Death Control for Alzheimer’s/Dementia Patients?

Ten days ago, I wrote about “death control,” encouraging legislation for and use of medical aid/assistance in dying, often referred to as MAID (or MAiD). But as I wrote then, MAiD cannot legally be used for those suffering from severe dementia such as caused by Alzheimer’s disease.  

The Prevalence of Alzheimer’s/Dementia Patients

Alzheimer’s disease and other forms of acute dementia is a prevalent problem in this country, and in many countries around the world.

In the U.S., “The Alzheimer's Association leads the way to end Alzheimer's and all other dementia—by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support.”

On their website, the Alzheimer’s Association reports that currently more than 6,000,000 Americans are living with Alzheimer’s.

There can be no doubt but that Alzheimer’s/dementia is a prevalent health problem—and one that is made worse because at present there seems to be no sure way to prevent its onset or to cure it once it begins.  

The Sadness over Alzheimer’s/Dementia Patients

We don’t/can’t know what sadness an Alzheimer’s/dementia patient himself/herself feels, but clearly, the family/friends of such patients repeatedly feel great sadness, as I have personally experienced.

My mother passed away in February 2008 at the age of 94. She was never diagnosed as having Alzheimer’s, but for several years her dementia grew worse and worse. It was a sad time for her family, especially for my father who cared for her at home until his hospitalization and death in July 2007.

Maybe it was about a year before she died that I realized the seriousness of, and the sadness of, my mother’s condition. I made the two-hour drive from my home to visit her at her home in northwest Missouri. That morning, my sister, who lived a five-minute walk down the road, came over to visit.

After the three of us had a convivial chat, my sister left to attend to other matters. Right after she left, my mother cheerfully said to me, “That was a nice lady. Who was she?”

At that point, the sadness spurred by talking with a dementia patient hit me as never before. Still, I tried to visit my mother as much as possible and my sister saw her almost daily.

Perhaps you have heard the story of the man who went to the care facility where his wife, suffering from severe dementia, was a resident. Her illness had progressed to the stage that she no longer knew her husband, so someone asked the man, “Why do you keep going to visit her?”

The man’s answer, “She may not know who I am, but I know who she is!”

That is what my sister and I felt about Mom.

MAiD for Alzheimer’s Patients?

In two recent blog posts, I have written about using MAiD, medical assistant/aid in dying. But that is not now, and maybe never will be, an option for Alzheimer’s/dementia patients.

Both for the sake of the patients and for the sake of their families, it would seem that some form of death control would be desirable. But at this time, it is not legal and does not seem feasible—and it may never be.

As I have previously explained, MAiD makes it possible for a terminally ill person to choose to die.

That decision, though, must be the patient’s own choice and can be no more than six months before their death as prognosticated by competent doctors. For Alzheimer’s/ dementia patients, however, it is either too soon to make that fateful choice or too late for them to be able to do so.

So, what can/should be done? At this time, perhaps all that can be done is to provide for the comfort of the patient and then to practice “passive euthanasia.”

That is, whenever someone with acute Alzheimer’s/dementia develops a serious illness, see that their pain/suffering is mitigated as much as possible and then allow nature to take its course, rejecting medical means to keep the patient alive.

So, What about Death Control?

“Thinking about Death” was the title of my Feb. 23 blog post, and it was partly about what I am calling “death control.” Since that is such an important, and controversial, issue, I am writing again about that matter.  

Death Control is Not Euthanasia

First, it is important to note that “death control” is not euthanasia, which is illegal in every state in the U.S.

One page on The CompassionAndChoices.org website (see here) states this clearly: “Medical aid in dying is fundamentally different from euthanasia.” Here’s why:

Euthanasia is an intentional act by which another person (not the dying person) administers the medication. In contrast, medical aid in dying requires the patient to be able to take the medication themselves and therefore always remain in control.

Thus, if used soon enough, MAID (medical aid [or assistance] in dying) can be used by people suffering from cancer, ALS, MS, or other progressively debilitating diseases—but not with those suffering from acute dementia. (This latter is a very sticky issue that I will think/write more about later.)

Death Control is Not Suicide

The term “physician-assisted suicide” (PAS) has long been used, and terminally ill people who have taken means to end their lives have often been said to have committed suicide. But increasingly, that is being seen to be a negative/judgmental term that should be avoided.

Citing the same CompassionAndChoices webpage, many leading medical organizations “have all adopted policies opposing the use of the terms ‘suicide’ and ‘assisted suicide’ to describe the medical practice of aid in dying.”

Here are some differences between MAID and suicide (h/t to suicideinfo.ca):

** Suicide is often carried out alone and in secrecy, leaving loved ones with devastating grief; MAID involves decision-making informed by medical personnel and usually includes loved ones.

** Suicide is usually due to mental pain: distress, loss of meaning and purpose in life, and psychological burdens considered too heavy to bear any longer; MAID is chosen by those whose death is apparently inevitable in a matter of several weeks or a few months because of serious physical illness.

** Suicide is often carried out in violent ways (such as by self-inflicted gunshot); MAID uses non-violent means provided by trained professionals.

So, What is Death Control?

Death control means terminally ill people having the right to choose ending their life at the time and place of their choice—and with grace and dignity. Making such choices legal and practicable is the purpose of these organizations:

Compassion & Choices 
Death with Dignity National Center 
Final Exit Network

Among other things, these organizations are seeking to increase the number of states where MAID is legal, and that is a good and important work. Several states are considering such legislation at the present time; sadly, Missouri is not. (See this map for the situation in all states.)

Last week there was an intriguing obituary in a New York newspaper: “Martha Schroeder died with dignity at home on the afternoon of February 25, 2021. She was 90 years old. Her fear of losing control to dementia and blindness was peacefully put to rest.”

Although there is currently a MAID bill before the New York legislature, assisted death is not yet legal in that state. But if, and when, such legislation is enacted, in N.Y. and states across the country, perhaps an increasing number of obituaries will report people dying with dignity—and by MAID.

Such death control seems to be a desirable, humane, and compassionate way to deal with the lingering suffering of terminally ill patients and the futile expenses of keeping people alive in spite of an extremely low quality of life.

For all of us, death is inevitable. But since for many terminally ill people death with dignity is something that can be controlled, why don’t we actively seek to make that a possibility for those who desire to make that choice?

What about Physician-Assisted Suicide?

"There's more to life than living and more to death than dying.” Those are the intriguing words on the cover of Finding Frances, a 2010 novel by Janice M. Van Dyck.

Frances is a 74-year-old woman who, beset by illness, is ready to die. She doesn’t want further medical care that might save her, so she asks her son to help her bring closure to her life. But permission to die is not easily granted. The doctors want to keep her alive by all means possible.

As is noted early in the book, “medical intervention saves lives, but there is a point when medical intervention stops being a life-saving measure and starts interfering with a natural death” (p. 39). That is the situation Frances faced.

After two interventions, Frances exclaims, “I don’t want any more saving” (p. 60).

A Washington Times review of Finding Frances remarks,

Our current medical system is required to do whatever it can to prolong life. Is there a way for us to improve on that model? Van Dyck brings these questions smoothly to the surface without ever pushing an agenda or setting up arguments. She leaves the reader wishing death could be made easier and glad that the family and hospital finally helped Frances go.

The sticky matter of euthanasia has been discussed/debated for a very long time, but it is even more relevant, and stickier, now than ever before because of the way medical establishment can extend life almost indefinitely.

Even though I have spent much more time and energy thinking about “youth in Asia” than about euthanasia, I have long supported the idea of “passive euthanasia.” That means allowing a person to die with dignity as comfortably as possible without using all means possible to prolong their life.

Back when “Obamacare” was first being debated, critics charged that the ACA was sanctioning “throwing Grandma under the bus.” Well, while they certainly want a gentler way to “check out,” there are many grandmas, such as Frances, who are ready to die and who do not want massive medical intervention to sustain their physical life.

Perhaps the government (whether through Medicare, Obamacare, or whatever) does not have a mandate to provide funding for extending the life of people who no longer have any desirable quality of life left or any hope for things to get better.

For many years now, 25% of the Medicare budget has been spent on the last month of people’s lives. Probably most of these people, and their families, would have been better off had the patients been allowed to die naturally rather than to receive extensive treatment that extended low-quality life for only a few days or weeks.

There are many helpful articles about such issues available here in a 2014 Wall Street Journal webpage.

But is there any possibility of affirming physician-assisted suicide, which would be a form of active euthanasia?

Suicide has sometimes been called “a permanent solution to a temporary problem.” But some people have a terminal illness, are in great pain, and have absolutely no hope for the restoration of health or any satisfactory quality of life. Theirs is not just a temporary problem that might be solved.

In spite of widespread opposition, maybe for such people physician-assisted “suicide” should be a viable option. That might well be the most loving, and thus the most ethical, course of action.

Note: Finding Frances and related end-of-life issues will be discussed at this month’s Vital Conversations meeting beginning at 1 p.m. on Wednesday, July 8, at Mid-Continent Public Library in Gladstone, a suburb on the north side of Kansas City. Visitors are always welcome.