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. 2024 Mar 15;16(1):e12527.
doi: 10.1002/dad2.12527. eCollection 2024 Jan-Mar.

Timely dying in dementia: Use patients' judgments and broaden the concept of suffering

Stanley A Terman  1 , Karl E Steinberg  2 , Nathaniel Hinerman  3
Affiliations

Timely dying in dementia: Use patients' judgments and broaden the concept of suffering

Stanley A Terman et al. Alzheimers Dement (Amst). .

Abstract

Patients living with advanced dementia (PLADs) face several challenges to attain the goal of avoiding prolonged dying with severe suffering. One is how to determine when PLADs' current suffering becomes severe enough to cease all life-sustaining treatments, including withdrawing assistance with oral feeding and hydrating, a controversial order. This article broadens the concept of suffering by including suffering that cannot be observed contemporaneously and the suffering of loved ones. Four paradigm shifts operationalize these concepts. During advance care planning, patients can judge which future clinical conditions would cause severe suffering. To decide when to allow patients to die, treating physicians/providers only need to assess if patients have reached patients' previously judged, qualifying conditions. Questions: Will this protocol prevent PLADs' prolonged dying with suffering? Deter early-stage dementia patients from committing preemptive suicide? Sway decision-making surrogates from withholding life-sustaining treatments from patients with middle-stage dementia? Provoke providers' resistance to relinquish their traditional, unilateral authority to determine patients' suffering?

Keywords: advanced dementia; advanced instructional health care directives; ceasing oral nutrition and hydration; end‐of‐life suffering; living wills; timing of allowing patients to die; withdrawing life‐sustaining interventions.

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Conflict of interest statement

Dr. Terman owns the Institute for Strategic Change, a for‐profit California corporation that publishes books and forms related to end‐of‐life challenges and advance care planning. As a health‐care provider, he counsels patients about advance care planning in three settings: Institute for Strategic Change; Caring Advocates, a California not‐for‐profit corporation that he founded and for which serves as its CEO and Chief Medical Officer; 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 health‐care 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. This article does not describe the advance directive or specific strategies that Dr. Terman and his colleagues developed since 2004, although it implies that advance directives should use “severe‐enough suffering” as a criterion to determine when to implement interventions that may allow patients to die. Those who read this article are not likely to be surprised to learn that Dr. Terman offers such a directive for dementia because who else but a directive drafter would analyze this area in such depth? Co‐author Karl E. Steinberg has no competing interests. Co‐author Nathanial Hinerman has no competing interests.

Figures

FIGURE 1
FIGURE 1
Reaching a condition may, or may not, cause severe‐enough suffering
See this image and copyright information in PMC

References

    1. Terman SA, Steinberg KE, Hinerman N. Flaws in advance directives that request withdrawing assisted feeding in late‐stage dementia may cause premature or prolonged dying. BioMed Cent Med Ethics. 2022;23:100. doi:10.1186/s12910-022-00831-7 - DOI - PMC - PubMed
    1. Terman SA. Can an effective end‐of‐life intervention for advanced dementia be viewed as moral? Alzheimer's Dement. 2024;e12528. doi:10.1002/dad2.12528 - DOI - PMC - PubMed
    1. AMA Code of Ethics . Opinion 2.20—Withholding or Withdrawing Life‐Sustaining Medical Treatment. Accessed 04 Sept. 2021. (Also cited as: American Medical Association. “Opinion 2.20 Withholding or withdrawing life‐sustaining medical treatment.” Code of Medical Ethics (2014): 35‐36.) https://journalofethics.ama‐assn.org/article/ama‐code‐medical‐ethics‐opi...
    1. HR 5067. Patient Self‐Determination Act of 1990. Accessed 04 Sept 2021. https://www.congress.gov/bill/101st‐congress/house‐bill/5067/text
    1. Davis DS. Alzheimer disease and pre‐emptive suicide. J Med Ethics. 2014;40(8):543‐549. - PubMed