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Moral Hazards of Advance Care Planning

Moral Hazards of Advance Care Planning. Melissa Schepp, MD Palliative Care Medical Director St. Joseph’s Hospital, Atlanta, GA September 7, 2011. HAZARD. Webster “an unavoidable danger or risk, even though often foreseeable” Understanding the context of the Advance Directive Document

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Moral Hazards of Advance Care Planning

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  1. Moral Hazards of Advance Care Planning Melissa Schepp, MD Palliative Care Medical Director St. Joseph’s Hospital, Atlanta, GA September 7, 2011

  2. HAZARD • Webster “an unavoidable danger or risk, even though often foreseeable” • Understanding the context of the Advance Directive Document • May help in the implementation

  3. Context • Historical • Why do these documents exist?

  4. HistoryAttitude and options regarding death • For thousands of years: “the tame death” • “naïve acceptance of destiny and nature”—Philippe Aries

  5. HistoryAttitude and options regarding death • 19th century our options expanded • Explosion of technology (medications, machines) • Cure! • Effect on our attitude • Death as avoidable • Role of medicine (prolong life)

  6. HistoryBacklash • Backlash • Seminal Case Law • Karen Ann Quinlan (1975) • Ethics committees in hospitals, NH, hospices • Legal underpinnings of advance directive documents • Nancy Cruzan (1983) • Led states to formalize laws governing • Withhold or withdrawing life-sustaining treatments • Living wills • Healthcare proxies • Led to Patient Self-determination Act (1990) • Requires agencies receiving federal funds inform patients of right to complete an Advance Directive

  7. Purpose of Advance Directiveis to: • Protect you from living a quality of life that would not be acceptable to you through medical intervention • Allow your voice to be a part of the discussion that your family and medical team may have to address difficult end-of-life decisions BY: • Appointing a person to speak for you when you are unable to speak for yourself • Documenting your care preferences when it is determined that the application of medical technology will not • cure you or • allow you to go on living with a quality of life that is unacceptable to you or • is only forestalling inevitable death

  8. This should be the end of the presentation • Difference in theory… • People should fill these documents out • These documents should be consulted at the appropriate time in a helpful way • …and practical application • What are the barriers/pitfalls?

  9. More Context to consider • Shifting EOL Demographic • Medical Community Barriers • Cultural Barriers • Patient/Healthcare proxy preparedness

  10. Shifting EOL Demographic #1 Reason MEDICAL PROGRESS… …has changed the way we live …has changed the way we are sick …has changed the way we die

  11. Modern End of Life=Protracted Course • 85% of people in the US will experience one of these trajectories at the “end of life” • 20% Cancer • 25% Organ Failure • 40% Dementia/Frailty • Average American 2-4 years of disability before death

  12. Implications on Advance Care Planning • Future is generally less predictable • Adaptatation • “Terminal” not easy to pinpoint • Life-sustaining interventions can make us “better” • Non technical life sustaining interventions can also make us “better”

  13. Solutions? • The Case for Disease-Specific Advance Directives • Diseases with a predictable course • ALS • Diseases with unpredictable course • HF • Goes beyond the legal document • More likely that the legal document is complete • More likely to remain out of the hospital at EOL • More likely to enroll in Hospice

  14. Medical Community Barriers • Checklist Mentality (PSDA 1990) • Flow of information (patient-driven document) • Time • Knowledge • Willingness • Do you have a form? (much of the energy centered here) • Help complete the form (needs to be broader) • Applying the form at the right time in a helpful way • Knowledge deficit

  15. Cultural Context • Autonomy • Primary focus of EOL decision making in US • Not elsewhere (Asia++) • Not always the case (culturally, individually) • Assumptions of the Medical Model • Placing priority on other sources for prognosis* • Interpretation of the Patient’s Physical Appearance or Status • Optimism, Intuition, and Faith • Patient’s History of Illness and Survival • Patient’s Intrinsic Qualities, Will to Live • Power of Bedside Support • *Crit Care Med 2010 38:1270-5

  16. Preparedness of Patient and Family • What were the circumstances when these forms were filled out?

  17. Values Assessment Example Questions • What do you value most about your life? • How do you feel about death and dying? • Do you believe that life should be preserved as long as possible? • If not, what kind of mental and physical conditions would make you think that life-prolonging treatment should no longer be used • Unaware of my life and my surroundings • Unable to appreciate and continue the important relationships in my life • Unable to think well enough to make everyday decisions • In severe pain or discomfort

  18. Values Assessment Example Questions • Could you imagine reasons for temporarily accepting medical treatment for the conditions you described? • How much pain and risk would you be willing to accept if your chances of recovery from an illness or an injury were good (50-50 or better)? • What if your chances of recovery were poor (less than 1 in 10)? • Would you approach to accepting or rejecting care depend on how old you were at the time of treatment? Why?

  19. Values Assessment Example Questions • Do you hold any religious or moral views about medicine or particular medical treatments? • Should financial considerations influence decisions about your medical care? • What other beliefs or values do you hold that should be considered by those making medical care decisions for you if you become unable to speak for yourself? • Most people have heard of difficult end-of-life situations involving family members, neighbors or people in the news. Have you had any reaction to those situations?

  20. Preparedness of healthcare proxy • What did you understand your role as healthcare proxy to be at that time? • Role of healthcare proxy (vs. surrogate decision-maker) • Substituted judgment • Strike a balance

  21. Preparedness Planning the wave of the future • Annals of Internal “Redefining the Planning in Advance Care Planning; Preparing for EOL Decision Making” • AD Document is one piece of the ACP process • Too many hazards/ineffective to “make decisions in advance” based on incomplete or hypothetical information • Documents don’t cover some important issues (re-hospitalization) • Communication process to prepare patients and families for the types of decisions and conflicts they may encounter when they do have to make in-the-moment decisions • Step 1 Choosing an appropriate surrogate decision maker (having them present) • Step 2 Clarifying and articulating patients’ values over time • Step 3 Establishing leeway in surrogate decision making • Who is best suited to do this? • Primary doctors? • Palliative Care teams • Social Workers (disease specific areas)

  22. Resources • respectingchoices.org • Gunderson Lutheran • agingwithdignity.org • “Five Wishes” • “Hard Choices for Loving People” • Hank Dunn • NHDD.org • April 16

  23. Reading • Handbook for Mortals • Joanne Lynn, MD • Palliative Care: Transforming the Care of Serious Illness • Diane Meier, MD

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