Letter response to Clifford et al. “Navigating late‐stage dementia: A perspective from the Alzheimer's Association”

We are surprised to see the Perspective article of Clifford et al. framed as “a direct response to recently published works that run counter to the [Alzheimer's] Association's viewpoint,”1 since our viewpoints mostly align2: “By conversations through this manuscript and related papers, the field can elicit greater awareness that improves care for individuals with dementia.”1 We agree with the [Alzheimer's] Association's call for discussing “risks and benefits of all feeding alternatives,”3 although we legally and clinically insist: “all” must include assisted oral feeding and hydrating if the patient prefers. “Individuals living with dementia possess the legal right to control, refuse, or halt medical treatments … [even] when the person no longer can decide.”1 “Limiting treatments allows the disease to follow its natural course while prioritizing the person's comfort and dignity.”1 We note the additional critical importance for (A) early-stage dementia patients to have confidence that their wishes will be honored, so they do not consider preemptive suicide; (B) decision-makers for middle-stage dementia patients, so they do not withhold life-sustaining treatment thereby causing premature dying; and (C) loving spouses of advanced dementia patients, so they need not consider mercy killing to prevent prolonged suffering. Palliative care is essential.1 Tube feeding is clinically inappropriate for persons living with advanced dementia.4 Caregiving can both create “stress” and be a “profoundly rewarding experience.”1 Euthanasia is inappropriate for these patients; however, Clifford et al. state: “An article titled ‘Response to Stanley Terman’… presents a perspective advocating for euthanasia options for individuals in the early stages of AD or related dementias.”1 Clifford et al.'s statment is confusing. The only author they named is “Stanley Terman” (author of the original article), while the name of the author of the Open Peer Commentary (which Clifford et al. refer to as “An article”), who is “Dena Davis,” was omitted. Readers might incorrectly conclude that “Stanley Terman” is also an advocate of euthanasia–especially if they are unfamiliar with the Perspectives publication process (first the article, then Open Peer Commentaries on said article, and finally, the original author's responses to these commentaries). But Terman does not hold a “viewpoint on euthanasia [that] disagrees with the position of the Alzheimer's Association”1 by favoring euthanasia. Instead, Terman opposes euthanasia for patients living in any stage of dementia. He further opposes preemptive suicide before loss of capacity because it can result in sacrificing years of reasonably satisfying living. The patient must have an irreversible brain disorder such as Alzheimer's or related dementia. The patient must demonstrate a diligent, deliberative decision-making process in judging which clinical conditions would cause severe suffering. Both proxy/agent and treating physician/provider must agree that the patient has reached a qualifying condition.5 This protocol allows patients to receive caregivers’ assistance with feeding if they are living with conditions that they previously judged would cause only mild or moderate suffering. The inability to eat and drink is, therefore, distinct from the experience of suffering. (See Figure 1.) We agree with the Association that “careful hand feeding offers the highest quality of care.”1 But we disagree that careful hand feeding “should be offered to all individuals with advanced AD who can competently and comfortably handle oral feeding.”1 Continuing feeding “all” patients legally conflicts with, and ethically disrespects, many patients’ expressed wish to refuse feeding. Offering hand feeding to “all” patients violates universally accepted patient rights to direct their own care through advance directives.1, 7 We conditionally agree with the Association's statement, “it is ethically permissible to withhold nutrition and hydration artificially administered.”1 But we disagree if the purpose of this statement is to exclude permissibility of ceasing assisted oral nutrition and hydration. Ethically there is no relevant distinction between “artificial” and “natural” nutrition and hydration.8 And administering unwanted interventions of any type is unethical.9 Legally, physicians who order assisted oral feeding to continue, who knew or should have known the patient had refused such assistance as unwanted for specific conditions, could face liability.10 Not following the instructions of an advance directive is malpractice and a civil violation in most jurisdictions. Moreover, administering oral nutrition and hydration against patients’ instructions may be a criminal battery. In conclusion, we thank the Journal for facilitating conversations that will improve care for individuals with dementia. The authors have nothing to report. The authors declare no conflicts of interest. Author disclosures are available in the supporting information. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.