the feet. Minimal help from Neurontin and tricyclics. Now drinking rum each evening to be able to sleep. Daughter states: “He doesn’t even go to his neurologist anymore- there’s nothing they can do” Palliative Care Disease Suffering Death

31. Disease Directed with Palliative Care C.B. 42 yo woman Stage IV breast cancer Bone pain, gastric outlet obstruction Experimental protocol Wants any available treatment Emotional suffering due to illness stigma disfigurement 2° surgery “This is a tough battle, but its one that I mean to play out until the end. I’m a fighter.” Disease & Palliative Care Disease Suffering Death

32. End of Life Care L.V. 48 yo man Father and brother died of Huntington’s Disease, patient is showing early signs Function not impaired, working as a lawyer Lives alone, talks to sister for support “There is no question in my mind. I can’t live through that experience like they did. I just can’t go that way. ” End of Life Care Disease Suffering Death

33. Traditional Hospice S.K. 73 yo woman End stage COPD Oxygen dependent, can’t walk a full block, nebulizer provides minimal relief Advanced care plan to limit invasive measures (no hospitalization) PMD recently recommended hospice “I’m so tired. My daughter has to do everything anymore.” Traditional Hospice Disease Suffering Death

34. Disease Directed Care with End of Life Care L.M. 65 yo woman Recently diagnosed with Multiple Myeloma Previously very active, social Long history of depression and anxiety, on multiple medications. Accepted treatment for MM Wanted no aggressive measures At the time of diagnosis: “I feel like this is it for me.” Disease & EOL Care Disease Suffering Death

35. Terminal Illness Care J.D. 67 yo veteran ESLD, severe osteoarthritis Compliant with medications, wants to remain on transplant list More afraid of pain than he is of death. Needs a great deal of social support, however not in hospice due to desire for transplant. “I’ve lived my life. I’d like to live longer, but it may not work out that way.” Terminal Illness Care Disease Suffering Death

36. QUESTIONS? • How tall are you? 6’1/2” • Why do you pronounce the “K” in your last name? It’s Dutch. • Do you play basketball? No.

37. Disease Directed Therapy Illness with DHD Illness with Palliative Care Terminal Illness Care Desire to Hasten Death Palliative Care Traditional Hospice “Vignette” Illness with Palliative Care C.B. 48 yo woman Stage IV breast cancer Bone pain, gastric outlet obstruction Experimental protocol Wants any available treatment Emotional suffering due to illness stigma disfigurement 2° surgery “This is a tough battle, but its one that I mean to play out until the end. I’m a fighter.” Disease Directed Therapy Palliative Care Desire to Hasten Death

38. Methods We searched MEDLINE from 1986 – 2004: • headings that included: patient preferences, chronic illness (in conjunction with terms such as congestive heart failure, COPD, renal failure, liver failure), end-of-life, hospice, palliative care, disease-directed therapy, resuscitation, hastened death, and physician-assisted suicide. • Bibliographies of relevant papers were reviewed for additional data sources.