Difficult but not impossible

1. ADVANCE CARE PLANNING The Health Care Professional’s Role Difficultbut not impossible Susan A. Andresen, Ed.D., HS-BCP J. Paul Newell, M.D.

2. Presentation Goal and Objectives • Goal: • Increase physician knowledge and confidence related to the role of advance care planning and advance directives in end-of-life care • Objectives: • Understand and name the barriers to obtaining and implementing advanced directives. • Recognize an optimal process and model for developing advanced directives. • Understand the physician's critical role in implementing an effective process. Dying Well

3. “Can’t We Talk About Something More Pleasant?” Roz Chast Dying Well

4. How comfortable are you with your knowledge of advance care planning and advance directives? • Very • So-So • Not at all Dying Well

5. Christina has suffered from cardiovascular pulmonary disease for several years. She has designated her daughter as her Health Care Agent. During a hospital stay, Christina's physician approaches her to discuss a potential medical treatment. Before Christina can respond, her daughter instructs the physician to do everything he can to treat her mother • How should the physician respond? Dying Well

6. How many of you have had experience in assisting patients in making difficult decisions about their medical care? Dying Well

7. What is your comfort level with discussing advance care issues with patients and their families? • Very • So-So • Not at all Dying Well

8. CONSIDER THIS • AHRQ, 2003 • Less than 50 percent of the severely or terminally ill patients studied had an advance directive in their medical record. • Only 12 percent of patients with an advance directive had received input from their physician in its development. • Between 65 and 76 percent of physicians whose patients had an advance directive were not aware that it existed. Dying Well

9. AND CONSIDER THIS • 2010 survey: • 4,188 physicians; Journal of Cancer online • 65% would discuss prognosis with 4 to six months to live • 44% DNR status • 26% hospice • 21% preferred site of death • Reluctance to talk about important EOL issues as long as patients are feeling well • Would rather wait until symptoms worsened or there were no more treatments to offer Dying Well

10. What do you believe to be the common barriers to effective conversations about end of life issues? Dying Well

11. Categories of Barriers • Emotional • Social and Cultural • Legal and Economic • Medical Training and Environment Dying Well

12. Barriers to Advance Care Planning:Social and Emotional • Too busy; Too young; Don’t feel the need • Too hard to talk about it: Patients AND Professionals • Assumption that loved ones know our wishes • Medical and legal terms confusing • Confusion between financial and health planning processes • Think an attorney is needed • Fear document can’t be changed • Disability and right to life communities struggle Dying Well

13. From The Quest to Die with Dignity • "It brings sadness on me to talk about losing a loved one, so I don't talk about it. I don't want to ruin my day; I don't want to ruin my week; I don't want to ruin my year. And it turns into a lifetime." DIFFICULT BUT NOT IMPOSSIBLE

14. Barriers to Advance Care PlanningSocial and Cultural: PhillipeAriès, 1974 • Death is a social construction, evolving over time • Changes occurred slowly over centuries, attracting little notice • Late nineteenth century a radical shift: • Death shameful and forbidden. • Began in North America • Started with sparing the dying person • Morphed into avoidance of emotion and ugliness of dying • Accelerated with shift of location of dying from home to hospital: Death as technical phenomenon • During the 1960s, much study of the conditions of death in America. Death became something we can once again talk about Dying Well

15. Barriers to Advance Care PlanningLegal Infrastructure Largely in Place • 1967: First advance directive – Euthanasia Society of America • 1976: In re: Quinlan, N.J. Supreme Court: Right to remove ventilator • 1982: U.S. Supreme Court: Right of competent adult to refuse medical treatment • 1990: U.S. Congress: Patient Self-Determination Act • 1991: Oregon develops first POLST program • 1993: U.S. Congress: Uniform Health Care Decisions Act • 2006: Joint Commission Standards on Advance Directives • 2010: Legislation that did not happen Dying Well

16. Barriers to Advance Care PlanningLegal Infrastructure Insufficient • Too few people use the legal tools • If used, many do not understand the forms and the need for future decision-making • Forms can’t provide good guidance without a guide • Goals and preferences for care may change • Proxy often doesn’t understand the person’s wishes • Health care professionals often unaware of AD • Even when professionals know of AD, they may ignore it Dying Well

17. Barriers to Advance Care PlanningMedical Training and Environment • Daniel R. Tobin, M.D., Peaceful Dying, • Medical system too often lacks training and perspective • Greatest limitation of Western medicine: Refusal to acknowledge death • Few hospitals create conditions for peaceful dying; living wills ignored • Death viewed as losing the patient Dying Well

18. Barriers to Advance Care PlanningMedical Training and Environment • Renaissance Project on Death, Dying, and Donation, 1998 • Health care providers tend to be trained to oppose death. Physicians speak: • Any death is a mistake and can be blamed on someone • Life should be prolonged for as long as possible • It's the quantity instead of the quality of life • If we're really good enough, we can keep this death from happening Dying Well

19. What do you experience as the consequences arising from these barriers? Dying Well

20. Consequences for the Health Care System • Only 30% have advance directives [2013] • 29.0% have health care proxy [2009] • < 25% enter hospital with advance directive [2005] • Living wills have limited influence • 58% die in hospital; 20% in nursing homes; 22% at home; institutions always costlier • Family: • Inconsistencies seen in quality of care • Communications issues prominent • Many receive unnecessary and unwanted care Dying Well

21. And the Dilemma Goes OnA Metaphorical Tale from St. Louis, MO • St. Louis Post-Dispatch, 24 June 2012, Jim Doyle • 89 year old woman with Alzheimer’s disease • Six months in hospital • Multiple life-prolonging measures • $1.2 million costs for hospital alone • No advance directive, living will, or proxy • Children could not agree Dying Well

22. We Are Not Dying Well in America Dying Well

23. Susan is in the advanced stages of cancer. Extensive treatments for her cancer have been ineffective. Susan is in the final phase of her life. She has completed an advance directive that indicates that she does not want life sustaining treatments. She has not assigned anyone to be her Health Care Agent. Susan has been admitted to the hospital and is unconscious. While in the ICU, she stops breathing. Dying Well

24. Questions re: Susan Scenario • How does Susan's advance directive apply in this situation? • What would happen if Susan didn't have an advance directive? • What is the likelihood that the advance directive will be ignored? Dying Well

25. What Then Are We To Do? • Engage in Advance Care PLANNING • All actions and activities that result in decisions about the kind of health care one would want in the event of serious progressive illness or impending death • Advance care planning does not equal advance directives • Ensure a process of SHARED DECISION-MAKING – Health professional is an integral partner • Make “THE CONVERSATION” central Dying Well

26. The ProcessShared Decision-Making That Never Ends Dying Well

27. Gold Standard for Advance Care Planning • Discussing and following a patient’s preferences for end-of-life care is as routine as measuring the blood pressure and asking about allergies to medicines • A genuine system change Dying Well

28. Tools: Discuss, Decide, Document • Three Essential Components • A Conversation Starter • An Individual Worksheet • A Legal Document Dying Well

29. The Conversation Starter-1 General Guidelines • WHO will be a part of the conversation? • Take time on more than one occasion • Be aware of challenging topics • Begin before a crisis occurs Dying Well

30. A Conversation Starter-2Topics That Need to Be Covered • General Concerns – Quality of Life • Views on Prolonging Life • Cardiopulmonary Resuscitation • Receiving Food and Water Through a Tube • Living on a Breathing Machine • Having an Incurable Brain Disease [Alzheimer’s] • Managing Pain • Organ Donation • Thoughts About Your Death • Who Should Make Decisions If You Cannot? [Proxy; Health Care Agent] Dying Well

31. An Individual Worksheet • Next step in advance care planning process • Topics covered identical to those in the conversation starter • Specifics re: feelings, values, and choices • Choices are important: • Yes • No • Try for a while: few days; few weeks; few months • Undecided • Potential guide for family and health care agent, especially if AD not completed or available Dying Well

32. A Legal Document • Basic Ingredients of the Advance Directive: • Appointment of health care agent • Treatment preferences • Effective only when person cannot communicate wishes • One of two conditions: • Terminal condition • State of permanent unconsciousness • Witnessing/Notarization • Effective date and signature • What to do with the AD, once completed and signed • Changeable and Revocable Dying Well

33. What do you know about advance care planning laws, tools and documents in your state? Dying Well

34. Advance Care Planning Law in Missouri • Life Choices [Missouri AG] includes: • Communicating about the end of life: • A life planning work sheet • Advance directives forms • Living wills • Understanding life-sustaining treatments • Managing pain • Outside hospital DNR; • Hospice Care • Also: Finances; Wills; POA; Guardianship; Dealing with Body; Etc. • Durable POA for Health Care Choices requires Notarization • Advance Directive for Health Care Choices requires Two Witnesses: Dying Well

35. http://ago.mo.gov/publications/lifechoices/lifechoices.pdf Dying Well

36. POLST/TPOPP • Have any of you used the TPOPP form, or other POLST document? • What is its value to you and the health care system? • Is it a substitute for an advance directive? Dying Well

37. Dying Well

38. POLST/TPOPP Is Different • Not for everyone • Only for the seriously ill needing standing orders for emergent or future care • Tells exact wishes about certain medical treatments • Is a signed medical order • Goes where the patient goes • For healthy patients, an advance directive Dying Well

39. Steve has never had a major medical problem but has completed an advance directive that appoints his wife as his health care agent and states his preference not to receive life sustaining treatments in the event that he is at the end of a terminal illness or permanently unconscious. Steve has an unexpected heart attack at work. He arrives at the emergency room before his wife, but his advance directive is in his medical chart at the hospital. • How should the medical team respond? And why? Dying Well

40. We Are Not Dying Well In America • How might physicians and other health care professionals improve this situation? DIFFICULT BUT NOT IMPOSSIBLE

41. Potential System Changes • An Urgent Public Health Concern [2013] • Patients and loved ones enabled to express advance care preferences • Health care professionals should be reimbursed • Advance care planning and directives built into electronic systems • Education and training of health care professionals essential • Champions are needed • Health care professionals can be highly influential in changing the systems within which they work. Dying Well

42. How Health Care Systems and Professionals Can Help • People want to obtain information on advance directives from their doctors or other health care providers. • Support education efforts • Make routine in day to day practice • Make routine in new patient intake • Provide appropriate materials to patients • Encourage the conversation • Be able and willing to answer questions • Enter advance directives into the medical record • Appoint office staff member(s) to manage Dying Well

43. The Last Words Someone who completed an AD • “It’s a gift! If you discuss all of this ahead of time with very clear minds, and hearing exactly what your loved one wishes, I feel like it is a real gift to do that for someone. To know that you have had these conversations and made these decisions early on, you don’t have to worry about the decision – you can have peace of mind.” A physician: • “Basically, you’re being taught by your dying and sick patients. So you’re exposed to this wisdom time and time and time and time again, and, as grace would have it, sometimes we learn.” Dying Well

44. Consumer’s Tool Kit for Health Care Advance Planning, Second Edition, Commission on Law and Aging of the American Bar Association, 2005. http://www.americanbar.org/content/dam/aba/uncategorized/2011/2011_aging_bk_consumer_tool_kit_bk.authcheckdam.pdf • Advance Care Planning: Preferences for Care at the End of Life, Agency for Healthcare Research and Quality, Research in Action, Issue #12, March 2003. http://www.ahrq.gov/research/findings/factsheets/aging/endliferia/endria.pdf • Making Your Healthcare Wishes Known, Caring Conversations, Center for Practical Bioethics, 1999, Revised 2013. http://www.practicalbioethics.org/files/caring-conversations/Caring-Conversations.pdf.

45. Life Choices, Missouri Attorney General Document. http://ago.mo.gov/publications/lifechoices/lifechoices.pdf • Five Wishes, Aging with Dignity. http://www.agingwithdignity.org/forms/5wishes.pdf • Compassion and Choices. For access to their advance planning resources: https://www.compassionandchoices.org/what-we-do/advance-planning/ • Caring Connections, a program of the National Hospice and Palliative Care Organization. Link to state specific advance directives. http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289 Dying Well

46. The African American Spiritual and Ethical Guide to End of Life Care - What Y'all Gon' Do With Me? Guide prepared by Heart Tones, addressing historical, cultural and spiritual factors that influence African - Americans’ decisions about end-of-life care and planning. http://www.hearttones.com/resources.php • Georgia Health Decisions CRITICAL ConditionsSM Planning Guide. http://georgiahealthdecisions.org • Advance Care Planning, Selected Resources for the Public: A publication from the Centers for Disease control. http://www.cdc.gov/aging/pdf/acp-resources-public.pdf Dying Well