Medical assistance in dying (MAID), and how it relates to ME/CFS

We live in the society we create. If we wish to live in a humane society and receive humane treatment ourselves then we must show humanity to others and make sure that humanity is the rule our governments follow.

Ideally, for the record, people with ME should be recognised, supported and given permission to pace and live as they need to live, to survive with sufficient quality of life to make life worthwhile. That is how it should be.

They should not be made to fight for that because fighting is bad for them. They should not be made to feel ashamed of having ME or stigmatised because it is not their fault, so it would be inappropriate, cannot do any good and just causes pointless emotional pain.

Meanwhile the endgame for society as a whole is to find a cure, so living with ME is no longer necessary, because noone has ME any more.
 
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Dolphin said:
The thing: would people prefer if in this scenario it wasn’t seen as a suitable reason and the application for assisted dying was turned down?
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Yes. Ideally people would be supported to an appropriate level to live with their ME as well as they could, such that any request for assisted dying would be based on the inherent consequences of the disease, not on benefit policies. However from the individual’s view point any decisions are based on their current and anticipated future quality of life, which includes the fact that there is no prospect of changes in government policy.

But as a government policy it is only a step removed from euthanasia.
 
Peter Trewhitt said:
Yes. Ideally people would be supported to an appropriate level to live with their ME as well as they could, such that any request for assisted dying would be based on the inherent consequences of the disease, not on benefit policies. However from the individual’s view point any decisions are based on their current and anticipated future quality of life, which includes the fact that there is no prospect of changes in government policy.

But as a government policy it is only a step removed from euthanasia.
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Nudge
 
It’s a really tough one and ultimately I think people’s view on the topic will of course be hugely influenced by their own life experiences and may well change throughout their life. I hate to see people suffer and the reality is that some people feel they are now and some people will feel they will if the law changes.

In an ideal world those of us with ME would have the freedom to live the way we want and be supported. Those with terminal conditions would have the freedom to die the way they want and be supported. And these would not be mutually exclusive positions.
 
Suicide attempts by other means are unbelievably horrific, which I know from experience. I have devastating PTSD from mine. Even if I knew for sure that I would get better, I would rather pursue MAID than live through extremely severe ME for even a month again - it was simply too much suffering. But no doctor would sign their name to the idea that my ME was terminal.

Obviously governments should support and accommodate sick and disabled people. Simultaneously though, it's a humane kindness to allow people a quiet and easy passage out based purely on their wish for it. Regulation always lags behind understanding, and always leaves out some people it shouldn't. I think the condition of "terminal illness" is an overly strict one for access to this kind of thing.
 
Keela Too said:
The thing is: would people prefer if in this scenario it wasn’t seen as a suitable reason and the application for assisted dying was turned down?
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Though requesting assisted dying due to lack of funds and poor quality of life, should surely mean re-assessment of funding sources??
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Are you suggesting the people who decide on individual applications for assisted dying are the people who can give out extra money? I very much doubt that happens currently.

And if it did, it could lead to assisted dying system being overwhelmed with applications so I’m not sure it would be an ideal way to go. But the main point I’m raising is just because the government runs an assisted dying scheme and the government pays for disability payments and social care doesn’t mean that the people assessing individual cases in the assisted dying scheme have the power to give out more money or social care hours to individuals.
 
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Dolphin said:
Are you suggesting the people who decide on individual applications for assisted dying are the people who can give out extra money? I very much doubt that happens currently.

And if it did, it could lead to assisted dying system being overwhelmed with applications so I’m not sure it would be an ideal way to go. But the main point I’m raising is just because the government runs an assisted dying scheme and the government pays for disability payments and social care doesn’t mean that the people assessing individual cases in the assisted dying scheme have the power to give out more money or social care hours to individuals.
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Sorry - you are right. It wouldn’t work out.
It just seems such an anomaly that people can be judged as unfit for any benefits (ie fit to work) at the same time as having such a poor quality of life that they are seriously considering a way out.

I don’t know what the answer should be.
 
Keela Too said:
Sorry - you are right. It wouldn’t work out.
It just seems such an anomaly that people can be judged as unfit for any benefits (ie fit to work) at the same time as having such a poor quality of life that they are seriously considering a way out.

I don’t know what the answer should be.
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I would say that the criteria for approving anyone for assisted dying must include that any deficits in quality of life are not due to lack of access to appropriate care and support services, effective pain relief. I have not researched the situation in countries where AD is available so don’t know how/if this is considered in those systems. There should be a legal duty on relevant authorities for any lack of support identified through such an application to be addressed.
 
Mods can of course feel free to post this elsewhere if they want:

Long COVID patient in Canada requests medical assistance in dying due to lack of health and social care.

https://www.wsws.org/en/articles/2024/09/18/xyco-s18.html

In 2022, The BMJ (formerly the British Medical Journal) reported that according to Michel Bureau, president of the province’s Commission on End of Life Care, Quebec had become the jurisdiction with the highest proportion of people choosing MAID globally. Bureau told a press conference that 5.1 percent of deaths in Quebec were the result of MAID, whereas in the Netherlands it was 4.8 percent of deaths and in Belgium 2.3 percent. In the rest of Canada, rates had been steadily rising to reach 3.3 percent of all deaths in 2021, the year during which the criteria for accessing MAID were loosened.
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https://twitter.com/user/status/1837083684781932677
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Just watching the news on changing the process for the bill on Assisted Dying to assessments being made by a 'multidisciplinary panel' and can't help but drop my jaw at the naivity/self-kiddery of those selling that as 'actually better because it will include a retired judge and a psychiatrist and social worker' and actually saying that this is because "this biggest issues are capacity and coercion, and those two positions [psychiatrist and social worker] are used to checking for these issues regularly"

given our experience with ME/CFS as the sources of coercion we've experienced, including in the very research then used to 'justify' actions then taken over populations in the name of treatment; and misapplication of capacity and weaponising of mental health labels.

And then there is what I have seen on issues like FII as a threat both where parents don't agree to treatment that often harms, or even where they do and then it harms [as now could be said could be predicted/seen as an outcome that has been documented] it being claimed as not to do with the treatment but the family 'doing it wrong' etc.

At least other soundbites have said it is because there will be so many of these requests to be judged - which is valid but also shocking, and surely makes the bar being kept high and the process solid even more important and not less?
 
Do Patients Without a Terminal Illness Have the Right to Die?

“Paula Ritchie wasn’t dying, but under Canada’s new rules, she qualified for a medically assisted death. Was that kindness or cruelty?”

Solid in depth article. Mentions CFS at least twice.

Author put the term “functional disorders” in quotation—nice touch.

https://www.nytimes.com/2025/06/01/...e_code=1.Lk8.yxzr.Q3UKBGDFGUoG&smid=url-share
 
I have not read it yet, but one of the serious issues with assisted suicide is that it’s a lot cheaper for the government. When assisted suicide is allowed, the financial incentives to provide adequate care and to invest adequate resources into research are greatly diminished, and the effect is greatest for those who suffer the most.

It essentially creates a perverse situation in which the government benefits from letting personal suffering and despair become so immense that people are driven past the point of no return.
 
I have strong feelings about it and don't want to read about it right now. But, I was reading on the issue the other week, here in the UK, and while they are talking about assisted dying... palliative care in one of many things that is slated to have less funding which really needs more funding. That is a balance that makes me suspicious.
 
* Trigger warning - please don’t read if you find the subject of this thread distressing *



I don’t consider it a ”kindness”, but a fundamental human right.

Before I became ill with ME/CFS I had no strong opinions about suicide or assisted suicide. Since becoming this ill, I have thought a lot about these two topics, and I am pro choice when it comes to suicide, and pro MAID for everyone, not just terminally ill patients.

I believe every individual should have the right to choose when to exit this world in a peaceful and painless manner.

I understand the arguments against suicide and assisted suicide, I understand the risks, but after having spent years in bed, in constant PEM, in darkness, in agony, with no hope for improvement or treatment in my life time, I want nothing more than the comfort of knowing I can choose when to end my suffering, in a dignified, painless way. Sadly, MAID is illegal in Sweden.
 
Utsikt said:
I have not read it yet, but one of the serious issues with assisted suicide is that it’s a lot cheaper for the government. When assisted suicide is allowed, the financial incentives to provide adequate care and to invest adequate resources into research are greatly diminished, and the effect is greatest for those who suffer the most.

It essentially creates a perverse situation in which the government benefits from letting personal suffering and despair become so immense that people are driven past the point of no return.
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Yeah. For example last week I think France passing an assisted suicide bill while their palitative care system is so underfunded many people prefer to die alone at home. That was pretty grim to see.

In theory I definitely support the right to die. In practice in a neoliberal system. It scares me how we can be pressured towards it in a dehumanising way due to “austerity”. It also scares me that some governments seem to put more effort into helping us die than helping us live.
 
Yann04 said:
In theory I definitely support the right to die. In practice in a neoliberal system. It scares me how we can be pressured towards it in a dehumanising way due to “austerity”. It also scares me that some governments seem to put more effort into helping us die than helping us live.
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Same.

The societal context matters, because it’s possible to affect the probability that someone with a certain health condition will choose suicide. If you get everything you need (within reason), and still want to die - I’d want you to be able to do it without added suffering for you and those around you.

But that simply isn’t the case, not even in Norway with a very good healthcare and welfare system in general.

You could say that it’s impossible to make it so that everyone gets what they need, so it’s humane to let people have a way out without suffering regardless, but then we’re back to the issues you mentioned.

And it also makes the class differences larger, because people with more resources will be able to pay for more services and care, so they will have less things to live despite, and there will be fewer suicides for the same conditions.
 
It does seem to me that there is an apparent paradox within the Canadian system that the suffering arising from ME/CFS is not such that the state recognises as warranting financial remedy in terms of the benefit system, but may be recognised as, along with that lack of financial support, rising to the level of justifying assisted dying.

From an individual’s view point it would add insult to injury if they were denied access to assisted dying because of the state’s refusal to recognise their support needs through the benefits system, as this is not something the individual alone can remedy.

Perhaps in an ideal system, part of any assisted dying scheme would ask the question, how much of an individual’s suffering is inherent in their underlying condition and how much is due to lack of appropriate support, that is how much is unavoidable and how much is potentially remediable. Then this hypothetical system would have access to funds to provide appropriate support to see if that reduced suffering enough for the individual to no longer seek their own death.

For many assisted dying is only seen as justified for those with a terminal condition. The current legislation under consideration in the UK would allow for assisted dying only when an individual has a life expectancy of six months or less. This too contains a contradiction that assisted dying then is only offered to those that have an end in sight through the terminal nature of their medical condition, however it is denied to those that may have equal or more severe suffering with no end in sight. Though we lack a way to adequately quantify suffering, is it consistent to say that someone with only six months of suffering ahead should be allowed access to a way out that someone facing decades of equal or worse suffering is denied.

It may be that any assisted dying scheme would contain contradictions and inequalities. Personally I remain conflicted about what might constitute an acceptable state sponsored system.

[edited to clarify wording and correct typos]
 
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I feel like all these assisted suicide bills require some very particular previsions. They ought to support people trying whatever treatment plan they want and exhausting all the possibilities. If they get to the stage of assisted suicide and that hasn't happened then serious questions need to be solved and an investigation started, but not doing it can't stop the assistance process from happening. There also ought to be a requirement for palliative care, which if it hasn't been fully applied also results in serious issues for the medical system and requirements to fix it. There is probably more but the key is to stop the system failing patients to their literal death just to save a buck or withholding treatments due to ignorance.
 
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