Timely Dying in Dementia: An Illustrated, Easy-To-Complete, Comprehensive Living Will

37 Pages Posted: 9 Feb 2024 Last revised: 25 Mar 2024

See all articles by Stanley Terman

Stanley Terman

Caring Advocates or Institute for Strategic Change

Date Written: February 7, 2024

Abstract

One in ten Americans over 65 live with dementia, a cruel, burdensome, and prolonged terminal illness. Over 130 million Americans have low health literacy. They may fear completing living wills that they cannot understand while they appreciate the stakes are life-or-death. Other patients had adequate health literacy, but waited until they received the diagnosis of early-stage dementia, so that by then, they lost some cognitive functioning and ability to comprehend living wills. There is thus widespread need for easy-to-comprehend living will that presents a set of specific, clear and convincing, comprehensive requests that authentically reflect patients’ lifelong values and treatment preferences—so patients can attain a peaceful and timely dying. Example of a lifelong, personal value: “I don’t want my disease to impose a huge burden on my loved ones.” Example of a treatment preference: “I do not want to die connected to a feeding tube or breathing machine.”

Sometimes, patients living with advanced dementia (PLADs) need controversial interventions such as “Cease assisted oral feeding and hydrating” or “Palliative sedation to unconsciousness.” Either can be PLADs’ last resort to avoid a prolonged dying with severe suffering, if their survival depends only receiving food and fluid.

This article describes the current version and the highlights of the 18-year development of a living will created by this author. Each condition is illustrated and written at third-grade level reading comprehension. Its set of 50 conditions strives to be comprehensive. During advance care planning (ACP), providers conduct semi-structured interviews that memorialize patients’ oral testimony on video as it demonstrates their voluntariness and decision-making capacity. This essay describes a few of the unique aspects of development, such as using the technique of cognitive interviewing to improve content validity, and asking patients to judge each condition for how much suffering it would cause, which judgments can be translated directly into POLSTs. POLSTs are sets of immediately actionable, effective provider orders.

Over 250 patients have completed the directive, but evaluating its success will require gathering enough data from patients after sufficient time has elapsed between ACP and reaching an advanced stage of dementia. Success is defined as patients receiving goal-concordant care.

Note:

Funding Information: This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Conflict of Interests: Dr. Terman owns the Institute for Strategic Change, a for-profit California corporation that publishes books and forms that relate to advance care planning. As a healthcare 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 serves as its CEO and Chief Medical Officer; and Psychiatric Alternatives and Wellness Center (as an independent contractor). Patients usually receive partial reimbursement for his services from health insurance companies. While this article may increase awareness of the advance directive for which he holds the copyright, his ability to accept new patients is limited, so he trains other healthcare providers. Additional revenue will likely be modest since the minimum donation amount (to Caring Advocates) can be as low as $1.00 and a free, online excerpt is also available at tinyurl.com/MyWayCardsDemo. He has not accepted fees as a consultant, provided expert testimony in this area, or received royalties but he infrequently receives modest honoraria for presentations.

Keywords: advanced dementia, end of life suffering, living will, withdrawal of assisted feeding, healthcare literacy,

Suggested Citation

Terman, Stanley, Timely Dying in Dementia: An Illustrated, Easy-To-Complete, Comprehensive Living Will (February 7, 2024). Available at SSRN: https://ssrn.com/abstract=4720022 or http://dx.doi.org/10.2139/ssrn.4720022

Stanley Terman (Contact Author)

Caring Advocates or Institute for Strategic Change ( email )

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

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

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