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Nuts and Bolts of Advance Directives Hertzberg Palliative Care Institute Brookdale Dept. of Geriatrics & Adult Development Mount Sinai School of Medicine.

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Presentation on theme: "Nuts and Bolts of Advance Directives Hertzberg Palliative Care Institute Brookdale Dept. of Geriatrics & Adult Development Mount Sinai School of Medicine."— Presentation transcript:


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

3 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.

4 Objectives nUnderstand that death is ubiquitous nUndergo Fantasy Death Exercise: what do we all want? nDoes reality clash with fantasy? SUPPORT data nWhat is Advance Care Planning (ACP)? nHow do you begin a discussion about advance directives (AD)? nWhat is DNR? –How does DNR fit into ACP discussion?

5 Ubiquity of death nNot all of us get married… nNot all of us get diabetes… nNot all of us have children… nBut all of us will die – and we usually have no idea when.

6 Fantasy Death Exercise… nConsider for a moment the most wonderful death you can imagine for yourself. As though you were in a play: it doesnt 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?

7 …Fantasy Death Exercise nOnly caveat: as in life, you must die. There is no way out. nWhat does your death look like?

8 …Fantasy Death: There are Common Themes nFeeling at home, or being at home nComfort nSense of completion (tasks accomplished) nSaying goodbyes nLife review nLove nNo pain nMake it quick

9 Site of Death nHospitals: 56% nNursing homes: 19% nHome:21% nOther 4% ( 1993 National Mortality Followback Survey)

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

11 SUPPORT: Background nControlled trial to improve care of seriously ill hospitalized patients nMulticenter study funded by RWJ n9000 patients with life threatening illness -1st phase- How people die in hospitals -2nd phase- RCT of nurse based intervention, 2500 subjects in each group

12 53% Physician Did Not Understand That a Patient Wanted to Avoid CPR

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

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

15 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: )

16 SUPPORT: Site of Death nSite of death predicted by : –number of hospital beds –hospice spending –% patients in nursing home –expenditures on long term care –diagnostic category nPatient preferences irrelevant

17 Are these data consistent with your fantasy death scene?

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

19 What is Advance Care Planning (ACP) nPlanning for future medical care in the event patient is unable to make own decisions –Needs to be updated regularly nEmpowers patient to explore own values, goals nDetermine proxy decision-maker nIt is a process, not an event nProper documentation avoids confusion & conflict

20 Clarify Goals, Treatment Priorities nGoals guide care nAssess priorities to develop initial plan of care nReview with any change in –health status –advancing illness –setting of care –treatment preferences nAdvance Care Planning

21 Terms Used in Advance Care Planning (ACP) nInstructions for Medical Care Living will Verbal statements Personal letter or value statement stating preferences The 5 Wishes nDesignation of proxy Health Care Proxy or Agent Durable Power of Attorney for Health Care Advance Directives

22 How do Advance Directives differ from DNR? nADVANCE DIRECTIVES –Should be considered by anyone and everyone –Applies to all general medical treatments –Document usually requires patient signature nDNR 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

23 Support for Advance Care Planning nAmbulatory elderly patients –87% favored routine discussion nNursing home residents –69% favored advance care planning n493 hospitalized patients –80% favored discussion of AD

24 Patient Barriers to Completion of Advance Directives (AD) nBelief 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. nProcrastination nApathy nBelief that family should decide nFamily would be upset by the planning process nFear of burdening family members nDiscomfort with the topic (*Johnston et al. Arch Intern Med, 1995)

25 Physician Barriers to Advance Care Planning nPatients should initiate discussions. nPhysician lack of understanding of AD* nMD erroneous beliefs about appropriateness* nLack of knowledge about ADs* nDiscomfort with the topic. nTime constraints. nNegative attitude. (* Morrison et al, Arch Intern Med, 1994)

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

27 What is the patients 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 todays medicine - but avoidable by tomorrows - 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)

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

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

30 …Take Home Lessons nWhen 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 nSetting clear goals helps guide direction & plan of care, & avoids confusion and conflict.

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