My mother is dying of dementia. My mother-in-law died of dementia. Friends’ parents are dying or have died of dementia. I know from these experiences that, if I were to succumb to dementia, I’d want someone to kill me as dementia robbed me of my humanity.
This post explores why I feel this way and what it might mean in practice.
Mom was a vibrant, bright, accomplished woman. Born in the early 1930s, her early life was conventional for the time: high school, college while living at home with her parents, a job, then marriage and children. She earned a Master of Social Work degree in 1970, and then had a career as a social worker and social work supervisor. When my father died unexpectedly in the late 1990s, she picked herself up and lived independently for the first time. She relished being the matriarch of her expanded family of three married children, their spouses, and seven grandchildren. She kept active with courses and trips, had many friends, and made her own decisions.
A few years ago she decided to move into a continuing care community, where she could continue to live independently but would be able to transition into assisted living and nursing care. In retrospect, Mom knew before we did that she was starting her decline. She became easily confused and forgetful, which made her afraid to go out. Indeed, travel left her particularly vulnerable. During a trip to New York she mistook locations for others she had known in her life, later telling a grandchild that she had enjoyed her trip to Paris. After a minor incident in a parking garage, she (thankfully) gave up driving and her car.
She loved her family and remained interested in and proud of her grandchildren. We talked regularly, but our conversations became extremely repetitive. Her ability to use her telephone and electronic devices deteriorated. Her bridge friends gently told her that she wasn’t able to play with them anymore, and she struggled with that reality.
But she was still Mom.
Then came the event that all families dread: Mom fell and hit her head. The fall put her in the hospital for a week, but Mom didn’t remember falling and didn’t understand what had happened to her. Then, after a day in nursing care, she fell again, this time breaking her hip. Off to the hospital for hip repair surgery.
Older people with dementia often struggle after hip repair surgery. Mom was delirious for a month and a half. Her day/night sleep cycles were reversed, making meaningful physical therapy impossible. Perpetually tired and confused, she could neither stand nor walk reliably. Because she couldn’t remember her accidents, she was constantly at risk of another fall. We hired 24-hour aides to protect her, which only confused her further and increased both anxiety and anger.
Once we realized that her inability to interact with friends made their presence immaterial, we moved her to a memory care unit in an assisted-living facility close to my sisters’ homes.
Descent into Inhumanity
That’s where Mom lives now. While the facility is wonderful and the proximity to family is a huge plus, Mom’s situation has continued to devolve.
She doesn’t know where she is or even when it is, so she’s constantly frightened. There have been long-term delusions: the “Man” who wants her to work for him, even though she really can’t manage the streetcars any longer. The “Plane Ride” she needs to take by herself to go who knows where. Her almost complete lack of short-term memory creates constant anxiety throughout the day. Moving out of her range of vision even for a moment can result in frantic calls for help. While Mom was always known for her grace and reserve, the constant confusion and fear has resulted in a woman who can swear like a sailor and occasionally become combative with aides and other residents.
Mom doesn’t remember that she can’t stand or walk, so she gets up from her bed or wheelchair, loses her balance, and falls. For some reason, all restraints, including seat belts and bed rails, are prohibited by Federal law. We’re lucky that so far she’s only sustained minor bruises. But her care facility has warned us that they can’t safely watch her at all times and that her efforts at mobility, along with her cries for help that disturb other residents and guests, could result in her having to leave the facility.
She’s now taking drugs to reduce anxiety and agitation, including the urge to stand up, but it seems impossible to find a balance between reducing her fright and causing her to sleep most of the time. The Washington Post recently wrote about overuse of drugs to control dementia patients. We worry about that, but the countervailing concern is that Mom is frightened and prone to injury when she’s not taking the drugs.
We are fortunate that one of my brothers-in-law is a physician with extensive experience working with elderly patients, so we are confident that Mom is getting the best available medical care.
Unfortunately, medicine doesn’t have an answer. Larissa MacFarquhar reviews some interesting non-pharmacutical approaches to managing “the misery, panic, and rage” of dementia.
These days, Mom recognizes us when she’s awake, but she has lost the ability to converse in any meaningful way. For the most part, during our visits she is either asleep or incoherent. All we can do is hold her hand and tell her that we love her.
Mom’s body still functions, but the person we have loved for more than sixty years is gone. Eventually, her body will die too. This may happen in a few months, but, as happened with my mother-in-law, it may also take years.
Advance Healthcare Directives
Not long after my father died, Mom and her lawyer wrote an advance healthcare directive. This tells us that she does not want extraordinary measures taken to prolong her life. But it doesn’t tell us anything about what she would want in her current situation.
I don’t think she’d want to be alive, but we can’t have that conversation with her now so we don’t really know. And of course, even if we did know that she wouldn’t want to be alive like this, implementing any such wishes would be murder.
Assisted Suicide and Euthanasia Laws
Indeed, there’s a recent case in Australia where a daughter is accused of murdering her 92-year-old mother in what some are calling an “act of mercy.” The mother was an accomplished scientist who could no longer recognize visitors or communicate.
In the US, state law governs whether one can take one’s own life and whether others may assist in doing so. Five states allow physicians to assist terminally-ill patients in taking their own lives. In practice, this means that the physician supplies lethal drugs that the patient uses to commit suicide.
My mother and other dementia patients, however, are incapable of committing suicide. If, in fact, Mom would want to die in her current circumstance, accomplishing this would be euthanasia, not suicide: someone else would have to kill her, presumably by administering a fatal dose of drugs. Euthanasia is illegal in all 50 states.
The case in Australia prompted a debate in Parliament to overturn a ban on euthanasia, but the measure failed and the ban remains.
For Mom, neither assisted suicide nor euthanasia are possible. When the time comes, we will try to ensure that her advance healthcare directive is obeyed, meaning that no extraordinary effort will be made to extend her life even if it were medically possible. Until then, we will take care of her. There is no other choice.
What I Want
So let me now turn to my own desires.
I distinguish between me as a human being and my body as a living organism. Of course, one can’t be a human being without a living body. But one’s body can be alive without exhibiting the characteristics that make us human. We could debate exactly what those characteristics are, but for me, personally, they are the abilities to have meaningful interactions with other people, to be sufficiently aware of my surroundings that I am not constantly fearful, and to experience some pleasure from being alive.
If my state becomes such that there’s no reasonable expectation that I will return to having those human characteristics, then I want someone to kill my body.
Not So Shocking
The word “kill” shocks. But let’s step back from the shock and compare it to what happens now.
Mom’s advance healthcare directive, for example, specifies that she doesn’t want a feeding tube inserted if she is unable to eat and drink. So, when her dementia progresses to the point that her brain can no longer control the muscles involved in swallowing, she will die of dehydration and/or starvation because we will not insert a feeding tube.
This is exactly how my mother-in-law died. After almost ten years of dementia, and several years of no meaningful interaction with anyone, my mother-in-law died because she could no longer swallow and had also specified no feeding tube. It took 12 days for her to die, during which she was given drugs to prevent suffering.
Types of Euthanasia
This kind of death is an example of passive euthanasia, passive because death comes from standing by and not doing something that would prolong life. Another common form of passive euthanasia is not giving antibiotics to fight off infectious diseases like pneumonia.
Contrast this with active euthanasia, which is taking some action to terminate life.
The other important distinction is between voluntary euthanasia, in which a person requests euthanasia to alleviate suffering of some sort, and involuntary euthanasia, in which someone else decides that it is best to kill the person, either without knowledge of that person’s wishes or ignoring that person’s wishes.
To be clear, I strongly oppose any form of involuntary euthanasia and do not consider it further. I would like to see voluntary, active euthanasia made legal under certain circumstances.
Arguments Against Voluntary, Active Euthanasia
I’ve seen three arguments against legalizing voluntary, active euthanasia. I’ll also discuss the economic impact of legalizing voluntary, active euthanasia.
Religions popular in the United States revere the sanctity of human life and prohibit taking it. My first reaction is that if your religion tells you not to participate as either party in active, voluntary euthanasia, then don’t participate. Don’t impose your religious beliefs on me and others.
Of course, societal interests also matter: society has fortunately decided that we don’t murder each other. On the other hand, our nation has a healthcare system that allows poor people to die from lack of regular access to modern medical care. Society’s views on the sanctity of life are not as straightforward as some may think.
Society has also already decided that it is acceptable, under certain conditions, to allow someone to die by withholding readily-available, inexpensive treatments like antibiotics and feeding tubes. Advance healthcare directives provide the means to ensure that this sort of passive euthanasia is voluntary.
How is it worse from a societal viewpoint for someone to actively help another person die? The answer is that it isn’t: if passive, voluntary euthanasia is legal, and if death by poverty-induced lack of access to medical care is legal, then it is inconsistent to make active, voluntary euthanasia illegal.
That leads us to the slippery slope argument: If we legalize voluntary, active euthanasia, it becomes easy to slide into involuntary, active euthanasia. This is why there must be a process with appropriate checks and balances to ensure that any euthanasia is truly voluntary.
We already have processes to verify that a person’s advance directives are legitimate, not written under duress, and written when the person is competent to make such difficult decisions. Those same processes would also apply to advance euthanasia directives.
Likewise, doctors today routinely decide whether or not the medical conditions specified by an advance healthcare directive (e.g., no recovery is possible) are met before withholding treatment. Although the conditions would be different for an advance euthanasia directive, we could still require that, before euthanasia could be performed, a doctor must verify that the medical conditions are met.
Conflict of Interest
Active, voluntary euthanasia introduces a new danger that would need to be managed: People standing to benefit from the person’s death, such as children standing to receive a substantial inheritance, might want to accelerate the timetable.
There are two aspects of defending against this conflict-of-interest danger. First, an advance euthanasia directive should only name trusted people to make the decision. If you don’t trust your heirs to make such a decision for you, don’t name them. Second, I could imagine a service provided by law firms to be an independent decision maker in advance directives, representing only the interests of the ill person. This is analogous to the role of a trustee of a trust, a service commonly provided for a fee by law firms and banks.
In addition to the three arguments I’ve discussed, we should also keep in mind that dementia care is big business: The Alzheimer’s Association estimates that the nation will spend $277 billion in 2018 caring for people with dementia. This big business provides the profits of many companies and livelihoods for many employees. If voluntary, active euthanasia were legal, I would expect some portion of this business to disappear. Although it is uncomfortable to think that economic impact would affect our laws on euthanasia, it would be foolish to ignore that possibility.
Benefits of Voluntary, Active Euthanasia
The most important benefit, by far, of voluntary, active euthanasia is to act according to the wishes of each individual as they move toward death. Some of us will be lucky enough to die quickly of an acute event like a heart attack at a ripe old age. But many of us will experience my mother’s and mother-in-law’s declines.
Avoiding Pre-Emptive Suicide
In fact, the desire to avoid the horrors of death by dementia are leading some to consider “pre-emptive suicide,” that is deciding to take your own life after you know that you’re being taken by dementia but before you become incompetent to take your own life. A recent NY Times article discusses this option. It cites a 2014 paper in a medical ethics journal that discusses this idea. The paper identifies the problem thus:
“The thesis of this article is that suicide is one reasonable response to impending dementia, whether from AD [Alzheimer’s Disease] or some other cause. For people so inclined, however, a major barrier has been the difficulty of pinpointing a time to act: not so early as to lose many good years, but not so late that the subtle onset of dementia robs one of the ability to appreciate the situation and to act in accordance with one’s goals.”
It goes on to discuss the “new array of biomarkers that hold out the promise of predicting the onset of dementia while one still has the capacity to act.”
This is like trying to time the stock market. Even if the indicators tell you one thing, the situation is so complex that an unexpected event can cause something completely different to happen. My mother, and many other dementia patients, for example, suddenly get much worse after an unexpected and unpredictable fall.
This makes pre-emptive suicide a bad idea in both directions: you might commit suicide too early, missing out on years of good life, or you might wait too long and not be able to take your own life when the time comes.
Voluntary, active euthanasia avoids the problems inherent in pre-emptive suicide.
People work their entire lives to build up financial resources to take care of themselves in retirement, to leave something to their families, or to donate their remaining money to a good cause.
If you’re lucky enough to be able to afford care in a high-quality memory care facility, you’ll spend down your resources at around $120-$150 thousand per year. This is enough to make a real difference in your children’s or grandchildren’s lives. Or to help your favorite causes.
Dementia is not only a horrible way to die, it also robs you of control of how your hard-earned money is spent. As you descend into inhumanity, you will spend your money maintaining your body, not doing something useful. Active, voluntary euthanasia would restore financial control to individuals.
Not Being a Burden
Of the estimated $277 billion we will spend in 2018 caring for people with dementia, $186 billion will be paid by Medicare and Medicaid. To understand the magnitude of this spending, compare it to the $702 billion in Medicare benefits payments (2017 data) and the $553 billion of Medicaid expenditures (2016 data) annually. Dementia care consumes almost 15% of the nation’s combined Medicare and Medicaid spending.
The remaining $91 billion per year to care for people with dementia is spent by individuals, either directly or via insurance premiums. Add to this the estimated 18.4 billion hours of unpaid care provided by family members and other unpaid caregivers.
Both the money spent on and the time devoted to caring for people with dementia is an enormous burden, well-spent when the person is enjoying life and wants to be alive, but a waste for everyone when a person no longer wishes to be alive. Active, voluntary euthanasia would reduce the burden to individuals, their families, and the nation.
Prolonged dying from dementia is increasingly common. I’ve been surprised that when I talk about Mom’s situation with friends or close relatives, the conversation often turns to hoping that it doesn’t take too long for her to die. This has made me realize that if I were in Mom’s situation I would want someone to cut short my life through active, voluntary euthanasia. This is illegal in all 50 states.
A few people have told me that it happens anyway, informally. The person is cared for at home and increasing doses of (say) pain-reducing drugs are given over time until the person dies. Such “under-the-table,” hopefully-voluntary euthanasia removes the safeguards that a legal process for voluntary, active euthanasia would provide.
Discussion of euthanasia is difficult, but it is a conversation that we need to have for the benefit of ourselves, our families, and our nation.
Acknowledgments: Barbara Waldman, Jeffry Waldman, Debra Pickus, Ava Nackman, and Rachel Nackman game me thoughtful feedback and suggestions on this post. Ava Nackman extensively helped edit the post for clarity and length. Of course, the opinions expressed and mistakes made remain mine.