This National Academies of Sciences, Engineering, and Medicine sponsored a workshop last week that was intended to explore the evidence base and research gaps relating to the implementation of the clinical practice of allowing terminally ill patients to access life-ending medications with the aid of a physician. The workshop examined what is known, and unknown, about how physician-assisted death is practiced and accessed in the United States; it was not to be a focus of the workshop to discuss at length the moral or ethical arguments for or against the practice of physician-assisted death. It was billed as a neutral space to facilitate dialogue in order to help inform ongoing discussions between patients, their providers, and other health care stakeholders. What follows is a report on that workshop.
[NOTE: Because of a problem with a component of the website, I am re-publishing this post today. A new post will appear in the in-boxes of subscribers Monday. I had hoped we would get some comments or feedback about this post.]
In Part 1, I discussed the state of death with dignity (DWD) laws in the United States and suggested eliminating the “six months to live” criterion. Here in Part 2, I discuss the Canadian example, other suggestions that may ease some restrictions of death with dignity acts (DWDAs), and add an important precaution that should help protect vulnerable people and provide better medical services.
Oregon’s Death With Dignity Act (DWDA), implemented in 1998, was a monumental step forward in pursuing the primary goal of permitting those suffering from illness or disease to hasten their own death. But its advocates realized that, out of political necessity, it was not a universally applicable law, covering everyone in need. And the DWDA did not assure that all people have excellent medical care to meet their needs, though Oregon did dramatically improve palliative care in the state, diminishing the need for many people to make use of the DWDA.
Whenever I read the arguments of opponents of Medical Aid In Dying (MAID), one that constantly crops up is a religious appeal to how precious life is. For example, “Every day is a gift from God, and you can’t ever let that go.” That is a faith statement. I may agree with it or I may not. It may rise out of the writer’s religious faith, but that doesn’t mean it applies to mine. And religious faith should never be a basis for making public policy. Otherwise, we will have one person’s religion controlling all others – something our founders absolutely opposed.
The American Psychological Association (APA) has prepared and published an “End-of-Life Care Fact Sheet,” making it available as an open source document. It tries to answer the question – What are older adults’ mental health needs near the end of life?
The document, prepared by Sharon Valente, RN, PhD, FAAN, in collaboration with the other members of the APA Ad Hoc Committee on End-of-Life Issues, addresses many issues of concern to FEN members and provides references for the information and opinions it offers.
While the APA does not take a position on assisted dying, such as the laws that allow a physician to provide a lethal prescription to a terminally ill patient, as can be done in Oregon, Washington, Vermont, California, Colorado, and the District of Columbia (and is permitted in Montana by court decision), it does recognize the many perspectives on the issue of hastened death or rational suicide that exist in the US population.
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.
While not everyone who reads this message, because of their own circumstances, will feel like being thankful this week, I thought I would take a break from our usual discussions to share a few thoughts that my own family has embraced for several years on Thanksgiving. It is an incomplete and changing list of some of the things we have to be thankful for, with a measure of reality thrown in to keep us from feeling too smug about being Americans, or living in America. The thoughts are intentionally not sectarian or religious. I hope they have a universal human quality about them.
Following is my Supplemental Directive. I do not consider it to be superior to any other, nor do I suggest that anyone copy it, though everyone is welcome to use any of it that suits their needs. I offer it merely as an example of what can be done. Referring to posts 1 through 3 on this topic should clarify the reasons for my choices. You will judge how well I have resolved the issues. I welcome ideas, critiques, and comments to improve my efforts.
“Over himself, over his own body and mind, the individual is sovereign.”
— John Stuart Mill
The United States Constitution and the common law (along with some state constitutions) give us the right to make directives that control the health services we receive if we become mentally incapacitated. The instructions provided by most states in the statutory forms that have been approved since the late 1980s do not limit us. We can write non-statutory directives I call “supplemental directives” when they are attached to and referenced in the statutory directives. We can also write our own health care directives without using statutory forms (an issue to be discussed in a subsequent post).
In Part 1 of this essay, I introduced two competing arguments concerning using advance directives to control what is done to our bodies should we become mentally incompetent.
As explained previously, the sole purpose of advance directives is to record one’s decisions about medical and related care if a person becomes unable to make such decisions later because of mental incapacity. To explain the range of options that are available both before and after such incapacity, I’ll use a personal example.