Compassion & Choices is trying to do more for those with a dementia diagnosis through a new online “Dementia Values & Priorities Tool.” This post is the first part of an exploration of C&C’s approach to dementia advance planning.
Thanks to everyone who made suggestions to deal with Jane’s presumptive problems (see previous post). If Jane had an independent social worker–one not in her healthcare system–that person might respond to Jane’s difficulties with something like the following:
If we use “existential suffering” as a stand-in for all of the related terms we use, it will help us discuss what we may mean by them. Certainly, distress, dread, angst, anxiety, anguish, or crisis all suggest suffering at least in a mental or psychological sense, a kind of suffering that all people encounter at one point or another in their lives, or even daily. Some existential suffering can be mitigated through changes in circumstances or with the help of others, but when one is dying, whether slowly or rapidly, one may wish to forego the suffering whether or not there may be temporary relief for it.
Lamar Hankins shares his notes taken from a lecture by Professor Thaddeus Pope, who spoke on the topic “Avoiding Advanced Dementia with a VSED Directive” for the Hemlock Society of San Diego.
Larissa MacFarquhar discusses treatment approaches for people in the late stages of dementia in the October 8, 2018, issue of The New Yorker–The Comforting Fictions of Dementia Care. It is not unusual for late-stage dementia patients to have delusions (the belief in something that is not real) or hallucinations (false sensory perceptions of objects or events). How caregivers might respond to these and related dementia problems is the subject of MacFarquhar’s article.
Since the 1970s there have been debates about whether “patients” have the right to refuse various forms of life-saving or life-sustaining medical treatment, ranging from blood transfusions to ventilators and feeding tubes. More recently the debate has moved into the area of dementia and which, if any, kinds of treatment may be refused under the terms of a directive written in advance of loss of decision-making capacity. The issue of forced feeding is addressed by several articles in the July/August issue (48:4) of the Hastings Center Report, one of the nation’s preeminent bioethics publications.
This post lays out a process for making a dementia directive to be used when or if we become unable to make our own views known because of mental incapacity. If you are willing to live with dementia through the end of the disease, this post will not be of use to you.
In Part 2 of this post about dementia, disability, and advance directives, Lamar Hankins challenges Dresser’s assertion that an advance directive that calls for allowing a person to die in the later stages of dementia should be ignored in favor of her view of what care is appropriate.
Rebecca Dresser is a law professor and recognized expert in biomedical ethics. She argues that “people usually live for many years after a dementia diagnosis, years in which meaningful and satisfying life can continue. People can’t be sure how they will fare as dementia patients . . .” She suggests that because dementia patients can adapt to their new circumstances, they must, therefore, be allowed to accept this new life.. Lamar Hankins analyses her ideas in a two-part post.
As I have stated previously in these posts, I do not intend to allow myself to live far into the condition we term dementia, should that fate befall me. However, we never know what might happen to thwart our intentions, which is why I have chosen to use advance directives as creatively as possible to prevent being forced to live a life that I find intolerable and inhumane. This is why I welcome any efforts to create the circumstances that allow everyone to have the lives and deaths they want.
