Before you had severe dementia, you requested food and water be withheld if your mental health greatly declined. Now you have severe dementia and you're hungry and want food. How should everyone treat you?

Let’s start with the assertion that the request to withhold supportive treatment costs essentially nothing.

That means that if you request it, you are placing little or no burden on others, other than having a place to lie down and die.

So in that context, it is interesting, if not discouraging, that one’s rational wish to be left alone should be be disregarded by someone else who thinks they know better.

It seems to be an emerging trend in the Western world.

Not good in a so called free society.

My grandma died a couple of years ago from complication from dementia. But in fact she had an ulcer and died horribly and only had a sports doctor giving her an iv in her thigh. She was 92 years old. She was blind and deaf, had dementia and alzheimers. My mom snuck her some cinnamon bun from McDonalds she liked it. I hope that the cinnamon bun didn’t upset her stomach. It is my wish to have permission to have a coke and fast food and a girlfriend as long as she isn’t abusive.

@josie I think the problem is that you have the person who made the request to stop feeding asking for food. It would be totally different if the person was refusing to eat and people were forcing her to. This person has gotten in such bad shape they can’t even remember not wanting to be fed anymore. Who do you listen to? The person in the past or in the present?

If someone is requesting food and water in the moment, it should be given to them, regardless as it is about alleviating suffering in the moment. Ideally the order should be to keep them sedated and beyond bodily need until they peacefully die.

I think you have to provide the person with food and water. They’re a conscious, sentient being and while they may be suffering from dementia, they can communicate they want food and water. I think that request overrules their earlier living will.

This is the same person as the person who originally said “Please do not feed me when I’m
too fucked up to care any more.” Now she cares. Give her the damn food.

I’d want to be fed, of course. Why did these people want to be starved? I can totally understand not wanting to be force-fed, but starvation is a horrible death.

Terrible situation. It is why it is horrific that in most states the only legal way to euthanize oneself or another is starvation. People try to say the person doesn’t suffer having food and water withheld, but I don’t believe it.

These sort of situations should help push for legalization and control of ending ones life in these sort of debilitating and terminal situations.

My inclination is to withhold the food, but I don’t know if that is actually what I would wind up doing in the situation if I was caring for the individual. It’s just awful.

I remember a similar case 10–15 years ago where a man had a living will that stated that if he were severely disabled and unable to recover, to withhold food and water. He was in a serious car accident and received multiple injuries—including severe brain damage. He was in a wheelchair, unable to eat except through a feeding tube in his stomach, and had an IQ around 45 or 50 with speech patterns of an 18 month old. His wife wanted the feeding to be stopped.

The problem? He seemed perfectly happy, smiling frequently and he played with balloons and a plastic bowling set made for little kids. He seemed to enjoy his adult daycare and not emotionally suffering at all. So the caregivers refused to remove the feeding tube. A court ruled that he continue to be fed. She appealed. I’m not sure what happened to the case after that. I can’t find the story anymore after all these years. But I’ve wondered.

I think the hardest time you could have with dementia or other kinds of brain damage is to be aware enough that you lost something important to you (your intellect and memories). But once you lose that, and you’re not aware of that loss, you are probably only thinking of the immediate present and the task at hand.

Sorry, I wanted to edit and couldn’t. Out of all of the women, I think one family could argue that the woman didn’t want food even though she “asked” for it. She would open her mouth whenever you pressed a spoon to her lips. If the spoon was empty, she still opened her mouth. She opened her mouth when you touched a certain part of her lips with any object.

I think you could argue that was just a reflex and not a true desire to eat.

What’s really sad about that case—the woman was a nurse and knew what was in store for her. She didn’t want that at all. Also, she was first diagnosed with Alzheimers in 1998. She’s still alive, but unable to speak and almost unable to swallow. The family is in agony over this.

If she were my family member I’d move her to Oregon and have her life ended humanely.
There is NO excuse for this kind of protracted and agonizing demise.

Oregon wouldn’t have helped. Except for Alzheimer’s these women were physically healthy and not showing any signs of dying any time soon. They have to be 6 months or less to live. Also, the first woman in the story definitely wouldn’t be able to pass a mental health evaluation. She can’t even talk.

I haven’t read the article, but from your details, it sounds like these people wanted to be allowed to die when they had lost their mental faculties. However, they were uninformed in terms of what sort of death would be appropriate. Having food and water withheld is a terrible way to let someone die. If they had known that, they would presumably have asked for a different release in their living wills.

@dappled_leaves I don’t think they really had any other options. I had a relative who stopped eating and drinking when his pancreatic cancer was advanced and incurable. I heard he wasn’t in much pain, but he probably had very little appetite because of the cancer in his abdominal region and all of the pain medication he was on. He didn’t have many other options. I think most of these women did assume that they’d be unconscious or on a lot of pain medication when the time came. All of these women made their living wills years before they got Alzheimer’s.

In short, I don’t think there are too many legal options for nonterminal patients. There are ways to obtain lethal cocktails that are shady and not really legal in the US. Also, their family could get in BIG trouble if there was an autopsy.

I did some research and the only place these people could legally get assisted suicide was the Netherlands, where the rules are much more relaxed than in Oregon.

Unfortunately, for these women now, it’s probably too late for them because they have all passed the point where they could persistently ask for it. They are mentally too far gone. Had they gone to the Netherlands years earlier, while they were still somewhat cognizant, they could have had assisted suicide.

Even so, I didn’t research what a foreigner would do in those situations. I THINK Terry Pratchett has plans to go to the Netherlands when his Alzheimers gets too bad for him, but maybe it’s different because he’s in the UK. I have no idea if an American citizen could get that kind of procedure done in the Netherlands.

@keobooks But isn’t this exactly why right-to-die legislation is so needed in the US? It was my impression that you were against that.

I am against it because I think it would be too easy to abuse and exploit the most disenfranchised people in our population—the poor, elderly, and disabled to name a few. I don’t think our healthcare system is in a state where this wouldn’t become rife with abuse.

That doesn’t mean I am 100% against it.

Also, I’m trying to think in the mindset of these women and what THEY would do. Whether or not I think it’s a good idea doesn’t really come into it.

@keobooks Yeah, I can understand the ambivalence. For me, it’s stories like this that make me want such legislation in place.

I am pretty damn certain that ANYONE in such a miserable state of existence would want to be humanely put out of their misery and helplessness. @keobooks As per the discussion the other day, I am not saying their are not kinks that would need to be worked out in the big picture, but…I think anybody would not, ever, choose to be a prisoner of a body and mind that no longer functioned to the extent that they were utterly and completely dependent on others for their every need.

Don’t be too certain, @Coloma. I wouldn’t choose death over that. But some would, and their wishes should be respected. The whole point is that everyone has a different threshold; everyone has a different set of needs and wants that constitute a life worth living – you don’t speak for me, but neither does @keobooks. Which is why we should be allowed to make our own decisions.

Right to die legislation will put power into more people’s hands, not fewer. Preventing that legislation because of concerns about the risk of abuse in a small number of cases does not serve the greater public good.

It gives me plenty to think about. I’m not all set for changing my mind. I know I wouldn’t want to end up like that and would likely do myself in (no assistance) while I was still lucid. But maybe these women thought they could do the same—and it gradually got harder and harder for them. One woman HAD decided to stop eating, but couldn’t stick with it. She was sometimes resolved and then later on she’d forget and start begging for food.

Regardless of my opinions of the laws, its a bit moot because none of these women would qualify anyway. Like I said earlier. These women are not near death and once they become near enough, they won’t be aware enough to legally ask for it.

I wonder what sort of palliative care you can give to someone who is not in physical pain but is still slowly falling apart? Probably if these women were on enough painkillers, they wouldn’t be hungry anymore. But they don’t really “need” painkillers, so it’s probably unethical to give them painkillers.

I’m betting as more baby boomers get into the Alzheimer’s years, we’ll have less legal and medical limbo that there is now and there will be better ways to care for these patients and keep their wishes not to live the way they are now in tact.

@keobooks Yes, I agree that this will have to happen, because of the sheer numbers involved. People will have to come to a solution or compromise of some sort.

@dappled_leaves Agreed, that was my point in a similar discussion the other day. I will retract my above sharing, although, for the life of me, pun intended, lol I don;t understand why anyone would want to be mere putty in the hands of another given grave loss of all independence, mental, physical etc. Yep, everyones definition of quality of life is differnt and needs to be respected based on individual desires.

@Coloma Because a life restricted to the mind alone is preferable to being utterly extinguished.

@dappled_leaves Shiver…I think I’d lose my mind too if I was bedridden and couldn’t move at all. :-(

If someone was begging and pleading to be fed, regardless of their earlier request I wouldn’t be able to turn them away. It would just feel wrong.

Even if they had made the choice to starve to death, they may not have thought through the consequences and changed their mind when faced with the prospect of actually slowly dying from starvation.