2/15/2019 Decision-making in dementia • In this presentation, not focused on challenges in making the diagnosis • Instead, focus on problems in decision-making “Difficult” diagnoses in neurodegenerative disease (Alzheimer disease and other • i.e., what is often difficult about this diagnosis in dementias) practice Winston Chiong, MD PhD The second spouse 68 yo M with recent new diagnosis of Alzheimer’s disease: memory and executive deficits of unclear duration (at least 2 years) • Three adult children from an earlier marriage Case 1: The second spouse • Remarried 3 years ago • Lives with spouse • Spouse and children do not seem to get along 1
2/15/2019 The second spouse Initial issue: patient capacity • After your evaluation, the patient’s son reaches • Capacity is not global, not settled by diagnosis: out via e-mail, indicating concerns that he could decision-specific not share during the visit, and requesting a time • e.g., does patient have capacity to authorize you to to speak on the phone. speak with his son? • 4 criteria • Understanding (risks and benefits) • Can you talk with the son? And if so, what • Appreciation (apply to one’s own case: insight) information can you share with him? • Reasoning (consider means and ends) • Choice (communicate, reasonable consistency) Appelbaum PS. N Engl J Med 2007 “Default” surrogates for health care decision-making Question 1 • Do not exist in California law for health care (do If the patient lacks capacity and does not have an advance directive, who is legally authorized to receive information exist for medical research…) about his care? 25% 25% 25% 25% • CA Health Care Decisions Law passed in 2000 A. His spouse, in all circumstances • Model statute (in other states): B. His spouse, unless there is suspicion of • Individual orally designated by patient, spouse, abuse; in which case his children are next in line adult child, parent, sibling, friend C. No one • In practice, teams often attempt to identify D. It depends on other features of the most appropriate decision-maker situation e n . . . . . . o . . . s e a o t s r s i N u m e t a r u e e • Basis in practice, not in statute c h f r i t r c e s h l s a l e t l o n n n i u o , e e , s s s d u u n https://www.americanbar.org/content/dam/aba/administrative/law_aging/2018-november-default-surrogate-consent-statutes.pdf o o e p p p s s e s d i s :10 H H i t I 2
2/15/2019 Question 2 The second spouse (continued) • The patient’s son reports concerns about the What is NOT a likely outcome of referring this patient to Adult Protective Services? 33% 33% 33% patient’s spouse: A. The case is closed after a brief • Other family members find it harder to see and interview with the patient communicate directly with the patient B. The patient is removed from the • She has taken over financial management, and has home and institutionalized by APS sold family property and personal belongings C. The patient receives intensive case • Unclear whether the patient is receiving his management from APS and is referred to community services medications as scheduled . . . . . . . r . s b r f n a e d t r e n e v t i o s f a m e d e v i e r e c s s o i e c l t r n t s e n i i e e t a i s t a p a c e p e h e Lachs MS, Pillemer, KA. N Engl J Med 2015 h T h T T :10 APS ≠ CPS • (Mandated reporters required to report any reasonable suspicion of abuse) • APS case worker will visit home Case 2: A troubling discovery • Patients with capacity can refuse involvement • In cases of incapacity, committed to “least restrictive alternative” for meeting needs • Case worker can provide links to social work and community support 3
2/15/2019 A troubling discovery A troubling discovery • In sorting through documents, the daughter 83 yo W with moderate-to-advanced dementia found a living will executed in 1999: • Requires assistance for basic ADLs • If given a diagnosis of dementia, would want • Eating “nutrition and hydration” withheld • Bathing • Unclear if intended to apply only to artificial • Toileting nutrition and hydration (tube feeding) • Housebound, marginally ambulatory • Daughter unaware of any prior concordant oral • Caregiver is adult daughter statements Margot Bentley Question 3 • 83 yo former nurse with advanced dementia What is NOT a legal requirement for requesting a prescription for • 1991 “statement of wishes”: life-ending medication through the California End of Life Option Act? 25% 25% 25% 25% • ”no nourishment or liquids” A. An evaluation by a mental health specialist • “euthanized” if unable to recognize family B. A prognosis of less than 6 months • 2013: family petitioned to have care facility C. Capacity for medical decisions at the time that the request is made discontinue oral feeding D. Two oral requests ≥ 15 days apart, and one request in writing . . . . o . . . . s i a l i 6 c t n e n e a d h m a l t a c s s i y d e e b l f m n o o r s o i a t s i f o y u l n t a g c i v a o e r p p a n A A C :10 4
2/15/2019 The “decisional trap” for those who would not End of Life Option Act: Key points want to live with advanced dementia • “Attending physician”: primary responsibility for health • Advance directive refusing interventions care and treatment of the terminal disease • Useful for avoiding burdensome interventions • Consulting physician: confirm prognosis, capacity • Doesn’t preclude prolonged survival • “Terminal disease”: incurable and irreversible, within • Pre-emptively ending life when competent reasonable medical judgment will result in death within six months • Suicide, voluntarily stopping eating and drinking • Self-administer: Must have capacity to request and • Potential loss of many valuable years ingest, not by advance directive or surrogate • Physicians can refuse to participate, including to inform patients about law or refer to other doctors Legal controversies over VSED (voluntarily stopping Deeper questions eating/drinking) by advance directive • Refusal of tube feeding by advance directive • End-of-life care has sought to prevent some outcomes that we agree are bad • Medical intervention with no proven benefit • Pain, unrelieved suffering • Voluntarily stopping eating eating/drinking • Burdensome, invasive medical interventions • Active choice to hasten death by patient with • Some people have more ambiguous fears capacity • But: is feeding an incapacitated patient who • Surviving in a state you now find repugnant evinces a desire to eat morally equivalent to • Loss of self-identity force-feeding a competent patient? • Financial, logistical, emotional burdens on family and loved ones Menzel PT, Chandler-Cramer MC. Hastings Cent Rep. 2014;44:23–37 Quill TE, Lo B, Brock DW. JAMA 1997 5
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