Timely Dying in Dementia: An Evolving, Binding, Irrevocable Contract to Persuade Physicians to Honor Advance Directives that Request Cessation of Assisted Oral Feeding
47 Pages Posted: 29 Nov 2022
Date Written: November 27, 2022
Background: Using advance directives to avoid prolonged personal suffering and burdening loved ones due to advanced dementia is challenging. Some physicians, their organizations, and others oppose honoring advance directives that request the needed but controversial order, “Cease oral assisted feeding and hydrating.”
Presentation: This article cites ethical principles and case law designed to persuade providers to change their paternalistic behavior, but it may not succeed so it proposes bilateral contracts that empower proxies/agents to serve as a bridge between the advance care planning patient of the past and the treating provider of the future.
Completing a series of “Future POLSTs” during advance care planning can be binding since health care providers “shall” honor POLSTs across all treatment settings. Yet advanced dementia patients may apparently change their mind about ceasing assisted feeding. To overcome potential sabotage, POLST orders can be made irrevocable by a bilateral (Ulysses) contract that transfers decision-making authority from the incapacitated patient to the proxy/agent.
Future POLSTs can be stored in registries for which a committee of proxies/agents can serve as the gatekeeper. To prevent premature implementation, members can be required to reach a consensus of substituted judgment of available proxies/agents regarding the patient having reached a condition that s/he pre-judged would cause irreversible, severe enough suffering.
Significance: Bilateral contracts, Future POLSTs, registries, and patient decision committees may help advanced dementia patients attain the goal-concordant care of timely dying.
Funding Information: None to declare.
Conflict of Interests: Dr. Terman owns the Institute for Strategic Change that publishes books and forms related to end-of-life challenges and advance care planning. As a healthcare provider, he counsels patients about advance care planning in three settings: Caring Advocates, a California not-for-profit corporation that he founded and serves as its CEO and Chief Medical Officer; Institute for Strategic Change, a for-profit California corporation; and Psychiatric Alternatives and Wellness Center, as an independent contractor. He helps patients receive reimbursement for his services from health insurance companies, but his ability to accept new patients is limited so he trains other healthcare providers. He has not accepted fees as a consultant, provided expert testimony in this area, or received royalties. He infrequently receives modest honoraria for presentations.
Keywords: advanced dementia; ceasing assisted feeding; end-of-life decisions; paternalism; electronic registry; Physician Orders for Life-Sustaining Treatment (POLST); Ulysses contract; role of surrogates/agents; goal-concordant care
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