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Lessons from Seville: Identifying and Reducing Inappropriate End-of-Life Treatment in New Jersey

Thaddeus Mason Pope, J.D., Ph.D.Z. Stanley Stys Memorial LecturePrinceton University Medical CenterMay 10, 2011

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Z. Stanley StysDanuta Buzdygan

Delighted

Honored

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April 18, 1955

Princeton, NJ

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I want to go when I want. It is tasteless to prolong life artificially.

I have done my share, it is time to go. I will do it elegantly.

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CPR

Dialysis

Mech. ventilation

ICUs

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May 2011

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More technology

Used more

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1 / 51

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Value = QualityCost

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71%: “More important to enhance the quality of life for seriously ill patients, even if it means a shorter life.”

National Journal (Mar. 2011)

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Harm to familyEmotional

Economic

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Harm to othersLimited ICU beds

ER boarding

Antibiotic resistance

Moral distress

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Why

How to fix

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PatientsSurrogatesProvidersPayers

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Patient Problem

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EOL discussionless aggressive medicine

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EOL discussion

Earlier hospice referral

Better patient QOL

Better family bereavement

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Not completedNot foundNot informedNot clear

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28% 35-50

50% 50+

30%

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65-76% of physicians whose patients have advance directives do not know they exist

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Trigger terms vague“Reasonable expectation of recovery”

75% 51%25% 10%

Plus: prognosis uncertain

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Preferences vague“No ventilator”

EverEven if temporary

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More technology is the default

Patient must opt out

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Patient Solution

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More ACP

Better documentation

Equalized safeguards

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Prompt Providers

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1991EnforcePSDA

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VoluntaryAdvance Care Planning

BlumenauerH.R. 3200Sec. 1233

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PPACA silent on ACP. But does cover annual wellness visits.

Section 4103

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DHHS: “Notice of Proposed Rulemaking: Physician Fee Schedule” (July 2010)

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Final Rule (Nov. 2010)

Defined “VACP” as element of annual wellness visit

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Lie of the Year:“Death Panels”

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A “quiet” victory

“The longer this goes unnoticed, the better our chances of keeping it.”

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Jan. 2011: Rescind VACP

“We did not have an opportunity to consider . . . the wide range of views . . . held by a broad range of stakeholders”

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Derecho a la información asistencial

Deberes respecto a la información clínica

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R2K

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BenefitsRisksAlternativesFinancial

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Prompt Patients

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Content agnostic

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Make AD

available

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RegistriesOrgan donation

NOK

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Make AD

effective

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POLSTCloses gap between what people want and what they get

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Actionable ordersMore likely honored

No need to “translate”

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PortableTravels with the patient in all treatment settings

Home LTC Hospital EMS

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SurrogateProblem

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No capacityNo instructions

Surrogate decides

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Surrogate must comply

Written instructions

Values & preferences

Best interests

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66% accurate50% = pure chance

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Moorman & Carr 62%2010

Barrio-Catelejo et al. 63%2009

Shalowitz et al. 58%2006

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Even lower

when most needed:

intermediate zones

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Moreaggressive treatment

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FutilityP/S: Curative

P/S: Palliative

D: CurativeD: Palliative

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Surrogate Solution

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EducateMediateReplaceOverride

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Educate

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Mediate

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ConsensusIntractable

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Earnest attempts . . . deliberate over and negotiate prior understandings . . .

Joint decision-making should occur . . . maximum extent possible.

Attempts . . . negotiate . . . reach resolution. . ., with the assistance of consultantsas appropriate.

Involvement of . . . ethics committee . . . if . . . irresolvable.

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Replace

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Early famous failure

Helga Wanglie

(Minn. 1991)

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85-year-old

End-stage kidney failure

Chronic respiratory failure

DementiaAlbert Barnes

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Lana BarnesSDM

“Continue”

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Feb. 4, 2011

102Dorothy Livadas

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Material COI

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Court: “Your own personal issues are “impacting your decisions”

“Refocus your assessment”

Barbara Howe

DaughterCarol Carvitt

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Limits of surrogate replacement

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Providers cannot show deviation

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Surrogates often faithful

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57%: God could heal patient even if physicians had pronounced further efforts futile

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20%: “More important to prolong life.”

National Journal (Mar. 2011)Archives Surgery (Aug. 2008)Pew Ch. (Nov. 2005)

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If cannot replace surrogate, then provide the treatment

Truog

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Capacity and

Consent Board

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Dispute resolution

mechanisms for

intractable cases in

which surrogates are

“irreplaceable”

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Override

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Physicians usually cave-in to surrogate demands

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“Remove the __, and I will sue you.”

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“Why they follow the instructions of SDMs instead of doing what they feel is appropriate, almost all cited a lack of legal support.”

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Mass. Med. Society (Nov. 2008)

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Providers have won almost every singledamages case brought after unilateral withholding

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HCP exposure = IIED

Secretive

Insensitive

Outrageous

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Risk > 0

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Betancourt v. Trinitas Hospital

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73yo male

PVS

COPD

End-stage renal disease

Hypertensive cardiovascular disease

Stage 4 decubitusulcers

Osteo-myeletitus

Diabetes

Parchment-like skin

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“The only organ that’s functioning really is his heart.”

“It all seems to be ineffective. It’s not getting us anywhere.”

“We’re allowing the man to lay in bed and really deteriorate.”

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Intramural processNo consensus

Unilateral withdrawalDNR order writtenDialysis port removed

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January 2009

Jacqueline files

Court issues TRO

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February 2009

Evidentiary hearings

Medical experts

Family members

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March 2009

Permanent injunction

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NJHA MSNJNJPGNYHACHPNJ

April 2010Disability coalition

Jewish coalition

Pope

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August 2010

Appeal dismissed

No guidanceNo clarity

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You can stop LSMT for any reason if your hospital ethics committee agrees

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48hr notice

Ethics committee meeting

Written decision

10 days

No judicial review

Tex. H&S Code 166.046

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[N]ot civilly or criminally liable or subject to review or disciplinary action . . . complied with . . . procedures

Tex. H&S Code 166.045

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Statement on Futility and Goal Conflict in End-of-Life Care in ICUs

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Intractable value conflict

Pure process

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If process is all you have, it must have integrity and fairness

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Notice

Independent, neutral decision-maker

Judicial review

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Physician Problem

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OKFutilityP/S:

Curative

OKOKP/S: Palliative

D: CurativeD: Palliative

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Informed consent

FutilityP/S:

Curative

OKOKP/S: Palliative

D: CurativeD: Palliative

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EOL communication

Defensive medicine

Offensive medicine

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Communication

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AbsentLate Wrong Bad Inconsistent

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1% 2%“improve life expectancy

by 50%”

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Defensive Medicine

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Offensive Medicine

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Would you recommend or give life-sustaining therapy when you judged it futile?

Yes 23.6%MedScape (Nov. 2010)

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Physician Solution

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Communication

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R2K

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Limited effectivenessSide effectsOptions

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Defensive Medicine

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Clinical Practice Guidelines

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Offensive Medicine

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El médico limitará el esfuerzo terapéutico, cuando la situación clínica lo aconseje, evitando la obstinación terapéutica

Art. 21

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Hargettv.

Vitas

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Strachan v. John F. Kennedy Memorial Hospital (N.J. 1988)

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FalseClaims

Act

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Medicare Problem

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Medicare Solution

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Hos

pice

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Autonomy

Beneficence

Nonmaleficence

Justice

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Thaddeus Mason Pope, J.D., Ph.D. Widener University School of Law4601 Concord Pike, Room L325Wilmington, Delaware 19803T: 302-477-2230 F: 901-202-7549E: tmpope@widener.eduW: www.thaddeuspope.com

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