Thank you for this post, Erin. As you probably remember, my impulse is to be a strong supporter of the right to assisted suicide, but you have given me a lot to think about.
I agree that one of the dangers of assisted suicide is that it is too easy for aggrieved or burdened families to bring emotional pressure to bear, either overtly or subtly, that might make the person suffering from a disability or dementia feel that they should choose suicide. And you are right that a lot of the issue would disappear if we only had appropriately robust palliative care and home health aides. I have read (in The Inevitable, by Katie Englehart--highly recommended!) that the hurdle for nearly everyone is incontinence. People can't bear to think about their loved ones having to change their diapers or clean them after a bowel accident. If there were adequately-paid nursing care to handle this, how many people would still want assisted suicide?
One final issue: both my grandparents had dementia, and it made them anxious and aggressive. My grandmother was really cruel to my mom for a few years, before her dementia advanced to the point where she couldn't speak. After watching what my mom went through, I decided that I never wanted to burden my children with the same duty, and that if I started to show signs of dementia, I would choose suicide. But your essay is making me rethink this decision. Maybe I am selling my kids short, and maybe they would rise to the occasion and possibly (eventually) even take pride in how they handled it. I don't know.
Anyway, I always appreciate a well-argued case for the other side. Who knows? You may cause me to change my mind.
Thank you for this kind and thoughtful response (as always!). The dementia one is really difficult because the person that individual was very often goes away. Sometimes the person is left gentle and kind, other times they become mean and combative. It really sucks. I think if something like assisted suicide were to be chosen (just like with abortion) it should be eyes wide open about the reasons.
Came here because of Freddie's post linking to your great piece on abortion!
On both topics, my perspective is coloured by the Canadian legal environment and how we see ourselves in comparison with the U.S.
I largely agree with you on the personhood of a fetus, and feel somewhat personally uncomfortable about abortion. Yet the many horrible things that can happen to your body due to pregnancy and labour also makes me uncomfortable, and so in the balance of things, I think the mother's bodily autonomy trumps the fetus' right to life, even if she did have sex knowing procreation was possible.
Eventually there comes a point at which you've gone so far that you've gone through most of the pregnancy anyway, and if you abort, you're essentially giving birth to the dead fetus, in which case it seems quite cruel and pointless to do an "elective" abortion. But even then, I'm more in favour of the Canadian approach of "not legal/illegal, but just leaving it up to the mother, doctor, and the medical guidelines" rather than "illegal except for saving the life of the mother." While somewhat less democratic to leave the guidelines in the hands of the provincial medical associations, putting individual medical decisions in the hands of judges to decide whether the woman's life was actually in danger seems worse.
With MAiD, my view is also shaped by Canada's increasingly permissive laws. Previously I would have considered myself saddened by MAiD but supportive of ones bodily autonomy nonetheless. But last year, our laws were changed so that you can access it if you have a grevious disability (which by next year will include mental illness! And maybe some talk of allowing it for minors!) but aren't immenently dying.
This has resulted in a lot of disabled Canadians talking about new pressures from their medical teams to consider MAiD -- both implicit and sometimes explicit. It's especially egregious coming from those relying on our terrible disability welfare program (ODSP in Ontario), which keeps people in abject poverty. I hear lots of stories of people who are absolutely hopeless their financial conditions will ever get better, and so are thinking of MAiD on those grounds. That the government would rather kill you than give you food to eat is just appalling.
So I guess in my own Grand Theory, I support bodily autonomy, but with the caveat that if the government is going to supply and pay for the doctors to end your or your fetus's life, they also have a positive moral responsibility to, as much as possible, provide resources to people to make sure you're not choosing death because you simply can't afford life.
I think your final thought is very much in line with my own thoughts. With regard to abortion, I really don’t believe women are going to choose later abortion in droves, because it is arduous and in some cases very similar to giving birth. But the recent/upcoming MAID changes are really upsetting to me, for all the reasons you’ve outlined. In this I’m firmly with the disability activists who press the public to consider how much anti-disability bias they’re actually harboring.
This is so helpful in challenging us to think through these issues more carefully, thank you. Not to mention, if a miserable bastard like Winnebago Man found a good reason to stay alive, maybe that means something? Although he seems to get a certain amount of pleasure out of his misery (love the way that man enunciates).
As I said last time, examining these four types of dilemmas, which are otherwise so different, in terms of the common ethical thread and the complex feelings this brings up, seems like a totally valuable exercise whether or not you ever come up with your unified ethic of life. I'm recalling that this particular question of assisted suicide is the one that originally inspired you to do the whole series, so maybe that's significant. It does feel tougher to dismiss than the abortion debate, where (at least for me) the issue of legality, and implications of over-legislating as well as the larger social context, overshadows any lingering discomfort about the ethics. Whereas, it's hard to make suicide into an abstraction, let alone facilitating someone else's. And I would definitely be more concerned about the potential for abusing/trivializing assisted suicide, than abusing abortion. Do you know the philosopher Joel Michael Reynolds? He's written some powerful stuff about the ableism issues you allude to, including a memoir The Life Worth Living: https://joelreynolds.me/
I have always supported the right to choose about one's own death, and the value of having a system in place like MAID to facilitate this in a systematic and accountable way, but what you discuss should at least give pause no matter where we land. It's interesting - just last spring I TA'ed an undergraduate course titled Death and Dying that devoted an entire module to MAID and assisted dying both as policy and lived experience, and I graded a large number of essays on this question. The professor was excellent and the course designed in a way to provoke a lot of critical thinking, so the students' reflections on all of this were generally very good. But I was struck by how few of them challenged MAID as an acceptable policy; there definitely seemed to be a bias in the course (deserved or not) toward emphasizing its humane and progressive features, even as the ethical dilemmas were acknowledged.
Thanks for the recommendation; I wasn’t aware of Reynolds. I was going to say believe it or not that kind of thing is right up my alley, but I’m sure you’re not surprised considering the series I’m writing 😂
I’ve found the work and memoirs of Paul Kalanithi (When Breath Becomes Air), Atul Gawande (Being Mortal), and Dr. BJ Miller (a hospice and palliative care provider) to be moving and thought provoking. I’m not unequivocally opposed to assisted suicide, just like I’m not unequivocally opposed to abortion or meat eating, but if across the board we handled death and dying with the care and courage the way the three aforementioned physicians did/do, I would feel a lot better about the assisted suicide option. My worry and objection is about the potential for abuse or poorly made choices more than the actual act of ending of life.
I agree with the benefit of time to be working through the emotional pain if the individual can be kept out of pain. However, ones dignity can only be determined by the person afflicted. I have been an up-close active care taker in a few who were at end of life, who were not relieved of this suffering during palliative care, and came on board early. Sadly, even in this day and age all conditions are remedied pain free- until the final morphine days-which often offers a small window of pain free human connection. Its so personal. Being. caretaker is a labor of love, and hearty constitution, that few are equipped to handle. Situations vary - and its crucial to know this when choosing the person you make you your medical advocate and/or healthcare proxy.
I do not know personally, of any assisted suicides in my own sphere of experience-but I have heard verbal requests to end the suffering from some I knew. Its all very heartbreaking- but i do feel the individual should be able to choose when they say, “enough.” This is their destiny, even when we want them here to still love and care for.
I agree with you. Disability advocates have pointed out some important points about the current proposals, however, such as the difficulty of a physician determining how long someone has left to live, for example. There have also been some recent cases of mentally unwell but otherwise healthy people receiving assisted suicide. For me, the examples you give are clearly within the “this makes sense and can be the compassionate choice” end of the spectrum.
Thank you for sharing your thoughts and experiences!
Thanks. It becomes even more complicated when its a child/ teenager who os a minor. I lived through that horror. what are the current proposed rights in these cases today- can they become emancipated minors in order to decide?
Susan, I've just discovered your substack. One of my closest friends (she's actually my children's godmother) is a pediatrician to medically complex children at our children's hospital. What you went through is certainly among the hardest human experiences imaginable. Thank you for sharing Laura with us.
Thank you for your support. Laura passed at 14 yrs of age at hospice in home. I hope the posts will be helpful to others. The end of life chapters will be posted at some point. Difficult to write, and even more to share, since I know it will be hard to read.
I have a 14 year old son. What you all experienced is devastating (understatement of the millennium). I'm certain the posts will be helpful to others. As I said in my main post, it's important for us to do hard things, and that includes listening to stories of loss. It's essential to being a better human.
I meant to comment on your last post, because it was very thoughtful. I appreciate your thoughts and your writing and I agree that every life has potential, worth, and value. I do however support personal autonomy and choice in the matter of ending one's own life, or, in the case of a fetus, the mother making that decision. I might not agree with it but I support it and I don't judge it. I just don't know what someone else is going through, I don't know their pain, I don't know their circumstances. And so if someone wants to end their life, particularly because of incredible pain and suffering, then I think they could have the assistance. In terms of pregnancy termination, my thoughts are with the health and safety of the mother, and desperation feeds unsafe abortions. Do we want to prevent unwanted pregnancies happening in the first place through education and birth control? Of course! But things happen. Anyway, in terms of assisted suicide, I have seen people "on the way out" who absolutely wished they had that option, and I will support their choices. I don't expect us to agree on this but I really appreciate your writing about it.
I completely understand this. In fact, I do support legal abortion and assisted suicide for just the reasons you’ve specified. I want the world to know you can feel the way I do and still support other people’s right to it! And these conversations are so important so people can make truly *informed* decisions.
"Oh man, I'm really hungover, let me read something light. Hey, Erin has a new piece!"
Damn, I think this is my most difficult position to figure out because I see so many sides of it. I look forward to your death penalty one because I have much clearer views. I think you swayed me on this but honestly a well written argument for the other side would sway me in that direction.
I could write a well-written argument for the other side, too. I can easily see how someone in their final weeks could reasonably choose to go out quietly on their own terms, without all the anxious watching and waiting for the family. That is reasonable to me. I wouldn't want someone to make that decision because they think being disabled/debilitated makes life not worth living, or that they'd be a burden. That's the kind of burden that's worth bearing.
Winnebago Man: "I don't want anymore bullshit, anytime during the day, from anyone -- that includes me!"
Relatable and then some! I'd never seen this fella, but you're right -- he's hilarious!
I don't think I'm in quite the same place on assisted suicide. Even so, you've clearly thought deeply and compassionately about it, and I respect your reasoning. It's given me food for thought, certainly. That's all I really hope for in relation to these things. I don't necessarily need agreement on a topic, just real engagement. Your take has gravity and sincerity, and I wish we had more of that right now, on this and so much more. Thanks for writing it.
(Also, sorry for not writing more of my own thoughts on it. I just don't have the ability to do the topic justice right now, and it's not one I'd want to give short shrift.)
Moral certainty is a dime-a-dozen these days -- this is way more interesting. I love thinking about hard moral questions, and I always find it edifying to see others wrestle with them too, because there's usually something they see in a way I hadn't. I think JS Mills was quite right on that score -- even if I don't change my mind, it still enriches my thinking. I only have my own life experiences to draw from, and others have theirs. As egregiously cliche as it may be, I really do believe we all have something to offer each other.
Thank you for this post, Erin. As you probably remember, my impulse is to be a strong supporter of the right to assisted suicide, but you have given me a lot to think about.
I agree that one of the dangers of assisted suicide is that it is too easy for aggrieved or burdened families to bring emotional pressure to bear, either overtly or subtly, that might make the person suffering from a disability or dementia feel that they should choose suicide. And you are right that a lot of the issue would disappear if we only had appropriately robust palliative care and home health aides. I have read (in The Inevitable, by Katie Englehart--highly recommended!) that the hurdle for nearly everyone is incontinence. People can't bear to think about their loved ones having to change their diapers or clean them after a bowel accident. If there were adequately-paid nursing care to handle this, how many people would still want assisted suicide?
One final issue: both my grandparents had dementia, and it made them anxious and aggressive. My grandmother was really cruel to my mom for a few years, before her dementia advanced to the point where she couldn't speak. After watching what my mom went through, I decided that I never wanted to burden my children with the same duty, and that if I started to show signs of dementia, I would choose suicide. But your essay is making me rethink this decision. Maybe I am selling my kids short, and maybe they would rise to the occasion and possibly (eventually) even take pride in how they handled it. I don't know.
Anyway, I always appreciate a well-argued case for the other side. Who knows? You may cause me to change my mind.
Thank you for this kind and thoughtful response (as always!). The dementia one is really difficult because the person that individual was very often goes away. Sometimes the person is left gentle and kind, other times they become mean and combative. It really sucks. I think if something like assisted suicide were to be chosen (just like with abortion) it should be eyes wide open about the reasons.
Came here because of Freddie's post linking to your great piece on abortion!
On both topics, my perspective is coloured by the Canadian legal environment and how we see ourselves in comparison with the U.S.
I largely agree with you on the personhood of a fetus, and feel somewhat personally uncomfortable about abortion. Yet the many horrible things that can happen to your body due to pregnancy and labour also makes me uncomfortable, and so in the balance of things, I think the mother's bodily autonomy trumps the fetus' right to life, even if she did have sex knowing procreation was possible.
Eventually there comes a point at which you've gone so far that you've gone through most of the pregnancy anyway, and if you abort, you're essentially giving birth to the dead fetus, in which case it seems quite cruel and pointless to do an "elective" abortion. But even then, I'm more in favour of the Canadian approach of "not legal/illegal, but just leaving it up to the mother, doctor, and the medical guidelines" rather than "illegal except for saving the life of the mother." While somewhat less democratic to leave the guidelines in the hands of the provincial medical associations, putting individual medical decisions in the hands of judges to decide whether the woman's life was actually in danger seems worse.
With MAiD, my view is also shaped by Canada's increasingly permissive laws. Previously I would have considered myself saddened by MAiD but supportive of ones bodily autonomy nonetheless. But last year, our laws were changed so that you can access it if you have a grevious disability (which by next year will include mental illness! And maybe some talk of allowing it for minors!) but aren't immenently dying.
This has resulted in a lot of disabled Canadians talking about new pressures from their medical teams to consider MAiD -- both implicit and sometimes explicit. It's especially egregious coming from those relying on our terrible disability welfare program (ODSP in Ontario), which keeps people in abject poverty. I hear lots of stories of people who are absolutely hopeless their financial conditions will ever get better, and so are thinking of MAiD on those grounds. That the government would rather kill you than give you food to eat is just appalling.
So I guess in my own Grand Theory, I support bodily autonomy, but with the caveat that if the government is going to supply and pay for the doctors to end your or your fetus's life, they also have a positive moral responsibility to, as much as possible, provide resources to people to make sure you're not choosing death because you simply can't afford life.
I think your final thought is very much in line with my own thoughts. With regard to abortion, I really don’t believe women are going to choose later abortion in droves, because it is arduous and in some cases very similar to giving birth. But the recent/upcoming MAID changes are really upsetting to me, for all the reasons you’ve outlined. In this I’m firmly with the disability activists who press the public to consider how much anti-disability bias they’re actually harboring.
This is so helpful in challenging us to think through these issues more carefully, thank you. Not to mention, if a miserable bastard like Winnebago Man found a good reason to stay alive, maybe that means something? Although he seems to get a certain amount of pleasure out of his misery (love the way that man enunciates).
As I said last time, examining these four types of dilemmas, which are otherwise so different, in terms of the common ethical thread and the complex feelings this brings up, seems like a totally valuable exercise whether or not you ever come up with your unified ethic of life. I'm recalling that this particular question of assisted suicide is the one that originally inspired you to do the whole series, so maybe that's significant. It does feel tougher to dismiss than the abortion debate, where (at least for me) the issue of legality, and implications of over-legislating as well as the larger social context, overshadows any lingering discomfort about the ethics. Whereas, it's hard to make suicide into an abstraction, let alone facilitating someone else's. And I would definitely be more concerned about the potential for abusing/trivializing assisted suicide, than abusing abortion. Do you know the philosopher Joel Michael Reynolds? He's written some powerful stuff about the ableism issues you allude to, including a memoir The Life Worth Living: https://joelreynolds.me/
I have always supported the right to choose about one's own death, and the value of having a system in place like MAID to facilitate this in a systematic and accountable way, but what you discuss should at least give pause no matter where we land. It's interesting - just last spring I TA'ed an undergraduate course titled Death and Dying that devoted an entire module to MAID and assisted dying both as policy and lived experience, and I graded a large number of essays on this question. The professor was excellent and the course designed in a way to provoke a lot of critical thinking, so the students' reflections on all of this were generally very good. But I was struck by how few of them challenged MAID as an acceptable policy; there definitely seemed to be a bias in the course (deserved or not) toward emphasizing its humane and progressive features, even as the ethical dilemmas were acknowledged.
Thanks for the recommendation; I wasn’t aware of Reynolds. I was going to say believe it or not that kind of thing is right up my alley, but I’m sure you’re not surprised considering the series I’m writing 😂
I’ve found the work and memoirs of Paul Kalanithi (When Breath Becomes Air), Atul Gawande (Being Mortal), and Dr. BJ Miller (a hospice and palliative care provider) to be moving and thought provoking. I’m not unequivocally opposed to assisted suicide, just like I’m not unequivocally opposed to abortion or meat eating, but if across the board we handled death and dying with the care and courage the way the three aforementioned physicians did/do, I would feel a lot better about the assisted suicide option. My worry and objection is about the potential for abuse or poorly made choices more than the actual act of ending of life.
I agree with the benefit of time to be working through the emotional pain if the individual can be kept out of pain. However, ones dignity can only be determined by the person afflicted. I have been an up-close active care taker in a few who were at end of life, who were not relieved of this suffering during palliative care, and came on board early. Sadly, even in this day and age all conditions are remedied pain free- until the final morphine days-which often offers a small window of pain free human connection. Its so personal. Being. caretaker is a labor of love, and hearty constitution, that few are equipped to handle. Situations vary - and its crucial to know this when choosing the person you make you your medical advocate and/or healthcare proxy.
I do not know personally, of any assisted suicides in my own sphere of experience-but I have heard verbal requests to end the suffering from some I knew. Its all very heartbreaking- but i do feel the individual should be able to choose when they say, “enough.” This is their destiny, even when we want them here to still love and care for.
I agree with you. Disability advocates have pointed out some important points about the current proposals, however, such as the difficulty of a physician determining how long someone has left to live, for example. There have also been some recent cases of mentally unwell but otherwise healthy people receiving assisted suicide. For me, the examples you give are clearly within the “this makes sense and can be the compassionate choice” end of the spectrum.
Thank you for sharing your thoughts and experiences!
Thanks. It becomes even more complicated when its a child/ teenager who os a minor. I lived through that horror. what are the current proposed rights in these cases today- can they become emancipated minors in order to decide?
That’s a great question and I don’t know.
I might research this. Thanks for bringing this important issue to light.
Susan, I've just discovered your substack. One of my closest friends (she's actually my children's godmother) is a pediatrician to medically complex children at our children's hospital. What you went through is certainly among the hardest human experiences imaginable. Thank you for sharing Laura with us.
Thank you for your support. Laura passed at 14 yrs of age at hospice in home. I hope the posts will be helpful to others. The end of life chapters will be posted at some point. Difficult to write, and even more to share, since I know it will be hard to read.
I have a 14 year old son. What you all experienced is devastating (understatement of the millennium). I'm certain the posts will be helpful to others. As I said in my main post, it's important for us to do hard things, and that includes listening to stories of loss. It's essential to being a better human.
🙏♥️
I meant to comment on your last post, because it was very thoughtful. I appreciate your thoughts and your writing and I agree that every life has potential, worth, and value. I do however support personal autonomy and choice in the matter of ending one's own life, or, in the case of a fetus, the mother making that decision. I might not agree with it but I support it and I don't judge it. I just don't know what someone else is going through, I don't know their pain, I don't know their circumstances. And so if someone wants to end their life, particularly because of incredible pain and suffering, then I think they could have the assistance. In terms of pregnancy termination, my thoughts are with the health and safety of the mother, and desperation feeds unsafe abortions. Do we want to prevent unwanted pregnancies happening in the first place through education and birth control? Of course! But things happen. Anyway, in terms of assisted suicide, I have seen people "on the way out" who absolutely wished they had that option, and I will support their choices. I don't expect us to agree on this but I really appreciate your writing about it.
I completely understand this. In fact, I do support legal abortion and assisted suicide for just the reasons you’ve specified. I want the world to know you can feel the way I do and still support other people’s right to it! And these conversations are so important so people can make truly *informed* decisions.
Persuasive piece.
And for me the part that was most striking was what you wrote about the dignity of the dying being cared for.
"Oh man, I'm really hungover, let me read something light. Hey, Erin has a new piece!"
Damn, I think this is my most difficult position to figure out because I see so many sides of it. I look forward to your death penalty one because I have much clearer views. I think you swayed me on this but honestly a well written argument for the other side would sway me in that direction.
I could write a well-written argument for the other side, too. I can easily see how someone in their final weeks could reasonably choose to go out quietly on their own terms, without all the anxious watching and waiting for the family. That is reasonable to me. I wouldn't want someone to make that decision because they think being disabled/debilitated makes life not worth living, or that they'd be a burden. That's the kind of burden that's worth bearing.
Winnebago Man: "I don't want anymore bullshit, anytime during the day, from anyone -- that includes me!"
Relatable and then some! I'd never seen this fella, but you're right -- he's hilarious!
I don't think I'm in quite the same place on assisted suicide. Even so, you've clearly thought deeply and compassionately about it, and I respect your reasoning. It's given me food for thought, certainly. That's all I really hope for in relation to these things. I don't necessarily need agreement on a topic, just real engagement. Your take has gravity and sincerity, and I wish we had more of that right now, on this and so much more. Thanks for writing it.
(Also, sorry for not writing more of my own thoughts on it. I just don't have the ability to do the topic justice right now, and it's not one I'd want to give short shrift.)
I really don’t think it’s black and white, which is why I’ve been writing through my thoughts here. I’m glad you’re finding it interesting!
Moral certainty is a dime-a-dozen these days -- this is way more interesting. I love thinking about hard moral questions, and I always find it edifying to see others wrestle with them too, because there's usually something they see in a way I hadn't. I think JS Mills was quite right on that score -- even if I don't change my mind, it still enriches my thinking. I only have my own life experiences to draw from, and others have theirs. As egregiously cliche as it may be, I really do believe we all have something to offer each other.
I agree about assisted suicide. Omg Winnebago man though! He stressed me out hahaha
Very well written and thoughtful! I don't really have a ton of disagreements, compared to your abortion post.
So on this issue, you have the correct beliefs, is what I hear you saying. ;)
Absolutely! :)