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?

Thinking about Death

It was early on February 15 that I started writing this article, for it turned out that my wife June and I spent a considerable amount of time thinking about death on Valentine’s Day.

Our Sunday School class discussion that morning as well as the movie we watched that evening were both about death. We also were sad to hear that two people in our circle of acquaintances had died that day.  

Death in “Fidelity”

On the morning of Valentine’s Day, the Sunday School class had a long and fruitful discussion of “Fidelity,” Wendell Berry’s short story first published in 1992. It centers around the death of an 82-year-old man—the very age I am now.

In that intriguing story, Burley is seriously ill, so his family and neighbors, wanting to do something for him, take him, without him being able to give his assent, to a hospital in Louisville where he is hooked up to all sorts of life-lengthening devices. But he was deprived of his right to die with dignity.

Death in Blackbird

That evening we happened upon Blackbird, a 2019 Prime Video movie that we had never heard of—and which was panned by the movie reviewers we read after we watched it. But we thought it dealt with the planned death of Lily, the central character, in a thought-provoking way.

Lily has a serious degenerative disease. It seems that soon she will lose all ability to function as a normal human being, likely even to lose the ability to swallow. Before that happens, she wants to have an enjoyable weekend with her family and then drink the lethal potion procured by her doctor husband.

Choosing death with dignity rather than having to suffer and/or to exist in a prolonged vegetative state is the issue in this movie, similar to that of “Fidelity.”

Death Control as Well as Birth Control?

Contraception, commonly called birth control, has long and consistently been opposed by the Roman Catholic Church—and in recent decades by an increasing number of conservative evangelicals. But birth control is legal and widely practiced in the U.S. and Europe.

Has the time now come for wider acceptance of, and more legal provision for, what might be called death control? Note that whereas birth control is taking means to prevent pregnancy/birth, death control as I am using the term here is taking means to hasten death.

Death control is not a widely used term—and sometimes it is employed to refer to efforts to prevent death just as birth control is a term used to prevent pregnancy/birth. But I am using the term to refer to suffering, terminally ill people taking the initiative to end their lives.

Of course, there are strong religious and ethical arguments against all forms of death control. Again, the Roman Catholic Church and conservative evangelicals are at the forefront of that opposition. Birth and death should be completely left to God, they say, and humans should yield to God’s will.

Similarly, there was a time when it was widely thought that vaccines interfered with the natural order, or the divine order, of things and should be spurned. For that reason, in the 18^th century U.S., some religious people saw vaccines as “the devil’s work.”

In much the same way, birth control opponents through the years have also seen using “artificial means” to prevent pregnancy to be attempts to usurp God’s work in creating new human life.

The Roman Catholic Church, for example, teaches that using contraception is "intrinsically evil," for it gives human beings the power to decide when a new life should begin whereas that power really belongs to God.

Death control is staunchly opposed for the same reason: the power to decide when life should end, they declare, also belongs only to God.

But for those who see no ethical problem with birth control, or vaccines, shouldn’t the prudent use of death control also be considered ethically permissible?

(I am planning to post more about this controversial topic on March 5.)