1

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

2

Z. Stanley StysDanuta Buzdygan

Delighted

Honored

3

April 18, 1955

Princeton, NJ

4

5

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.

6

CPR

Dialysis

Mech. ventilation

ICUs

7

May 2011

8

More technology

Used more

9

1 / 51

10

11

Value = QualityCost

12

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

National Journal (Mar. 2011)

13

14

15

Harm to familyEmotional

Economic

16

Harm to othersLimited ICU beds

ER boarding

Antibiotic resistance

Moral distress

17

18

19

Why

How to fix

20

PatientsSurrogatesProvidersPayers

21

Patient Problem

22

EOL discussionless aggressive medicine

23

24

EOL discussion

Earlier hospice referral

Better patient QOL

Better family bereavement

25

Not completedNot foundNot informedNot clear

26

28% 35-50

50% 50+

30%

27

28

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

29

30

Trigger terms vague“Reasonable expectation of recovery”

75% 51%25% 10%

Plus: prognosis uncertain

31

Preferences vague“No ventilator”

EverEven if temporary

32

More technology is the default

Patient must opt out

33

Patient Solution

34

More ACP

Better documentation

Equalized safeguards

35

Prompt Providers

36

1991EnforcePSDA

37

VoluntaryAdvance Care Planning

BlumenauerH.R. 3200Sec. 1233

38

39

40

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

Section 4103

41

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

42

Final Rule (Nov. 2010)

Defined “VACP” as element of annual wellness visit

43

Lie of the Year:“Death Panels”

44

A “quiet” victory

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

45

Jan. 2011: Rescind VACP

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

46

47

48

49

50

Derecho a la información asistencial

Deberes respecto a la información clínica

51

R2K

52

BenefitsRisksAlternativesFinancial

53

Prompt Patients

54

55

56

57

58

59

Content agnostic

60

Make AD

available

61

RegistriesOrgan donation

NOK

62

Make AD

effective

63

64

POLSTCloses gap between what people want and what they get

65

66

Actionable ordersMore likely honored

No need to “translate”

67

PortableTravels with the patient in all treatment settings

Home LTC Hospital EMS

68

69

SurrogateProblem

70

No capacityNo instructions

Surrogate decides

71

Surrogate must comply

Written instructions

Values & preferences

Best interests

72

66% accurate50% = pure chance

73

Moorman & Carr 62%2010

Barrio-Catelejo et al. 63%2009

Shalowitz et al. 58%2006

74

Even lower

when most needed:

intermediate zones

75

76

77

78

79

80

81

82

83

84

85

Moreaggressive treatment

86

FutilityP/S: Curative

P/S: Palliative

D: CurativeD: Palliative

87

Surrogate Solution

88

EducateMediateReplaceOverride

89

Educate

90

91

92

93

Mediate

94

ConsensusIntractable

95

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.

96

Replace

97

Early famous failure

Helga Wanglie

(Minn. 1991)

98

85-year-old

End-stage kidney failure

Chronic respiratory failure

DementiaAlbert Barnes

99

Lana BarnesSDM

“Continue”

100

101

Feb. 4, 2011

102Dorothy Livadas

103

Material COI

104

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

“Refocus your assessment”

Barbara Howe

DaughterCarol Carvitt

105

Limits of surrogate replacement

106

Providers cannot show deviation

107

Surrogates often faithful

108

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

109

20%: “More important to prolong life.”

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

110

If cannot replace surrogate, then provide the treatment

Truog

111

Capacity and

Consent Board

112

Dispute resolution

mechanisms for

intractable cases in

which surrogates are

“irreplaceable”

113

Override

114

Physicians usually cave-in to surrogate demands

115

“Remove the __, and I will sue you.”

116

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

117

Mass. Med. Society (Nov. 2008)

118

Providers have won almost every singledamages case brought after unilateral withholding

119

HCP exposure = IIED

Secretive

Insensitive

Outrageous

120

Risk > 0

121

Betancourt v. Trinitas Hospital

122

73yo male

PVS

COPD

End-stage renal disease

Hypertensive cardiovascular disease

Stage 4 decubitusulcers

Osteo-myeletitus

Diabetes

Parchment-like skin

123

“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.”

124

Intramural processNo consensus

Unilateral withdrawalDNR order writtenDialysis port removed

125

January 2009

Jacqueline files

Court issues TRO

126

February 2009

Evidentiary hearings

Medical experts

Family members

127

March 2009

Permanent injunction

128

NJHA MSNJNJPGNYHACHPNJ

April 2010Disability coalition

Jewish coalition

Pope

129

August 2010

Appeal dismissed

No guidanceNo clarity

130

131

132

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

133

48hr notice

Ethics committee meeting

Written decision

10 days

No judicial review

Tex. H&S Code 166.046

134

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

Tex. H&S Code 166.045

135

136

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

137

Intractable value conflict

Pure process

138

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

139

Notice

Independent, neutral decision-maker

Judicial review

140

141

Physician Problem

142

OKFutilityP/S:

Curative

OKOKP/S: Palliative

D: CurativeD: Palliative

143

Informed consent

FutilityP/S:

Curative

OKOKP/S: Palliative

D: CurativeD: Palliative

144

EOL communication

Defensive medicine

Offensive medicine

145

Communication

146

147

AbsentLate Wrong Bad Inconsistent

148

1% 2%“improve life expectancy

by 50%”

149

Defensive Medicine

150

151

152

Offensive Medicine

153

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

Yes 23.6%MedScape (Nov. 2010)

154

155

Physician Solution

156

Communication

157

158

R2K

159

Limited effectivenessSide effectsOptions

160

Defensive Medicine

161

Clinical Practice Guidelines

162

163

Offensive Medicine

164

165

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

Art. 21

166

Hargettv.

Vitas

167

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

168

FalseClaims

Act

169

170

Medicare Problem

171

172

173

174

Medicare Solution

175

176

177

Hos

pice

178

Autonomy

Beneficence

Nonmaleficence

Justice

179

180

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