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Is Dementia the Death of the Self?
Suicide in the context of terminal illness, or a loss of quality of life, physician-assisted suicide … I have conflicting feelings. I am adamantly opposed to physician-assisted suicide. If people want to kill themselves, they can acquire their own means to do so. Yes, this is a disadvantage to some, but by insisting all have the same opportunity we open the doors wide for abuse.
These thoughts are shaped by my religious beliefs, as well as my experiences with kids and adults with developmental disabilities, and my work with medical patients. I certainly don’t expect anyone who doesn’t share my religious beliefs to agree.
However, I often hear arguments such as, “If I lose my ability to think, I’m not myself,” or, “If I’m a burden, I’m not myself,” and others that seem to value humans for their ability to think, or care for themselves. Quality of life is often a key component to these arguments.
These messy thoughts are captured in an article in The New York Times Magazine today called The Last Day of Her Life. It discusses the diagnosis and demise of a prominent psychologist and gender studies professor, Sandra (Sandy) Bem. When she was diagnosed with Alzheimer’s, she “vowed that she would figure out a way to take her own life before the disease took it from her.” The confided these plans to her inner circle, who “tried to tune out [their] own anticipatory grief” to “focus on helping Sandy die the way she wanted to.”
As the disease progressed, her life became more limited, and her personality changed, but she continued to enjoy it. Her inner circle began to hope she would reconsider her plan: “The old Sandy, who valued her rationality and her agency, had been clear that she would be unwilling to keep living when she could no longer articulate coherent thoughts. But this newer Sandy didn’t seem unhappy living her life in this compromised way. Ultimately, who should make the decision to die, the old Sandy or the new one?”
The magazine discusses Ronald Dworkin’s famous or infamous arguments in Life’s Dominion: An Argument About Abortion, Euthanasia and Individual Freedom:
[He] wrote about a kind of hierarchy of needs for people in Sandy’s situation, who want their autonomy to be respected even as disease changes the essence of who they are and what autonomy means. He differentiated between “critical interests” (personal goals and desires that make life worth living) and “experiential interests” (enjoying listening to music, for instance, or eating chocolate ice cream). Sandy was appreciating her experiential interests — playing with Felix and working in her garden — but her critical interests were far more sophisticated and were moving out of her reach.
I like his distinction between critical interests and experiential interests. But he values critical interests over experiential ones. This reflects a preference I often see in very bright or educated people. Dworkin is even more specific:
Critical interests should take priority when making end-of-life choices on behalf of someone whose changed state renders her less capable of deciding on her own, Dworkin wrote, because critical interests reflect your true identity. The new Sandy seemed to love being a grandmother, but it was important to take into account what the old Sandy would have wanted.
I often wonder: If someone was adamantly against ending his own life when he was able to articulate his critical interests, but changed his mind when his interests were limited to experiential ones, would Dworkin still be support his original choice? Or does he like his reasoning because it so often works out as he wishes it to?
The next comments are from Sandy’s ex-husband (emphasis mine):
“I still feel as though I’m me,” she told him on one ride. “Do you agree?” He did, sort of. In fact, he was surprised by how much herself Sandy could still be, even as she became less and less the formidable thinker he had always known. He was surprised too to discover that it didn’t matter to him. “I realized how little of the fact that she was an intellectual played into my feelings for her,” he said. “They were feelings for her, not her intelligence. And they were still all there.”
They were still all there … even when her ability to think critically was gone.
As you can probably imagine, this story ends with Sandy taking her own life. What do you think about this? What experiences have shaped your thoughts?
Published in General
I should also note tangentially that in the story they talk about Sandy becoming less able to think straight, etc. and mention a switch from a low dose of Prozac to Zyprexa. Zyprexa is an atypical anti-psychotic. This class of drugs is often used in dementia patients to calm agitation or other disturbed behaviors and to help with sleep. Sedation is a significant side effect. Was that taken into account beyond her daughter worrying about untreated depression?
Lynne, thanks for this! I firmly believe that my life is not mine to take: The Father gave it – and Christ bought and paid for it. That said, I am a “no code/slow code”… I have other places to go, when God calls…(I fully understand someone’s choice to control even their last breath…I’d worry about someone deciding ‘quality of life’ issues for me. What I used to want might not be what I want now…).
[CoC]! Cognitive impairment is a noticeable side-effect of anti-psychotics, including Zyprexa.
Studies aside, I’ve seen these impairments up-close and personal in my highly-driven, high-IQ science-geek friends, when they’ve been prescribed anti-psychotics. Invariably, they taper down their dose (with or without their doctor’s permission) in order to stay good at the things that make them them – integration, coding, writing dissertations, etc.
What they’re good at is part of who they are. Being “perfectly normal” is not.
Their well-being isn’t served by dialing the crazy down to zero if that means wiping out the cognitive acrobatics that makes them them. They’re better served by having their cognitive function preserved as much as possible, while keeping the crazy to a manageable level. Obviously, some cognitive impairment is an acceptable price to pay for keeping the crazy still-manageable. But not any more than that, if it can be helped.
Here is the testimony of a classic science geek on anti-psychotics wondering where his very self has gone.
The testimony typed out:
I, too, am conflicted about euthanasia and it is important to distinguish between acting with intent (voluntary or involuntary) to end a life and merely forgoing life-prolonging treatment. The latter is not euthanasia. In passing, I should say that a “slow code” (which is unrelated to euthanasia for the above reasons) was an unethical practice where physicians simply went through the motions in order to avoid making a collaborative decision with patients/families as to whether or not to resuscitate a patient under a given set of circumstances. It has no place in ethical medicine.
At age 70 and having practiced medicine for 38 years, I have witnessed much suffering and death. I personally fear dis-integration of my consciousness of self. I have the knowledge and means to opt out (don’t know if that will remain) if and when. An anhedonic, I’m not much into the experiential pleasures, and I can’t imagine how depression can be diagnosed in the face of the knowledge one’s life is about to end. If any feelings of grief and loss are legitimate, those surely are and medicating them away may not be the highest good. I suppose I hope that when I deteriorate my abiding intense desire to remain alive and integrated as my self will lessen. I wish I believed in an afterlife; the best evidence I have: that my experience of self after death will equal that prior to birth. “Peace that passeth all understanding.”
Civ, to clarify, not calling 911, calling priest, caregiver is my definition of a “slow code”; nutrition and hydration provided until I stop metabolizing them – because they’re no longer seen as extraordinary care…
You have echoed my thoughts, both about my afterlife expectations and concern about other’s deciding my quality of life.
Midget Faded Rattlesnake:
You are exactly right. I understand the conundrum of trying to control symptoms, but at the cost of significant cognitive impairment.
What really scares me about these drugs is when they are used in kids, particularly those with behavior problems…but that goes far afield of my original thoughts.
When I used to do medical capacity evaluations, this was always a consideration in trying to figure out the best time to assess elderly patients. It was a question of what part of their brain was or could do the talking.
Very true. A distinction we make in palliative care regularly.
Also true. One of my frustrations is that in the clinical world of medicine and psychology, we tend to think of emotion in only pathological terms–emotion is anxiety or depression, or not. We don’t really use language to explore the extent of emotions in those contexts you describe. We don’t talk about sadness, except in the context of depression. I agree that medicating them away (and the literature suggests that we’re not terribly good at the either) may not be what we need to aim for.
“…he was surprised by how much herself Sandy could still be, even as she became less and less the formidable thinker he had always known. He was surprised too to discover that it didn’t matter to him. “I realized how little of the fact that she was an intellectual played into my feelings for her,” he said. “They were feelings for her, not her intelligence. And they were still all there.””
There may be some solipsism at work here. Her husband’s perceptions of Sandy are, of course, his own and not necessarily hers – so I’m not sure the extent to which we ought to weigh them in considering her own experience of her self. His feelings were undoubtedly complex and con-fused (in the sense of a very natural blurring of boundaries anticipating the loss of a loved spouse).
Regarding experiences which shaped my thinking – in med school I learned of Aquinas’ principle of double effect. This has formed the basis of my own approach to relief of suffering at the end of life and has allowed me to administer sufficient doses pain medication without fear, guilt or self-reproach.
I do accept the Christian obligation not to deliberately kill oneself. Not always gladly, but I’ve accepted it.
That said, I believe that any act – such as refusing care – that does not make the sufferer positively culpable of self-murder ought to be permitted to a suffering Christian. That is, sufferers should be free to “get away with” dying right up to the point where any further action would constitute deliberate suicide. A dying man who cannot swallow ordinary food and drink is no longer obligated to eat and drink. A dying woman who’d suffocate in ordinary air is not obligated to accept supplemental oxygen.
Care measures which it would be sinful to refuse when recovery is the expected outcome are no longer sinful to refuse at the point of death. I was intubated last week, presumably to prevent my death during a seizure. Accepting that intubation was my Christian duty: I’m nowhere near the end of my expected life and I owe it to the ones who love me here on earth to embrace recovery. But when recovery isn’t the expected outcome, refusing intubation is no longer sinful.
Everyone’s gotta die sometime. For most of human history, we accepted deaths that occurred in low-tech environments as natural deaths, not suicides. To my mind, they still are.
Here, I’m just giving my opinion as a Christian, not as a secular citizen. I also wrote about hospicing my dad when he refused dialysis here.
I’m not sure it does go so far afield. Because these drugs are also used in the elderly with behavioral problems. And speaking myself as someone who was once prescribed such a drug on an off-label basis for monthly headaches, and who likewise suffered bewildering cognitive impairment until I tapered off, I can think of nothing more dismaying to a still-bright elder already painfully aware of her cognitive decline than for that decline to be hastened, simply in the interest of keeping her more manageable.
People do not feel like themselves on these drugs. Which is OK when the “themselves” they would be feeling like is “bloodthirsty maniac”. But when “themselves” is “someone whose behavior is merely annoying for others to cope with” then there’s a problem when they’re guilt-tripped into taking the drugs, whatever the age of the people being chemically straitjacketed.
I worried that my mother was going to kill herself during the holiday season after my dad died unexpectedly. She had had a traumatic head injury 2 years before which worsened the dementia symptoms she began before the fall. She made me promise I would tell her when I could see her failing.
By the time I worked up enough honesty to tell her she was worsening, the dementia made her unable to process the information. Since then, she seems happier to be alive. It is dreadful to watch but it affects my mother the least of all. It has changed my view.
Ministering in convelescant homes, I’ve often marveled at what brings out a glimpse of the soul when it seems like no one is there anymore. Sometimes it’s joining in on an old hymn or the Lord’s prayer. There’s more to people than we can comprehend.
Where does it end? Do we start “euthanizing” the disabled, too? People suffering from social exclusion? Undesirables in general? Will pressuring people to take their own lives become as common as pressuring young women to get abortions is today?
We saw some surprising glimpses of Dad at the very end, when he was no longer aware enough of how much of himself he had lost to remain angry, but fortunately still aware enough to recognize us and even… smile.
I think making comfort the priority and offering him simple care which he was entitled to refuse helped.
The Memphis paper devoted 45 % of today’s Sunday editorials space to a culture of death celebration of assisted suicide. This one drew heavily from the Diane Rehm story (her husband killed himself the slow way; he refused food and drink (it took ten days)).
I suppose this is a pressing issue because the boomers are in the middle of grappling with the end of life issues of their parents.
John Paul II was on target when he called it a culture of death.
MJB: He showed us how to journey to the Father’s house with grace and courage.
I have visited several parish members in their waning days. Even in the midst of dementia they can enjoy the visit, appreciate the attention, value your time, and share a prayer. Loved ones are dismayed to see the confusion, and sometimes fear, that come with dementia, but they are loath to lose their dear ones.
My wife works in a memory clinic helping dementia patients and their families. She has noted to me that even when people lose the ability to identify and articulate their preferences, those preferences remain constant. Someone whose favorite ice cream flavor was chocolate does not “forget” that preference when he or she loses cognition. Many, if not most, essential personal qualities do not change.
Often, though, the conscious brain can be a used as a check on unconscious desires. For example, a person may love sex, and while mentally healthy maintain control over his or her behavior — but when cognition fails, the person begins behaving in inappropriate ways. On the surface, a person can appear to undergo a personality change. In fact, though, his or her essential personality is unchanged.
My best friend’s mother succumbed to a degenerative brain disorder, and they had their struggles with that process. My father was diagnosed with Parkinson’s a couple of years ago, and we’re dealing with that now.
I had a cousin come down with some sort of dementia in her late thirties/early forties, culminating in a vegetative state until she died. It produced some hard feelings in the family, because her husband obtained a divorce part way through the process and remarried. He provided for her care, but she was dead to him, so he felt he was justified in moving on even before she passed away. To my cousin’s siblings and parents, his actions seemed callous, to say the least.
One thing I remember from her funeral was a good point that her pastor made. Even in her vegetative state, God could use her as a means of grace, and as an expression of faith. We, the survivors, can be blessed in unforeseen ways; we, the dying, can be a blessing. Regardless of our role, we should choose to accept it, and try to fulfill it, for God can sanctify our pain and turn it to glory.
No, dementia is not the death of the self. You are still you at 99, 90, 80%. What is the cut-off? My grandmother suffered all the way to her death by Alzheimer’s, and remnants of her personality remained almost to the very end.
I personally know of different suicides involving apparently depression, organic brain disease that was not terminal, and terminal cancer. The common cause in all cases seemed to be depression, suffering, and a desire by the victim to end the suffering- for themselves and others. But suffering is the only way we can really learn anything important. For those interested in another take on suffering and the end of life, you may want to check out D. G. Myers, who, before his death last year, spoke and wrote frankly and more eloquently than I can about his predicament with terminal cancer. I hope that, with better palliative care for organic brain syndrome patients, more will chose life.
I hope you all don’t mind a little diversion on this thread:
One needs to define “the self” here, surely? I believe in reincarnation so I have a different view on this than most westerners. This world is so demanding on one that it is hard to reflect on the higher planes and see our place in it and it is especially difficult to see one’s identity. We simply aren’t given the proper amount of time nor the correct place to study things sufficiently. The body alone has constant demands and shrieks for attention and the mind is busy with the brain’s constant nagging.
This world is God’s clear intention and we have ownership in it. But, this only makes sense in the context of reincarnation because only then can things be seen to be balanced out and explainable. One lifetime is full of contradictions and unresolved dilemmas. The tapestry of many lifetimes shows what is going on and the pattern and explanations pour forth from that view. This is what saints are seeing when they get a vision of heaven.
So, I have described the self with a new dimension — that of a thread throughout history with time in between earthly lifetimes spent in the higher realms. Step two is to examine one’s affinity for and connection with each of the other threads in the tapestry.
Doc, query: does ‘not treating an infection’ get paired with comfort care/palliative measures, always? Just wondering…
We have reached the age where this subject is very real to us. We have seen friends “age-out” very gracefully, bringing great truth to their relationship with God. In our own lives we are ever aware that God has called us to be witnesses to His love and grace, and believe that whatever our circumstances physically or psychologically, we can remain His faithful witnesses.
Already experiencing physical degeneration, we seek to accept reality and believe He will use us to the end.
Our daughter and her family now live in our home with us, and share our desire to remain ourselves, used by God, to the end.