Timely dying in dementia: let patients judge using a broadened concept of suffering

Abstract

Patients living with advanced dementia (PLADs) face several challenges to attain this goal: to avoid prolonged dying with severe suffering. One is how to determine when their current suffering becomes severe enough to cease all life-sustaining treatments, including the controversial request, to withdraw assistance with oral feeding and hydrating.

This article broadens the concept of suffering. It includes suffering that cannot be observed contemporaneously and suffering experienced by loved ones. Four paradigm shifts operationalize these concepts. Patients completing advance care planning can judge which possible future clinical conditions would cause severe suffering. To decide when to allow patients to die, treating providers need only assess if patients have reached any previously judged condition.

Will this protocol: Prevent prolonged dying with suffering for PLADs? Deter early-stage dementia patients from committing preemptive suicide? Sway decision-making surrogates from withholding life-sustaining treatments from middle-stage dementia patients? Provoke providers’ opposition to relinquish their traditional, unilateral authority to determine patients’ suffering?

Note:
Funding Information: No external sources of funding

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 health care provider, he counsels patients about advance care planning in two settings: 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. He helps patients receive reimbursement for his services from health insurance companies, but his ability to accept new patients is limited so he also trains other health care providers. He has not accepted fees as a consultant, provided expert testimony in this area, or received royalties and he infrequently receives modest honoraria for presentations. This article does not specifically refer either to the advance directive or to the strategies that Dr. Terman and his colleagues have been developing since 2005. Those who are reading this article are not likely to be surprised to learn that Dr. Terman offers a directive for dementia since who else but a drafter of a directive would analyze this area in such depth? Co-author Karl E. Steinberg has no competing interests. Co-author Nathanial Hinerman has no competing interests.

Keywords: advanced dementia, end of life suffering, decision making capacity, autonomy, self-determination, ethics