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.
A Washington state man, Aaron McQ, described his illness (a rare form of ALS) as "terrifying . . . like waking up every morning in quicksand." He agreed to discuss his experience with Kaiser News to help provide more understanding about how users feel after qualifying for PAD. Over 3,000 terminally ill residents in the US have used PAD laws since Oregon's first took effect twenty years ago. This is one man's experience.
Many older people decide for themselves that they don't want to be wholly dependent on others, and they don't want to be remembered as someone in that circumstance. Others do not want to be an increasing burden on their family, a decision that is theirs, irrespective of whether the family feels that they are a burden. Such old and increasingly infirm individuals may get little, if any, pleasure from living with myriad physical dysfunctions, and all that such health problems entail. They are the ones who should decide whether their lives are any longer worth living.
Nothing is more personal than how we define a good death, yet our definition may not be obvious at first. Consideration of this question leads me to the idea that a good death is a dignified death; that is, the dying process is dignified. To maintain dignity in the dying process depends greatly on how our death comes. If it comes through violent means, dignity may not be found.
Disability rights groups that oppose self-determination for people who seek physician-assisted dying (PAD ) argue that such people should not have the right to decide for themselves when their lives are no longer tenable. Nevertheless, the disability rights groups do make points related to PAD that are worth considering; for one, they have helped me realize that over the last ten years I have become disabled.
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.
The Society for Humanistic Judaism (SHJ) supports the right of all people to decide when their lives should end. This post looks at the SHJ's position on physician-assisted death.
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.
Jim Waun, a retired anesthesiologist, shares some of his personal experiences that led him to support the Death With Dignity movement and the Final Exit Network (FEN), and he explains how FEN's Exit Guide program works.
