moral hazards of advance care planning melissa schepp, md palliative care medical director st....

Moral Hazards of Advance Moral Hazards of Advance Care PlanningCare Planning

Melissa Schepp, MDMelissa Schepp, MDPalliative Care Medical DirectorPalliative Care Medical Director

St. Joseph’s Hospital, Atlanta, GASt. Joseph’s Hospital, Atlanta, GASeptember 7, 2011September 7, 2011

HAZARDHAZARD

Webster “an unavoidable danger or risk, Webster “an unavoidable danger or risk, even though often foreseeable”even though often foreseeable”

Understanding the Understanding the contextcontext of the Advance of the Advance Directive DocumentDirective Document

May help in the implementationMay help in the implementation

ContextContext

– HistoricalHistorical– Why do these documents exist?Why do these documents exist?

HistoryHistoryAttitude and options regarding deathAttitude and options regarding death For thousands of years: “the tame death”For thousands of years: “the tame death” ““naïve acceptance of destiny and nature”—Philippe Ariesnaïve acceptance of destiny and nature”—Philippe Aries

HistoryHistoryAttitude and options regarding deathAttitude and options regarding death 1919thth century our options expanded century our options expanded

– Explosion of technology (medications, Explosion of technology (medications, machines)machines)

– Cure!Cure!

Effect on our attitudeEffect on our attitude– Death as avoidableDeath as avoidable– Role of medicine (prolong life)Role of medicine (prolong life)

HistoryHistoryBacklashBacklash

BacklashBacklash– Seminal Case LawSeminal Case Law– Karen Ann Quinlan (1975)Karen Ann Quinlan (1975)

Ethics committees in hospitals, NH, hospicesEthics committees in hospitals, NH, hospices Legal underpinnings of advance directive documentsLegal underpinnings of advance directive documents

– Nancy Cruzan (1983)Nancy Cruzan (1983) Led states to formalize laws governingLed states to formalize laws governing

– Withhold or withdrawing life-sustaining treatmentsWithhold or withdrawing life-sustaining treatments– Living willsLiving wills– Healthcare proxiesHealthcare proxies

Led to Patient Self-determination Act (1990)Led to Patient Self-determination Act (1990)– Requires agencies receiving federal funds inform patients of right Requires agencies receiving federal funds inform patients of right

to complete an Advance Directiveto complete an Advance Directive

Purpose of Advance DirectivePurpose of Advance Directiveis to:is to:

Protect you from living a quality of life that would not be acceptable to Protect you from living a quality of life that would not be acceptable to you through medical interventionyou through medical intervention

Allow your voice to be a part of the discussion that your family and Allow your voice to be a part of the discussion that your family and medical team may have to address difficult end-of-life decisionsmedical team may have to address difficult end-of-life decisions

BY:BY:

Appointing a person to speak for you when you are unable to speak for Appointing a person to speak for you when you are unable to speak for yourselfyourself

Documenting your care preferences when it is determined that the Documenting your care preferences when it is determined that the application of medical technology will not application of medical technology will not – cure you cure you oror– allow you to go on living with a quality of life that is unacceptable to allow you to go on living with a quality of life that is unacceptable to

you you oror – is only forestalling inevitable deathis only forestalling inevitable death

This should be the end of the This should be the end of the presentationpresentation

Difference in theory…Difference in theory…– People should fill these documents outPeople should fill these documents out– These documents should be consulted at the These documents should be consulted at the

appropriate time in a helpful wayappropriate time in a helpful way

……and practical applicationand practical application– What are the barriers/pitfalls?What are the barriers/pitfalls?

More Context to considerMore Context to consider

– Shifting EOL DemographicShifting EOL Demographic– Medical Community BarriersMedical Community Barriers– Cultural BarriersCultural Barriers– Patient/Healthcare proxy preparednessPatient/Healthcare proxy preparedness

Shifting EOL DemographicShifting EOL Demographic

#1 Reason#1 Reason

MEDICAL PROGRESS…MEDICAL PROGRESS…

……has changed the way we livehas changed the way we live……has changed the way we are sickhas changed the way we are sick

……has changed the way we diehas changed the way we die

Modern End of Life=Protracted Modern End of Life=Protracted CourseCourse

85% of people in the US will experience one 85% of people in the US will experience one of these trajectories at the “end of life”of these trajectories at the “end of life”– 20% Cancer20% Cancer– 25% Organ Failure25% Organ Failure– 40% Dementia/Frailty40% Dementia/Frailty

Average American 2-4 years of disability Average American 2-4 years of disability before deathbefore death

Implications on Advance Care Implications on Advance Care PlanningPlanning

Future is generally less predictableFuture is generally less predictable AdaptatationAdaptatation ““Terminal” not easy to pinpointTerminal” not easy to pinpoint Life-sustaining interventions can make us Life-sustaining interventions can make us

“better” “better” Non technical life sustaining interventions Non technical life sustaining interventions

can also make us “better”can also make us “better”

Solutions?Solutions?

The Case for Disease-Specific Advance DirectivesThe Case for Disease-Specific Advance Directives– Diseases with a predictable courseDiseases with a predictable course

ALSALS

– Diseases with unpredictable courseDiseases with unpredictable course HFHF

Goes beyond the legal documentGoes beyond the legal document– More likely that the legal document is completeMore likely that the legal document is complete– More likely to remain out of the hospital at EOLMore likely to remain out of the hospital at EOL– More likely to enroll in HospiceMore likely to enroll in Hospice

Medical Community BarriersMedical Community Barriers

Checklist Mentality (PSDA 1990)Checklist Mentality (PSDA 1990) Flow of information (patient-driven document)Flow of information (patient-driven document) TimeTime KnowledgeKnowledge WillingnessWillingness

Do you have a form? (much of the energy centered here)Do you have a form? (much of the energy centered here) Help complete the form (needs to be broader)Help complete the form (needs to be broader) Applying the form at the right time in a helpful wayApplying the form at the right time in a helpful way

– Knowledge deficitKnowledge deficit

Cultural ContextCultural Context

AutonomyAutonomy– Primary focus of EOL decision making in USPrimary focus of EOL decision making in US– Not elsewhere (Asia++)Not elsewhere (Asia++)– Not always the case (culturally, individually)Not always the case (culturally, individually)

Assumptions of the Medical ModelAssumptions of the Medical Model– Placing priority on other sources for prognosis*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

Preparedness of Patient and FamilyPreparedness of Patient and Family

What were the circumstances when these What were the circumstances when these forms were filled out?forms were filled out?

Values Assessment Example Values Assessment Example QuestionsQuestions

What do you value most about your life?What do you value most about your life? How do you feel about death and dying?How do you feel about death and dying? Do you believe that life should be preserved as Do you believe that life should be preserved as

long as possible?long as possible? If not, what kind of mental and physical conditions If not, what kind of mental and physical conditions

would make you think that life-prolonging would make you think that life-prolonging treatment should no longer be usedtreatment should no longer be used– Unaware of my life and my surroundingsUnaware of my life and my surroundings– Unable to appreciate and continue the important Unable to appreciate and continue the important

relationships in my liferelationships in my life– Unable to think well enough to make everyday decisionsUnable to think well enough to make everyday decisions– In severe pain or discomfortIn severe pain or discomfort


Could you imagine reasons for temporarily Could you imagine reasons for temporarily accepting medical treatment for the conditions you accepting medical treatment for the conditions you described?described?

How much pain and risk would you be willing to How much pain and risk would you be willing to accept if your chances of recovery from an illness accept if your chances of recovery from an illness or an injury were good (50-50 or better)?or an injury were good (50-50 or better)?

What if your chances of recovery were poor (less What if your chances of recovery were poor (less than 1 in 10)?than 1 in 10)?

Would you approach to accepting or rejecting care Would you approach to accepting or rejecting care depend on how old you were at the time of depend on how old you were at the time of treatment? Why?treatment? Why?


Do you hold any religious or moral views about Do you hold any religious or moral views about medicine or particular medical treatments?medicine or particular medical treatments?

Should financial considerations influence Should financial considerations influence decisions about your medical care?decisions about your medical care?

What other beliefs or values do you hold that What other beliefs or values do you hold that should be considered by those making medical should be considered by those making medical care decisions for you if you become unable to care decisions for you if you become unable to speak for yourself?speak for yourself?

Most people have heard of difficult end-of-life Most people have heard of difficult end-of-life situations involving family members, neighbors or situations involving family members, neighbors or people in the news. Have you had any reaction to people in the news. Have you had any reaction to those situations?those situations?

Preparedness of healthcare proxyPreparedness of healthcare proxy

What did you understand your role as What did you understand your role as healthcare proxy to be at that time?healthcare proxy to be at that time?

Role of healthcare proxy (vs. surrogate decision-Role of healthcare proxy (vs. surrogate decision-maker)maker)

Substituted judgment Substituted judgment Strike a balanceStrike a balance

Preparedness Planning the wave of Preparedness Planning the wave of the futurethe future

Annals of Internal “Redefining the Planning in Advance Care Planning; Annals of Internal “Redefining the Planning in Advance Care Planning; Preparing for EOL Decision Making”Preparing for EOL Decision Making”– AD Document is one piece of the ACP processAD Document is one piece of the ACP process– Too many hazards/ineffective to “make decisions in advance” based on incomplete Too many hazards/ineffective to “make decisions in advance” based on incomplete

or hypothetical informationor hypothetical information– Documents don’t cover some important issues (re-hospitalization)Documents don’t cover some important issues (re-hospitalization)– Communication process to prepare patients and families for the types of decisions 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 and conflicts they may encounter when they do have to make in-the-moment decisionsdecisions

– Step 1 Choosing an appropriate surrogate decision maker (having them present)Step 1 Choosing an appropriate surrogate decision maker (having them present)– Step 2 Clarifying and articulating patients’ values over timeStep 2 Clarifying and articulating patients’ values over time– Step 3 Establishing leeway in surrogate decision makingStep 3 Establishing leeway in surrogate decision making

Who is best suited to do this?Who is best suited to do this?– Primary doctors?Primary doctors?– Palliative Care teamsPalliative Care teams– Social Workers (disease specific areas)Social Workers (disease specific areas)

ResourcesResources

respectingchoices.orgrespectingchoices.org– Gunderson LutheranGunderson Lutheran

agingwithdignity.orgagingwithdignity.org– “ “Five Wishes”Five Wishes”

““Hard Choices for Loving People”Hard Choices for Loving People”– Hank DunnHank Dunn

NHDD.orgNHDD.org– April 16April 16

ReadingReading

Handbook for MortalsHandbook for Mortals– Joanne Lynn, MDJoanne Lynn, MD

Palliative Care: Transforming the Care of Palliative Care: Transforming the Care of Serious IllnessSerious Illness– Diane Meier, MDDiane Meier, MD