A wonderful article. Social services do not have the resources to provide thoughtful protection / care for vulnerable people as it is. The bill is - for the well reasoned and articulated reasons set out in your brilliant article - such a frightening development.
Yes but what if you yourself had a terminal diagnosis and were in pain that could not be assuaged and unable to carry on any of what makes life for you worthwhile? Would you wish an option to end your life, or would you prefer that the law compels you to carry on to the bitter end? There are caveats which you (and others) have raised. But now at age 74 I would wish to have the option available to me. Yes and perhaps even if I felt myself to be a burden on my family and the NHS.
Those options do exist…. I think the major concerns are, if it is offered by the state, where such legislation could lead; as you point out, palliative cat is often poorly managed; and the nexus of medical and social care, and the courts (which frequently become involved), currently functions inadequately (and has been “ratuonalised” in a way that exacerbates this). I’m afraid I still think (not feel/believe/ whatever) that this offers a v. poor lookout for a lot of people. Also, as Frances Gibb:s mother's experience makes clear, the way we see/experience a prospect in health (and perhaps relative) youth, isn't necessarily the ultimate experience.
You're a fit, healthy mountaineer, so it makes complete sense that you'd be horrified at the idea
(Btw, if this is filled with deranged typos, it's because my phone kept trying to insinuate the most horrendous stickers, smileys not omitted…).
Interesting and well argued article. Nonetheless, I'm glad I live in a country (Netherlands) where euthanasia is possible. I'm terrified by dementia and Alzheimer and, should I lose the only thing I have going on for myself – a pair of working neurons – I wouldn't want to live anymore. I wouldn't want to wear diapers and having people wipe my ass. I don't want anyone to die who doesn't want to, but please, do not force me to live, if every breath I take should become torture for me.
Quite. Was impressed by the documentary "Better off Dead" which challenged some of the assumptions of the Bill re: value of life while ill and disabled & included some rather chilling conversations with Canadian doctors involved in MAiD. Agree that palliative care is extremely important & should be improved (often so patchy), including with e.g. morphine, but the risks of this bill are too great and the idea of encouraging people to believe that life is not worth it is horrifying to me. Too many people who are elderly or sick already feel like burdens. Heartbreaking.
Yes, yes, and yes. The documentary sounds interesting (and salutary). Every time I get a comment on this essay, it's just such a relief to hear thoughtful, informed opinions; because, the way it's reported, one could easily think most people are just sleepwalking towards disaster…
This was such a well argued and nuanced piece, thanks for writing it.
Being from Spain the debate on euthanasia became a hot topic after the death of Ramon Sampedro, whose girlfriend helped him to die at his request following an accident that had left him quadriplegic. Shortly afterwards this story was turned into an excellent film by Alejandro Amenabar (The Sea Inside) which did relive the debate on euthanasia, illegal in Spain and opposed by many mostly on religious grounds given Spain is culturally a Catholic country.
The second year I lived in Italy a similar case was all over the media: this time a young woman, Eluana Englaro, who had spent 20 years in vegetative state with very little hope of recovery. Her parents tried for years to make the case for assisted death as she herself had expressed this wish should anything happen to her, but again being on a very religious country, this was never granted. Eluana passed eventually on 2009, months after her father had campaigned for the last time for her to be disconnected from the machines that kept her alive.
A couple of years after this event that shocked the country, an Italian acquaintance whose family was from Switzerland confessed rather casually that both his maternal grandparents had travelled back to Zurich from Italy (they were Swiss) to die at a clinic. The grandfather had been diagnosed with a terminal illness and was already close to 80 and didn't want to spend his last years seeing his physical and mental health deteriorate nor could stand being a burden to his family. So after informing his family of his decision, he decided to travel back to his home country where euthanasia wasn't legal but assisted suicide was, or at least there were places offering a service that complied with the law at the time. His wife decided to join him as she couldn't see the point of being alive after he was gone. I remember being quite shocked at how matter-of-factly this acquaintance told this story, as if it was the most natural thing in the world to do in the circumnstances. I guess for him it probably was as it had been openly discussed and accepted as the free choice of his grandparents.
All this to say that it is indeed a very delicate topic where individual lived experience plays a fundamental role as does freedom of choice, which should be the main guiding principle. If assisted dying becomes legal it should mean individuals have a choice when it comes to how they want to end their days, but it shouldn't become a default option to pressure them or get families/the system rid of people who are deemed no longer "useful" as otherwise we're only descending one step lower into utilitarianism. And I'm afraid you're very right in your theory that probaly a number of companies would emerge to provide these services on behalf of the NHS, which is very scary to think about.
You make some really interesting points; especially linked to the individual examples. I think in the UK (only nominally allied to a religion) the machines would have been switched off.
I find the couple really disturbing.
For me, the real issue is not with individual choice (which actually exists, just maybe not as some people imagine they want it, as a free service provided by the state); but where involving the state in that choice can lead. And I’m afraid it's impossible to see a scenario where pressure is not exerted on some people, especially the elderly (who are already vulnerable in the healthcare system around issues such as capacity).
Thanks v. much for reading and restacking, as I'd really like to see people talking more about what this means in real terms, rather than simply the emotive ones.
Your piece definitely made reflect on the role of the state, which previously I hadn't given much thought to in this debate and yet it's as important as the ethical considerations so thanks for helping me expand my viewpoint. I have goosebumps from remembering story about that elderly couple and like the first time I was told it, I'm still in two minds about it.
An interesting read. Thank you. My concerns are that the arguments in favour of assisted dying are often driven most fervently by the ‘worried well’ i.e. those who say ‘I would rather die/kill myself than live …’ with whatever scares them the most about illness/disability. In a referendum, these voices will always be the majority, as reflected in most media coverage of this topic. Even those who experience illness/disability as family/friends/carers are knowledgable only as far as their own experience allows and professionals - medical, social, legal - will have knowledge akin to that of a woman with no children who has a strong view on the process of giving birth. That is an understanding without feeling the pain. Others, such as businesses and government bodies, may be driven by many other factors that are not necessarily in the interest of those who will die as a consequence of this legislation. Most of these parties will not be prepared to change their views and I get that. I understand that. I supported assisted dying for much of my life.
However, over 25 years ago, I became chronically ill and, as a non-standing wheelchair user with a severe neurological illness, along with several instances of, as yet not-terminal cancer, my view is now very much more nuanced. I understand in a very personal way the psychological pressures brought to bear from illness, in and of itself, and others - friends, family, medical and social staff. I am not comfortable that any blanket legal rules are even possible to cover all the eventualities that all parties think and hope will somehow resolve this issue. I do think we must err on the side of protecting those with disabilities and illnesses whose lives are, by default, considered as too distressing to be lived by a majority who take it upon themselves to believe that is so even when there is clear evidence of good quality living by most ill & disabled people. I abhor the arguments that illness and disability are too ‘costly’ to sustain in a wealthy, democratic and socialist country. Illness and disability are part of the human condition and, in that, very normal and society should not be protected or sanitised by legal precedent that says the state will allow either of these as cause for a person to kill themselves.
Having said that, I am fully supportive of a strictly drawn law of exception that grants terminal patients a right to die as I believe grown adults of sound mind should be free, when close to death, to request any medication necessary to ease their final days. I think the numbers of those with a right to die are very much smaller than those in the minds of the assisted dying campaigners and should not cover anyone with an expectation of life outside of say 6-12 months.
I do remain conflicted about the slippery slope arguments pertaining to the narrower definition of right to die but I also cannot support even a small minority of people dying in agony, being refused medication to ease suffering through a period of, identifiable and inevitable, death.
Thank-you so much for such a considered, informed (I’m sorry that it also has to be personally informed) response. You make so many important points: “the worried well”; fear. (I think fear is a powerful driver in many people's reactions - the terror of being unable: to live freely, decide for themselves etc). Your point about a probable outcome to a referendum is interesting ( and - depressingly - highly likely); although I don't see democratically an alternative, now this dangerous process has been started. Marginally better than this rushed out bill…. Also agree, v. strongly, that money shouldn't be a factor in people's survival, quality of life, quality of care.
But the idea of the state offering medical executions (having abolished the death penalty) is deeply disturbing.
Why the same old inference that social workers are not experts or professionals and are responsible for a disproportionate level of error (presumably you are referring to the public headlines about children? However if you look at the improvement in rates of child mortality due to inflicted injury since the 70s you will find the UK now in the top 10% in the ‘west’ not in the bottom half we were 50 years ago. A system led by SWs who carry the responsibility and which if it was dealing with a disease would be lauded. If you wanted to look at professional errors you could just stick with Doctors as born out partly by the rise in negligence claims.
A wonderful article. Social services do not have the resources to provide thoughtful protection / care for vulnerable people as it is. The bill is - for the well reasoned and articulated reasons set out in your brilliant article - such a frightening development.
Thank-you so much for reading thoughtfully.
Yes but what if you yourself had a terminal diagnosis and were in pain that could not be assuaged and unable to carry on any of what makes life for you worthwhile? Would you wish an option to end your life, or would you prefer that the law compels you to carry on to the bitter end? There are caveats which you (and others) have raised. But now at age 74 I would wish to have the option available to me. Yes and perhaps even if I felt myself to be a burden on my family and the NHS.
Those options do exist…. I think the major concerns are, if it is offered by the state, where such legislation could lead; as you point out, palliative cat is often poorly managed; and the nexus of medical and social care, and the courts (which frequently become involved), currently functions inadequately (and has been “ratuonalised” in a way that exacerbates this). I’m afraid I still think (not feel/believe/ whatever) that this offers a v. poor lookout for a lot of people. Also, as Frances Gibb:s mother's experience makes clear, the way we see/experience a prospect in health (and perhaps relative) youth, isn't necessarily the ultimate experience.
You're a fit, healthy mountaineer, so it makes complete sense that you'd be horrified at the idea
(Btw, if this is filled with deranged typos, it's because my phone kept trying to insinuate the most horrendous stickers, smileys not omitted…).
Interesting and well argued article. Nonetheless, I'm glad I live in a country (Netherlands) where euthanasia is possible. I'm terrified by dementia and Alzheimer and, should I lose the only thing I have going on for myself – a pair of working neurons – I wouldn't want to live anymore. I wouldn't want to wear diapers and having people wipe my ass. I don't want anyone to die who doesn't want to, but please, do not force me to live, if every breath I take should become torture for me.
Quite. Was impressed by the documentary "Better off Dead" which challenged some of the assumptions of the Bill re: value of life while ill and disabled & included some rather chilling conversations with Canadian doctors involved in MAiD. Agree that palliative care is extremely important & should be improved (often so patchy), including with e.g. morphine, but the risks of this bill are too great and the idea of encouraging people to believe that life is not worth it is horrifying to me. Too many people who are elderly or sick already feel like burdens. Heartbreaking.
Yes, yes, and yes. The documentary sounds interesting (and salutary). Every time I get a comment on this essay, it's just such a relief to hear thoughtful, informed opinions; because, the way it's reported, one could easily think most people are just sleepwalking towards disaster…
This was such a well argued and nuanced piece, thanks for writing it.
Being from Spain the debate on euthanasia became a hot topic after the death of Ramon Sampedro, whose girlfriend helped him to die at his request following an accident that had left him quadriplegic. Shortly afterwards this story was turned into an excellent film by Alejandro Amenabar (The Sea Inside) which did relive the debate on euthanasia, illegal in Spain and opposed by many mostly on religious grounds given Spain is culturally a Catholic country.
The second year I lived in Italy a similar case was all over the media: this time a young woman, Eluana Englaro, who had spent 20 years in vegetative state with very little hope of recovery. Her parents tried for years to make the case for assisted death as she herself had expressed this wish should anything happen to her, but again being on a very religious country, this was never granted. Eluana passed eventually on 2009, months after her father had campaigned for the last time for her to be disconnected from the machines that kept her alive.
A couple of years after this event that shocked the country, an Italian acquaintance whose family was from Switzerland confessed rather casually that both his maternal grandparents had travelled back to Zurich from Italy (they were Swiss) to die at a clinic. The grandfather had been diagnosed with a terminal illness and was already close to 80 and didn't want to spend his last years seeing his physical and mental health deteriorate nor could stand being a burden to his family. So after informing his family of his decision, he decided to travel back to his home country where euthanasia wasn't legal but assisted suicide was, or at least there were places offering a service that complied with the law at the time. His wife decided to join him as she couldn't see the point of being alive after he was gone. I remember being quite shocked at how matter-of-factly this acquaintance told this story, as if it was the most natural thing in the world to do in the circumnstances. I guess for him it probably was as it had been openly discussed and accepted as the free choice of his grandparents.
All this to say that it is indeed a very delicate topic where individual lived experience plays a fundamental role as does freedom of choice, which should be the main guiding principle. If assisted dying becomes legal it should mean individuals have a choice when it comes to how they want to end their days, but it shouldn't become a default option to pressure them or get families/the system rid of people who are deemed no longer "useful" as otherwise we're only descending one step lower into utilitarianism. And I'm afraid you're very right in your theory that probaly a number of companies would emerge to provide these services on behalf of the NHS, which is very scary to think about.
You make some really interesting points; especially linked to the individual examples. I think in the UK (only nominally allied to a religion) the machines would have been switched off.
I find the couple really disturbing.
For me, the real issue is not with individual choice (which actually exists, just maybe not as some people imagine they want it, as a free service provided by the state); but where involving the state in that choice can lead. And I’m afraid it's impossible to see a scenario where pressure is not exerted on some people, especially the elderly (who are already vulnerable in the healthcare system around issues such as capacity).
Thanks v. much for reading and restacking, as I'd really like to see people talking more about what this means in real terms, rather than simply the emotive ones.
Your piece definitely made reflect on the role of the state, which previously I hadn't given much thought to in this debate and yet it's as important as the ethical considerations so thanks for helping me expand my viewpoint. I have goosebumps from remembering story about that elderly couple and like the first time I was told it, I'm still in two minds about it.
An interesting read. Thank you. My concerns are that the arguments in favour of assisted dying are often driven most fervently by the ‘worried well’ i.e. those who say ‘I would rather die/kill myself than live …’ with whatever scares them the most about illness/disability. In a referendum, these voices will always be the majority, as reflected in most media coverage of this topic. Even those who experience illness/disability as family/friends/carers are knowledgable only as far as their own experience allows and professionals - medical, social, legal - will have knowledge akin to that of a woman with no children who has a strong view on the process of giving birth. That is an understanding without feeling the pain. Others, such as businesses and government bodies, may be driven by many other factors that are not necessarily in the interest of those who will die as a consequence of this legislation. Most of these parties will not be prepared to change their views and I get that. I understand that. I supported assisted dying for much of my life.
However, over 25 years ago, I became chronically ill and, as a non-standing wheelchair user with a severe neurological illness, along with several instances of, as yet not-terminal cancer, my view is now very much more nuanced. I understand in a very personal way the psychological pressures brought to bear from illness, in and of itself, and others - friends, family, medical and social staff. I am not comfortable that any blanket legal rules are even possible to cover all the eventualities that all parties think and hope will somehow resolve this issue. I do think we must err on the side of protecting those with disabilities and illnesses whose lives are, by default, considered as too distressing to be lived by a majority who take it upon themselves to believe that is so even when there is clear evidence of good quality living by most ill & disabled people. I abhor the arguments that illness and disability are too ‘costly’ to sustain in a wealthy, democratic and socialist country. Illness and disability are part of the human condition and, in that, very normal and society should not be protected or sanitised by legal precedent that says the state will allow either of these as cause for a person to kill themselves.
Having said that, I am fully supportive of a strictly drawn law of exception that grants terminal patients a right to die as I believe grown adults of sound mind should be free, when close to death, to request any medication necessary to ease their final days. I think the numbers of those with a right to die are very much smaller than those in the minds of the assisted dying campaigners and should not cover anyone with an expectation of life outside of say 6-12 months.
I do remain conflicted about the slippery slope arguments pertaining to the narrower definition of right to die but I also cannot support even a small minority of people dying in agony, being refused medication to ease suffering through a period of, identifiable and inevitable, death.
Thank-you so much for such a considered, informed (I’m sorry that it also has to be personally informed) response. You make so many important points: “the worried well”; fear. (I think fear is a powerful driver in many people's reactions - the terror of being unable: to live freely, decide for themselves etc). Your point about a probable outcome to a referendum is interesting ( and - depressingly - highly likely); although I don't see democratically an alternative, now this dangerous process has been started. Marginally better than this rushed out bill…. Also agree, v. strongly, that money shouldn't be a factor in people's survival, quality of life, quality of care.
But the idea of the state offering medical executions (having abolished the death penalty) is deeply disturbing.
That’s my biggest fear too.
Why the same old inference that social workers are not experts or professionals and are responsible for a disproportionate level of error (presumably you are referring to the public headlines about children? However if you look at the improvement in rates of child mortality due to inflicted injury since the 70s you will find the UK now in the top 10% in the ‘west’ not in the bottom half we were 50 years ago. A system led by SWs who carry the responsibility and which if it was dealing with a disease would be lauded. If you wanted to look at professional errors you could just stick with Doctors as born out partly by the rise in negligence claims.
Stephen Hawkins is the lazy exception that proves the rule on MND. Most die within two to five years. My husband… 18 months .
I’m sorry to hear about your husband.
Thank you