It wouldn’t matter to me if I had the best care in the world and family with me at all times - there are three conditions under which I wouldn’t want to live. One is if I am unable to communicate, but if that’s the case, I won’t be able to tell anyone I don’t wish to live. The others are if I am in constant physical pain or if my mind or memory is so far gone that I am no longer myself. I’m not talking about forgetting where I put my keys, or even forgetting to eat lunch. I’m talking about constantly looking for my husband because I don’t remember he died ten years ago. I hope if I ever get that way ( which I may not) I recognize it while I still have moments of lucidity and can do something about it.
I suspect the problem is where to draw that line. It’s far from a clear demarcation between yourself/not yourself. And dementia is a weird thing- it’s not like deleting files from the hard drive, but more like they get progressively obscured over time and aren’t being recorded correctly. So people with dementia may do stuff like recall things that have happened, but have those memories sort of adrift in time without a lot of context. Or they may remember part, but not all of what was said, and will fill in the gaps with BS to make a coherent (to them) story out of what they remember.
Using personal examples, the person with dementia may remember their neighbors fondly at their old house, but not realize that they’re sort of rolling up two decades of good neighborly actions into their concept of what the neighbors are like now. Which isn’t true. Or they may think their son stuck them in the retirement community because it was convenient for him. In reality, she was unhappy at home and having issues with medications and taking care of things, agreed to move into the community, and the son made an offhand comment about how the community was closer to home, and that would make things easier than driving 15 miles out of his way to check on her. But all she remembers is that he said it would be more convenient, and that’s what she constructed her reality of why she’s there around.
Like I was saying, the problem is when you draw that line. People are often “out there” with dementia, but not necessarily at the point where anyone would reasonably say they should be euthanized.
Thank you for thinking like this. When my mother was dying last year and all you could see is a very old lady who was losing her mind, I wanted to tell everyone, “She wasn’t always like this! She was vibrant and alive and clever and fun.” At the end, she was losing her mind, thankfully recognizing me and her other children, but really nothing else. She was unhappy for the first time in her life. Then she fell and broke her hip. it was inoperable “because of her age and dementia.” I’m not sure that’s true, but the very nice people at the hospital (including the Chaplin) suggested that they could keep her comfortable (i.e. unconscious) for a few days and she would pass away quietly and peacefully. Basically, we euthanized her. I don’t feel guilty about it, (she was clear when she was younger about things like this) but I am still very sad.
I read an article a while back about this situation occurring somewhere in Europe (Netherlands, maybe?). And the answer was that they just killed these people on the basis that they didn’t have the mental capacity to revoke their initial instructions (which were given at a time when the person was competent and was designed to address exactly this situation – they wanted to die once they deteriorated to a certain point). It was a pretty upsetting article, as I recall.
Edit: This is presumably the situation that prompted the article. But it’s not the article I read, which was focused on the physicians who had some moral qualms about killing people who asking not to die.
This is a really tricky issue. On the one hand, there’s clearly good reason to want such decisions to be made by people of clear mind. On the other hand, when the reason to want to die is precisely that one is not of clear mind and has no significant chance of being so again: saying that this should never be acceptable as a reason seems to me to be, um, unreasonable. But this isn’t something that has a predictable onset date, or a more than roughly predictable course of progression; I can’t say, on Tuesday, while of clear mind, that a week from Thursday I’ll be too far gone in dementia, so I want to schedule my death for Wednesday night while I’m still capable of doing so.
My mother was in dementia, though not nearly so far gone as ODB. She’d been clear and consistent ever since my father’s death some twenty years previously that she did not want extreme measures. She quit eating. She clearly declined artificial feeding. She was arguable no longer mentally capable of doing so. I was her health care proxy, and the nursing home called me. I confirmed her wishes, and she died three days later.
She was in moderate dementia, and had a broken hip that wasn’t healing, though the hospital kept insisting that it might eventually do so. Should she have had to settle the matter by not eating? (I will say that I don’t think she was hungry.)
She, and all of her five siblings except the one who died of a probably location-connected cancer in his 70’s, developed dementia during their 80’s. It’s an unpleasant thing to die either of or with. Should I have to die that way, because by the time it’s advanced enough to be really unpleasant one’s no longer legally capable? Would I be wise to find some way to do so when I develop earlier symptoms, thereby forgoing months or possibly years of reasonably good life because I don’t dare wait until I’m too far gone to accomplish it?
Oh yes indeed.
– not a problem limited to this issue. Many humans, and in particular human rule systems, love nice clean lines. The universe, not so much.
I think I saw a YouTube documentary about the story that @Falchion references.
ISTM that there is kind of an inherent matrix that’s probably applicable to these situations, each ‘cell’ probably requiring different criteria.
My stab at it:
| STATUS: ADVANCED DEMENTIA | |
|---|---|
| ADVANCE | CURRENT WISH |
| DIRECTIVE? | TO DIE? |
| YES | YES |
| NO | NO |
| YES | NO |
| NO | YES |
IMHO, somebody who’s a YES/YES or a NO/NO is a relatively clear-cut case. If one’s country permits medical assistance in dying for advanced dementia, these cases are likely relatively uncomplicated.
Obviously, the NO/YES and the YES/NO are far more fraught. IIRC, both the Netherlands and Belgium manage these cases as exceptions and have pretty stringent requirements involving medical professionals, review boards, and family members.
Meaning: something that shouldn’t be taken lightly … doesn’t appear to be taken lightly.
And, AIUI, there are very few significant “complaints” about the functioning of the end-of-life system in at least these two countries.
There’s a pretty comprehensive look at how the Netherlands and Belgium (the two countries differ in this regard) handle such cases – including the above-referenced story – here:
The data also show that, in each of these two countries, euthanasia for advanced dementia is extremely rare as a % of all euthanasia cases. It’s on the rise, though, and we can anticipate a fairly hefty quantitative impact as the Boomers age.
Dementia sucks because it’s not readily evident what’s happening. My FIL was showing signs of cognitive decline a couple summers ago, but was still enough there that it was still him. Later that fall he was taking his dirty/bloody diaper over to his neighbor’s house and begging to be taken to the hospital. It took a few more months for the family to align on placing him in a senior care facility, where he lives now. Today he no longer recognizes any of us and is nearing the top level of care the facility can provide - next stop is a SNF. The man I once knew is no longer there, and his behavior and health issues, and quality of life are severely diminished, compared to what he was before. The younger him, even 5 years ago, would be mortified at what he’s become. Yet, you look at him and he just looks like a fragile old man with something to offer - his mind is gone but his body persists. It’s hard to know what’s right, but the other shitty thing about dementia is that it wont get better, only worse. And I am not sure what’s worse: euthanizing a dementia patient or waiting, sometimes a long time, for them to die.
Another question is what level of care you provide the patient to extend the existence of their carcass. As opposed to hospice.
When my MIL was a vegetable, my wife’s sister (power of atty) refused that she be administered certain pain meds, because she feared they would speed death. IMO, that was elder abuse.
Right. So that’s why I want a “deadman’s handle” approach. You opt in to PAS early while you unambiguously have a clear mind to make the decision. And you agree to undergo periodic cognitive function tests which if you fail (in whatever way you, yourself, previously specified) will trigger your wish for PAS. You can also, of course, opt back out of the plan completely at any time if you change your mind and express that wish.
I saw the way my Dad went, and for the last couple of years of his life in dementia and physical deterioration he did not recognize me or my sister, could not physically or mentally do anything that used to give him pleasure or even distraction, he was a shell - utterly lost and miserable and angry and in pain. I think I have a right to opt out of that, and fuck anyone who wants to deny me that right.
We get that very thing sometimes. The family wants them awake and in pain because it benefits them not the dying person. If they insist no drugs, there’s nothing we can do except listen to their cries of pain long after the relatives have left because “it’s too hard seeing them like that”. Too many of them spend their last few days/hours alone and delirious with pain/dementia. Sometimes I’ll use my phone to bring up some music from their heyday and hold it to their ear so they can listen to it. It often helps for a bit to calm them.
It’s absolutely terrible. As has already been said we’d rush a beloved pet to the vet to quickly end their suffering. I’m not kidding when I say I will throw myself off a bridge if I feel my mind slipping away. I’m not dying like that. No way.
Right, and anyone who denies you the right to request PAS under specified circumstances is basically forcing you to jump early, or risk losing the physical/mental wherewithal to jump at all.
I’m missing something -how in the world does it benefit them?
While in general I am opposed to suicide my pro-choice stance is similar to yours and while I don’t approve I do defend your right to choose death over what to you would be an intolerable existence. When it’s YOUR choice.
My concern is when somebody else gets to do the choosing (outside of designated medical power of attorney and/or advance directives). I don’t want anyone other than myself choosing to kill me. Ever.
Mine, too!
Because they are awake and they can sometimes reply or talk back rather than just lying there looking like they’re already dead.
My sister, who is an end-of-life specialist (hospice director) says that it is quite common for the dying to stop being either hungry or thirsty, which is why they often stop eating (we can see this in our pets as well). It’s part of the process of the body shutting down.
Of course, if she does have a terminal patient that wants to eat or drink, or expresses discomfort, something can (and should) be done about that, but apparently the dying often really do not feel either hungry or thirsty. Failure to understand that can result in relatives demanding tube-feeding, which can prolong dying without relieving suffering.
So is masturbation, depending on who you ask.
I was just going to say basically the same thing about my mother. She died a couple of months after her 101st birthday, after suffering a fall while brushing her teeth. Before then, she was still relatively sharp in the mind, although a bit forgetful. After she fell, she was in severe pain, but her Final Directive indicated that she wanted no heroic measures to keep her alive. The staff and I (as her medical POA) decided that keeping her comfortable and pain-free was the best thing. After 5 days of morphine, little water, and no food, she passed away in her sleep. I was with her when she took her last breath, and my immediate feeling was one of relief.
So if you break a limb with that kind of final directive in place, they keep you in a morphine induced coma until you die? Hmm…
I’m not sure that solves it. What if I’m no longer able to go outside, to appreciate being in the company of cats, to enjoy or do anything important to me, and I say that’s it, it’s time, I want to go now – but I can still pass the cognitive test, but I’m not considered to be legally competent?
When my mother was dying, I requested she be given her physician-ordered morphine slightly ahead of schedule, as while she could no longer talk she was making it clear that she was uncomfortable. The nurse who should have given it objected, on the grounds that it might hasten her death. There was no question at that point but that without artificial hydration and nutrition she was dying! Her doctor overrode the nurse, and we didn’t have any more trouble with it.
Yeah, that’s exactly what I’m worried about.
Yes. The situation in that particular case was that her doctors didn’t see any reason, other than her refusing to eat, why she should be dying just then. They thought she might well last for months or years – sliding further into dementia, quite possibly bedridden with a non-healing hip fracture, unable to enjoy much of anything she’d loved to do, unable to get back to her own home or even to mine, and pretty much entirely out of control of her life. But I do think she was having that effect, and wasn’t fighting horrible hunger pains or even much thirst, though she did keep accepting ice chips to moisten her mouth until she went into coma.