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Deciding for others: the ethics of substituted decision making Dr. - - PowerPoint PPT Presentation

Jul 04, 2023 281 likes •799 views

Deciding for others: the ethics of substituted decision making Dr. Jocelyn Chase Geriatric Medicine, UBC Clinical Instructor PHC Ethics Fellow Presenter Disclosure Presenter: Jocelyn Chase Relationships with financial sponsors: None

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SLIDE 1

Deciding for others: the ethics of substituted decision making

  • Dr. Jocelyn Chase

Geriatric Medicine, UBC Clinical Instructor PHC Ethics Fellow

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SLIDE 2

Presenter Disclosure

  • Presenter: Jocelyn Chase
  • Relationships with financial sponsors: None
  • Grants/Research Support
  • Speakers Bureau/Honoraria
  • Consulting Fees
  • Patents
  • Other
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SLIDE 3

Managing Potential Bias

  • N/A
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SLIDE 4

Case Mrs. W – 84F

  • Geriatric Consult – “goals of care”
  • 6 weeks post L MCA CVA, CHF
  • Dysphagia - NG tube
  • Restrained, non-verbal, bed bound
  • G-tube has been offered
  • Team - poor prognosis and suffering
  • Family – undecided
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SLIDE 5

Issue #1

  • Many patients are incapable
  • Advance directives or discussions with

family have not always occurred

  • And are not always helpful
  • How can we respect a patient’s wishes

if we don’t know what they are?

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SLIDE 6

Issue #2

  • Age of astounding medical complexity
  • Manner and timing of death
  • Extension of life with disability
  • Pressure on families
  • Emotional distress
  • Pressure on physicians
  • Prognosis, harms vs. benefits
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SLIDE 7

Objectives

1) Define the BC legal landscape in decision making for incapable patients 2) Analyze the ethical considerations involved in substituted decision making 3) Apply evidence based techniques to support good substitute decision making

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SLIDE 8

Legal Background

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The Modern Way - Autonomy

  • “The right to accept or reject medical

treatment is based on the common law principle that every individual of sound mind and adult years has a right to determine what should be done with his

  • wn body”
  • Schloendorff v Society of NY Hospice

(1914) Justice Cardoza

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SLIDE 10

The Modern Way - Autonomy

  • Informed Consent
  • Patients must be given information

about and understand the risks and benefits of a specific treatment and can apply this information to their health

  • Physicians become technicians rather

than decision makers

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SLIDE 11

Threats to Autonomy

  • 70% of hospitalized older adults are

incapable and/or need assistance with decision making

  • Delirium
  • Dementia
  • Depression
  • Increases with frailty, medical acuity

and decisional complexity

Bilanakis N Clinical Practice and Epidemiology in Mental Health 2014

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SLIDE 12

Advanced Autonomy

  • Advance Directives
  • Legal document
  • Representation agreement
  • Named Representative (SDM)
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SLIDE 13

Challenges with AD

  • Minority of patients have one
  • ~30% of Canadians
  • Cannot predict every situation
  • Might actually change your mind!
  • Appointing SDM may be more valuable
  • Discussions are more important than

paperwork

Teixeira BMJ Supp Pall Care 2015

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SLIDE 14

What is a Medical SDM?

  • Empowered to make medical

decisions for incapable patient

  • In theory:
  • SDM should make the same decision

that the patient would make if they had capacity

  • Extension of principle of autonomy
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SLIDE 15

In BC: Substitute Decision Makers

  • Rep Agreement/Committee of Person
  • Spouse or common law –(same sex partner)
  • Adult child (or children)
  • Parent
  • Sibling
  • More distant relatives
  • Close friend
  • Public Guardian and Trustee

Health Care Consent and Facility Admission Act RSBC 1996 Act 288

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SLIDE 16

In Reality…. things get messy

  • Conflicting agendas within families
  • Disagreement over prognosis
  • Challenges interpreting prior wishes

in the unique medical context

  • Subjective determinations about

meaningful quality of life

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SLIDE 17

Ethical Aspects

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SLIDE 18

Respecting the Incapable Patient

Substituted Judgment Best Interest Standard

  • “We never talked about

it…”

  • No AD, no SDM
  • Harms vs. benefits
  • Best overall well-being
  • What a “reasonable

person” would want

  • “I know this is what mom

would want”

  • Prior discussions
  • Preferences and values

Torke Gen Int Med 2008

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SLIDE 19

Problems - Best Interest Standard

  • Subjectivity in QOL determination
  • What is acceptable QOL for you may not

be acceptable for others

  • Acceptable QOL for others may not be

acceptable to you

  • What a “reasonable person would want”

may not be accurate for this patient

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SLIDE 20

CPR Preferences for Homeless

  • Want CPR if in permanent coma
  • 33% yes CPR
  • 42% keep alive on ventilator
  • Want CPR if advanced dementia
  • 23% yes CPR
  • 32% keep alive on ventilator
  • Assumption about poor QOL can be wrong
  • Ethnicities, religions, life experiences etc…

Norris Chest 2005

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SLIDE 21

Best Interest Standard

  • Attempt to engage patient Re: values

and preferences is important

  • Patient lifestyle
  • Activities and hobbies
  • Personality
  • Response to care environment
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SLIDE 22

Problems -Substituted Judgment

  • Accuracy of SDM decision makers
  • 16 studies 2595 SDM/patient pairs
  • Survey on EOL scenarios
  • SDMs 68% accurate
  • Prior discussion didn’t improve accuracy
  • Undermines claim that SDMs always know

what patient wants

Shalowitz Arch Int Med 2006

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SLIDE 23

Problems - Substituted Judgment

  • Physicians predict preferences less

accurately than family

  • 55 – 65% accuracy
  • Patient’s family physician not better than

hospital physicians

  • Access to AD does not significantly improve

accuracy

  • Family members, although imperfect,

know their loved ones preferences best

Coppola et al. Arch Int Med 2001

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SLIDE 24

Inconsistency of Patient Wishes

  • 189 community dwelling > 60 yrs with

severe comorbidities

  • Willing to undergo burdensome

treatment to avoid death

  • 35% inconsistent responses over time
  • Willing to risk cognitive disability
  • 49% inconsistent responses over time

Fried JAGs 2007

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SLIDE 25

Inconsistency of Patient Wishes

  • Many patients become more (or less)

willing to accept burdensome treatments

  • ver time
  • States previously imagined to be intolerable

may be tolerable (vice-versa)

  • Inconsistent preferences linked with
  • Inconsistent health, hospitalizations
  • Complexity of decisions
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  • Stability of EOL preferences
  • 59 articles
  • 70% of patients had stable preferences
  • Advance Directives = greater stability
  • More stability in preference to forego

treatment than to receive

  • Pts know more about what they don’t want

than what they do want

Inconsistency of Patient Wishes

Auriemma JAMA 2014

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SLIDE 27

Problems - Substituted Judgment

  • How can SDMs be expected to perfectly

predict preferences?

  • Patients own preferences regarding life

sustaining Rx change over time

  • Counsel families that flexibility in the

face of changing health is appropriate

  • Patients know what they don’t want
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SLIDE 28

Accuracy of Prognosis

  • Survival estimates guided by intuition

and experience are often incorrect

  • Terminal cancer hospice patients
  • Physicians overestimated 43 - 63% of the

time (sometimes by months)

  • More accurate when clearly at EOL
  • Prognostic models improve physician

accuracy

Amano Pain Symptom Manage 2015

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SLIDE 29

Accuracy of Prognosis

  • Prognosis in multi-morbidity even

more challenging!

  • Walter Index – risk of death in 1 year
  • BISEP Index – risk of death in 1 year
  • Clinical Frailty Scale – median survival
  • Clinical judgment

Walter JAMA 2001 Inouye Med Care 2003 Rockwood CMAJ 2005

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Unrealistic Optimism

  • SDM and patients have unrealistic
  • ptimism regarding cure and survival
  • Stress affects ability to integrate
  • “Inaccurate interpretations of physicians

prognostications by SDMs arise partly from

  • ptimistic biases rather than simply from

misunderstandings”

  • In our human nature to hope

Zier Annals of Int Med 2012

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SLIDE 31
  • 97M requires the surgery he invented
  • Dissecting AAA, delirious
  • Wishes: clear DNR and refusal of surgery
  • Anesthesia refused (medical judgment)
  • While ethics committee debating,

wife demands surgery

  • “Everything my husband has done was for the

family, and now the family demands it”

De Bakey

The Man on the Table Devised the Surgery New York Times 2006

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SLIDE 32
  • Surgery performed
  • > 1 year long arduous recovery
  • Delirium and severe deconditioning
  • 1 million $ hospital bill
  • Happy to be alive
  • DC home, died 2.5 years post op, age 99
  • Moral of the story?
  • Wishes were clearly violated, but happy
  • SDMs generally trump all

De Bakey

The Man on the Table Devised the Surgery New York Times 2006

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SLIDE 33

SDMs – Emotional Factors

  • 1/3 of SDMs experience negative

emotional burden after decisions

  • Anxiety, depression, PTSD
  • More severe than other disaster survivors
  • Intense guilt and uncertainty
  • Lasting months to years
  • Substantially reduced if prior ACP

discussions occurred

Wendler Annals of Int Med 2012

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SLIDE 34

SDMs - Contextual Factors

  • Projection of own values
  • Religious values “Only God can know”
  • Prior health experiences
  • Miraculous recoveries
  • Prior traumatic experiences
  • Distrust of medical system
  • Is SDM acting in good faith?
  • Hard to prove
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SLIDE 35
  • In review….
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SLIDE 36

Coaching -Substituted Judgment

  • 45 elderly subjects and caregivers
  • Choices in response to scenarios
  • “What decision would your loved one make

for themselves in this situation?”

  • “What is the best decision?”
  • Substituted judgment achieves better

agreement with patient’s wishes

Tomlinson The Gerontologist 1990

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SLIDE 37

Shared Decision Making

  • 202 medical patients mean age 65
  • 63% preferred shared
  • 22% preferred physician only
  • Especially patients > 75 years
  • 15% preferred patient only
  • Majority of patients prefer that

physicians have input into decisions

Mazur Health Expect 2005

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SLIDE 38

Shared Decision Making

Medical Indications

  • Diagnosis
  • Prognosis
  • Expected outcome with

various interventions

Patient Preferences

  • SDM
  • Patient wishes
  • Values and preferences

Quality of Life

  • Previous quality of life

prior to illness

  • Expected quality of life

with various interventions

Contextual Factors

  • Religious and cultural
  • Family dynamics
  • Legal and financial

“Four boxes” Jonsen 2010

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SLIDE 39

Shared Decision Making

  • Physician helps patient (or SDM)

interpret medical information in the context of their values and preferences

  • Personalizing information
  • Shifting autonomy to dignity
  • Offer an opinion
  • Different than informed consent
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SLIDE 40

Easy Decision Making

  • Clarity of patient wishes
  • Clarity of prognosis and trust of

physicians

  • Unanimity of family
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SLIDE 41

Easy Decision Making

  • 85 F with massive CVA
  • No likelihood of independent living
  • Has AD
  • Discussed with and appointed son
  • Clearly wouldn’t want to live this way
  • All 3 children agree
  • Gets PNA
  • Family request comfort care
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SLIDE 42

Difficult Decision Making

  • Patient with unknown or changeable

wishes

  • Uncertain prognosis (possibly

disagreement within the team)

  • Differences of opinions within family
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SLIDE 43

Case Mrs. W – 84F

  • Family divided
  • 1 daughter against PEG
  • 2 daughters unsure
  • 1 daughter – “do everything, even if she

dies on the table”

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Shared Decision Making

Medical Indications

  • Severe neurologic

compromise with little hope for functional recovery

Patient Preferences

  • No wishes left by patient
  • No decision maker

(default to 4 daughters)

  • Patient valued family

time, shared meals

Quality of Life

  • Previous QOL good PTA
  • Prospects for QOL with

PEG likely poor (restrained, bed bound)

Contextual Factors

  • Family dynamics around

care giver burden and guilt over being away

  • verseas

“Four boxes” Jonsen 2010

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SLIDE 45

Shared Decision Making

Medical Indications

  • Poor prognosis
  • Lack of benefit and harms
  • f feeding tube
  • Walter Index 64%

mortality 1 year

Patient Preferences

  • Patient valued family

time, shared meals

Quality of Life

  • Poor prospects for quality
  • f life

Contextual Factors

  • SDM guilt
  • “I can’t be the one to say

no for mom”

  • “What will I tell the

family back home”

“Four boxes” Jonsen 2010

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Evidence Based Practical Tips

  • Physicians should encourage ACP
  • Helps to crystallize preferences
  • Patients know what they don’t want
  • Reduces SDM guilt
  • Support SDMs
  • Coaching and sharing the burden
  • Identify unrealistic optimism
  • Normalize idea that patient wishes change
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SLIDE 47

Other Tips

  • Handover discussions about goals of

care and expectations, prognosis

  • Pre-family meeting game plan
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SLIDE 48

Other Tips

  • Decision making is a journey, not a

destination….

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SLIDE 49

Not Perfect But Best We Have

  • “If clinicians remain committed to the

belief that patient autonomy is not completely abrogated when patients lose their decision making capacity, there remains little choice but to continue to ask those who know the patient best what they think the patient would want.”

  • Sulmasey Ann Int Med 1998
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SLIDE 50

Conclusions

  • SDMs will always be needed
  • Physicians have the duty to coach and

support SDMs

  • Shared decision making
  • ACP discussions
  • Ethical frameworks can be helpful
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