Nuts and Bolts of Advance Directives

1. Nuts and Bolts of Advance Directives HERTZBERG PALLIATIVE CARE INSTITUTE Hertzberg Palliative Care Institute Brookdale Dept. of Geriatrics & Adult Development Mount Sinai School of Medicine New York, NY Adapted from The Project to Educate Physicians on End-of-life Care.Supported by the American Medical Association andthe Robert Wood Johnson Foundation

2. The Nature of Suffering and the Goals of Medicine - Eric J. Cassell The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick. Physicians’ failure to understand the nature of suffering can result in medical intervention that (though technically adequate) not only fails to relieve suffering but becomes a source of suffering itself.

3. Objectives • Understand that death is ubiquitous • Undergo Fantasy Death Exercise: what do we all want? • Does reality clash with fantasy? SUPPORT data • What is Advance Care Planning (ACP)? • How do you begin a discussion about advance directives (AD)? • What is DNR? • How does DNR fit into ACP discussion?

4. Ubiquity of death • Not all of us get married… • Not all of us get diabetes… • Not all of us have children… • But all of us will die – and we usually have no idea when.

5. Fantasy Death Exercise… • Consider for a moment the most wonderful death you can imagine for yourself. As though you were in a play: it doesn’t have to be realistic; it can be quite fantastic. You might not have thought about this before. Give it your best shot. • Where are you? • Who is with you? • What are you doing? • Any physical or emotional symptoms? • How long have you known?

6. …Fantasy Death Exercise • Only caveat: as in life, you must die. There is no way out. • What does your death look like?

7. …Fantasy Death: There are Common Themes • Feeling at home, or being at home • Comfort • Sense of completion (tasks accomplished) • Saying goodbyes • Life review • Love • No pain • Make it quick

8. Site of Death • Hospitals: 56% • Nursing homes: 19% • Home: 21% • Other 4% ( 1993 National Mortality Followback Survey)

9. Can End of Life Care Be Improved? The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT)

10. SUPPORT: Background • Controlled trial to improve care of seriously ill hospitalized patients • Multicenter study funded by RWJ • 9000 patients with life threatening illness -1st phase- How people die in hospitals -2nd phase- RCT of nurse based intervention, 2500 subjects in each group

11. Physician Did Not Understand That a Patient Wanted to Avoid CPR 53%

12. Prolonged Suffering: 10 or More Days in ICU, in Coma, or on Ventilator 38%

13. Experienced Moderate or Severe Pain at Least Half of the Time Within Their Last Few Days 50%

14. Impact of Serious Illness on Patients’ Families Needed large amount of family caregiving 34% Lost most family savings 31% Lost major source of income 29% Major life change for family member 20% Other family illness from stress 12% At least one of the above 55% (SUPPORT JAMA 1994;272:1839-1844)

15. SUPPORT: Site of Death • Site of death predicted by : • number of hospital beds • hospice spending • % patients in nursing home • expenditures on long term care • diagnostic category • Patient preferences irrelevant

16. Are these data consistent with your fantasy death scene?

17. Restoring the Balance: The Importance of Advance Care Planning (ACP) Communication & ACP Mechanical Care

18. What is Advance Care Planning (ACP) • Planning for future medical care in the event patient is unable to make own decisions • Needs to be updated regularly • Empowers patient to explore own values, goals • Determine proxy decision-maker • It is a process, not an event • Proper documentation avoids confusion & conflict

19. Clarify Goals, Treatment Priorities • Goals guide care • Assess priorities to develop initial plan of care • Review with any change in • health status • advancing illness • setting of care • treatment preferences • Advance Care Planning

20. Instructions for Medical Care Living will Verbal statements Personal letter or value statement stating preferences The 5 Wishes Designation of proxy Health Care Proxy or Agent Durable Power of Attorney for Health Care Terms Used in Advance Care Planning (ACP) “Advance Directives”

21. ADVANCE DIRECTIVES Should be considered by anyone and everyone Applies to all general medical treatments Document usually requires patient signature DNR or DO NOT RESUSCITATE Should be considered by people who have risk factors for not surviving resuscitation Applies only in case of cardiopulmonary arrest Document does not require patient signature How do Advance Directives differ from DNR?

22. Support for Advance Care Planning • Ambulatory elderly patients • 87% favored routine discussion • Nursing home residents • 69% favored advance care planning • 493 hospitalized patients • 80% favored discussion of AD

23. Patient Barriers to Completion of Advance Directives (AD) • Belief that physicians should initiate discussions* • Patients felt discussions should occur earlier than MDs. At earlier age, earlier in disease history, earlier in patient-doctor relationship. • Procrastination • Apathy • Belief that family should decide • Family would be upset by the planning process • Fear of burdening family members • Discomfort with the topic (*Johnston et al.Arch Intern Med, 1995)

24. Physician Barriers to Advance Care Planning • Patients should initiate discussions. • Physician lack of understanding of AD* • MD erroneous beliefs about appropriateness* • Lack of knowledge about AD’s* • Discomfort with the topic. • Time constraints. • Negative attitude. (* Morrison et al, Arch Intern Med, 1994)

25. Patient-Provider Communication About Advance Directives • Survey of Medical Oncologists • 25% knew of existence of patients’ AD • Survey of Ambulatory Patients • 30% of patients who had completed an AD notified their primary care MD • Survey of Nursing Home Charts • 25% of completed AD disappeared from the nursing home chart after 2 years

26. What is the patient’s good? “If medicine takes aim at death prevention, rather than at health and relief of suffering, if it regards every death as premature, as a failure of today’s medicine - but avoidable by tomorrow’s - then it is tacitly asserting that its true goal is bodily immortality... Physicians should try to keep their eyes on the main business, restoring and correcting what can be corrected and restored, always acknowledging that death will and must come, that health is a mortal good, and that as embodied beings we are fragile beings that must stop sooner or later, medicine or no medicine.” (Kass LR. JAMA 1980;244:1947)

27. "To cure sometimes, To relieve often, To comfort always.“ - 15th C French saying

28. Take Home Lessons… • Dying is part of living. • Need to approach it openly despite its difficulty • Advance directives (AD) empower patients to reflect on their values, meaning of life, and illness experiences • AD help clarify patient’s wishes as to plan of care, and foster the patient-physician relationship

29. …Take Home Lessons • When illness is incurable and death is inevitable, goals may shift from cure to palliation • This shift is usually gradual as disease progresses and curative options are exhausted • Setting clear goals helps guide direction & plan of care, & avoids confusion and conflict.