Timely Dying in Dementia: Abandon the Three-Decade U.S. Tradition of Asking Surrogates for Their Substituted Judgment to Honor the End-of-Life Wishes of Incapacitated Patients

60 Pages Posted: 3 Aug 2022 Last revised: 19 Jun 2023

See all articles by Stanley Terman

Stanley Terman

Caring Advocates or Institute for Strategic Change

Date Written: July 28, 2022

Abstract

This article reviews a body of literature that supports abandoning the three-decade practice of asking surrogates for their substituted judgment to make treatment decisions for incapacitated patients, including people living with advanced dementia. The reviewed articles were published between 1993 and early 2022. The reported concordance—between the treatment patients would want, and the treatment surrogates predicted they would want—was for all but one study, only slightly better or even worse than flipping a coin. Surrogates can also be thwarted by intrinsic factors: lacking knowledge, objectivity, or skill required to persuade providers to implement medical orders that reflect what patients want. External challenges can be formidable, especially if patients need the controversial order, “Cease assisted feeding,” which some authorities categorically refuse to write. The devastating result can force patients to endure a prolonged dying with severe suffering despite their claim right to demand others honor their goal to reduce their suffering so they can experience a peaceful and timely dying.

A possible solution: During advance care planning, patients can complete a series of “Future POLSTs” that anticipate future changes in medical status. Future POLSTs may succeed because (A) patients engage in POLST conversations with providers before consenting to Future POLSTs, so orders accurately reflect patients’ values and treatment preferences; and (B) POLSTs orders are generally binding since state laws or practice guidelines require that health care providers in all treatment settings “shall” honor POLST orders.

The article presents counterarguments to likely objections to this proposed solution: POLSTs are appropriate only for frail, or seriously or terminally ill patients; the proposal is too clinically restrictive since it forbids completing new POLSTs after patients lose capacity; and future factors cannot be predicted or considered during advance care planning.

The article proposes a hierarchy of risk for various types of surrogates. Providers may someday be required to inform patients completing advance care planning that: (A) evidence does not support their expectation that surrogates can facilitate their end-of-life goals; and (B) they have the option to complete a series of “Future POLSTs.” The Appendix considers four provider-patient models as they engage in POLST Conversations.

Note:
Funding Information: None to declare.

Conflict of Interests: University of California, Irvine, Paid $500 to Caring Advocates in 2019 to speak to their emeritus association. CEO and chief medical officer of Caring Advocates, a California not-for-profit organization, Receives fees from patients for advance care planning for which health insurance usually reimburses partially. Institute for Strategic Change (100% owned), a type C California corporation, Receives fees from patients for advance care planning for which health insurance usually reimburses partially. Sells books, written forms, and access to internet programs related to advance care planning, some of which is partially reimbursed by health insurance companies. Psychiatric Alternatives and Wellness Center, Independent contract agreement that results in my receiving for which health insurance usually reimburses partially.

Keywords: end-of-life care, advanced dementia, Alzheimer’s, surrogate decision-making, POLST (providers or portable orders for life-sustaining treatment), withdrawing assistance with oral feeding

Suggested Citation

Terman, Stanley, Timely Dying in Dementia: Abandon the Three-Decade U.S. Tradition of Asking Surrogates for Their Substituted Judgment to Honor the End-of-Life Wishes of Incapacitated Patients (July 28, 2022). Available at SSRN: https://ssrn.com/abstract=4175688 or http://dx.doi.org/10.2139/ssrn.4175688

Stanley Terman (Contact Author)

Caring Advocates or Institute for Strategic Change ( email )

45 Bulkley Avenue
#4
Sausalito, CA 94965
United States
(760) 704-7524 (Phone)
(888) 767-6322 (Fax)

HOME PAGE: http://www.CaringAdvocates.org

Do you have a job opening that you would like to promote on SSRN?

Paper statistics

Downloads
81
Abstract Views
422
Rank
518,991
PlumX Metrics