Matthew Paris - assisted dying

[Noicant]

https://www.thetimes.co.uk/article/we-cant-afford-a-taboo-on-assisted-dying-n6p8bfg9k

This made me feel deeply uncomfortable, he has a point about aging societies and the fact that we haven’t come anywhere near squaring the circle. It does feel very much like “it’s a good think if people feel pressured to just cut their life short if they are a burden”.

I’m a bit conflicted about this, on one hand I have an only child and I’m keenly aware that I never ever want to be a burden on her personally. I’m also very much in favour of assisted dying. But the idea that social pressure is exerted to almost make someone feel shame if they choose not to euthanise themselves is really quite horrific.

I get the black and white cost analysis and I do think many people would resist it (I have had elderly members of my family being absolutely clear that they expected everything possible would be done to keep them alive, they weren’t ready, one of them was furious at the idea that treatment would be withdrawn even though it was doing more damage than good by that point). But there would be people who are very vulnerable who would struggle to say “I don’t want this”.

It puts me in mind of MAID, I think a journal actually looked at the cost saving of implementing euthansia policies. On one hand theres a clinical honesty about that (which I think is lacking in our current political debate) but it also feels immensely inhumane and brutal.

Yet....

Once it is there in principle, the scope will be broadened.

@bombastix makes an excellent point. What does a good death look like?

Definitely a good starting point and one that actually everyone should consider for themselves. Some people will want to cling on to the bitter end no matter how hard it is. Others will not want to live with ongoing pain. Everyone's capacity to live with pain or suffering is very different.

Drugs do not work on all types of pain, not all mobility issues can be overcome, not everyone has a loved one to help them and we all know that the standard of care can be very variable - quite literally there are criminal offences being committed against those who struggle to speak for themselves in one way or another.

Quality of life is very individual. My limits and desires as to what QOL looks like for me will be very different to someone else's.

Yeah, I support assisted dying (it’s in my OP and further posts).

The argument that poor people should not have children is often made on here. If you can’t afford to pay for everything your children need they shouldn’t have been born and deserve to live in poverty.

Not much of a stretch to if you or your family can’t afford your care then you shouldn’t be alive as an adult either.

I know that I’d rather be dead than in her situation. i think that for people in her situation there should be a cut off point where medical treatment of further illnesses is no longer offered, only palliative care.

I agree with you @rickyrickygrimes, but that's not going to happen any time soon. However, a legal framework already exists whereby we (at least in England and Wales), can mandate what treatment we want in the case of loss of capacity. It's called a Living Will or Advance Directive and you can create one either with a solicitor or by buying a legal pack from WHSmith or online that states your wishes in a number of different medical scenarios. In other words, you can prevent what is happening with your MIL from happening to yourself.

This is from Wikipedia, which is pretty succinct about what it does:

In England and Wales people may make an advance directive or appoint a proxy under the Mental Capacity Act 2005. This is only for an advance refusal of treatment for when the person lacks mental capacity; to be legally binding, the advance decision must be specific about the treatment that is being refused and the circumstances in which the refusal will apply. To be valid, the person must have been competent and must have understood the decision when they signed the directive. Where the patient's advance decision relates to a refusal of life-prolonging treatment this must be recorded in writing and witnessed. Any advance refusal is legally binding providing that the patient is an adult, the patient was competent and properly informed when reaching the decision, it is clearly applicable to the present circumstances and there is no reason to believe that the patient has changed their mind. If an advance decision does not meet these criteria but appears to set out a clear indication of the patient's wishes, it will not be legally binding but should be taken into consideration in determining the patient's best interests. In June 2010, the Wealth Management Solicitors, Moore Blatch, announced that research showed demand for Living Wills had trebled in the two years previous, indicating the rising level of people concerned about the way in which their terminal illness will be managed. According to the British Government, every adult with mental capacity has the right to agree to or refuse medical treatment. To make their advance wishes clear, people can use a living will, which can include general statements about wishes, which are not legally binding, and specific refusals of treatment called "advance decisions" or "advance directives".
^^
https://en.wikipedia.org/wiki/Advance_healthcare_directive#:~:text=In%20England%20and%20Wales%2C%20people,the%20Mental%20Capacity%20Act%202005.

I just want to reiterate my concern is a shift from thinking Euthanasia is a compassionate response to individual suffering to a social expectation for people who are “too expensive” to look after.

Euthanasia would work well in a system where people are well supported and the choice is purely based on their own wish to bring about an end to their life. I think if I became a burden to my DD to the point her life was massively negatively impacted I would factor that into a decision about whether to end my own life but I consider that my right as I consider the demands I put on people I love. I’d feel pretty annoyed though if random people expected me to euthanise myself for the common good.

It is a difficult conversation because there is a cost benefit to society of people who cost a lot of time and resource no longer existing. This is clearly objectively true. But is that how we want to view people 🤷🏽‍♀️.

Assisted dying terrifies me. My dad is poorly having had several strokes and my mum keeps saying "she will never be a burden". I have told my mum that if/when she gets poorly we will take care of her and I don't want her to talk herself into a decision now.

Yes. Obviously the funding for state care would collapse. Care for relatives at home or consider euthanasia. The wider conversation away from terminal illness is about public money. In the end governments will put money where they choose, not morally.

If an autistic 27 year old woman with depression can be ' assisted to die' then there is something terribly wrong with the Canadian legislation .

Having said that I think terminally ill people with no quality of life should be allowed to plan their own death with dignity.

isnt this what the Liverpool pathway was about ?

I am all for people being able to make an informed choice

I think this still exists and is now called end of life care. I might be wrong though. A relative of mine was put on it not too long ago, in her 60s after a stroke.

I agree OP. I am not sure how many have read the article. I read it yesterday and it starts reasonably with terminal illness and then heads into arent old people generally expensive and then advocates that social pressure to end things early and not be a burden is a good thing.

People here are imagining things like parkinsons which my granny had and she woukd have given anything not to go through that.

But there are plenty of old people who feel like a burden just asking a neighbour to put out the bins.

I thought that once this debate got going, this next step wouldn't be far behind. Especially in a cash strapped state. It's really ugly, in my opinion. Look even at the language on here- "we can't afford a taboo on assisted dying". Meaning perhaps that we can't afford to keep the old and sick hanging around, costing money.

Well, exactly my worry! I don't want to relying on hospice care that is propped up by charity…I’d much rather have a pain free, dignified end that I am in control of. Not putting my welfare in the hands of other people.

If weeks/months/years dying is what you want, then fine, each to their own, but its not what I want.

From the article:

"As...the practice spreads, social and cultural pressure will grow on the terminally ill to hasten their own deaths so as “not to be a burden” on others or themselves.
I believe this will indeed come to pass. And I would welcome it."

I welcome his clarity, at least.

I don't see how we can guarantee we avoid the slippery slope so clearly seen in Canada (and Belgium), where AD was brought in only for the terminally ill, and the remit has quickly expanded to include all sorts of other medical and psychological situations - including repeatedly suggest MAiD to a disabled veteran who was simply seeking additional help with practical living arrangements.

These threads are always the same.

People who are abled and have never lived in a position where they are ill and disabled.
And assumed they’d be doing X and Y ‘because that’s the right thing to do’, ‘they dint want to a burden’ etc… without even realising how their discourse is so profoundly ‘influenced’ by ableism and eugenics.

People who are chronically ill or disabled are NOT a burden. Even when they can’t work or need help. They are PEOPLE. No more, nor less than anyone else.

Have a look at the latest ad from the Alzheimer’s society and the reaction of dementia patients and many carers when they heard that ‘people with dementia are dead’.
Just think. One advert saying that dementia sufferers are dead and one article published in The Times saying that ‘if you are a burden, you should ‘chose’ death’.

Can you not see what’s going on?
Can you not see the huge risks involved with that sort of ideas becoming ‘mainstream’?

Meaning perhaps that we can't afford to keep the old and sick hanging around, costing money.

If we are going to keep people alive, who require residential nursing care, and we are not going to put the burden directly on their families, then however harshly you’ve put it, what you’ve said is true.

MILs nursing home charges £1500 per week. She and FIL don’t have much savings, and he lives in their small flat. So the taxpayer is paying for her care.

£1500 x 52 weeks, x 5 years =£390,000.

that’s for 1 person, with no quality of life and who may continue in this way for many more years to come. The only person benefiting from her being kept alive is FIL, because he can’t face up to the inevitability of her death. DH and SIL have already grieved and said goodbye to their mother - she’s already long gone.

so no, I don’t think the sums add up.

I am ill and disabled. I am only going to get worse. At some point I will die of my illness. I would like that point to be under my control when my life is too much of a burden for me to bear.

The terminally ill are always cited and used as a trojan horse. There is no need for a person with cancer to use assisted dying provided there is good palliative care (which there is in my area). The six month limit is a red herring, nobody can accurately predict, some people last a lot longer than expected and for some the disease progresses much quicker than expected. Life is precious and I have seen people fight for it to the last.

The real target here are the elderly infirm and chronically ill and disabled.
People like @rickyrickygrimes MIL.
Aside of whether it is kind to keep her going even these elderly with dementia and so on pale into insignificance cost wise to the disabled. No one dares mention them, but don't kid yourselves they won't be a prime target as soon as the bill has passed and people have got used to the idea.

Where I work we have a small cohort of people with severe learning difficulties (I hate that euphemism as it doesn't really give any idea what the reality is or of any diagnosis). Mostly people with cerebral palsy, some associated with events around birth. Some are cared for by heroic, loving relatives, others are in homes. The oldest is 52 and has no living relatives and is in a care home, all decisions made in best interests by the home staff, GP and certain others depending on what it is about. The ageing relatives of others are terrified about the future of their children when they become too old to care for them.
At least two have received substantial compensation payments. Their parents fight constantly for every effort to be made to preserve life, up to and including ITU. Others are simply the result of extreme prematurity or other issues and their relatives struggle on with what the state provides in the absence of a generous pay out.
A special needs teacher told me recently that she is seeing more and more children with significant life long problems associated with prematurity.

The general public literally have no idea of the cost of maintaining this cohort of people.

So I am extremely conflicted. I have huge sympathy for instance for a couple of our regular patients we see, one with advanced MS, needing all care 24/24, what a miserable existence they now have.

I understand the costs.

But do I want the law passed and a hit squad of Drs descending on care homes and having a clear out? I put that crudely, no doubt things would be taken care of more subtly. But the clear cost savings to be made will be too much of a temptation.

What will this mean for other disabled who have capacity? We see one person who requires 24/24 care but is very intelligent, previously worked and values life. They are incredibly vulnerable - there was a recent change of carers and I was suspicious of one, but it seems to be working out, I always take note of small details, being tidily dressed, glasses clean, that sort of thing when they attend.

I admit to being conflicted but I will always oppose this law. It will be used too crudely and harshly. Don't forget Belgium and The Netherlands now include children in MAID, and Canada tried but has had to put it on the back burner due to opposition.

Why would governments invest in provision for the disabled, special needs care and treatment when they can do away with the need in the first place? What would that mean for those with a lesser level of disability but still requiring substantial help and care?

Life is precious and we should protect the vulnerable. And please leave those with cancer out of the argument - they are not the target population, very very few people with cancer and available good quality palliative care will seek assisted dying.

So because there might be a few people who might not be in a position to make an independant and rational choice (and that's only if the safeguards are not stringent enough) then the vast majority who can do are forced to potentially suffer a slow, unpleasant and unwanted death?

Personally I'm fed up with the presumption that the majority should always suffer to prevent even the possibility of a very small minority doing the same.

People who think others can articulate their needs well should consider threads on this site every day where women don't recognise domestic abuse, don't know whether to go to A&E for their children, or lack the guts to ask their nurses for pain relief after a major operation.

People are actually very bad at articulating their needs.

An opinion almost two thirds of the population in this country agree with. The real question is why it isn't legal already.

I think we all think like that. But i think what the article actually argues for is for for it be ok for me to pressure you to ending life when its too much for me to bear. Nothing about you at all.

I'm conscious im coming scross anti assisted dying which actually isnt the case. Im just anti the argument this guy has made.

I don't understand the argument that if the law was brought in for AD for the terminally ill, that before we know it everybody would be allowed to choose it for any old reason. This hasn't happened with abortion. You can't get an abortion at 8 months pregnant just because you've had enough of being pregnant and decided you're not bothered on having a baby - so that argument just doesn't stack up for me. And there are always people 'pushing' for amendments to the abortion laws, plenty of people pushing for abortion to be abolished. Just because there are people pushing for something doesn't mean it has to happen.

I also disagree that 'feeling like a burden' shouldn't be part of the reason for choosing AD. If you're bed bound and can't do anything for yourself then you might well feel like a burden and be pretty miserable about it - because you desperately want to be able to do those things for yourself and not have to rely on other people. What is wrong with that? Why should people be forced to suck up being reliant of others to do things for them. I think people misinterpret 'being a burden' as something that you must be made to feel by others - this blatantly isn't true. Even shown by a poster on here whose mother doesn't want to feel a burden even though the poster doesn't want her to feel that and would be happy to do whatever is needed.

And please leave those with cancer out of the argument - they are not the target population, very very few people with cancer and available good quality palliative care will seek assisted dying.

No, they are the core of the argument. And many, many people with cancer would like the choice of assisted dying. It may be that when the time comes, they feel they don’t need it because palliative care is working, but the relief of having that option relieves a huge burden. I know lots of people with cancer, and virtually everyone wants the choice.