This may be a little after the fact, but here in Canada, the Supreme Court struck down the ban on assisted suicide opening the door for people to actively and legally have medically assisted means to end their lives. People who seek this type of medical intervention must be of sound mind and be suffering from a severe and incurable disease.
My question to the group is: Should people who have guardianship or power of attorney over someone with Alzheimers/dementia which is not treatable nor curable have the right to seek out this intervention for their loved one?
I have thought of this type of situation from time to time since the decision was handed down and wondered how many of us with loved ones suffering from this horrendous disease would opt for this...I do believe that there are instances in which perhaps it might be deemed kinder and more humane to end the suffering and indignities that are thrust upon our loved ones, but wonder how many would have the courage to make that decision for their loved one...Although I hate what this disease is doing to my husband and I hate the life I now live, I don't believe I would be able to make that decision on behalf of my husband...
I live in Canada and, to answer your question, I would not make a deliberate decision to end my husband's life, even though he was suffering from Alzheimer's. That being said, being a nurse,I also know that the heavy morphine-like sedative he had the last two days of his life were hard on his heart and breathing. The doctor and I discussed it and decided together that, since he was dying, he should be as comfortable as possible. His inability to swallow was distressing to him, and the medication gave him some relief. My husband and I had talked about his wishes before he got Alzheimer's, and he said he wanted to die as pain-free as possible, and so would I. He had a very good family doctor, whom I trusted to make an ethical, humane decision.
It's certainly good to know that Canada has allowed assisted suicide. When it comes to humanitarian issues, Canada is always near the top of the list. Poor U.S....A little further down.
To answer the question of whether I would ever have contributed to ending my Dear Helen's life, I would have to say, not until the very last week when she was clearly suffering and then in a coma.
It seems to me that with this new right to choose, that once again, the Alzheimers or dementia sufferer misses the proverbial boat so to speak as even those who are diagnosed and would have opted for this choice are unable to make that choice as by the time they are diagnosed they are probably not legally considered in full mental control...and the wheels of the bus go round and round....
I agree with Canada that people of sound mind should be allowed to choose assisted suicide under some conditions. But an Alzheimer's client is not of sound mind. I would never have chosen to assist Larry to die...his advance directives had stated very clearly that he wanted no heroics if he had no hope of returning to his previous quality of life. So I knew we were not going to do CPR, a feeding tube, a ventilator...but he never, ever, in all our conversations or in his advance directives said he wanted assisted suicide. He just wanted to stay home and die naturally. ("The old-fashioned way" as he put it.) The best thing in those final six days was the morphine. Thank God for morphine...the miracle drug, in his case anyway. He was so agitated and restless, but yet completely out of it...like an agitated, restless coma, if there is such a thing. The morphine made him comfortable, calm,and relaxed, and he just slipped away and slept away over those last six days.
There are so many ethics involved with assisted suicide. We could devote the whole forum to discussing it. But,remember that Canada has universal health care...there is a level playing field in terms of the economics of medicine. That is not true in the States, where health care is still a disgraceful patchwork of services...far more about money and profit than about compassion and care. (Obamacare should help to better the situation, but we shall see.) Anyway, it is difficult to legalize assisted suicide, when for many it could be used as an "out" because they can't afford to pay to treat their illness. As I said, a disgrace.
Georgestreit, although the Supreme Court has handed down their decision, I'm fairly certain that finding a doctor to assist will be another issue entirely...the struggle of following the law or your moral compass....much like the clerk in Kentucky if I'm not mistaken who is refusing to issue marriage licenses to gay couples based on her religious beliefs...difficult decisions abound!!!!
There are people with AD or other dementias that have chosen to take their life while they are still able. Most are done with the help of a doctor. Of course in some states it is legal. I would be one to take my life while still able. My husband has no thoughts of suicide but like Elizabeth's husband, no heroics. I won't treat him if he gets pneumonia, and who knows what else. I won't know until the time comes. Could even pull a 'Leisure Seeker' - if you have read the book you know what I mean.
This is from a website discussing the Supreme Court of Canada's decision: Here’s my opinion, with some background first. I do hospital care as well as an office practice, and it commonly involves palliative care. I’ve known my patients in this rural and under-doctored area for up to thirty years and I’m not going to forsake them at the end. Assisted suicide has not been legal here, but now we have a Supreme Court ruling that gives us 12 months to figure what to do. In general, the emphasis in end of life care in Canada is much more humane than that which I read about in the US – quality of life prevails over quantity. We simply don’t do heroics on dying people, and it may be that’s because there is no financial incentive to do them (and perhaps even a disincentive as their extra costs are paid for in our taxes). Proper palliative care can diminish the need to think about assisted suicide, but of course it doesn’t eliminate it. If we had passed legislation on assisted suicide before the Supreme Court was involved, we could have made judgements about who might qualify, given that beyond the straightforward case of the terminally ill, there are some difficult groups to consider: 1. There will be people who hate their lives, but who aren’t terminally ill. Should they qualify? 2. How about the depressed, especially those who have been resistant to treatment. They may be rational and simply feel it isn’t worthwhile. 3. Physically disabled people, perhaps in great pain or having dreadful quality of life, but with their life-expectancy undiminished? 4. Who shall speak for those unable to speak for themselves, but who suffer? But now the Court has ruled that there is a right for all citizens with severe illness, disease and disability, and includes both physical and mental disorders in that ruling, to be assisted in ending their lives. So we have lost the opportunity to have a law that pre-screens the kind of illness and individual that might qualify. OK, that’s what the Supreme Court is for – and we will cope. In other jurisdictions where these things have been enacted, it is generally left to a physician to prescribe a lethal dose of medication, and it is up to the patient to self-administer it. There is no expectation that a physician must do this on demand; they have the option to decline and allow some other doc to do it as a matter of conscience.
2nd part of posting: In the comments at WEIT the last time this was discussed, there was a good deal of ‘it’s about the patient, not about you’ directed at docs who raised even mild objections to being given this role, to the extent in one case of a thoughtful doc being told he needed to change career. Well, I’ve some sympathy with him/her, despite my long history of supporting assisted suicide, and my liberal exploitation of the ‘dual-effect’ of narcotics in the terminally ill. The first reason is that as a professional, I owe my patients something that is central to my job – my best opinion. I don’t do my job if I give people what they want, I only do it if I give them what my professional judgement says is right. I have to justify it to myself, which I assess by imagining all my colleagues looking over my shoulder and second-guessing me. If I think they would agree, I can go ahead. There is no such thing as just writing a prescription that somebody requests without some judgement being applied; anything else is an abnegation of duty. It’s not always popular, but it is the difference between seeking a professional opinion and hiring a tradesman. It’s nothing to do with arrogance, but is a basic expectation of fulfilling the duty of care and any licensing body would come down hard on a doctor who didn’t take it seriously. Consequently, I have to approach a lethal prescription the same way. This is a matter that should be up to the patient, but by involving a doctor you invoke his judgement. I’ll repeat that to be clear, this is a matter that should be the patient’s decision and not the doctor’s, but in asking a doctor provide assistance, you cannot help but get the doctor’s sense of ethics involved, and that will always involve an internal debate about whether this particular case is justified. Am I ready to take on that role – trying to write a lethal prescription whilst attempting to withhold my own judgement? I’m not sure yet, and it is something that ought not to be done without much thought. There’s something else too, and that is that I will carry another burden afterwards in that I would feel some responsibility for that death. We all have a metaphorical bag of bones that we drag around after ourselves, filled with our mistakes that we wish we could do over. None of us need to make it heavier than it is. Now it’s likely that 90% of requests wouldn’t trigger any difficult ethical decision, but even then I still get the burden of responsibility. At some point the bag of bones gets too heavy. The second reason is a logistical one. I’m in a rural area. There isn’t another doctor always available to step in when the first doesn’t want to do it. There would also be the strong expectation (and a reasonable one) that a patient who has trusted me for thirty years would want me to be in on this very important matter. There would be pressure to conform, whatever my conscience said, or whether or not I agreed in that particular case (again, I know it’s not my decision, but you can’t get me involved without me having an opinion.) I’m already the only doctor in the area willing to be involved with abortions . Others keep their consciences clean by telling their patients to see me for this purpose, though how that is morally superior I’m not sure. I may have the reputation of being not only ‘the abortion doctor’, but also the one who is willing to ‘finish off’ patients? Doesn’t sound very nice.
Last part of posting: So all in all, I am in favour of assisted suicide being available, and I’m probably more willing than most to include ‘rational suicides’ outside the traditional terminally ill applicants. I’m not sure we need to include a doctor in the process, beyond certifying that a patient has no hope of cure in the latter cases, and that the patient understands the nature and implications of his decision in the former. I’m sure I’m influenced in this by a couple of factors. One was the decision made to withdraw fluids from my father after a devastating stroke. It’s common practice to treat big strokes palliatively when there seems no hope of any quality of life, and I don’t know how many times I have led a family through the decision making process. I never knew I would still be questioning myself as to whether I and my family had done the right thing 16 years later. The other thing is that it seems likely I now know how I shall die myself, having developed leukemia. Naturally I have been thinking on it a lot, but I’m still confused as to how I should proceed mentally. Yes, I would want the right to die, but I suspect decent palliative care will make the process comfortable enough that I don’t exercise that right. Complicated. So to summarise: a good decision, and one I applaud as a patient, whilst having qualms as the physician expected to assist. It probably just means I have to think about it to the point where the doctor in me is on the same page as the patient in me. If I can be comfortable with a complete transfer of decision-making to the patient for an abortion, I can probably do it for this. I just need, say, 12 months or so…
29scorpio, mary75* has given us a lot to think about as far as the ethics and the practicality of the Canadian ruling. Here are my thoughts about what you have asked:
1. I question whether you are describing assisted suicide or euthanasia (mercy killing). If the spouse or caregiver is following instructions given by the AD patient when they were of sound mind I guess it would be assisted suicide. However, if a spouse or caregiver decides to kill the AD patient to put them out of their misery, it is euthanasia. The same as when we have our animals put down.
2. Although you describe this as ending "the suffering and indignities" of an AD spouse, what you are describing is not intense physical pain being experienced at that moment (which is what mary75*'s first post and george* are describing). Instead, it is relieving the person of lower-level but long-term future suffering. And killing someone to spare them from "indignities" seems kind of drastic.
3. elizabeth* also raises the question of conflict of interest. A lot of the suffering caused by AD is experienced by the well spouse or care giver, rather than the spouse with AD. So there is the risk that the care giver’s decision to do this might be motivated by his or her own interests.
Looking at all this, I can say that I would not do this to my husband unless he was in severe pain that could not be alleviated any other way. However, I would not be as reluctant to take my own life if I were to learn that I had AD.
BTW, Here is a link to a story about a man who committed euthanasia (not assisted suicide) of a loved one. www.nytimes.com/2010/02/18/world/europe/18britain.html
Oy!!! I had just written a response to Myrtle's comments and when I hit submit I got signed out somehow so I'll be starting over lol...
Assisted suicide vs mercy killing...I hadn't really considered mercy killing to be honest...How many people consider something like dementia or Alzheimer's when contemplating what their wishes would be regarding medical care or intervention? Do people typically consider situations such as a horrific traffic accident or a terminal diagnosis of cancer or a stroke that are all very present in mind when we think of what's the worst case scenario? Does anyone who has not been either a caregiver or had experience with alzheimers or dementia give those scenarios any thought when considering their wishes for care? I tend to think that this type of disease which comes creeping slowly and silently into our lives tends not to be top of mind when one considers what kind of medical intervention one wants
As to the pain and suffering and indignities...it is often difficult to determine whether a dementia patient is in fact in pain, particularily when speech is gone or compromised...we all experience pain differently...what might constitute unbearable pain for one may be a non issue or quite tolerable for another so in the end determination of pain level may very well be determined by someone other than the patient themselves...Add to that that all pain is not necessarily physical...for some the shame or embarassment at finding themselves in diapers or drooling or similar situations may be intolerable to that person or the guilt they may feel over the toll their care is taking on the caregiver may be more than they can bear...pain and suffering could manifest in multiple ways and each person's tolerance can vary greatly, so how could we determine what is intense pain
And conflict of interest there will no doubt be plenty...it could be a very heavy burden for some, while others may look at it as a way of easing the suffering of those on a one way path with no hope of a u turn...it will no doubt create much soul searching for those faced with the request and I don't envy them the decision, although I too agree that people should have the right to choose...
I myself don't think I could make this decision for Thom, perhaps not even if he had made that choice if he had had the option, but as a caregiver on this journey, it has sure given me lots to consider for decisions I make for my own care going forward...
Myrtle has addressed deciding that someone else should commit suicide is euthanasia. Euthanasia of human beings is murder. I agree with your moral point that their choice is taken away by the nature of the disease. People certified incompetent can't make meet the minimal competence levels that would be needed to freely choose assisted suicide.
In Canada, there are some steps being taken to address how our doctors are going to deal with this. I believe ultimately it will be a separate agency because of the inherent conflicts. Some of that is well addressed by the comments Mary posted. With the exception that the writer feels they are qualified to judge who should qualify.
"There will be people who hate their lives, but who aren’t terminally ill. Should they qualify?"
I don't need a reason to exercise my rights. No one is qualified to judge that except me. It's abhorrent to me what people take upon themselves and have always taken upon themselves.
It's North American policy to quieten suicide numbers. Every city with a subway loses dozens of citizens a year. Every city with a high bridge loses dozens of citizens a year. A small percentage of people have always decided they're leaving.
Who should qualify to prevent it? The electro shock people? The lobotomy people? The hole in the skull to relieve pressure people? The leper people? The wheelchair laughers? The witch burners?
I live in a species that has committed an unbroken chain of crimes against life and dignity in every historic period in every geographic location in every race on every continent. From forced eviction of children from reservations in Canada, the use of Chinese as slaves building our railways, and the forced confinement and bad treatment of our Japanese heritage citizens names just some of our (Canada's) crimes recently. What society murders it's neighbours for it's own gains? Every society. What society claims moral leadership? Every society. What society has earned that moral high ground? None.
I exercise my rights over myself. I need give no one a reason for doing so. No one on this earth is qualified to answer to that except myself.
I said over a year ago on this topic that I will be keeping myself informed. I have an update. You go to Switzerland now. Not to Amsterdam. Canada can stick it's paperwork in it's ear.
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I'm sorry 29scorpio, I don't believe it's fair in Alzheimer's, but I don't believe guardianship or any other status should give state sanctioned right to anyone to end anyone else's life. I do think society would be better off if people who have nothing but further decline ahead and are not competent can have a process where humanitarian grounds permit some committee agreement if the gaurdian approves.
After a long, painful illness, my brother-in-law, John, was terminally ill and on his way out. The hospital had called the family and said they didn't expect him to live through the night. The family had gathered late that night at his bedside to say their last goodbyes and John seemed quite happy that it would soon be over. He was all doped up with pain medication as he bid them farewell.
His oldest son, Ted, told me that he went back to the hospital the next morning and found that John was still alive. His dad told him, "I woke up this morning and said to myself....."Oh shit....I'm still alive".
Well.....later that day, John got his wish, but it started me thinking. How many other mornings did John wake up thinking the came thought ?
I'm so glad George and I had the What If conversations. When asked about what I would want the nursing home to do if .... Happened I can with clear conscious say George wishes are..... No heroics. Let him go.
One of my cousins husband was one if the lawyers that went to the Ottawa and I said to him they didn't go far enough. We should have legal documents that we can write when we are of sound mind that if I get dementia or ....... This is when I've had enough and help me to die with dignity.
Considering that the baby boomer are now getting into their senior years and the huge cost it is going to be to our health care system I can see in the not so near future it being change so we can have a say on how we end our life no matter what illness we have.
George is now declining into the stages he never wanted to live through and there is nothing I can do to shorten it for him as per his wishes.
Amber I am very sorry that your hubby is having to live through these stages and I feel badly for the position you have been put in, knowing his wishes but being unable to do anything to see those wishes are carried out...I am glad to hear the decision to allow people to choose how they leave this world (in some cases) has come to fruition, however I too think there is much more clarification and fine tuning that is needed in order for it to move forward for those who choose to exercise their rights in this regard...time will tell
Assisted suicide for people with dementia is very troubling. Most people who sign papers for assisted suicide never go through it, they get piece of mind of making the decision and having more control over the time of death. Or they change their mind for various people. For someone with dementia, if the papers were done when they were able they would probably not have the option of changing their mind if the policy is to always follow the papers they sign.
This is very different from a DNR and being on hospice where one is declining medical services (which often don't prolong life but makes life miserable).