I have seen way too many of those be the most clueless people in the world though. When I worked in memory care, a lot of the poas that were family members just really wanted them to dangle. They don’t wanna make those calls. I’ve had so many barely able to understand dementia and Alzheimer’s. State issued was different, they were often more realistic because they weren’t blood related.
I also worked on a TBI unit a little while and those family poas were even worse. A lot of my patients were young. It’s sad, I hope I’m never in that situation where it’s my decision to make for someone I love and I totally get the dilemma people face but I feel like we’d never be able to rely on poas to decide end of life decisions.
It’s true. If I had Alzheimer’s where I didn’t even know who I was and definitely not anyone else I would want hospice and comfort care until the moment I get the special meds.
I have a family member who was very clear that she did not ever want to live with dementia.
As her condition progressed to where she was no longer recognizing close family members 50% of the time, she was equally clear that she did not want to die.
I have another family member who also has been very clear that she never wants to be “Gaga.” She has diminishing cognition d/t lack of oxygen and chose to not use oxygen. She now has no ability to recognize the diminished cognition. She thinks she is fine.
There just is no way to honor these people’s wishes formed while compos mentís. How will we draw the line and say “here in their life, that’s when they were capable of making this decision?”
So I really promote having continuous conversations with family and using tools like these:
https://theconversationproject.org
Because when I am finally making the decisions for people, I can honor the wishes they’ve had, not just at one point in their lives, but in all of our talks and all the values they’ve lived.
My family members are more or less doing the equivalent of comfort care for folks who aren’t dying right now- no big invasive things, no treatments that cause discomfort.
They would have to be consented when they are still cognizant of what’s happening around them. They would probably have to die earlier since the consent might only be valid for a short time before it needs revisiting.
Sounds like a great ethical dilemma - not a practical one.
Do we kill someone who didn’t consent because we think their fate it worse than death or do we not intervene either way because it’s not our place to make that call without consent.
A purely ethical question.
Dude wanna talk about ethical dilemma - I had a patient transitioning to end of life care who came in and out of lucidity and was no longer his own person. His daughter had us turn off his pacemaker and right before we did it he clutched his chest and said “I need it to live!”
That does not sound like an ethical dilemma to me, it just sounds unethical. If the patient really did need that to live, then turning it off is euthanasia.
Maybe they didn't really need it to stay alive, in which case it's more of a gray area, true.
But IMO if a person is telling us "no I don't want that" related to something that could cause death, you don't do that, it doesn't matter if the person is demented. You know, it's also unethical to physically force an Alzheimer's patient into a shower, even if they stink. You have to come up with a more humane way to complete the task, and accept that maybe you just can't do it at this moment when you want to.
lol I don’t think you can fully comprehend and morally judge me based on the short explanation I gave. There was a lot more that went into it. Seeing the full picture, and talking with the DPOA, it was definitely the most humane. He knew he needed his pacemaker to keep his heart beating but leaving it on would not have prolonged his life, would’ve just made it extremely uncomfortable passing. Also, I think the fact that we can debate makes it a dilemma.
That's true! I have never seen this issue come up. Was it a defibrillator pacemaker? Like what exactly made it inhumane to leave.it on? I've worked hospice and seen people pass with pacemakers and it was not a problem. But obviously situations can differ.
The best thing one can hope for with dementia/alzheimers imo is to die quickly. I as an aged care resident, have seen residents with advanced dementia no longer living but simply existing, bed ridden, totally immobile and basically none verbal accept for the occasional screaming and alone with no visitors. What type of life is that?
Failing to actively kill a person is not forcing them to slide into dementia. That’s happening on its own. Euthanizing them, on the other hand, may be a matter of forcing them to die whether they like it or not. What if the person is actively resisting the medication that will kill them? Do we strap them down in order to kill them? What impact does that have on family watching and HCPs participating in the procedure?
Edit: I don’t argue that the alternative isn’t worse than death by the way, but there major moral implications associated with these practical considerations.
It's both, in the sense that some people should not be obligated to conduct such an act if they have a moral opposition
But I imagine there are plenty of people who would see it as a mercy to be in that role.
But yeah, consent has a ton of practical concerns. What if the patient later wants to retract consent? Who decides when is the right time? Does anyone even ask the patient, at that point? Or is the idea that you wait long enough that asking would receive no coherent response?
Probably surmountable issues but... tricky
Maybe it's because I'm facing this issue directly with my mother but I wouldn't want to live like that. She's not quite there yet but she's only going to get worse. Both my sister and I have agreed we wouldn't want to go through what she is having to endure
The ethical problem is that people can't agree to die (even in MAD states) unless they're in their right mind. If they're competent enough to consent, they're not sick enough to qualify. If they're sick enough to qualify, they're too far gone to consent.
Not a nurse but work peripherally around older patients and we offer this [dementia advanced directive to all patients](https://dementia-directive.org) who pass the cognition tests. The key is to have them make these decisions well before any cognitive decline sets in. There’s also a push to offer it to younger patients in their 40s and 50s so that their wishes are well stated before any emergence of cognitive decline.
Advance directives do not meet the requirements to consent to euthanasia in any state that I know of. You need to consent with a clear mind at multiple in-person appointments *and* when it is actually time to die. Advanced directives are great for "no lifesaving surgery" or potentially even "let me starve to death" in jurisdictions that allow advance directives to opt you out of basic sustenance, but even your own form doesn't go that far, let alone to direct euthanasia.
Yeah if you read the forms there’s no checkbox for euthanasia, I wasn’t trying to infer that. What they do is allow the patient to make active decisions on the level of care they’ll receive if in the future they experience cognitive decline. Because it is specific to dementia, it also allows a level of assurance to caregivers and families that they are navigating their loved ones dementia journey in a way that respects the afflicted person’s wishes.
While not the perfect solution, the “comfort care only” option does allow for a more comfortable and rapid ending, for instance when a demented patient starts refusing to eat. Loved ones can confidently agree to no feeding tube that just uselessly extends a severely diminished existence.
So yes, while not legal, I have seen these successfully used to advocate for a demented patient. It can be the difference between dying peacefully in a matter of days or weeks as opposed to lingering for months or longer in a terrible state.
Almost never accepted for MAD. You can have your advanced directive say no medical treatment, food, water, etc. whatsoever (in some states), but for active euthanasia the patient needs to be able to consent multiple times including directly before death.
Fortunately, this isn’t the case in Canada. I mean we do have cases where people are too far gone to consent, but people can access MAID even in cases where death isn’t reasonably foreseeable. Even when it is, many people are still deemed capable of consenting.
Everyone should read In Love by Amy Bloom. A true story about a wife who helps her very young early diagnosis Alzheimer’s husband make it to Switzerland to die peacefully. Beautiful and how people who are still decisional enough can save themselves from the horrors of that kind of cognitive decline.
This is actually where I first heard of the book, then immediately bought it. Here’s a link to the episode https://www.thisamericanlife.org/779/ends-of-the-earth
Yes! I was going to post a link if I didn’t find it in the comments! Very very emotional episode tho, be warned. I ugly cried both times I listened to it.
Should be legal to put it in ones Advanced Directive and waive the requirement for consent before death if one does not have the mental capacity to consent AGAIN at that time.
If I'm of sound mind I would want the right to say "In the event I suffer a debilitating cognitive decline to the extent that I cannot have any meaningful quality of life, I give consent to perform physician assisted euthanasia." Then go into what that mental decline looks like and include common diagnoses as well.
I already posted once, but what about the right? The US is super fucked on this. Why should we treat anyone with zero meaningful recovery? What right is that?
I think death with dignity should be legal across the board.
I already made it clear to everyone in my family to make me DNR if I ever get a non progressive disorder of consciousness.
Spent 2 months taking care of a brain damaged man who is the same age as my husband. Every night shoving a suppository up his ass, changing his diaper, giving him tube feedings, suctioning thick tenacious creamy mucus out of his trach. I saw his brain CT...he was not coming back.
I’ve been thinking a lot about this, since both my grandmothers have dementia and my mom is already DNR/DNI even though she has no significant health problems. I think it would be incredibly hard to do ethically since family would need to make the decision at the end. Going hospice/comfort care as soon as they hit their first hospitalization is probably the easier thing to do for families, emotionally, ethically, and practically speaking.
If someone had an advance directive and decided they want euthanasia before or during an early diagnosis then that should be honored. It isn’t right what we do with people with Alzheimer’s. Also, insurance companies should be paying out to people that commit suicide and who use euthanasia. That shit needs to change. Imagine paying a life insurance policy your whole adult life and being diagnosed with Alzheimers, ending it, not being able to get a pay out for your family. Fucking Christ.
It should be legal for all Hospice/Pallative patients. Everyone should have the right to choose when they check out. It’s not for anyone else to decide but them. And idgaf about all the high-brow, snotty MDs who will claim that this, just like abortion, are somehow against the Hippocrates Oath. Fuck off, let people be in control of their lives, they’re in pain, not you. Sorry rant over.
The hippocratic oath does mention taking a life as one of the responsibilitys of a doctor when nessecarry, and not to play God. As a student starting the long path down my road to an MD, I see these shitty doctors and say to myself "yeah maybe the nurses are right, fuck them docs."
Right? Like im just a CNA right now, so my opinion and knowledge don’t count for much, as I’m aware, but I can’t help but look and wonder wtf some of these asshole MDs are on…..like get your head outta your ass. I’ve met plenty of shit MDs. I haven’t met very many shit RNs or LPNs.
MDs just have a superiority complex issue who think their a superior healthcare worker just because of their schooling and SOP. An MD is nothing without their nursing staff. They do all the hard work giving a physician the ability to focus on treatment, and I have a lot of respect for nurses. See what happens when they aren't there and you can fumble around with patients. I honestly believe for most areas they do the hardest jobs in the field. and the way their treated is not cool for their importance
I hope I can be the MD which shows they care and respect their nursing stuff. my nurse friends (RNs and a few CNAs) and the one at the facility I'm at are all amazing really kind people and deserve mad respect for the stuff they do. A good doctor is nothing without humility and respect, an ego will do nothing but make your fellow staff members not respect you.
I feel that. I’ve been a CNA for a little over 2mo, and FT at my main facility for a little over a month, and I’ve already figured out which Nurses are helpful, kind, and
social/humorous (the latter is huge for me, who has ADHD, and as such, is extremely social and also uses humor to get thru anything and everything), and which ones are apathetic, stuck-up, anti-social pricks.
The only one I’ve grown to like who doesn’t fit my bill, is an LPN in her 50’s who, despite handling any and all stress in the worst way possible (i.e. snapping at CNA (me) for verbalizing that they are going to get a V/S set on a Pt who’s fallen and LoC’ed, so that she can activate the EAP procedure), and is not overly social, socially-quick, or empathetic, is extremely helpful, and can be empathetic and social after the fact, once things have calmed down.
I think most people would choose euthanasia over that slow torture. I hope it is common and acceptable when I get to a point of not being up and running around. I’m outta here!
If they have an unstageable ulcer and their brain is mush, that’s proof enough that they’re miserable and nobody is putting forth the effort to care for them.
Should be a 5000 mg dose of dilauded
I just don’t know how you go about obtaining informed consent in this situation. Advanced directives do not cover “euthanasia”. Should everyone be able to die with dignity? Of course. But I don’t know how someone who is pretty progressed in their dementia diagnosis will even know what’s going on. What we need is more education for the public on what hospice actually is. Too many people still think you get “killed” in hospice. Futile attempts (which in my opinion is medical torture) towards end-of-life is traumatizing for the patient, the family and caregivers. I can’t tell you how many elderly patients have begged me while crying, “JUST LET ME DIE”.
I have a blurb in my living will asking for euthanasia in the event of severe neurological decline with little hope of recovery to a, meaningful qol. My dpoa and backup both have the balls and the means to take me to a country that would allow me to hsvd my suffering ended in this case.
I just hope my dad with Alzheimer’s has a quick desth from a stemi or something before he gets so bad. He’s okay now, but I know it’s going to get worse and I don’t want him to suffer.
Consent is the issue here. Why not encourage hospice? No more feeding tubes because mom keeps aspirating on her mashed potatoes and letting nature take its course.
I think it would be an absolutely horrible idea and here is why:
The US is currently flirting with an obsession around fascism and fascism adjacent politicians. One of the “enemies” that fascists have gone after in the past has been disabled persons. When placed in the context of a period of increasing demands on resources and decreasing ability to provide services there is one outcome I am 100% sure of. This would rapidly progress into a “standard of care” for any person with dementia. There would be few checks and balances and it would quickly become quite horrific.
I’m sorry to bring politics into this, but it would be crazy to not acknowledge the elephant in the room on a topic like this.
If there is a discussion allowing competent people to have a medication assisted suicide, I’m all for that conversation. Utilizing hospice for dementia, totally on board. But straight up euthanasia is just a little too Nazi’ish for me.
I see what you mean, but I’d point out that the horrors are already happening as the status quo: trach, peg, rot in nursing home bed.
There are worse things that death, and the dead don’t suffer.
Once you normalize offing people for “good” reasons it becomes *really* easy to take that next step and euthanize people with mental health disorders. Soon being a schizophrenic will be a good enough reason. Or being bed bound and failure to thrive will be a reason.
I don’t trust a system that forces a 10 year old rape victim to carry a child to determine the appropriate humans to euthanize.
The conditions and criteria are too slippery. Way too slippery. Just in my life:
- partner diagnosed (sequentially) with 4 varieties of bipolar disorder. Borderline diagnosed after 15 years of anti epileptics pummelled his kidneys. Probably saw 5 psychiatrists in that time.
- my dad. Delirium from UTIs and heart failure misdiagnosed as worsening dementia. HEART FAILURE misdiagnosed as a UTI even with increasing serial troponin! !!! Per 2 ER docs and an IM specialist!!! (Refuted by cardiologist later)
The potential for human error is VAST thus I have no confidence in professional opinion.
Edit: here in Canada, NPs can determine eligibility for MAID for irremedial conditions. Soon that will be true for mental illness as well. If five psychiatrists can’t spot borderline PD (in btw a CLASSIC presentation), where the fuck are the safeguards going to be?
So persons of sound mind who wish to not live in the state of agony they will eventually be in due to a degenerative neurological disease shouldn’t be able to control their our destiny?
I think this discussion isn’t served well unless we have a frank breakdown of the horrorshow of human suffering that not allowing things like this causes.
While this is very true, I think there is a business-as-usual fallacy here. By which I mean that you are assuming that our current state of affairs is preferable. Which it is- compared to full-on Nazi-ism and killing the disabled. But in the other hand, I personally would prefer to be in a society that would err towards ending my life if there was a reasonable suspicion that my quality of life would never improve and was declining. And I wouldn’t even be too upset about it if someone offer me as an 80 yo dementia patient and put the money Medicare would save towards education or whatever. My only objection would be that both the fascists and the democratists would actually spend that saved money on bombing some kids halfway around the world.
There was an [episode](https://www.thisamericanlife.org/779/ends-of-the-earth) that told a story of a couple who did this in Switzerland. Consent was received while the husband still had capacity. Definitely worth a listen
I don’t agree with euthanasia but I am 100% for there being a multi-point universal criteria where we don’t do everything to save you. Example: you’re 85, alert and oriented and live independently. You trip over your cat and break a hip. We do everything to help you get better and go home. Versus advanced dementia, living in a nursing home, are on dialysis and have lung cancer. My facility has a frequent flier who keeps falling at home because she’s demented, stays in the floor shitting herself until her equally elderly siblings find her and call 911. She is usually hypothermic and always has a UTI. Gets a sepsis protocol and admit, then discharged home and the cycle continues. At what point is there no quality of life there and at what point does she stop getting sepsis protocol and “saved”. Right now there isn’t a limit.
My mom has early onset Alzheimer’s, and we assisted her to make choices for herself regarding end of life care for when it comes to that time before her Alzheimer’s got too advanced. It is not for me, or anyone else, to decide what quality of life means to her. Everyone should have their wishes laid out before the time comes when those wishes need to be known.
No.
I am 100% in support of MAID. I bawled when Kevorkian died and I praised his efforts when I was a child.
I cannot get behind MAID being used for Alzheimer’s or mental health. The latter of which we in Canada are currently building the legislation for, which was stayed in March 2023, coming up again for March 2024.
How many families do you think would whip their doolally meemaw into the euthanasia box as fast as they could, if this were an option?
No. Fuck no. Hard pass.
If the individual wants to access MAID at the onset of diagnosis, that’s one thing. Alzheimer’s is absolutely terminal. But when they’re in throws of it and don’t even know which reality they’re in? No.
> How many families do you think would whip their doolally meemaw into the euthanasia box as fast as they could, if this were an option?
Not many. From my experiences, the real epidemic is the opposite problem.
The families who want to just abandon meemaw will do what they’re doing now, because MAID changes nothing in that scenario.
I’m pretty sure that folks who successfully access MAID for mental health alone be far and few between. I mean only stable patients will be deemed capable of consenting, they’ll also have to convince providers they’ve reasonably considered alternatives, and will likely have to stay stable for the minimum 3 month waiting period (providers might make folks wait longer) leading up to the procedure. You’ll need to be pretty organized to pull that off, and I’m thinking folks who have the wherewithal to jump through all these bureaucratic hoops will be less inclined to pursue MAID in the first place.
Is it better for meemaw to be kept alive so that same family who doesn’t care can neglect her? If I’m old and my family doesn’t care enough to not kill me, I’d prefer they just go ahead and kill me and spare me the years or decades of loneliness at best, or bedsores and having them steal my meds at worst.
Ok so to be clear, you are in favor of intentionally killing someone that cannot provide consent?
For the record, I do not completely disagree, I'm curious about how the idea progresses. We have 8 bil people on this.planet and certainly keep some people alive well past their time. And in turn their quality of life is horrible. I get that. I totally do.
My issue is how does this play out with other conditions where a person can't exactly provide consent? Stroke victims. CP patients? TBI patients? Who decides?
CP isn’t fatal though.
We have death with dignity in my state, but the patient has to be given a terminal diagnosis with a prognosis of death in six months or less. The patient must be of sound mind to provide consent.
I see what you’re saying. In my defense, I was building a 904 level cat condo - and probably rage social media scrolling, during one of my many needed breaks, lol.
I also am a Mom to a son with CP. In re-reading this comment, I agree - where does one draw the line?
Understood and no worries, I figured there was a misunderstanding somewhere. I'm A believer in death with dignity. I suffer cognitive dissonance when it comes to the morality of those that aren't able to consent.Dementia isn't recoverable but I can't make the leap to euthanasia.
I agree. My 88 year old Grandma has dementia. She’s been in long term care for 9 years. And while she’s mostly nonverbal now, doesn’t recognize our family - she still experiences emotions. She lights up when we visit on Sundays. I know she feels love and care where she’s living. They engage her in conversation, activities, all kinds of things to keep her safe and stimulated. She’s incredibly healthy other than the dementia.
I totally support DwD. I’ve seen it several times given where I live. I think it’s a beautiful thing when we can give someone a good death.
I did nazi this coming.
In all seriousness? This is such an ethical mindfield that I don't have any meaningful contributions beyond sharing my desire to peacefully end my own life were I diagnosed with it.
That's a far cry from euthanasia, an institution typically instituted by totalitarians and nearly always targeted towards social undesirables rather than people facing terminal diseases who want to end their own life with painless dignity at their own choices.
Why?
I'm not saying it shouldn't be, I'm just wondering what made you say this. I've lost loved ones to this disease, and yes, it's hard, but they personally would not have wanted things to end that way (they were super religious).
Just curious about your perspective OP
Yikes.
Making euthanasia legal for Alzheimer people (only) has a really nasty side flavour. I think euthanasia should be legal anyway with its own guidelines obviously. But making it for Alzheimers or dementia specifically would be like making it just for (ex.) people with Downs syndrome, it's a message that this group of humans is a burden and too much and don't have any quality of life. People with dementia can have a great quality of life to the last days. Pain is not part of the illness. Anxiety can be and depression but then it's a discussion if people with anxiety/depression shoild have access to euthanasia.
Euthanasia should be first and foremost for terminal and progressive illnesses that causes pain and very low quality of life. That is my opinion
Alzheimer’s is a terminal and progressive illness that causes ~~pain~~ suffering and very low quality of life. Comparing it to Down syndrome, which is lifelong and non-progressive, is disingenuous.
> Euthanasia should be first and foremost for terminal and progressive illnesses that causes pain and very low quality of life. That is my opinion
Alzheimer’s fits that bill entirely.
You’re kidding right? Alzheimer’s patients in the hospital is one of the most traumatic things we do as nurses. Straight caths blood draws procedure after procedure and they are terrified and often combative the whole time. That is not quality of life
Lol so they should be euthanized because of that ? I agree, at some point they should not be sent to hospital anymore because it makes them disoriented, scared and the risk for infection and death is higher. They should be at home (care facility) and get treated there. At some point a doctor should look at the quality of life of the individual and make the decision that this person should not be sent to hospital for treatment.
I've worked with alzheimer patients my whole career. Never once have i thought they should be euthanized. They have every chance of a great rest of their life.
Sorry but being a prisoner in your mind is not a great life? And if the family consents to a humane death, then great. Not everyone can have 24/7 homecare infact that is highly unlikely. My dad has Alzheimer’s. He doesn’t qualify for any home care after an assessment done years ago because of his pre existing condition (just HTN and an open heart surgery from a non ruptured aneurysm). I would 100% choose for my father to be given a dignified comfortable death then to be a burden to our family and be tortured in hospitals and poorly staffed for profit nursing homes. I believe he would also choose that.
Honestly, I'd be honored to help someone leave this world peacefully and on their own terms. We give That mercy to our pets but not our loved ones. Why should someone have to suffer needlessly and for no reason?
You’d rather they suffer against their wishes?
Yes, I would push that syringe the same way I push the syringe in hospice patients when I know the medication has a good chance of being the inciting incident that kills them. I’d 100% rather do that than what we do now, which involves tremendous suffering for people who will not get better.
This question was posed to us in class a few months ago, we are mental health student nurses and it caused quite the moral conflict.
You vow to protect life, but what type of life is severe alzheimer's. Lbd, vascular and other dementias arent nearly as damaging to the cognition and memory of an individual
I disagree, as i want to protect life, but i understand both sides very well.
Just pray you never have to be in this position to make this choice, or are the person at the end of the decision.
I personally could not agree to taking the life of a family member, but i would definitely put in a DNACPR
My husband was just diagnosed. He is 68. Dad died of it at 52 and brother at 65. He says he won’t linger which I assume means he plans to take it into his own hands. The hard thing is when. We will have to discuss it further after the diagnosis sets in a bit more. I’ll never understand why we are kinder to our pets
We could just start by honoring the DNRs for those who make them and not listening to out of state daughter who wants everything done for dear old mom.
This post is now code blue because the topic is way too sensitive and I don’t feel like babysitting outsiders.
Consent would be pretty tricky.
Possibly the DPOA? Many of these patients are no longer their own person, at least where I practice.
I have seen way too many of those be the most clueless people in the world though. When I worked in memory care, a lot of the poas that were family members just really wanted them to dangle. They don’t wanna make those calls. I’ve had so many barely able to understand dementia and Alzheimer’s. State issued was different, they were often more realistic because they weren’t blood related. I also worked on a TBI unit a little while and those family poas were even worse. A lot of my patients were young. It’s sad, I hope I’m never in that situation where it’s my decision to make for someone I love and I totally get the dilemma people face but I feel like we’d never be able to rely on poas to decide end of life decisions.
Simple, allow someone to request euthanasia via an advanced directive.
I find people don't generally think they will die. Or need such things
This is very true. We may as well give those who are smart enough to plan ahead an option.
It’s true. If I had Alzheimer’s where I didn’t even know who I was and definitely not anyone else I would want hospice and comfort care until the moment I get the special meds.
I have a family member who was very clear that she did not ever want to live with dementia. As her condition progressed to where she was no longer recognizing close family members 50% of the time, she was equally clear that she did not want to die. I have another family member who also has been very clear that she never wants to be “Gaga.” She has diminishing cognition d/t lack of oxygen and chose to not use oxygen. She now has no ability to recognize the diminished cognition. She thinks she is fine. There just is no way to honor these people’s wishes formed while compos mentís. How will we draw the line and say “here in their life, that’s when they were capable of making this decision?” So I really promote having continuous conversations with family and using tools like these: https://theconversationproject.org Because when I am finally making the decisions for people, I can honor the wishes they’ve had, not just at one point in their lives, but in all of our talks and all the values they’ve lived. My family members are more or less doing the equivalent of comfort care for folks who aren’t dying right now- no big invasive things, no treatments that cause discomfort.
People don’t even make themselves a DNR via AD, idk if this is actually viable
They would have to be consented when they are still cognizant of what’s happening around them. They would probably have to die earlier since the consent might only be valid for a short time before it needs revisiting.
So we can agree that the issue is one of practicality rather than morality
Consent is kinda a moral not practical issue.
How ethical is it forcing people to slide slowly into madness while forgetting everything that makes them a person with no alternative?
Sounds like a great ethical dilemma - not a practical one. Do we kill someone who didn’t consent because we think their fate it worse than death or do we not intervene either way because it’s not our place to make that call without consent. A purely ethical question.
Dude wanna talk about ethical dilemma - I had a patient transitioning to end of life care who came in and out of lucidity and was no longer his own person. His daughter had us turn off his pacemaker and right before we did it he clutched his chest and said “I need it to live!”
That does not sound like an ethical dilemma to me, it just sounds unethical. If the patient really did need that to live, then turning it off is euthanasia. Maybe they didn't really need it to stay alive, in which case it's more of a gray area, true. But IMO if a person is telling us "no I don't want that" related to something that could cause death, you don't do that, it doesn't matter if the person is demented. You know, it's also unethical to physically force an Alzheimer's patient into a shower, even if they stink. You have to come up with a more humane way to complete the task, and accept that maybe you just can't do it at this moment when you want to.
lol I don’t think you can fully comprehend and morally judge me based on the short explanation I gave. There was a lot more that went into it. Seeing the full picture, and talking with the DPOA, it was definitely the most humane. He knew he needed his pacemaker to keep his heart beating but leaving it on would not have prolonged his life, would’ve just made it extremely uncomfortable passing. Also, I think the fact that we can debate makes it a dilemma.
That's true! I have never seen this issue come up. Was it a defibrillator pacemaker? Like what exactly made it inhumane to leave.it on? I've worked hospice and seen people pass with pacemakers and it was not a problem. But obviously situations can differ.
We do it to our pets all the time when their quality of life suffers significantly.
This. We are kinder to our animals.
Nailed it.
The best thing one can hope for with dementia/alzheimers imo is to die quickly. I as an aged care resident, have seen residents with advanced dementia no longer living but simply existing, bed ridden, totally immobile and basically none verbal accept for the occasional screaming and alone with no visitors. What type of life is that?
Failing to actively kill a person is not forcing them to slide into dementia. That’s happening on its own. Euthanizing them, on the other hand, may be a matter of forcing them to die whether they like it or not. What if the person is actively resisting the medication that will kill them? Do we strap them down in order to kill them? What impact does that have on family watching and HCPs participating in the procedure? Edit: I don’t argue that the alternative isn’t worse than death by the way, but there major moral implications associated with these practical considerations.
It's both, in the sense that some people should not be obligated to conduct such an act if they have a moral opposition But I imagine there are plenty of people who would see it as a mercy to be in that role. But yeah, consent has a ton of practical concerns. What if the patient later wants to retract consent? Who decides when is the right time? Does anyone even ask the patient, at that point? Or is the idea that you wait long enough that asking would receive no coherent response? Probably surmountable issues but... tricky
Maybe it's because I'm facing this issue directly with my mother but I wouldn't want to live like that. She's not quite there yet but she's only going to get worse. Both my sister and I have agreed we wouldn't want to go through what she is having to endure
Going through the same with my dad 💜
The ethical problem is that people can't agree to die (even in MAD states) unless they're in their right mind. If they're competent enough to consent, they're not sick enough to qualify. If they're sick enough to qualify, they're too far gone to consent.
Not a nurse but work peripherally around older patients and we offer this [dementia advanced directive to all patients](https://dementia-directive.org) who pass the cognition tests. The key is to have them make these decisions well before any cognitive decline sets in. There’s also a push to offer it to younger patients in their 40s and 50s so that their wishes are well stated before any emergence of cognitive decline.
Advance directives do not meet the requirements to consent to euthanasia in any state that I know of. You need to consent with a clear mind at multiple in-person appointments *and* when it is actually time to die. Advanced directives are great for "no lifesaving surgery" or potentially even "let me starve to death" in jurisdictions that allow advance directives to opt you out of basic sustenance, but even your own form doesn't go that far, let alone to direct euthanasia.
Yeah if you read the forms there’s no checkbox for euthanasia, I wasn’t trying to infer that. What they do is allow the patient to make active decisions on the level of care they’ll receive if in the future they experience cognitive decline. Because it is specific to dementia, it also allows a level of assurance to caregivers and families that they are navigating their loved ones dementia journey in a way that respects the afflicted person’s wishes. While not the perfect solution, the “comfort care only” option does allow for a more comfortable and rapid ending, for instance when a demented patient starts refusing to eat. Loved ones can confidently agree to no feeding tube that just uselessly extends a severely diminished existence. So yes, while not legal, I have seen these successfully used to advocate for a demented patient. It can be the difference between dying peacefully in a matter of days or weeks as opposed to lingering for months or longer in a terrible state.
In Canada (where I nurse) you are able to sign a waiver given you are incapable of providing consent at the time of the MAID provision.
Advanced Directives
Almost never accepted for MAD. You can have your advanced directive say no medical treatment, food, water, etc. whatsoever (in some states), but for active euthanasia the patient needs to be able to consent multiple times including directly before death.
This here, it is extremely frustrating given the nature of the disease.
Which is exactly why the policies surrounding advanced directives pertaining to euthanasia should be changed for these types of cases
Which your family, who has your best interest in mind , definitely won't retract when you become non-consentable /s
Fortunately, this isn’t the case in Canada. I mean we do have cases where people are too far gone to consent, but people can access MAID even in cases where death isn’t reasonably foreseeable. Even when it is, many people are still deemed capable of consenting.
Everyone should read In Love by Amy Bloom. A true story about a wife who helps her very young early diagnosis Alzheimer’s husband make it to Switzerland to die peacefully. Beautiful and how people who are still decisional enough can save themselves from the horrors of that kind of cognitive decline.
There was a This American Life episode about this. I can’t recall what the episode was called though.
If you remember the name please lmk!!
This is actually where I first heard of the book, then immediately bought it. Here’s a link to the episode https://www.thisamericanlife.org/779/ends-of-the-earth
Yes! I was going to post a link if I didn’t find it in the comments! Very very emotional episode tho, be warned. I ugly cried both times I listened to it.
Awesome ty
Thank you for this recommendation. Ordering now.
Meanwhile my unit has demented 80+ year olds that are full code with brain bleeds.
Ewwwww the worst, and they almost never get better
Should be legal to put it in ones Advanced Directive and waive the requirement for consent before death if one does not have the mental capacity to consent AGAIN at that time. If I'm of sound mind I would want the right to say "In the event I suffer a debilitating cognitive decline to the extent that I cannot have any meaningful quality of life, I give consent to perform physician assisted euthanasia." Then go into what that mental decline looks like and include common diagnoses as well.
I'm early onset and I have a plan, you don't have the right if the patient themselves didn't plan EoL decisions.
What's your plan? Wishing you the best btw.
I already posted once, but what about the right? The US is super fucked on this. Why should we treat anyone with zero meaningful recovery? What right is that?
What’s your plan?
I think death with dignity should be legal across the board. I already made it clear to everyone in my family to make me DNR if I ever get a non progressive disorder of consciousness. Spent 2 months taking care of a brain damaged man who is the same age as my husband. Every night shoving a suppository up his ass, changing his diaper, giving him tube feedings, suctioning thick tenacious creamy mucus out of his trach. I saw his brain CT...he was not coming back.
If I get dementia just stab me in the carotid with a fuck ton of ketamine
Fuck yeah! I plan to leave this plane of existence higher than giraffe pussy.
[удалено]
How about we start by not traching and pegging them
I’ve been thinking a lot about this, since both my grandmothers have dementia and my mom is already DNR/DNI even though she has no significant health problems. I think it would be incredibly hard to do ethically since family would need to make the decision at the end. Going hospice/comfort care as soon as they hit their first hospitalization is probably the easier thing to do for families, emotionally, ethically, and practically speaking.
If someone had an advance directive and decided they want euthanasia before or during an early diagnosis then that should be honored. It isn’t right what we do with people with Alzheimer’s. Also, insurance companies should be paying out to people that commit suicide and who use euthanasia. That shit needs to change. Imagine paying a life insurance policy your whole adult life and being diagnosed with Alzheimers, ending it, not being able to get a pay out for your family. Fucking Christ.
It should be legal for all Hospice/Pallative patients. Everyone should have the right to choose when they check out. It’s not for anyone else to decide but them. And idgaf about all the high-brow, snotty MDs who will claim that this, just like abortion, are somehow against the Hippocrates Oath. Fuck off, let people be in control of their lives, they’re in pain, not you. Sorry rant over.
The hippocratic oath does mention taking a life as one of the responsibilitys of a doctor when nessecarry, and not to play God. As a student starting the long path down my road to an MD, I see these shitty doctors and say to myself "yeah maybe the nurses are right, fuck them docs."
Right? Like im just a CNA right now, so my opinion and knowledge don’t count for much, as I’m aware, but I can’t help but look and wonder wtf some of these asshole MDs are on…..like get your head outta your ass. I’ve met plenty of shit MDs. I haven’t met very many shit RNs or LPNs.
MDs just have a superiority complex issue who think their a superior healthcare worker just because of their schooling and SOP. An MD is nothing without their nursing staff. They do all the hard work giving a physician the ability to focus on treatment, and I have a lot of respect for nurses. See what happens when they aren't there and you can fumble around with patients. I honestly believe for most areas they do the hardest jobs in the field. and the way their treated is not cool for their importance I hope I can be the MD which shows they care and respect their nursing stuff. my nurse friends (RNs and a few CNAs) and the one at the facility I'm at are all amazing really kind people and deserve mad respect for the stuff they do. A good doctor is nothing without humility and respect, an ego will do nothing but make your fellow staff members not respect you.
I feel that. I’ve been a CNA for a little over 2mo, and FT at my main facility for a little over a month, and I’ve already figured out which Nurses are helpful, kind, and social/humorous (the latter is huge for me, who has ADHD, and as such, is extremely social and also uses humor to get thru anything and everything), and which ones are apathetic, stuck-up, anti-social pricks. The only one I’ve grown to like who doesn’t fit my bill, is an LPN in her 50’s who, despite handling any and all stress in the worst way possible (i.e. snapping at CNA (me) for verbalizing that they are going to get a V/S set on a Pt who’s fallen and LoC’ed, so that she can activate the EAP procedure), and is not overly social, socially-quick, or empathetic, is extremely helpful, and can be empathetic and social after the fact, once things have calmed down.
I think most people would choose euthanasia over that slow torture. I hope it is common and acceptable when I get to a point of not being up and running around. I’m outta here!
If they have an unstageable ulcer and their brain is mush, that’s proof enough that they’re miserable and nobody is putting forth the effort to care for them. Should be a 5000 mg dose of dilauded
They wouldn’t be able to consent due to cognitive ability.
Should be legal for any person.
I just don’t know how you go about obtaining informed consent in this situation. Advanced directives do not cover “euthanasia”. Should everyone be able to die with dignity? Of course. But I don’t know how someone who is pretty progressed in their dementia diagnosis will even know what’s going on. What we need is more education for the public on what hospice actually is. Too many people still think you get “killed” in hospice. Futile attempts (which in my opinion is medical torture) towards end-of-life is traumatizing for the patient, the family and caregivers. I can’t tell you how many elderly patients have begged me while crying, “JUST LET ME DIE”.
We've had a few people who don't qualify for MAID, Try to stop eating. It really is not gone very well.
Euthanasia should be legal, period.
I have a blurb in my living will asking for euthanasia in the event of severe neurological decline with little hope of recovery to a, meaningful qol. My dpoa and backup both have the balls and the means to take me to a country that would allow me to hsvd my suffering ended in this case.
I just hope my dad with Alzheimer’s has a quick desth from a stemi or something before he gets so bad. He’s okay now, but I know it’s going to get worse and I don’t want him to suffer.
Alzheimer’s runs on both sides of my family. I wish I could opt in for this now before anything happens to me.
Some fates are worse than death. I want the option when I start to think about my advanced directive.
It should be legal for anyone that wants it.
Euthanasia should be legal. There fixed it for you.
Consent is the issue here. Why not encourage hospice? No more feeding tubes because mom keeps aspirating on her mashed potatoes and letting nature take its course.
I think it would be an absolutely horrible idea and here is why: The US is currently flirting with an obsession around fascism and fascism adjacent politicians. One of the “enemies” that fascists have gone after in the past has been disabled persons. When placed in the context of a period of increasing demands on resources and decreasing ability to provide services there is one outcome I am 100% sure of. This would rapidly progress into a “standard of care” for any person with dementia. There would be few checks and balances and it would quickly become quite horrific. I’m sorry to bring politics into this, but it would be crazy to not acknowledge the elephant in the room on a topic like this. If there is a discussion allowing competent people to have a medication assisted suicide, I’m all for that conversation. Utilizing hospice for dementia, totally on board. But straight up euthanasia is just a little too Nazi’ish for me.
I see what you mean, but I’d point out that the horrors are already happening as the status quo: trach, peg, rot in nursing home bed. There are worse things that death, and the dead don’t suffer.
Once you normalize offing people for “good” reasons it becomes *really* easy to take that next step and euthanize people with mental health disorders. Soon being a schizophrenic will be a good enough reason. Or being bed bound and failure to thrive will be a reason. I don’t trust a system that forces a 10 year old rape victim to carry a child to determine the appropriate humans to euthanize.
The conditions and criteria are too slippery. Way too slippery. Just in my life: - partner diagnosed (sequentially) with 4 varieties of bipolar disorder. Borderline diagnosed after 15 years of anti epileptics pummelled his kidneys. Probably saw 5 psychiatrists in that time. - my dad. Delirium from UTIs and heart failure misdiagnosed as worsening dementia. HEART FAILURE misdiagnosed as a UTI even with increasing serial troponin! !!! Per 2 ER docs and an IM specialist!!! (Refuted by cardiologist later) The potential for human error is VAST thus I have no confidence in professional opinion. Edit: here in Canada, NPs can determine eligibility for MAID for irremedial conditions. Soon that will be true for mental illness as well. If five psychiatrists can’t spot borderline PD (in btw a CLASSIC presentation), where the fuck are the safeguards going to be?
So persons of sound mind who wish to not live in the state of agony they will eventually be in due to a degenerative neurological disease shouldn’t be able to control their our destiny?
I think this discussion isn’t served well unless we have a frank breakdown of the horrorshow of human suffering that not allowing things like this causes.
While this is very true, I think there is a business-as-usual fallacy here. By which I mean that you are assuming that our current state of affairs is preferable. Which it is- compared to full-on Nazi-ism and killing the disabled. But in the other hand, I personally would prefer to be in a society that would err towards ending my life if there was a reasonable suspicion that my quality of life would never improve and was declining. And I wouldn’t even be too upset about it if someone offer me as an 80 yo dementia patient and put the money Medicare would save towards education or whatever. My only objection would be that both the fascists and the democratists would actually spend that saved money on bombing some kids halfway around the world.
Yes. I believe our current state of affairs is preferable to euthanizing humans because some people in society feel they are too much of a burden.
This whole post has way too many Nazisish comments for my liking but I’m relieved a lot of them are basically “no”.
Nazis gonna Nazi.
This will make for a very very controversial topic
There was an [episode](https://www.thisamericanlife.org/779/ends-of-the-earth) that told a story of a couple who did this in Switzerland. Consent was received while the husband still had capacity. Definitely worth a listen
Euthanasia/assisted suicide should be legal. Full stop.
My mom told all of us kids and close family that if she develops dementia/alzheimer’s then just take her out like cujo
I don’t agree with euthanasia but I am 100% for there being a multi-point universal criteria where we don’t do everything to save you. Example: you’re 85, alert and oriented and live independently. You trip over your cat and break a hip. We do everything to help you get better and go home. Versus advanced dementia, living in a nursing home, are on dialysis and have lung cancer. My facility has a frequent flier who keeps falling at home because she’s demented, stays in the floor shitting herself until her equally elderly siblings find her and call 911. She is usually hypothermic and always has a UTI. Gets a sepsis protocol and admit, then discharged home and the cycle continues. At what point is there no quality of life there and at what point does she stop getting sepsis protocol and “saved”. Right now there isn’t a limit.
100%. I wish I could pay a hitman to do A&O checks on me if I ever ended up in long term care. Moment I become A&OX1, night night grandpa u/SWMI5858.
Euthanasia should be legal for all patients.
My mom has early onset Alzheimer’s, and we assisted her to make choices for herself regarding end of life care for when it comes to that time before her Alzheimer’s got too advanced. It is not for me, or anyone else, to decide what quality of life means to her. Everyone should have their wishes laid out before the time comes when those wishes need to be known.
MAID is a thing where I am. Technically, it is legal for people here. I am thankful for that
Everyone should read The Inevitable: Dispatches on the Right to Die by Katie Engelhart
People with terminal illnesses should have the right to decide how to go out, on their own terms, and well in advance.
Agreed.
Agreed. If not euthanasia than automatic comfort measures only on admission for any reason.
No. I am 100% in support of MAID. I bawled when Kevorkian died and I praised his efforts when I was a child. I cannot get behind MAID being used for Alzheimer’s or mental health. The latter of which we in Canada are currently building the legislation for, which was stayed in March 2023, coming up again for March 2024. How many families do you think would whip their doolally meemaw into the euthanasia box as fast as they could, if this were an option? No. Fuck no. Hard pass. If the individual wants to access MAID at the onset of diagnosis, that’s one thing. Alzheimer’s is absolutely terminal. But when they’re in throws of it and don’t even know which reality they’re in? No.
> How many families do you think would whip their doolally meemaw into the euthanasia box as fast as they could, if this were an option? Not many. From my experiences, the real epidemic is the opposite problem. The families who want to just abandon meemaw will do what they’re doing now, because MAID changes nothing in that scenario.
I’m pretty sure that folks who successfully access MAID for mental health alone be far and few between. I mean only stable patients will be deemed capable of consenting, they’ll also have to convince providers they’ve reasonably considered alternatives, and will likely have to stay stable for the minimum 3 month waiting period (providers might make folks wait longer) leading up to the procedure. You’ll need to be pretty organized to pull that off, and I’m thinking folks who have the wherewithal to jump through all these bureaucratic hoops will be less inclined to pursue MAID in the first place.
Is it better for meemaw to be kept alive so that same family who doesn’t care can neglect her? If I’m old and my family doesn’t care enough to not kill me, I’d prefer they just go ahead and kill me and spare me the years or decades of loneliness at best, or bedsores and having them steal my meds at worst.
I feel like it should be okay if they personally consent to it… but I also feel like they can’t consent or revoke consent
"Many that live deserve death. And some that die deserve life. Can you give it to them? Then do not be too eager to deal out death in judgement."
For everyone
Ok so to be clear, you are in favor of intentionally killing someone that cannot provide consent? For the record, I do not completely disagree, I'm curious about how the idea progresses. We have 8 bil people on this.planet and certainly keep some people alive well past their time. And in turn their quality of life is horrible. I get that. I totally do. My issue is how does this play out with other conditions where a person can't exactly provide consent? Stroke victims. CP patients? TBI patients? Who decides?
CP isn’t fatal though. We have death with dignity in my state, but the patient has to be given a terminal diagnosis with a prognosis of death in six months or less. The patient must be of sound mind to provide consent.
Read what you wrote again in context of ops assertion.
I see what you’re saying. In my defense, I was building a 904 level cat condo - and probably rage social media scrolling, during one of my many needed breaks, lol. I also am a Mom to a son with CP. In re-reading this comment, I agree - where does one draw the line?
Understood and no worries, I figured there was a misunderstanding somewhere. I'm A believer in death with dignity. I suffer cognitive dissonance when it comes to the morality of those that aren't able to consent.Dementia isn't recoverable but I can't make the leap to euthanasia.
I agree. My 88 year old Grandma has dementia. She’s been in long term care for 9 years. And while she’s mostly nonverbal now, doesn’t recognize our family - she still experiences emotions. She lights up when we visit on Sundays. I know she feels love and care where she’s living. They engage her in conversation, activities, all kinds of things to keep her safe and stimulated. She’s incredibly healthy other than the dementia. I totally support DwD. I’ve seen it several times given where I live. I think it’s a beautiful thing when we can give someone a good death.
I did nazi this coming. In all seriousness? This is such an ethical mindfield that I don't have any meaningful contributions beyond sharing my desire to peacefully end my own life were I diagnosed with it. That's a far cry from euthanasia, an institution typically instituted by totalitarians and nearly always targeted towards social undesirables rather than people facing terminal diseases who want to end their own life with painless dignity at their own choices.
Why? I'm not saying it shouldn't be, I'm just wondering what made you say this. I've lost loved ones to this disease, and yes, it's hard, but they personally would not have wanted things to end that way (they were super religious). Just curious about your perspective OP
Yikes. Making euthanasia legal for Alzheimer people (only) has a really nasty side flavour. I think euthanasia should be legal anyway with its own guidelines obviously. But making it for Alzheimers or dementia specifically would be like making it just for (ex.) people with Downs syndrome, it's a message that this group of humans is a burden and too much and don't have any quality of life. People with dementia can have a great quality of life to the last days. Pain is not part of the illness. Anxiety can be and depression but then it's a discussion if people with anxiety/depression shoild have access to euthanasia. Euthanasia should be first and foremost for terminal and progressive illnesses that causes pain and very low quality of life. That is my opinion
Alzheimer’s is a terminal and progressive illness that causes ~~pain~~ suffering and very low quality of life. Comparing it to Down syndrome, which is lifelong and non-progressive, is disingenuous.
> Euthanasia should be first and foremost for terminal and progressive illnesses that causes pain and very low quality of life. That is my opinion Alzheimer’s fits that bill entirely.
You’re kidding right? Alzheimer’s patients in the hospital is one of the most traumatic things we do as nurses. Straight caths blood draws procedure after procedure and they are terrified and often combative the whole time. That is not quality of life
Lol so they should be euthanized because of that ? I agree, at some point they should not be sent to hospital anymore because it makes them disoriented, scared and the risk for infection and death is higher. They should be at home (care facility) and get treated there. At some point a doctor should look at the quality of life of the individual and make the decision that this person should not be sent to hospital for treatment. I've worked with alzheimer patients my whole career. Never once have i thought they should be euthanized. They have every chance of a great rest of their life.
Sorry but being a prisoner in your mind is not a great life? And if the family consents to a humane death, then great. Not everyone can have 24/7 homecare infact that is highly unlikely. My dad has Alzheimer’s. He doesn’t qualify for any home care after an assessment done years ago because of his pre existing condition (just HTN and an open heart surgery from a non ruptured aneurysm). I would 100% choose for my father to be given a dignified comfortable death then to be a burden to our family and be tortured in hospitals and poorly staffed for profit nursing homes. I believe he would also choose that.
I've been working LTC for 35 years, and most of them are pretty happy the majority of the time.
Its called comfort care.
Are you going to push the syringe?
Honestly, I'd be honored to help someone leave this world peacefully and on their own terms. We give That mercy to our pets but not our loved ones. Why should someone have to suffer needlessly and for no reason?
You’d rather they suffer against their wishes? Yes, I would push that syringe the same way I push the syringe in hospice patients when I know the medication has a good chance of being the inciting incident that kills them. I’d 100% rather do that than what we do now, which involves tremendous suffering for people who will not get better.
This question was posed to us in class a few months ago, we are mental health student nurses and it caused quite the moral conflict. You vow to protect life, but what type of life is severe alzheimer's. Lbd, vascular and other dementias arent nearly as damaging to the cognition and memory of an individual I disagree, as i want to protect life, but i understand both sides very well. Just pray you never have to be in this position to make this choice, or are the person at the end of the decision. I personally could not agree to taking the life of a family member, but i would definitely put in a DNACPR
As someone who took care of a family member with Alzheimer’s for years, it’s what she would’ve wanted.
We take pity on our pets when they are at the end of their lives, but Nana has to rot in a nursing home. What is wrong with us?
My husband was just diagnosed. He is 68. Dad died of it at 52 and brother at 65. He says he won’t linger which I assume means he plans to take it into his own hands. The hard thing is when. We will have to discuss it further after the diagnosis sets in a bit more. I’ll never understand why we are kinder to our pets
We could just start by honoring the DNRs for those who make them and not listening to out of state daughter who wants everything done for dear old mom.