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 • Grants/Research Support • Speakers Bureau/Honoraria • Consulting Fees • Patents • Other
Managing Potential Bias • N/A
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
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?
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
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
Legal Background
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 own body” • Schloendorff v Society of NY Hospice (1914) Justice Cardoza
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
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
Advanced Autonomy • Advance Directives • Legal document • Representation agreement • Named Representative (SDM)
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
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
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
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
Ethical Aspects
Respecting the Incapable Patient Substituted Judgment Best Interest Standard • “We never talked about • “I know this is what mom it…” would want” • No AD, no SDM • Prior discussions • Harms vs. benefits • Preferences and values • Best overall well-being • What a “reasonable person” would want Torke Gen Int Med 2008
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
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
Best Interest Standard • Attempt to engage patient Re: values and preferences is important • Patient lifestyle • Activities and hobbies • Personality • Response to care environment
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
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
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
Inconsistency of Patient Wishes • Many patients become more (or less) willing to accept burdensome treatments over time • States previously imagined to be intolerable may be tolerable (vice-versa) • Inconsistent preferences linked with • Inconsistent health, hospitalizations • Complexity of decisions
Inconsistency of Patient Wishes • 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 Auriemma JAMA 2014
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
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
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
Unrealistic Optimism • SDM and patients have unrealistic optimism regarding cure and survival • Stress affects ability to integrate • “Inaccurate interpretations of physicians prognostications by SDMs arise partly from optimistic biases rather than simply from misunderstandings” • In our human nature to hope Zier Annals of Int Med 2012
De Bakey • 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” The Man on the Table Devised the Surgery New York Times 2006
De Bakey • 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 The Man on the Table Devised the Surgery New York Times 2006
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
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
• In review….
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
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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