When Voluntary Stopping of Eating and Drinking in Advanced Dementia Is No Longer Voluntary

Abstract

In “On Avoiding Deep Dementia,” Norman Cantor astutely notes that, for some individuals, the concept of “protracted maintenance during progressive cognitive dysfunction and helplessness is an intolerably degrading prospect.” This cannot be argued with. Cantor's solution, however—that in the wake of a dementia diagnosis, patients should have the option to direct, in advance, instructions for voluntary stopping of eating and drinking should they develop a state of deep dementia—is more ethically challenging than it may first appear. Respect for autonomy is one of the most fundamental principles of bioethics, and it requires that we allow patients with capacity to refuse life‐sustaining treatment, even when that treatment is something as seemingly innocuous as nutrition and hydration. If a capacitated person uses an advance directive to prospectively refuse artificial nutrition or hydration, then that treatment must be withheld if the person develops dementia and loses the ability or willingness to eat. Cantor is incorrect, however, in suggesting that an advance directive can require that nutrition and hydration be withheld from a patient with dementia who actively requests to eat or drink. Regardless of the language in an advance directive, caregivers cannot be compelled to abandon their duty to attend to the person's human dignity, nor can physicians be compelled to sedate a person with moderate or severe dementia because that person continues to be receptive to eating and drinking.

Challenges in advance care planning: the interface between explicit instructional directives and palliative care

“…There is conflict in the literature regarding the ethics and legality of ACDs that request the cessation of handfeeding in progressive dementia. 5,[9][10][11] In our patient's case, although the directives were not legally binding, the health care team felt that the ACD, along with his wife's input, was the best guide to appropriate care provision, particularly when it became increasingly likely that he would not regain his previous cognitive abilities. Ultimately, regardless of the instructional or values-based designation of his written instructions, there was uniform agreement that he could not have made his wishes any clearer, and accordingly this was respected.…”

Family caregivers' advocacy in voluntary stopping of eating and drinking: A holistic multiple case study

“…However, interdisciplinary there is no consensus on whether VSED is suicide, physician-assisted suicide, passive euthanasia or an intentional natural death (Simon, 2018) and the discussions about that remains ongoing (Stängle, 2021) Against this background, often inhibitions arise among FC and professionals in accompanying someone who (wants to) carry out VSED (Fringer et al, 2018), but there is consensus that support of a person who is willing to die through VSED may only be offered if there is no doubt about the ability to make independent decisions (Walther, 2015). Discussions about this are increasingly taking place in the context of people with dementia (Marks, 2016;Pope, 2019;Trowse, 2019;Wright et al, 2019) and with regard to inclusion in living wills (Christenson, 2019;Chuang & Flicker, 2018;Menzel, 2017). However, the German Association for Palliative Medicine states that assistance during VSED can be differentiated as assistance in dying and not as assistance to die .…”