Letter in The Times (London) on assisted dying and ME

J

JohnTheJack

Moderator
Staff member
Letter today from member of 2001 CMO working group on ME.

Sir, Melanie Phillips’s intelligent article “Canada’s assisted death rush is a grim warning” (comment, Sep 17) appears alongside another report, “Patients with ME risk starvation, warn doctors”. The medical profession is still dominated by those who are baffled by ME in spite of the revised Nice guidelines.

I fought and managed hidden ME most of my adult life, and although I was never as ill as those admitted to hospital, I was ill enough to be told by one confused person: “What is the point of you?” This was because I was apparently slacking, outwardly underachieving on the advice of my wise GP who told me to get a job well below my mental capacity to give my body and brain a chance to recover. This approach is now called “pacing”.

I fear that in such a crippling and invisible illness, if euthanasia were to be legalised, marginalised and misunderstood ME patients could easily feel under tremendous pressure to end their lives, so as to oblige a medical profession and society that is deeply threatened by what it cannot see, understand or cure with drugs.

Alison Bailey Castellina
Chief medical officer’s working group on ME (2001); Tunbridge Wells
 
"Melanie Phillips’s intelligent article"

Really? Is that the Melanie Phillips whose extreme, often-garbled nonsense used to feature on Radio 4's Moral Maze? I don't know if it still does, as I gave up listening years ago largely due to her.
 
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I agree that people with ME could come under more pressure (though all the debate and proposed legislation focuses on protections).

We also know that too many people with ME choose to take their own lives, including members of this and other ME forums. This is awful. We need societal and medical establishment change - and more research funding to improve lives.

But is it also right in the meantime that those who choose to end what they feel is a terrible existence have to endure a difficult death? This, of course, is a microcosm of the wider debate around assisted dying.
 
We have the example of Canada that illustrates some of the complexities: in Canada generally people with ME are unable to claim appropriate benefits because the disabling effects of ME are not recognised, but the lack of access to appropriate financial support to maintain a basic quality of life in conjunction with a disabling condition is seen as justification for assisted dying.

So you have the paradox that the state’s lack of appropriate financial support for a condition it does not recognise is seen by the state as a valid reason for supporting an individual’s request for assisted dying.
 
Peter Trewhitt said:
So you have the paradox that the state’s lack of appropriate financial support for a condition it does not recognise is seen by the state as a valid reason for supporting an individual’s request for assisted dying.
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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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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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