Case 1: The second spouse Remarried 3 years ago Lives with spouse - - PowerPoint PPT Presentation

2/15/2019 1

Winston Chiong, MD PhD

“Difficult” diagnoses (Alzheimer disease and other dementias)

Decision-making in dementia

• In this presentation, not focused on challenges

in making the diagnosis

• Instead, focus on problems in decision-making

in neurodegenerative disease

• i.e., what is often difficult about this diagnosis in

practice

Case 1: The second spouse

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
• Remarried 3 years ago
• Lives with spouse
• Spouse and children do not seem to get along

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The second spouse

• After your evaluation, the patient’s son reaches
• ut via e-mail, indicating concerns that he could

not share during the visit, and requesting a time to speak on the phone.

• Can you talk with the son? And if so, what

information can you share with him?

Appelbaum PS. N Engl J Med 2007

Initial issue: patient capacity

• Capacity is not global, not settled by diagnosis:

decision-specific

• e.g., does patient have capacity to authorize you to

speak with his son?

• 4 criteria
• Understanding (risks and benefits)
• Appreciation (apply to one’s own case: insight)
• Reasoning (consider means and ends)
• Choice (communicate, reasonable consistency)

Question 1

If the patient lacks capacity and does not have an advance directive, who is legally authorized to receive information about his care?

• A. His spouse, in all circumstances
• B. His spouse, unless there is suspicion of

abuse; in which case his children are next in line

• C. No one
• D. It depends on other features of the

situation

H i s s p

• u

s e , i n a l l c i r c u m s t a . . . H i s s p

• u

s e , u n l e s s t h e r e i s s . . . N

• n

e I t d e p e n d s

• n
• t

h e r f e a t u r e . . .

25% 25% 25% 25%

:10

https://www.americanbar.org/content/dam/aba/administrative/law_aging/2018-november-default-surrogate-consent-statutes.pdf

“Default” surrogates for health care decision-making

• Do not exist in California law for health care (do

exist for medical research…)

• CA Health Care Decisions Law passed in 2000
• Model statute (in other states):
• Individual orally designated by patient, spouse,

adult child, parent, sibling, friend

• In practice, teams often attempt to identify

most appropriate decision-maker

• Basis in practice, not in statute

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Lachs MS, Pillemer, KA. N Engl J Med 2015

The second spouse (continued)

• The patient’s son reports concerns about the

patient’s spouse:

• Other family members find it harder to see and

communicate directly with the patient

• She has taken over financial management, and has

sold family property and personal belongings

• Unclear whether the patient is receiving his

medications as scheduled

Question 2

What is NOT a likely outcome of referring this patient to Adult Protective Services?

• A. The case is closed after a brief

interview with the patient

• B. The patient is removed from the

home and institutionalized by APS

• C. The patient receives intensive case

management from APS and is referred to community services

T h e c a s e i s c l

• s

e d a f t e r a b r . . . T h e p a t i e n t i s r e m

• v

e d f r . . T h e p a t i e n t r e c e i v e s i n t e n s . . .

33% 33% 33% :10

APS ≠ CPS

• (Mandated reporters required to report any

reasonable suspicion of abuse)

• APS case worker will visit home
• 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

Case 2: A troubling discovery

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A troubling discovery

83 yo W with moderate-to-advanced dementia

• Requires assistance for basic ADLs
• Eating
• Bathing
• Toileting
• Housebound, marginally ambulatory
• Caregiver is adult daughter

A troubling discovery

• In sorting through documents, the daughter

found a living will executed in 1999:

• If given a diagnosis of dementia, would want

“nutrition and hydration” withheld

• Unclear if intended to apply only to artificial

nutrition and hydration (tube feeding)

• Daughter unaware of any prior concordant oral

statements

Margot Bentley

• 83 yo former nurse with advanced dementia
• 1991 “statement of wishes”:
• ”no nourishment or liquids”
• “euthanized” if unable to recognize family
• 2013: family petitioned to have care facility

discontinue oral feeding

Question 3

What is NOT a legal requirement for requesting a prescription for life-ending medication through the California End of Life Option Act?

A. An evaluation by a mental health specialist B. A prognosis of less than 6 months C. Capacity for medical decisions at the time that the request is made D. Two oral requests ≥ 15 days apart, and one request in writing

A n e v a l u a t i

• n

b y a m e n t a l . . . A p r

• g

n

• s

i s

• f

l e s s t h a n 6 . . . C a p a c i t y f

• r

m e d i c a l d e c i s i

• .

.

25% 25% 25% 25%

:10

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End of Life Option Act: Key points

• “Attending physician”: primary responsibility for health

care and treatment of the terminal disease

• Consulting physician: confirm prognosis, capacity
• “Terminal disease”: incurable and irreversible, within

reasonable medical judgment will result in death within six months

• Self-administer: Must have capacity to request and

ingest, not by advance directive or surrogate

• Physicians can refuse to participate, including to inform

patients about law or refer to other doctors

The “decisional trap” for those who would not want to live with advanced dementia

• Advance directive refusing interventions
• Useful for avoiding burdensome interventions
• Doesn’t preclude prolonged survival
• Pre-emptively ending life when competent
• Suicide, voluntarily stopping eating and drinking
• Potential loss of many valuable years

Menzel PT, Chandler-Cramer MC. Hastings Cent Rep. 2014;44:23–37 Quill TE, Lo B, Brock DW. JAMA 1997

Legal controversies over VSED (voluntarily stopping eating/drinking) by advance directive

• Refusal of tube feeding by advance directive
• Medical intervention with no proven benefit
• Voluntarily stopping eating eating/drinking
• Active choice to hasten death by patient with

capacity

• But: is feeding an incapacitated patient who

evinces a desire to eat morally equivalent to force-feeding a competent patient?

Deeper questions

• End-of-life care has sought to prevent some
• utcomes that we agree are bad
• Pain, unrelieved suffering
• Burdensome, invasive medical interventions
• Some people have more ambiguous fears
• Surviving in a state you now find repugnant
• Loss of self-identity
• Financial, logistical, emotional burdens on family

and loved ones