On Wednesday, I quietly sat holding my Nana's hand whilst she slipped away. I thought about my own mortality, would I want the prolonged death that she had for myself and the answer is definitely no. So I need to make provisions so that it doesn't happen. For me the legislation doesn't go far enough, which probably means it's a good compromise, neither side is happy.
Thanks Ian - that's very balanced and informative...
I'm for this, but for me it's the start of what's needed - what's important for me is living instead of existing - in the last couple of years of my Mum's live I saw a lot of people around her - in care etc. - who were existing, not living. Luckily for her she lived until just about the end.
For me - when I can't do the things I want to - experience nature, art, music - my quality of life is gone, and life turns into existence.
I want to be able to do something about that, when it happens, and that's what my LPA says.
There are a couple of points that aren’t getting much space in the debate.
A huge number of people who receive end-of-life care are already subject to what can be loosely described as medicated euthanasia through the administration of strong doses of powerful painkillers in order to ensure a less painful death. Dying hurts, in almost every case.
The other and perhaps more salient point in all of this is that this is a new parliament with a huge number of new and inexperienced legislators.
I admire the willingness to proceed but, whatever your view of the issue, surely it would be a more satisfactory outcome after MPs were able to feel their feet underneath them and get a handle of the business of making big decisions such as this.
There’s a very real chance that many will play safe or make a decision like the rest of us, based on our own principles, whereas the implementation of such policy as assisted dying will need to be determined by the professional, legal and ethical parameters required to make it work for those for whom it is deemed appropriate and necessary.
It is incorrect that dying hurts in almost every case. In many cases it is a peaceful slipping away without the even the need for pain meds. Neither do pain meds kill people when used competently. People often need increased doses as tolerance increases and disease advances. So people often die (naturally) at as their dose increases. This association not causation, but it gives rise to the myth which is widely believed, understandably. I agree that pre Shipman there was probably some lax and unethical practice.
My mother's view is that there's a difference between being alive and not being dead. Just because you don't have a terminal illness with less than 6 months to live doesn't mean you have a quality of life that you want to exist through for an indeterminate period. My parents are in their 90s. Many of their friends have passed away in the last 20 years - some suddenly, some with long declines. Some of their friends have spent years in care homes with dementia.
My father has almost died several times in the last 3 years from assorted infections caused by him being unable to walk. He also has malignant prostate cancer. But he's probably in a better physical state than he has been for a long time due to good regular food and someone making sure he's drinking enough. Another infection may kill him, or not. But as long as he's happy, I'm happy.
My mother has a degenerative lung conditions and severe osteoporosis, meaning that standing up and walking is difficult. She lives alone and only goes out occasionally, but has a beautiful view from her window. She makes the best of what she can do. But she absolutely does not want to end up bed bound, with no ability to control her life.
I will be more than sad when they each go, but I will be gutted if they suffer unnecessarily because there is no legal method to allow them to say they've had enough.
This is very balanced and informative. Like you I'm in favour of the law passing, and I don't see how (without a massive change) it could be used to "euthanase" anyone frail and elderly or with dementia. My father had a horrible degenerative illness (which I'm not going to name to avoid upsetting anyone who has or knows someone with it), and he was terrified of what his end days were going to be like. Very fortunately he didn't get to experience that - he fell and had a quick and peaceful death shortly afterwards, and even now (many years later) I still feel guilty to be more relieved than sad that he died when he did, as what was in store for him would have been unbearable. Things were different in the past with more discretion for medical staff to increase doses of medication to speed the end of life - I'm absolutely sure that this happened to one of my grandparents in the 1980s. (Presumably the Shipman case put a complete stop to anything like this.)
It's funny, I've lost count of how many people have told me they feel guilty for their relief in similar circumstances. It's just love, really. They don't want their loved ones to suffer. Thanks for writing this Penny.
Fundamentally a mature and evolving society within a democracy needs to respect an informed decision by an individual whilst the state maintains effective guardrails to avoid abuse. The current thoughtful proposal narrowly constrains such decisions to terminally ill individuals. It’s the minimum we should support.
Yes... it is an over-cautious minimum... which is why, as someone who has strongly supported assisted dying for the 46 years since, as a teenager, I had to listen to my mother's painful final hours, I am starting to think maybe it would be better if the Bill falls this time round and we get a proper parliamentary (I hate to use the word 'Royal') commission, a calm and considered debate and eventually a law fit for purpose.
I think the 6 month criteria is too restrictive and essentially rather arbitrary (why not 2 years, why not at any time of the patient's choosing after a terminal diagnosis) but once introduced would become a fixed limit.
I like to feel in control of my life too. When I got a diagnosis of malignant metastatic melanoma in 2019, and was given a "less than 50:50 chance of surviving 5 years", I signed up with a clinic in Switzerland. Knowing I had that option helped me enormously navigate the years that followed. I believe everyone who is similarly confronted should have the same choice.
Thank you, Ian. Yes, I got the 'all clear' two weeks ago. Going to celebrate with my best chum with dinner at the Ivy and an overnight stay in a Travelodge!
The glass of champagne at The Ivy was one of the most quaffable I've ever encountered (and I have made a point of encountering plenty of glasses of champagne). The waitress, Ellie, was a total delight, funny, kind, helpful, efficient. But we agreed that the food was a little disappointing.
I didn't love the night at the Travelodge - I'd been watching too many True Crime series on Netflix and spent night expecting an intruder. My bad.
But overall, my chum and I had a fab 24 hours of focusing on how lucky we are... including to be old!
It's important to remember that palliative is not the perfect science that objectors often imply: For some people, even in the best centres, with the best staff and the nest drugs, death can be painful and distressing for all. I have seen professionals in tears on several occasions.
But for me, the simple fact is encompassed by "Whose life is it anyway?"
If I can blow my brains out with a .357 Magnum, that's OK, but if I'm too ill to reach it, I can't have a civilized death instead? Seems wrong to me.
I supported the bill just out of general principle until I read here what was in it. That is a completely stupid process, it feels like a way to say we have allowed it without having to actually allow it.
The process really has been a shambles, it feels like whenever we say something like "we need to have a national conversation about this" we mean there should be a debate in parliament then we need to wait and see what the right wing columnists have to say.
A non-partisan issue like this seems like the perfect opportunity to have a citizens assembly on the issue.
The slippery slope Canada argument seems like a complete nonsense as well though, "what if everyone who wanted to die was allowed to?" surely everyone who wanted to die being allowed to is the system we should aim for as long as there are some safeguards to ensure it is actually what they want.
The issue of not wanting to be a burden just makes me sick, if I am suffering because I feel like a burden on my friends and family does that suffering somehow not count? We shouldn't be striving to keep people alive against their will, we should be striving to make sure the state steps in and they aren't a fucking burden on their family.
What about someone who may be bipolar, and wants to die during their depressive period, but loves life at other times? Would a permissive law protect them?
The law as drafted caters for us bipolars. Either Doctor 1 or independent Doctor 2 will catch (the majority) of bipolar "applicants". The mandated time breaks will help in this. The second time break for the case to be put before the Judge also helps. A very small minority of bipolar folk will be handed the syringe to self destruct on "black dog days".
It doesn't have to be so permissive that you just give anyone who asks immediate euthanasia. A two week cooling off period and a single doctor sign off would deal with that issue.
Maybe a longer cooling off period if you didn't want to undergo additional assessment would work, I'm not really trying to have a full debate on the exact wording of the bill in a comments section, just pointing out it is possible to have safeguards short of a high court judgement.
Even a single doctor assessment might raise some questions if a physically healthy person requested euthanasia for no reason other than depression.
I don't really think a long term mental-health condition should bar your access to suicide anyway, I have been treated for depression, I suspect if I did the checklist now I would flag as depressed, does that mean I should be denied euthanasia if I get cancer?
Being bipolar is not classed as a condition which means you are almost certain to die within six months, and the bill makes assisted dying available only to those who are suffering from a terminal illness.
Very helpful, Ian. It’s not an issue I am fixed on, although don’t think we are in a good place to debate this just now. I would say that with decent palliative care patients are in control of how (and to some extent when) they die. There are no where near enough palliative care staff to do this effectively for all.
What about people who have Alzheimer’s, which can be very traumatic indeed in its later stages (paranoia, hallucinations, terrible fearfulness), but where death js not predictably likely to take place within 6 months of the time when the sufferer retains their mental capacity to choose?
This is a huge & growing cohort which must be offered the same elective opportunity to die as chronic disease sufferers whose death within 6 months can be predicted.
Great read Ian. I'm an Ex-pat Canadian living in the UK. My cousin was diagnosed with terminal stomach/bowel cancer and used MAID to end things when the pain got too bad. My mother had metastic breast cancer throughout her body and onset dementia and considered MAID. As her condition worsened so did her resolve and her doctor refused to sign her "off" (so to speak) as she wasn't convinced my mother really wanted MAID. Not long after she slipped into a coma and passed naturally - so in my opinion, MAID works and I've let my MP know my feelings and expectations for her to support the bill.
Thank you. This is why my blood boils when I see out of touch politicians like Diane Abbott moaning on about people being taken advantage of or coerced into going down this route. The process is overseen by doctors - they are not stupid people. Senior judges are not stupid people. Life is precious to them all and making a decision to allow one to end is not something any of them would ever do on a whim or to score political points - unlike a certain Ms. Abbott!
This has been a rare issue where the public debate has changed my mind. I started off instinctively supportive but I’ve come round to being on balance against. The coercion argument and the Canadian experience are key for me. There are at half a million Northern Irish mammies that will want to shuffle off rather than be any trouble. And the whole thing does frame death a bleak and unnatural thing rather than an ending to be mourned and celebrated.
It's important to remember that the proposed UK law is similar to the Australian model not the Canadian one. Those against AD always go on about Canada but it's like comparing Apples with Pears...similar sure but not the same.
The Canadian judicial challenge slippery slope could be countered by reference to a supra-judiciary, but the Canucks don't have one. At the mo', we do - the ECHR. Another case against the Tugendtwat and Jenrong Tory loonies who advocated for walking away.
An excellent piece, and I sort of fall in a similar place to you - I'm instinctively for it...but have reservations that have crystallised recently.
There's one thing that I've not seen mentioned - my mother sadly passed away from a serious stroke at the end of last year, and she died slowly over a period of days after care was withdrawn. I feel this was the right thing to do - she didn't appear to suffer and had time for friends and family to gather at her bedside, despite being unable to communicate. If assisted dying was in place, I'm pretty sure there would be pressure to allow people in this situation to be 'relieved of their suffering', but how would that play out on the ones left behind? I would have HATED to have been offered the choice and would probably be suffering guilt over whatever decision was made for many years. I imagine this guilt may also be suffered by doctors and nurses who apply the treatment, and if not, are they people we would want to be making decisions?
It's also really worth watching Liz Carr's excellent documentary on iPlayer the covers the very real fear that people with disabilities have about this possible law.
Edit: My beloved dog passed away at the start of this year - I had to put her to sleep. It was fucking awful, but it was best for her and I know it was the right thing to do. But you do hear of dog owners getting their dogs euthanised because they're too much effort.
I'm so sorry to hear about your mother, although that sounds like a peaceful death. Glad you could be there. The Leadbeater Bill only allows for self medication and the person themself must make several applications so I don't think it would have been pertinent here. I imagine it would have gone exactly as it did here. Thank you for the message.
Thank you for your kind words, it was peaceful and as good as you can hope for in these awful situations.
Yes, the current bill would have had no impact on my situation - my worry is scope creep, and my mother’s position of being locked in and with no hope of recovery is a prime case for further application of this type of law. I can see an argument that hastening her release would have been fair, but for me it would have been utterly awful to be offered that choice. I’m still on the fence on this - i would personally want to option myself, but I’d forgo that chance if it means protecting vulnerable people. Dunno. It’s an awful thing to think of, and one that I think the English are particularly bad at. I know bugger all about the dying process until I had to deal with my mums death. This really should change.
I am in contact with some (often younger) Canadians with severe ME or severe Long Covid symptoms, unable to work, unable to care for themselves, who are sometimes in poverty or homeless due to being unable to work, entirely dependent on sometimes unkind family, or alone. They are being encouraged to opt for MAID by HCW, relieving society from its obligation to improve diagnostics, medical care & social care provision.
I am in favour of AD in some cases, probably wider ranging than what is being discussed in UK.
But more than this, society needs to do so much better for our most vulnerable members.
Thank you so much for raising this. I have Long Covid, and although I would not class myself as severe (I can still just about work; I live to work (WFH) to support my family and have very little family time and no social life to speak of anymore), my quality of life has gone from excellent three years ago to poor now. Even so, I class myself as ‘one of the lucky ones’. Severe ME has a remarkably poor quality of life. My own energy baseline has been reduced through repeat Covid infections, and I worry that if I catch it again I will become even more of a burden on my family, especially if I can no longer work. Long Covid and ME are invisible illnesses, and are largely ignored/not recognised in the UK; this is tangible by the lack of provision for ‘long haulers’ (those that aren’t getting any better over time); LC Clinics being wound down and closed; the JCVI do not allow vaccination provision for Long Covid patients as we are deemed ‘not at risk’ from Covid infections, given that many of us, myself included, have been disabled by it. That we are already being ignored and abandoned by the health system makes me very worried about a change in the legislation. Coupled with research funding for the condition drying up, and disability benefits rising greatly since 2020, I feel that AD could well be expanded in future given the financial pressures that this has created, and will continue to create as more people end up in this hole (repeated Covid infections increase the risk of ending up with Long Covid). It is not a stretch to consider that it would be attractive for future Govts to encourage this in lieu of funding research and finding treatments. To me, the slippery slope feels a very real argument against AD. Prior to getting Long Covid, I instinctively was pro-AD, but viewing life from my current perspective, and being at the sharp end of this lack of and disinterest in, treatment provision of this debilitating and disabling condition, I am now opposed to it.
The methodology of that poll has been criticised by academics: https://www.iser.essex.ac.uk/wp-content/uploads/files/news/2015/right-to-die-report.pdf. Above all, it's one thing to ask whether people think the current law should be changed, and quite another to ask if, for example, they agree that a doctor can suggest Assisted Death to somebody not asking for it, i.e. to the actual proposals in this Bill.
“It should be done calmly and generously and with the steady conviction that you might be wrong.”
What a beautiful sentence. Universally applicable. Let me know if you ever start a cult.
I despair really - numpties ville.
On Wednesday, I quietly sat holding my Nana's hand whilst she slipped away. I thought about my own mortality, would I want the prolonged death that she had for myself and the answer is definitely no. So I need to make provisions so that it doesn't happen. For me the legislation doesn't go far enough, which probably means it's a good compromise, neither side is happy.
So sorry for your loss Kathryn. Thank you for your thoughtful contribution.
Thanks Ian - that's very balanced and informative...
I'm for this, but for me it's the start of what's needed - what's important for me is living instead of existing - in the last couple of years of my Mum's live I saw a lot of people around her - in care etc. - who were existing, not living. Luckily for her she lived until just about the end.
For me - when I can't do the things I want to - experience nature, art, music - my quality of life is gone, and life turns into existence.
I want to be able to do something about that, when it happens, and that's what my LPA says.
Beautifully put. I feel the same.
Would someone like to explain what is so terrible about existing?!
A thoughtful piece, as always.
There are a couple of points that aren’t getting much space in the debate.
A huge number of people who receive end-of-life care are already subject to what can be loosely described as medicated euthanasia through the administration of strong doses of powerful painkillers in order to ensure a less painful death. Dying hurts, in almost every case.
The other and perhaps more salient point in all of this is that this is a new parliament with a huge number of new and inexperienced legislators.
I admire the willingness to proceed but, whatever your view of the issue, surely it would be a more satisfactory outcome after MPs were able to feel their feet underneath them and get a handle of the business of making big decisions such as this.
There’s a very real chance that many will play safe or make a decision like the rest of us, based on our own principles, whereas the implementation of such policy as assisted dying will need to be determined by the professional, legal and ethical parameters required to make it work for those for whom it is deemed appropriate and necessary.
Both excellent points. The lack of a proper process, with a parliamentary vote at the end, is kind of a tragedy.
It is incorrect that dying hurts in almost every case. In many cases it is a peaceful slipping away without the even the need for pain meds. Neither do pain meds kill people when used competently. People often need increased doses as tolerance increases and disease advances. So people often die (naturally) at as their dose increases. This association not causation, but it gives rise to the myth which is widely believed, understandably. I agree that pre Shipman there was probably some lax and unethical practice.
My mother's view is that there's a difference between being alive and not being dead. Just because you don't have a terminal illness with less than 6 months to live doesn't mean you have a quality of life that you want to exist through for an indeterminate period. My parents are in their 90s. Many of their friends have passed away in the last 20 years - some suddenly, some with long declines. Some of their friends have spent years in care homes with dementia.
My father has almost died several times in the last 3 years from assorted infections caused by him being unable to walk. He also has malignant prostate cancer. But he's probably in a better physical state than he has been for a long time due to good regular food and someone making sure he's drinking enough. Another infection may kill him, or not. But as long as he's happy, I'm happy.
My mother has a degenerative lung conditions and severe osteoporosis, meaning that standing up and walking is difficult. She lives alone and only goes out occasionally, but has a beautiful view from her window. She makes the best of what she can do. But she absolutely does not want to end up bed bound, with no ability to control her life.
I will be more than sad when they each go, but I will be gutted if they suffer unnecessarily because there is no legal method to allow them to say they've had enough.
This is so well expressed.
100%
There's a big, important difference - for me - between living and existing...
This is very balanced and informative. Like you I'm in favour of the law passing, and I don't see how (without a massive change) it could be used to "euthanase" anyone frail and elderly or with dementia. My father had a horrible degenerative illness (which I'm not going to name to avoid upsetting anyone who has or knows someone with it), and he was terrified of what his end days were going to be like. Very fortunately he didn't get to experience that - he fell and had a quick and peaceful death shortly afterwards, and even now (many years later) I still feel guilty to be more relieved than sad that he died when he did, as what was in store for him would have been unbearable. Things were different in the past with more discretion for medical staff to increase doses of medication to speed the end of life - I'm absolutely sure that this happened to one of my grandparents in the 1980s. (Presumably the Shipman case put a complete stop to anything like this.)
It's funny, I've lost count of how many people have told me they feel guilty for their relief in similar circumstances. It's just love, really. They don't want their loved ones to suffer. Thanks for writing this Penny.
Fundamentally a mature and evolving society within a democracy needs to respect an informed decision by an individual whilst the state maintains effective guardrails to avoid abuse. The current thoughtful proposal narrowly constrains such decisions to terminally ill individuals. It’s the minimum we should support.
Yes... it is an over-cautious minimum... which is why, as someone who has strongly supported assisted dying for the 46 years since, as a teenager, I had to listen to my mother's painful final hours, I am starting to think maybe it would be better if the Bill falls this time round and we get a proper parliamentary (I hate to use the word 'Royal') commission, a calm and considered debate and eventually a law fit for purpose.
I think the 6 month criteria is too restrictive and essentially rather arbitrary (why not 2 years, why not at any time of the patient's choosing after a terminal diagnosis) but once introduced would become a fixed limit.
I like to feel in control of my life too. When I got a diagnosis of malignant metastatic melanoma in 2019, and was given a "less than 50:50 chance of surviving 5 years", I signed up with a clinic in Switzerland. Knowing I had that option helped me enormously navigate the years that followed. I believe everyone who is similarly confronted should have the same choice.
Just very glad you made it. Hope you were able to celebrate hitting that five year mark from the diagnosis, which I presume was this year.
Thank you, Ian. Yes, I got the 'all clear' two weeks ago. Going to celebrate with my best chum with dinner at the Ivy and an overnight stay in a Travelodge!
Best thing I've read today. So, so pleased. Also: the Ivy/Travelodge combo - very unusual and possibly underrated.
Best chum assures me I won't be disappointed. Will report back! <3
Reporting back as promised:
Well. (As DAG might say.)
The glass of champagne at The Ivy was one of the most quaffable I've ever encountered (and I have made a point of encountering plenty of glasses of champagne). The waitress, Ellie, was a total delight, funny, kind, helpful, efficient. But we agreed that the food was a little disappointing.
I didn't love the night at the Travelodge - I'd been watching too many True Crime series on Netflix and spent night expecting an intruder. My bad.
But overall, my chum and I had a fab 24 hours of focusing on how lucky we are... including to be old!
It's important to remember that palliative is not the perfect science that objectors often imply: For some people, even in the best centres, with the best staff and the nest drugs, death can be painful and distressing for all. I have seen professionals in tears on several occasions.
But for me, the simple fact is encompassed by "Whose life is it anyway?"
If I can blow my brains out with a .357 Magnum, that's OK, but if I'm too ill to reach it, I can't have a civilized death instead? Seems wrong to me.
I supported the bill just out of general principle until I read here what was in it. That is a completely stupid process, it feels like a way to say we have allowed it without having to actually allow it.
The process really has been a shambles, it feels like whenever we say something like "we need to have a national conversation about this" we mean there should be a debate in parliament then we need to wait and see what the right wing columnists have to say.
A non-partisan issue like this seems like the perfect opportunity to have a citizens assembly on the issue.
The slippery slope Canada argument seems like a complete nonsense as well though, "what if everyone who wanted to die was allowed to?" surely everyone who wanted to die being allowed to is the system we should aim for as long as there are some safeguards to ensure it is actually what they want.
The issue of not wanting to be a burden just makes me sick, if I am suffering because I feel like a burden on my friends and family does that suffering somehow not count? We shouldn't be striving to keep people alive against their will, we should be striving to make sure the state steps in and they aren't a fucking burden on their family.
What about someone who may be bipolar, and wants to die during their depressive period, but loves life at other times? Would a permissive law protect them?
The law as drafted caters for us bipolars. Either Doctor 1 or independent Doctor 2 will catch (the majority) of bipolar "applicants". The mandated time breaks will help in this. The second time break for the case to be put before the Judge also helps. A very small minority of bipolar folk will be handed the syringe to self destruct on "black dog days".
On average, it takes nearly a decade before people with bipolar disorder get a diagnosis. So clearly it's not at all something doctors easily spot.
It doesn't have to be so permissive that you just give anyone who asks immediate euthanasia. A two week cooling off period and a single doctor sign off would deal with that issue.
"The median duration of bipolar I mood episodes was 13 weeks"
https://jamanetwork.com/journals/jamapsychiatry/fullarticle/210663
And that's assuming the disorder is diagnosed in the individual.
There would be a real risk that someone with a treatable condition would be allowed to die in a too permissive system of assisted dying.
Maybe a longer cooling off period if you didn't want to undergo additional assessment would work, I'm not really trying to have a full debate on the exact wording of the bill in a comments section, just pointing out it is possible to have safeguards short of a high court judgement.
Even a single doctor assessment might raise some questions if a physically healthy person requested euthanasia for no reason other than depression.
I don't really think a long term mental-health condition should bar your access to suicide anyway, I have been treated for depression, I suspect if I did the checklist now I would flag as depressed, does that mean I should be denied euthanasia if I get cancer?
Being bipolar is not classed as a condition which means you are almost certain to die within six months, and the bill makes assisted dying available only to those who are suffering from a terminal illness.
The bill permits assisted dying only in the case of terminal illness, I think
Two doctors and a judge will recognize issues such as this.
There has been a citizen’s jury on this, by the Nuffield Council on Bioethics - quite small numbers but rigorously done: https://amp.theguardian.com/society/2024/sep/13/citizens-jury-backs-assisted-dying-terminally-ill-england. Jersey has also held one: https://www.gov.je/Caring/AssistedDying/pages/citizensjuryonassisteddying.aspx
Very helpful, Ian. It’s not an issue I am fixed on, although don’t think we are in a good place to debate this just now. I would say that with decent palliative care patients are in control of how (and to some extent when) they die. There are no where near enough palliative care staff to do this effectively for all.
What about people who have Alzheimer’s, which can be very traumatic indeed in its later stages (paranoia, hallucinations, terrible fearfulness), but where death js not predictably likely to take place within 6 months of the time when the sufferer retains their mental capacity to choose?
This is a huge & growing cohort which must be offered the same elective opportunity to die as chronic disease sufferers whose death within 6 months can be predicted.
Great read Ian. I'm an Ex-pat Canadian living in the UK. My cousin was diagnosed with terminal stomach/bowel cancer and used MAID to end things when the pain got too bad. My mother had metastic breast cancer throughout her body and onset dementia and considered MAID. As her condition worsened so did her resolve and her doctor refused to sign her "off" (so to speak) as she wasn't convinced my mother really wanted MAID. Not long after she slipped into a coma and passed naturally - so in my opinion, MAID works and I've let my MP know my feelings and expectations for her to support the bill.
This is a really useful message. Helps to offer some experience and context if the Canadian model. Thanks for writing it.
Thank you. This is why my blood boils when I see out of touch politicians like Diane Abbott moaning on about people being taken advantage of or coerced into going down this route. The process is overseen by doctors - they are not stupid people. Senior judges are not stupid people. Life is precious to them all and making a decision to allow one to end is not something any of them would ever do on a whim or to score political points - unlike a certain Ms. Abbott!
This has been a rare issue where the public debate has changed my mind. I started off instinctively supportive but I’ve come round to being on balance against. The coercion argument and the Canadian experience are key for me. There are at half a million Northern Irish mammies that will want to shuffle off rather than be any trouble. And the whole thing does frame death a bleak and unnatural thing rather than an ending to be mourned and celebrated.
It's important to remember that the proposed UK law is similar to the Australian model not the Canadian one. Those against AD always go on about Canada but it's like comparing Apples with Pears...similar sure but not the same.
The Canadian judicial challenge slippery slope could be countered by reference to a supra-judiciary, but the Canucks don't have one. At the mo', we do - the ECHR. Another case against the Tugendtwat and Jenrong Tory loonies who advocated for walking away.
An excellent piece, and I sort of fall in a similar place to you - I'm instinctively for it...but have reservations that have crystallised recently.
There's one thing that I've not seen mentioned - my mother sadly passed away from a serious stroke at the end of last year, and she died slowly over a period of days after care was withdrawn. I feel this was the right thing to do - she didn't appear to suffer and had time for friends and family to gather at her bedside, despite being unable to communicate. If assisted dying was in place, I'm pretty sure there would be pressure to allow people in this situation to be 'relieved of their suffering', but how would that play out on the ones left behind? I would have HATED to have been offered the choice and would probably be suffering guilt over whatever decision was made for many years. I imagine this guilt may also be suffered by doctors and nurses who apply the treatment, and if not, are they people we would want to be making decisions?
It's also really worth watching Liz Carr's excellent documentary on iPlayer the covers the very real fear that people with disabilities have about this possible law.
Edit: My beloved dog passed away at the start of this year - I had to put her to sleep. It was fucking awful, but it was best for her and I know it was the right thing to do. But you do hear of dog owners getting their dogs euthanised because they're too much effort.
I'm so sorry to hear about your mother, although that sounds like a peaceful death. Glad you could be there. The Leadbeater Bill only allows for self medication and the person themself must make several applications so I don't think it would have been pertinent here. I imagine it would have gone exactly as it did here. Thank you for the message.
Thank you for your kind words, it was peaceful and as good as you can hope for in these awful situations.
Yes, the current bill would have had no impact on my situation - my worry is scope creep, and my mother’s position of being locked in and with no hope of recovery is a prime case for further application of this type of law. I can see an argument that hastening her release would have been fair, but for me it would have been utterly awful to be offered that choice. I’m still on the fence on this - i would personally want to option myself, but I’d forgo that chance if it means protecting vulnerable people. Dunno. It’s an awful thing to think of, and one that I think the English are particularly bad at. I know bugger all about the dying process until I had to deal with my mums death. This really should change.
Argh no edit option! Various grammar errors, sorry!
It's worth saying that not all disabled people feel the same as Liz Carr, many fully support and long for the option of AD.
There is also no evidence that assisted dying, in countries where it is legal, harms disabled or vulnerable people. There's been considerable intense research on this subject, this article summarises a lot of that research: https://www.mydeath-mydecision.org.uk/2024/05/13/the-views-of-disabled-people-within-the-assisted-dying-debate/
88% of people who identify as disabled favour changing the law on assisted dying in at least some circumstances.
I am in contact with some (often younger) Canadians with severe ME or severe Long Covid symptoms, unable to work, unable to care for themselves, who are sometimes in poverty or homeless due to being unable to work, entirely dependent on sometimes unkind family, or alone. They are being encouraged to opt for MAID by HCW, relieving society from its obligation to improve diagnostics, medical care & social care provision.
I am in favour of AD in some cases, probably wider ranging than what is being discussed in UK.
But more than this, society needs to do so much better for our most vulnerable members.
Thank you so much for raising this. I have Long Covid, and although I would not class myself as severe (I can still just about work; I live to work (WFH) to support my family and have very little family time and no social life to speak of anymore), my quality of life has gone from excellent three years ago to poor now. Even so, I class myself as ‘one of the lucky ones’. Severe ME has a remarkably poor quality of life. My own energy baseline has been reduced through repeat Covid infections, and I worry that if I catch it again I will become even more of a burden on my family, especially if I can no longer work. Long Covid and ME are invisible illnesses, and are largely ignored/not recognised in the UK; this is tangible by the lack of provision for ‘long haulers’ (those that aren’t getting any better over time); LC Clinics being wound down and closed; the JCVI do not allow vaccination provision for Long Covid patients as we are deemed ‘not at risk’ from Covid infections, given that many of us, myself included, have been disabled by it. That we are already being ignored and abandoned by the health system makes me very worried about a change in the legislation. Coupled with research funding for the condition drying up, and disability benefits rising greatly since 2020, I feel that AD could well be expanded in future given the financial pressures that this has created, and will continue to create as more people end up in this hole (repeated Covid infections increase the risk of ending up with Long Covid). It is not a stretch to consider that it would be attractive for future Govts to encourage this in lieu of funding research and finding treatments. To me, the slippery slope feels a very real argument against AD. Prior to getting Long Covid, I instinctively was pro-AD, but viewing life from my current perspective, and being at the sharp end of this lack of and disinterest in, treatment provision of this debilitating and disabling condition, I am now opposed to it.
Exactly, it's about choice. It's astonishingly presumptuous to assume all disabled people are the same and think the same way!
But some are worried. Where do you balance those scales?
The methodology of that poll has been criticised by academics: https://www.iser.essex.ac.uk/wp-content/uploads/files/news/2015/right-to-die-report.pdf. Above all, it's one thing to ask whether people think the current law should be changed, and quite another to ask if, for example, they agree that a doctor can suggest Assisted Death to somebody not asking for it, i.e. to the actual proposals in this Bill.
Thank you for this honest and informative piece. It’s the best thing I’ve read on the issue.