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.
ZDoggMD (Zubin Damania, MD) explains in his engrossing style what it really means to decide that you want to be kept alive by doing everything possible. It may be time to remodel those advance directives.
No, it is not an obituary for a specific individual. It is an obituary that recognizes and celebrates taking control of one’s end-of-life suffering.
Timothy Boon, RN, is the CEO of Good Shepherd Community Care (GSCC) in Newton, MA. GSCC is an independent, community-based, not-for-profit, non-sectarian, hospice care agency, the first organized in Massachusetts 40 years ago. Recently, he wrote a poem in the style of Dr. Seuss, and recited it on video for ZDoggMD (otherwise known as Dr. Zubin Damania, Founder of Turntable Health, a direct primary care clinic in downtown Las Vegas). The poem is posted here by permission of the author. The video is posted courtesy of ZDoggMD.
In 2017, the District of Columbia (DC) became the seventh jurisdiction in the United States to legalize medical aid in dying, which gives terminally ill patients the option of how and when they die. The new DC statute is nearly identical to earlier enacted medical aid in dying statutes in California, Colorado, Oregon, Vermont, and Washington State. Only Montana legalized medical aid in dying through a court decision, but subsequently, proponents of the act have failed in every attempt to legalize medical aid in dying through constitutional or statutory litigation.
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.
One problem with advance directives is that often they are not honored. It is critical that you have a good advocate who demands that you get only the care you want and do not get what is not wanted, not only at end of life but at any time you encounter a medical institution. You will need to choose someone who meets the legal requirements to act as a health care or medical agent, which some states call a proxy, surrogate, or representative. I call this person your “advocate.” State requirements differ greatly, so be sure to use your state’s forms for naming a health care or medical agent, not generic documents like the “5 wishes.”
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).
