Whether intentionally or inadvertently, a recent article in the Washington Post, written by a reporter with Kaiser Health News, provides confusing, incomplete, misleading, and perhaps inaccurate information about the choices a person with dementia may have. It dismisses legal issues by citing opinions from non-legal professionals.
On this blog, we have dealt often with aspects of advance directives. To prepare for using a dementia directive, readers may benefit from a discussion of the development of advance directives and problems with their language. References to several dementia directives or supplements are provided.
Prof. Thaddeus Mason Pope explains the newly-effective Nevada advance directive that allows dementia patients to voluntarily stop eating and drinking (VSED) after loss of cognitive capacity, and suggests how it may be used in some other states.
In its new “Dementia Values & Priorities Tool,” Compassion and Choices (C&C) helps people clarify their wishes if they acquire dementia. They offer a satisfactory, though limited, list of dementia-related symptoms (discussed in Part 1). In Part 2, I have identified a few other (or slightly different) symptoms that are important to me in the event that I lose the ability to hasten my own death because of dementia or some unexpected reason, such as a stroke or other event that renders me incapable of carrying out a hastened death. Part 2 concludes an analysis of C&C’s approach to dementia.
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.
Two weeks ago, I spoke to about twenty people at the regular weekly meeting of the Ethical Society of Austin (Texas). The topic was the seven choices available to a person who becomes afflicted with dementia. I began by asking what, for them, are the characteristics of a “good death.” In about ten minutes, the group offered ideas that suggest a “good death” is a viable option, with some universal characteristics, in spite of some voices to the contrary.
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.
