DYING WELL

1. HOW ADVANCE CARE PLANNING HELPS DYING WELL Susan A. Andresen, Ed.D., HS-BCP J. Paul Newell, M.D.

2. Presentation Objectives • Be aware of the historical, cultural, legal, and public health contexts for advance care planning • Identify the common barriers to effective advance care planning • Understand the critical components of the advance care planning process • Articulate the benefits of effective advance care planning • Recognize their responsibility, as professionals, for facilitating the conversation about advance care planning Dying Well

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

4. The Quest to Die with Dignity [1997] • Fear being hooked up to machines • Prefer a natural death, in familiar surroundings with loved ones • Current health care system not supportive • Uncomfortable with the topic, resist taking action • Family consideration is the primary concern • Planning options then not supportive of wishes related to dying Dying Well

5. Focus Group Participant • "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." Dying Well

6. Starting “The Conversation” The things that make my life worth living include (note all that apply): • Thinking well enough to make everyday decisions • Being able to take care of myself (bathing, dressing, etc.) • Communicating with and relating to others • Being comfortable and free from pain • Living independently without the aid of life-support machines Dying Well

7. In making decisions about my final health care, I want to prolong my life as long as possible by any means possible: • Yes • No • Undecided • If I am in the final stages of an illness that cannot be cured, and I develop another illness that can be cured, I want to receive medications and/or surgery for the illness that can be cured: • Yes • No • Undecided Dying Well

8. If I could not communicate for myself, I know who would make health care decisions for me: • Yes • No • Undecided Dying Well

9. How many of you actually have your own advance directives? How many of you have assisted another person [patient, client, family member, etc.] with their planning and decisions about end of life care? Dying Well

10. 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 Dying Well

11. The Context for Advance Care PlanningCultural History: PhillipeAriès, 1974 • Death is a social construction, evolving over time • The oldest, longest held, and most common historical context: And we shall all die • Second historical context: twelfth century; focus on one's own existence and death • Third historical context: early eighteenth century; more focus on the death of others, less focus on one's own death • Changes occurred slowly over centuries, attracting little notice Dying Well

12. Cultural History • 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

13. The Context for Advance Care PlanningLegal History • Root of advance care planning is in the courts • State legislation: 1960s/1970s • Advances in technology create confusion: saving life vs. prolonging death • 1967: First advance directive proposed • 1976: In re: Quinlan, N.J. Supreme Court: Right to remove ventilator • 1976: California: First living will statute Dying Well

14. Legal History • 1982: U.S. Supreme Court: Right of competent adult to refuse medical treatment • State legislation: 1980s • End of 1986: 41 states with living will laws • Need identified for health care power of attorney statutes • 1983: California the first • By end 1997: all states have some version Dying Well

15. Legal History • 1990s: • Self-help tools emerge; focus on planning process • Out of hospital DNR orders emerge • Also surrogate consent or family consent laws [in absence of advance directive] • 1990: U.S. Congress: Patient Self-Determination Act • 1991: New Jersey: consolidates health care decision acts • 1991: Oregon develops first POLST program • 1993: U.S. Congress: Uniform Health Care Decisions Act Dying Well

16. Legal History • 2000s: • Paradigm shift from legal transactional approach to communications approach • 2006: Joint Commission Standards on Advance Directives • 2010: U.S. Congress: Patient Protection and Affordable Care Act • Provision for reimbursing physicians for advance care planning was removed – “death panels” and rationing claims • 2010: Medicare adopts policy to reimburse advance care planning – revoked due to right to life concerns Dying Well

17. 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

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

19. 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

20. Public Health ImplicationsWho Has Advanced Directives: What Do We Know? • 29.0% have health care proxy [2009] • 60.8% older adults have durable POA for HC [2007] • < One in four entering hospital have AD [2005] • Living wills have limited influence: vague; difficult to apply; misinterpreted as DNR orders • Considerable variation in what physicians will discuss [2010] Dying Well

21. Public Health ImplicationsThe Cost of Care • Inpatient costs with no AD three times greater than costs with AD [1994] • Estimates of % of Medicare budget spent during last year of life: 25 – 40% [2001] • 40% of this in the last 30 days • Costs vary greatly by city Dying Well

22. Public Health Professionals SpeakPalliative & End of Life Care Expert PanelAmerican Academy of Nursing • Advance Care Planning: 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 Dying Well

23. Public Health Professionals SpeakEnd of Life Issues: PH Crisis [AJPH, 2013] • >60% want EOL wishes respected • Only 30% have ADs • Twice as many whites as African Americans with ADs • Prefer info from health care providers • ADs likely to reduce costs • 58% die in hospital; 20% in nursing homes; 22% at home; institutions always costlier • Advance care planning part of prevention • Increasing rate of AD completion part of PH agenda Dying Well

24. We Are Not Dying Well in America • Too many dying people suffer from pain and other distress • Organizational impediments to good care can be identified and remedied • Serious attention needed to address gaps in scientific knowledge about the end of life • Better evaluation of outcomes strengthens accountability • [1997] Dying Well

25. A Silent Anguish [1999]Georgians speak • Marked inconsistencies in quality of care • Communications issues prominent • Biggest frustration: Getting information • EOL treatment decisions difficult and/or not honored • Abandonment by professionals when treatment futile • Reluctance to implement good pain management • Hospice option generally not presented • One caring health professional IS the difference • Care often unnecessary and unwanted Dying Well

26. 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 • Available on the Critical ConditionsSM website: In the News/And the dilemma goes on Dying Well

27. Barriers to Advance Care Planning: Legal • The Milbank Quarterly, C. Sabatino, 2010 • Legal infrastructure largely in place, but: • 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

28. 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 confuse • 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

29. “Not much has changed in the past decade. For something that is so ‘right,’ and so ‘obvious,’ [dignity, comfort, diminished costs, etc.] it is ever so hard to get it into place and keep it there. It is a hard nut to crack.” • Beverly Tyler, Executive Director, Critical ConditionsSM Program, June 2014 Dying Well

30. 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 • Make “THE CONVERSATION” central Dying Well

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

32. Advantages of Advance Care Planning • Enhances individual/family decision-making • Encourages individual/family to face potential end-of-life decisions • Involves individual/family as proactive members of the health care team • Provides direction to the health care team • Reduces caregiver guilt and stress • Avoids crisis decision-making • Start early Dying Well

33. Hallmarks of Successful Advance Care Planning • Individuals and families discuss and document their preferences • Health care professionals are involved in “The Conversation,” and • Health care systems place a priority on understanding and following the individual’s preferences Dying Well

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

35. The Conversation StarterCritical ConditionsSM Planning Guide General Guidelines • WHO will be a part of the conversation? • Take time on more than one occasion • Be aware of challenging topics • Above all, remember that your wishes can’t be followed if no one knows what they are Dying Well

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37. The Conversation StarterCritical ConditionsSM Scenarios and Questions • General Concerns • 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 for You If You Cannot? Dying Well

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39. The 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

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

44. Advance Directives • Basic Ingredients: • 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 Dying Well

45. Dying Well

46. Food For Thought • Our presentation title: Dying Well • Our contention: We continue NOT Dying Well • We have choices, enabled by supportive legislation and great tools • How do we turn this situation around? • What is MY responsibility - as an individual? • What is OUR responsibility - collective, societal, community? Dying Well

47. 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

48. Resources • Peaceful Dying: The Step-by-step Guide To Preserving Your Dignity, Your Choice, And Your Inner Peace At The End Of Life, Daniel R. Tobin, Karen Lindsey, Da Capo Press; (January 22, 1968) • Dying Well: Peace and Possibilities at the End of Life, Ira Byock, MD, Riverhead Trade; (March 1, 1998) • Can't We Talk about Something More Pleasant?: A Memoir, Roz Chast, Bloomsbury USA; First Edition (May 6, 2014) Dying Well

49. Western Attitudes toward Death: From the Middle Ages to the Present (The Johns Hopkins Symposia in Comparative History), Phillippe Aries, Patricia Ranum (Translator), Johns Hopkins University Press (August 1, 1975) • The Quest to Die With Dignity: An Analysis of Americans’ Values, Opinions and Attitudes Concerning End-of-Life Care, A Report by American Health Decisions: Executive Summary, Beverly A. Tyler, American Health Decisions, October 1997 • A Silent Anguish: Recognizing the Needs of Dying Patients and Their Families, Beverly Tyler, Report provided by Georgia Health Decisions, 1999 Dying Well

50. 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.