Autonomy is a binary. We either "own" everything from the skin in, or we don't. Nibbling away at individual autonomy is the really dangerous slippery slope. Doctors and politicians and religious staffers are the last folks you want policing the boundaries of your autonomy.
I think the tricky part here (and that's my reading of the autonomy as ideal approach, which may be wrong) is that the extent to which we can exercise that autonomy is context-dependent. I wholeheartedly agree not to let politicians et al get their sticky fingers on it!
For me, "context-dependent" means conditional which translates as "depends on". That's the beginning of the slow nibbling away at autonomy, usually by other people and their interests. I would agree to age limits of course, but little else.
In the context (sorry, couldn't resist) of this post, I think I agree. That's a very noncommittal response, I know. I haven't quite figured out how certain conditions that, for example, affect impulse control or come with hallucinations factor in. Autonomy is paramount, yes, but I don't know to which extent some of these affect decision making ability. (I'm mainly thinking along these lines: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9197585/)
Yes, psychosis affecting competency is an obvious concern. But if you bring in the shrinks (and I am one!), you will soon hear things like "Well, they're depressed so not competent to make the decision. Need to put them on antidepressants and review in 3 months". As I said, it's a slippery slope.
Completely agree. I think (but you're the expert) that it's actually restoring the sense of autonomy in these cases that is important. Mindlessly prescribing drugs is the opposite of that. In some cases, I'm sure drugs help, but giving people ownership of their recovery/therapeutic journey/life is the first step toward improvement.
England will probably pass a law allowing assisted dying in the near future. If I am lucky, it will be passed it in time for me. I will almost certainly not choose it but I will be very glad to have the choice. I think lots of people like me will find it easier to face the end knowing that they have a choice — even if, ultimately, they don't choose it for themselves.
I think the law should be conservative though. Oregon restricts aid-in-dying to folks with a six-month terminal prognosis and they must be mentally competent and able to administer it themselves. I think that last bit is too onerous — requiring the patient to be competent to administer it themselves might hurry them up so they can do it while they still can. Better to let them get the help they need if they have requested it in advance. Other than that, I think Oregon has a good compromise between restricting access and making it available to the people who need it.
I think a more liberal regime creates a whole pile of potential problems and a whole lot of potential stress both for the patients who have had enough and for family members and even doctors who are involved with the process. “I am dying in a lot of pain in a few months. I’ve had enough.” Who could argue against that? Less clear-cut situations create too much anguish and distress.
Maybe diseases with serious mental decline like Parkinson’s disease or Alzheimer's could be considered but making aid-in-dying available to patients with other mental conditions or anything less than a terminal condition creates too many legal issues and too much stress for the families who are caught up in the process. If it’s less black and white than a terminal condition it will tug a lot of sufferers across a line that they wouldn't otherwise cross.
Even without legal permission for assisted dying, suicide is always an option whatever the law says. It’s abhorrent how family and friends and other people who might help are held accountable and subject to prosecution. In my country, you can be prosecuted for driving your dying wife to Switzerland. That’s appalling and the law should be more sympathetic but I don't think requiring the medical profession to deal with everyone who has had enough is the right solution either.
Short version: assisted dying should be available to patients with a terminal prognosis and friends and family should not be prosecuted for helping someone with a do-it-yourself ending. Other than, assisted dying laws should remain conservative.
I think I mostly agree, perhaps with an ever-so-slightly more lenient approach for severe mental suffering. But, as you point out, that leniency becomes dangerous if it's 'making things too easy' in this context and, honestly, I don't have a good answer to that.
I appreciate you exploring this topic, I know it's dark for some but SPOILER ALERT: we're all going to die. I have Parkinson's disease and I am making arrangements to have voluntary assistance in dying (most likely in Switzerland, but the state of Vermont has now changed their laws so that one does not need to be terminally ill) when I feel like the quality of my life is not worth fighting for. I am managing my illness for now, but I feel better knowing that should I lose my ability to take care of myself (physically/mentally), that I have a plan in place that will give my loved ones some closure...that my death will be MY decision.
And I appreciate your comment, Eileen. It takes a good serving of equanimity to face these things as you do and shape your life (even the bits of it we don't always like to talk about) on your terms.
Bit of a silly point bur mental illness can take away our ability to take decisions so to say we need to respect agency and autonomy is complicated when illness may remove insight, utterly distort our self and world view and stop is realising that treatment can and does work. That is why compulsory treatment even though it is traumatic can be justified. So when I say I am a devil and need my blood drained from me I am still more or less grateful that people stop that happening. Most days I want to die but everyday I also wake with a family I adore... I would try instead to see if a person is making the authentic decisions of their own self. Often we aren't and often it changes over time
Not a silly point at all, Graham; a very valid one! Mental illness especially makes it challenging to find that balance in respecting a person's autonomy while acknowledging that said autonomy may be compromised.
Really stirring post, Gunnar. And the topic is one that I have always struggled to formulate an opinion on.
I really appreciated the part where the paper acknowledged “Euthanasia should never be seen (or used) as a means of resolving societal failures.” However, my next question—and I mean this in earnest—is “Well then, what should?” Because the pain induced by societal failures is just as real, and those failures seem less likely to be addressed quickly enough and at a large enough scale to provide relief.
It also makes me wonder about how different cultures relate to death, and the outsized role that would play in these decisions. Gosh, this is really quite a subject, and an important one to discuss! Thanks for taking it on.
I think the fear is that, if euthanasia becomes more acceptable to remedy societal failures (to put it overly simplistically), there is less 'motivation' to actually deal with those issues. But, as you point out, for an individual, right now in the throes of despair, none of that matters.
Thank you for this discussion of a highly emotional issue, that blurs the lines between morality and free will. I live in Canada where the issue has really caused public schism. I don’t believe people with mental illness should make that decision, and I certainly don’t believe governments should be involved with euthanasia, given the history of the 1930’s fascism. Maybe we’re just not ready for this?
Yes, Canada is one of the more progressive countries in this matter. I agree with you that the crux here is the power of decision. Government, definitely bad idea. The individual? To some extent, of course, but that's where mental illness muddies the waters...
I would even push the idea of 'voluntary euthanasisa' to its limits. We are human beings and in my view on life in general we are all equipped with a brain (some a big large intellectual brain, others small and inefficiënt , aka Trump). As a human i have the right to live (this is no topic about abortion , that's another discussion) but I also have acquired the right to die if I would want that. In other words, when I make the choice to die I have the right to do so, regarding what other people or the whole word thinks of that. Do I use poison or throw myself before a bus...not important. This is not a big theoretical philosphy , it's just a part of what we call 'free will' (whether deterministic or non-deterministic) and 'freedom of thought'. Im well aware that conservative or religious people will have a stroke while reading this, but they dont have 'free will' or 'freedom of thought'..their god(s) decide all that.
The difficult issue here is that it's a decision you can't come back from. Sometimes, we make decisions that aren't the best for ourselves (we both know I'm a great example of this ;).)
I also think about the challenging position it puts the doctor in. Even when terminal illness is involved, it’s still a huge responsibility. I accompanied some of our doctors when they undertook their first practitioner administered assisted dying visits, and it was hugely emotional for them. I can’t imagine how hard it would be to administer to someone physically well.
Wow- this is thought provoking! I’ve got to think on this one for a bit. My initial gut reaction is relief that this isn’t allowed in Australia - I would’ve had a very difficult time providing the drug to someone without a terminal illness, partly because our mental health services are so lacking. However, I remember feeling confronted about the idea of refractory depression and right to suicide when I read A Little Life - so I am open to the idea that there may be some situations where it reduces suffering and remains a harm minimisation strategy. I’m not sure though- I guess it’s about the nuance difference between euthanasia and assisted dying. Yeah, gotta think about this one. I’ll be interested to see what other people think.
It's in the nuances here, that's for sure. I think it should be basic right in theory, but in practice there are so many intangibles (when is mental suffering unbearable? Does it stay unbearable? Who should be involved in the decision?...) that there is the understandable worry that it might become 'too easy'.
Autonomy is a binary. We either "own" everything from the skin in, or we don't. Nibbling away at individual autonomy is the really dangerous slippery slope. Doctors and politicians and religious staffers are the last folks you want policing the boundaries of your autonomy.
I think the tricky part here (and that's my reading of the autonomy as ideal approach, which may be wrong) is that the extent to which we can exercise that autonomy is context-dependent. I wholeheartedly agree not to let politicians et al get their sticky fingers on it!
For me, "context-dependent" means conditional which translates as "depends on". That's the beginning of the slow nibbling away at autonomy, usually by other people and their interests. I would agree to age limits of course, but little else.
In the context (sorry, couldn't resist) of this post, I think I agree. That's a very noncommittal response, I know. I haven't quite figured out how certain conditions that, for example, affect impulse control or come with hallucinations factor in. Autonomy is paramount, yes, but I don't know to which extent some of these affect decision making ability. (I'm mainly thinking along these lines: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9197585/)
Yes, psychosis affecting competency is an obvious concern. But if you bring in the shrinks (and I am one!), you will soon hear things like "Well, they're depressed so not competent to make the decision. Need to put them on antidepressants and review in 3 months". As I said, it's a slippery slope.
Completely agree. I think (but you're the expert) that it's actually restoring the sense of autonomy in these cases that is important. Mindlessly prescribing drugs is the opposite of that. In some cases, I'm sure drugs help, but giving people ownership of their recovery/therapeutic journey/life is the first step toward improvement.
Thanks for a good chat Gunnar! One of the things I really like about the Substack community.
I've given this heaps of thought in recent months and I wrote down a few thoughts of my own here:
https://raggedclown.substack.com/p/can-we-talk-about-assisted-dying
England will probably pass a law allowing assisted dying in the near future. If I am lucky, it will be passed it in time for me. I will almost certainly not choose it but I will be very glad to have the choice. I think lots of people like me will find it easier to face the end knowing that they have a choice — even if, ultimately, they don't choose it for themselves.
I think the law should be conservative though. Oregon restricts aid-in-dying to folks with a six-month terminal prognosis and they must be mentally competent and able to administer it themselves. I think that last bit is too onerous — requiring the patient to be competent to administer it themselves might hurry them up so they can do it while they still can. Better to let them get the help they need if they have requested it in advance. Other than that, I think Oregon has a good compromise between restricting access and making it available to the people who need it.
I think a more liberal regime creates a whole pile of potential problems and a whole lot of potential stress both for the patients who have had enough and for family members and even doctors who are involved with the process. “I am dying in a lot of pain in a few months. I’ve had enough.” Who could argue against that? Less clear-cut situations create too much anguish and distress.
Maybe diseases with serious mental decline like Parkinson’s disease or Alzheimer's could be considered but making aid-in-dying available to patients with other mental conditions or anything less than a terminal condition creates too many legal issues and too much stress for the families who are caught up in the process. If it’s less black and white than a terminal condition it will tug a lot of sufferers across a line that they wouldn't otherwise cross.
Even without legal permission for assisted dying, suicide is always an option whatever the law says. It’s abhorrent how family and friends and other people who might help are held accountable and subject to prosecution. In my country, you can be prosecuted for driving your dying wife to Switzerland. That’s appalling and the law should be more sympathetic but I don't think requiring the medical profession to deal with everyone who has had enough is the right solution either.
Short version: assisted dying should be available to patients with a terminal prognosis and friends and family should not be prosecuted for helping someone with a do-it-yourself ending. Other than, assisted dying laws should remain conservative.
Thanks for that comment, Ragged!
I think I mostly agree, perhaps with an ever-so-slightly more lenient approach for severe mental suffering. But, as you point out, that leniency becomes dangerous if it's 'making things too easy' in this context and, honestly, I don't have a good answer to that.
Sent to me by the ever amazing Disabled Ginger (https://substack.com/@broadwaybabyto)
https://vimeo.com/970075397
Love it!
I appreciate you exploring this topic, I know it's dark for some but SPOILER ALERT: we're all going to die. I have Parkinson's disease and I am making arrangements to have voluntary assistance in dying (most likely in Switzerland, but the state of Vermont has now changed their laws so that one does not need to be terminally ill) when I feel like the quality of my life is not worth fighting for. I am managing my illness for now, but I feel better knowing that should I lose my ability to take care of myself (physically/mentally), that I have a plan in place that will give my loved ones some closure...that my death will be MY decision.
And I appreciate your comment, Eileen. It takes a good serving of equanimity to face these things as you do and shape your life (even the bits of it we don't always like to talk about) on your terms.
Bit of a silly point bur mental illness can take away our ability to take decisions so to say we need to respect agency and autonomy is complicated when illness may remove insight, utterly distort our self and world view and stop is realising that treatment can and does work. That is why compulsory treatment even though it is traumatic can be justified. So when I say I am a devil and need my blood drained from me I am still more or less grateful that people stop that happening. Most days I want to die but everyday I also wake with a family I adore... I would try instead to see if a person is making the authentic decisions of their own self. Often we aren't and often it changes over time
Not a silly point at all, Graham; a very valid one! Mental illness especially makes it challenging to find that balance in respecting a person's autonomy while acknowledging that said autonomy may be compromised.
My life, my choice, end of discussion! 😁
Agreed !
Agreed. (But can you trust yourself? 😉)
I certainly trust myself more than the state. Presumably, loved ones — if any — would be part of the decision.
Oh yeah, the government should keep its sticky fingers out of it for sure. Whether or not I’d trust loved ones might depend on my life insurance.
(But yes, I think including loved ones should certainly be part of the process.)
Life insurance and your will! 😂
Really stirring post, Gunnar. And the topic is one that I have always struggled to formulate an opinion on.
I really appreciated the part where the paper acknowledged “Euthanasia should never be seen (or used) as a means of resolving societal failures.” However, my next question—and I mean this in earnest—is “Well then, what should?” Because the pain induced by societal failures is just as real, and those failures seem less likely to be addressed quickly enough and at a large enough scale to provide relief.
It also makes me wonder about how different cultures relate to death, and the outsized role that would play in these decisions. Gosh, this is really quite a subject, and an important one to discuss! Thanks for taking it on.
I think the fear is that, if euthanasia becomes more acceptable to remedy societal failures (to put it overly simplistically), there is less 'motivation' to actually deal with those issues. But, as you point out, for an individual, right now in the throes of despair, none of that matters.
It almost shows just how much we collectively value human life AND how much we really don’t, in the same stroke.
Beautifully put!
Thank you for this discussion of a highly emotional issue, that blurs the lines between morality and free will. I live in Canada where the issue has really caused public schism. I don’t believe people with mental illness should make that decision, and I certainly don’t believe governments should be involved with euthanasia, given the history of the 1930’s fascism. Maybe we’re just not ready for this?
Yes, Canada is one of the more progressive countries in this matter. I agree with you that the crux here is the power of decision. Government, definitely bad idea. The individual? To some extent, of course, but that's where mental illness muddies the waters...
I would even push the idea of 'voluntary euthanasisa' to its limits. We are human beings and in my view on life in general we are all equipped with a brain (some a big large intellectual brain, others small and inefficiënt , aka Trump). As a human i have the right to live (this is no topic about abortion , that's another discussion) but I also have acquired the right to die if I would want that. In other words, when I make the choice to die I have the right to do so, regarding what other people or the whole word thinks of that. Do I use poison or throw myself before a bus...not important. This is not a big theoretical philosphy , it's just a part of what we call 'free will' (whether deterministic or non-deterministic) and 'freedom of thought'. Im well aware that conservative or religious people will have a stroke while reading this, but they dont have 'free will' or 'freedom of thought'..their god(s) decide all that.
The difficult issue here is that it's a decision you can't come back from. Sometimes, we make decisions that aren't the best for ourselves (we both know I'm a great example of this ;).)
I also think about the challenging position it puts the doctor in. Even when terminal illness is involved, it’s still a huge responsibility. I accompanied some of our doctors when they undertook their first practitioner administered assisted dying visits, and it was hugely emotional for them. I can’t imagine how hard it would be to administer to someone physically well.
Absolutely. Here it’s a team of 3 who all need to sign off, but yeah, someone will have to take that final action, which can never be easy.
Wow- this is thought provoking! I’ve got to think on this one for a bit. My initial gut reaction is relief that this isn’t allowed in Australia - I would’ve had a very difficult time providing the drug to someone without a terminal illness, partly because our mental health services are so lacking. However, I remember feeling confronted about the idea of refractory depression and right to suicide when I read A Little Life - so I am open to the idea that there may be some situations where it reduces suffering and remains a harm minimisation strategy. I’m not sure though- I guess it’s about the nuance difference between euthanasia and assisted dying. Yeah, gotta think about this one. I’ll be interested to see what other people think.
Thanks, Lauren.
It's in the nuances here, that's for sure. I think it should be basic right in theory, but in practice there are so many intangibles (when is mental suffering unbearable? Does it stay unbearable? Who should be involved in the decision?...) that there is the understandable worry that it might become 'too easy'.