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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
Several people have mentioned families arguing and differing over decision-making and care as our parents or siblings decline and approach death.
I just submitted an academic paper (which I won’t bore you with) that talked about emotional and palliative care decision-making. One of the domains is about the hot/cold empathy gap which says that the decisions you make in the “cold” state (e.g., planning care for your care before a terminal diagnosis) may not reflect how you feel during the emotion of a situation (“hot”) state (e.g., facing the end of life). These empathy gaps are also seen when family members question each other around others care–particularly when the patient and other family members disagree.
I think it’s a useful way to think about situations like this and the conflicting feelings we can experience.
BTW, that paper I mentioned…your tax dollars at work (picture sheepish look here)
Finally, something useful!
We have that, too.
What has made this so frustrating to me is that my mom and dad were so responsible with how they handled their finances. They put their assets in a trust back when they were only in their 60s. They each did a will. My mom left detailed notes about where all the $$$ is.
I have a friend who makes a pretty good living as a consultant in these arenas and I’ve had to prevail upon her several times when someone was demanding information and I didn’t even understand the question.
I keep looking at what my siblings and I have gone through … then I look at my four kids and think 1) I don’t want them to go through all this, and 2) What are the chances they would have the time and energy (and desire?) even if I wanted them to?
Which is why if God spares me to 80, I’m taking up skydiving and I’m going to start smoking again.
EDITED: If it’s this frustrating and complicated when there’s enough money, what’s it like when there’s hardly any? (likely will be my case)
as a layman who benefits from other aspects of the ketogenic diet… I am deeply interested in treatments via ketogenic diet to provide other energy substrate for the brain when glucose metabolism falters.
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See this article for a little background on the sugar side.
Metabolism and the brain
See this study for a little window into the usefulness of ketogenic diet.
Neuroprotective and disease-modifying effects of the ketogenic diet
We went to hospice care in the skilled nursing facility and had no issues/
A thought stemming from experience . At some point ,when at the end of a human life , morphine( a respiratory depressant ) is administered for the purpose of relieving pain and suffering to those patients incapable of communicating , the dose administered (for instance by a hospice nurse)is titrated to achieve a low respiratory rate .The reason , in part , is because slow un-labored breathing correlates with good pain control (degree of saturation of endorphin receptors) in conscious patients. But there exist an additional benefit . The slow rate , especially when breathing is not labored , is less distressful to loved witnessing the process of death, than the high respiratory rates usually encountered as the subconscious mechanisms (Chemical , acid base receptors etc) continue to function as the body “struggles” to maintain homeostasis. I would argue that at this point , what distinguishes Euthanasia from what would be acceptable to those who find Euthanasia morally objectionable is indeterminable, a difference without a distinction . If one titrated the dose to achieve a rate of 12 breaths per minute , she may die in one week. But if titrated to 6 BPM , she will most likely die sooner . If 6 is acceptable ,why not 4 or 2 ? Once a loved one appears unconscious(at this stage ,what they experience is unknowable) due to the disease process , or due to the fact that only large doses of narcotics can control their pain and suffering , then why not administer a substantially larger dose and minimize the length of the dying process ?
Someone (Augustine?) mentioned this in the thread earlier. In medicine it’s referred to as double effect. The focus is on relieving pain/suffering but the effect is that is hastens death. I don’t consider it active euthanasia, but reasonable people can disagree.
Each patient is different as far as the amount of pain they experience and the progression of death. If a patient shows improvement then the amount of pain medication can be dialed back. Once we fall into the habit of euthanizing individuals then we will have to start carrying “please don’t euthanize me cards”, which has already happened in the Netherlands. In the case of the elderly every visit from a doctor or nurse in their hospital room could bring fear that someone has made a decision that their time on this earth is finished.
The problem with euthanasia is that it cannot be contained. Every case of legalized euthanasia starts with reasonable cases, and expands progressively like a cancer. The reports from Belgium and the Netherlands feature doctors disregarding patient directives, supposedly in the patient’s best interest. There’s even been pediatric euthanasia cases.
I have a question for the medical people here – is there any reason why a patient couldn’t be given enough drugs to keep them high enough to not care if they are dying?
Both of my mother’s parents had dementia in their last years, and in both cases they remained themselves right until the end: my grandmother jealous, insecure, manipulative, paranoid, and prone to violent lashing out at others; my grandfather an affable, humorous, all around nice guy. They may not have recognized others anymore (and my grandfather apt to propose marriage to anyone in a skirt), but they held on to their personalities and tastes right up until the end. Dementia unmoored them from reality, but not from their character. If anything, dementia concentrated their strengths and foibles.
In the case of my grandmother, this made her very difficult and required dosages of heavy mood stabilizers as she took to beating my grandfather (again, as she was abusive when younger). She could not stand the presence of any other females around my grandfather as she would constantly accuse them of trying to seduce him (which was actually amusing, in a dark way). This shortened the time they could have remained at their home for she would harass and chase out most home health aids, and my grandfather could not take care of himself anymore.
Moving them into a nursing home proved best for the above, but also because, by removing them from a home both familiar and strange to them they felt as though they were on a vacation, or at a hotel, and moderated their behavior. Their home, I think, reminded them too much of what they had forgotten.
I read, rather to my surprise, on Wikipedia that consequentialst logic is supposed to disprove the doctrine of double effect. But I don’t think it does, which incidentally renders a doctrine of double effect redundant.
Consequences are judged retrospectively, but decisions can only be made prospectively. Even consequentialists cannot judge decisions retrospectively while those decisions are still being made: instead, weight must be assigned to likely consequences, and trade-offs made between consequences.
In medicine, trade-offs between comfort and death are ubiquitous. I recently chose a comfort that, in retrospect, paid off much closer to death than I’d like. The fact that, in retrospect, death was only nearly avoided does not mean that death was the expected outcome. It wasn’t.
Expected outcomes are somewhere between intents and actual results: more evidence-based and realistic than mere intent, but lacking results’ hindsight nature.
In administering large doses of anything, you typically expect life-shortening results for some fraction of the population, and this expectation typically rises as the dose increases. Elders are particularly vulnerable. And for them, comfort takes such high priority that people can non-sinfully become indifferent to life-prolongation.
Most conservatives wouldn’t deprive the dying of booze and smokes, after all. They’re already dying. Let them have their life-shortening comforts – how much harm can it do?
In both my family members, we knew death would be soon. We smelled it in their breath, saw it in their skin color, and watched their breathing. Administering morphine was not a tough decision. I would not have done it when their bodies were still viable, even though their minds were failing.