What needs to change to ensure better care for people with ME/CFS with feeding difficulties?

Hutan said:
Thanks for your replies @Jonathan Edwards and your ongoing work.

Just as a side point on sectioning and capacity for decision making (sorry, taking the thread further off-topic):

Practice varies, I don't think it is a big deal for some doctors. Having spent a lot of the last year sitting with an elderly relative in hospital observing what was going on around us, I have certainly seen doctors whose threshold for deciding that someone lacks capacity and needs to be sedated without their knowledge in order to impose care is surprisingly, and probably unethically, low. If doctors were uniformly acting in the best interests of their patients, were never stressed and tired, and always had plenty of time to explain things and didn't have to ration scarce resources, then the idea of sectioning would be less concerning.

But, regardless of whether a decision to classify a patient as lacking capacity is well-intentioned and appropriate or not, I have seen such a decision that was only in place briefly result in a patient losing trust in the medical system and decide that they will never seek hospital care again. Even if the patient understands that being sectioned is pragmatic, that it is simply a means to a desirable outcome, even then, as others have said, sectioning combined with a lack of a clear physical cause for the lack of capacity is likely to have ongoing negative consequences.

Categorising a patient as lacking in the capacity to make decisions for themselves is by no means rare. New Zealand's Law Foundation has done a lot of work on capacity and the following is from a 2014 report of theirs. I was astonished by the reported estimated prevalence of patients lacking capacity:

Although since 2014 views of capacity have become less binary (capable/not capable) and more situational.


Ha. Although we do know some things that make some decisions better than others.
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Jonathan Edwards said:
I do see everyone's point of view but my key thought is that things have gone wrong precisely because in a nearly impossible situation everyone has said 'Oh no, you cannot do that because there is a risk of this'. If you are faced with people in a burning house or someone dying of starvation you have to calculate what has most risk. When leaving the people in the house or sending the starving person home with no help is guaranteed to produce the wrong result someone has to be flexible on their principles.

Examples from slightly different situations don't always apply.
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Jonathan Edwards said:
Another way of looking at it might be that you cannot diagnose (in BPS terms) a functional disorder and at the same time claim the person has mental capacity because a functional disorder entails a failure to understand what is going on. Even for those who happily accept that they have seizures due to 'FND' if they go on having seizures then their minds must be getting things wrong to produce the seizures.

So there cannot be this third category that should not be given support. There are only two options, both of which merit support.
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Jonathan Edwards said:
I don't think we know that at all.
The doctors appear to have decided that if sectioning was not applicable then they had no responsibility to do more than try an NG tube once or twice. If a patient is deemed sectionable that means that they are deemed not to be able to make decisions about their own safety. In which case survival is entirely the responsibility of the medical staff rather than the patient. So everything has to be tried. In other cases other things have been tried. In at least some of these this has been seen as blundering and inhumane, but that is a different issue. The very fact that mental capacity was based about indicates to me that other things would have been done if it was considered absent.
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Jonathan Edwards said:
I don't think we know that at all.
The doctors appear to have decided that if sectioning was not applicable then they had no responsibility to do more than try an NG tube once or twice. If a patient is deemed sectionable that means that they are deemed not to be able to make decisions about their own safety. In which case survival is entirely the responsibility of the medical staff rather than the patient. So everything has to be tried. In other cases other things have been tried. In at least some of these this has been seen as blundering and inhumane, but that is a different issue. The very fact that mental capacity was based about indicates to me that other things would have been done if it was considered absent.
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I think this thread went off topic a long way back. Maybe since this has happened we need a thread re ME patients & capacity. Or capacity itself.

I don’t think that it’s appropriate to speculate publicly on the capacity of an individual person to make decisions for themselves.

Especially not when that person is no longer around to speak for themselves.

Certainly not when they were killed by the decisions
and or advice of doctors, researchers and politicians.
 
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Jonathan Edwards said:
Moreover, although human beings have a set up they call 'intelligence' that they think tends to optimise decisions in huge areas of human activity it is garbage. Economics is one. People may think they have mental capacity about economics but I suspect it is all illusory.
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Completely agree about economics. I'd be happy to add history and political studies to that too.

On a more individual level, one problem is that more intelligent people are better at finding reasons to cling on to illusory ideas. Heaven forfend that they should ever be in charge of anything.
 
Ash said:
I don’t think that it’s appropriate to speculate publicly on the capacity of an individual person to make decisions for themselves.
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I absolutely agree. I have tried to generalise as far as I can but it is difficult to avoid at least indirect reference to the one example we have some information about and it is crucially important for me to get the ideas about this right if I am to try to argue the case with professional bodies. Talking to Nigel Speight the issues seem to be much the same in many cases but certain specific issues have arisen recently. I had a reason for keeping discussion on this thread rather than others. A thread on mental capacity might be good but I think we may have covered things here and the bottom line is that it should be irrelevant anyway !
 
TiredSam said:
My understanding of the situation regarding ME is that it is a horrendous (I'm practising not using the "f" word) mess, and most of the treatment options available are unhelpful or harmful. I still have to make the best decisions I can under those circumstances, and would modestly posit the notion that I have the mental capacity to do so
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At its core is a problem of fundamentally dishonest misrepresentation. It was critical with Maeve. Decisions were made about her based on decision-making that was dishonestly kept secret with the knowledge that it can't be justified. PwME are asked to put trust into systems and people who have no capacity to be honest about what they intend to do. Psychosomatic models are fundamentally dishonest in their justifications and intents. They even documented it in full: they lie to gain trust so it can be betrayed more effectively.

And the problem is massively compounded with psychiatric hold. As we have seen, in some cases patients they get forced to do exercise, have their food withheld from them unless they go and fetch it, receive zero support, even if they fall down to the floor and can't get up, soil themselves, etc. But someone being presented with a document signing voluntary sectioning would not know this. Or would, and would refuse. Because it is a fundamentally dishonest proposition, like signing a blank contract where the details are filled in afterward. Which is not a legal contract. But it will be enforced, thus making an illegal contract legal on the basis that might is right, trumping paper 'rights'.

Just the same, Maeve agreed to go to the hospital because she would otherwise have died. But she died anyway because the secret understanding that the staff had of ME/CFS is fundamentally dishonest, based on pseudoscience and bigotry with zero flexibility or adaptation to circumstances. They were far more worried about potential harms to her body if it turns out to have been psychosomatic all along than they were about her slow agonizing death. But no one would have said that beforehand, and none had the integrity to admit to it with hindsight, after their disastrous decisions led to her preventable death.

There is no informed consent in this context. You can agree to something but the other party did not agree to the same thing. Just the same as with their definitions, their weird questions with overlapping interpretations, and so on. They have their own secret interpretation which they will never admit to. This is a root cause of almost all the problems dealing with this illness: psychosomatic ideology is incompatible with honest professional behavior. But no one can admit to this, because they genuinely believe otherwise, or ultimately because they are expected to not only make those decisions but to be dishonest about their intent and purpose. It could turn out OK, but there is no way to know, so there is no informed consent.

It's the same situation as making a contract with a person or organization when you know beforehand that they have no intention of respecting it and that you have no means of enforcing anything. So it's more like geopolitics with a hostile nation that has nuclear missiles they are willing to use than anything resembling health care. It's a "you and what army?" case, where you have no army and they are a giant military force.

Even worse is all the cheap slogans and lies about informed consent and duty of this and that. They all mean nothing in real life, they're all enforced through internal compliance codes with zero oversight and often secret proceedings where the house always wins. There is nowhere to go from there. Either the dishonest party, the medical profession, cleans itself, or everything gets stuck in place. Things have been stuck in place for decades. They just won't budge on it, they don't have to and don't want to.
 
Jonathan Edwards said:
Another way of looking at it might be that you cannot diagnose (in BPS terms) a functional disorder and at the same time claim the person has mental capacity because a functional disorder entails a failure to understand what is going on. Even for those who happily accept that they have seizures due to 'FND' if they go on having seizures then their minds must be getting things wrong to produce the seizures.

So there cannot be this third category that should not be given support. There are only two options, both of which merit support.
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This ties in to what I just wrote about psychosomatic ideology being fundamentally dishonest. It's a slightly different aspect of it but it amplifies the problem of deliberate deceit: the very concepts lack internal consistency.

Applying a concept that has no internal consistency means throwing away the need for decisions to be internally consistent. Which makes it easy to apply mutually conflicting ideas. So even if there is no intent to deceive, everyone applying such a model will at the very least be inadvertently dishonest because applying those concepts requires it.

But as we see every time this fundamental dishonesty is exposed, especially framed as a problem of medical gaslighting, physician forums and commentators boil with rage, insisting that they are doing none of that. Because what they do has zero internal consistency, they have to be very defensive about it, to the point of rejecting all implications of what they do. They just can't see the problems, because it would require them to acknowledge that they made irrational decisions.

Which is now a philosophical and ethical problem more than anything. The kind of problems that humanity has never solved. Those problems only ever become obsolete through technological progress, which doesn't apply to biopsychosocial/psychosomatic models since they are so primitive they could have been, and likely were, conceived centuries before paper was invented. So the only way out is really scientific research, because the human side of things never changes.
 
Jonathan Edwards said:
I don't think we know that at all.
The doctors appear to have decided that if sectioning was not applicable then they had no responsibility to do more than try an NG tube once or twice. If a patient is deemed sectionable that means that they are deemed not to be able to make decisions about their own safety. In which case survival is entirely the responsibility of the medical staff rather than the patient. So everything has to be tried. In other cases other things have been tried. In at least some of these this has been seen as blundering and inhumane, but that is a different issue. The very fact that mental capacity was based about indicates to me that other things would have been done if it was considered absent.
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Based on what was said at the inquiry we do
 
rvallee said:
Just the same, Maeve agreed to go to the hospital because she would otherwise have died. But she died anyway because the secret understanding that the staff had of ME/CFS is fundamentally dishonest, based on pseudoscience and bigotry with zero flexibility or adaptation to circumstances. They were far more worried about potential harms to her body if it turns out to have been psychosomatic all along than they were about her slow agonizing death. But no one would have said that beforehand, and none had the integrity to admit to it with hindsight, after their disastrous decisions led to her preventable death.

There is no informed consent in this context. You can agree to something but the other party did not agree to the same thing. Just the same as with their definitions, their weird questions with overlapping interpretations, and so on. They have their own secret interpretation which they will never admit to. This is a root cause of almost all the problems dealing with this illness: psychosomatic ideology is incompatible with honest professional behavior. But no one can admit to this, because they genuinely believe otherwise, or ultimately because they are expected to not only make those decisions but to be dishonest about their intent and purpose. It could turn out OK, but there is no way to know, so there is no informed consent.

It's the same situation as making a contract with a person or organization when you know beforehand that they have no intention of respecting it and that you have no means of enforcing anything. So it's more like geopolitics with a hostile nation that has nuclear missiles they are willing to use than anything resembling health care. It's a "you and what army?" case, where you have no army and they are a giant military force.

Even worse is all the cheap slogans and lies about informed consent and duty of this and that. They all mean nothing in real life, they're all enforced through internal compliance codes with zero oversight and often secret proceedings where the house always wins. There is nowhere to go from there. Either the dishonest party, the medical profession, cleans itself, or everything gets stuck in place. Things have been stuck in place for decades. They just won't budge on it, they don't have to and don't want to.
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BIB is the nub of it, in my opinion
 
Jonathan Edwards said:
If a patient is deemed sectionable that means that they are deemed not to be able to make decisions about their own safety. In which case survival is entirely the responsibility of the medical staff rather than the patient. So everything has to be tried. In other cases other things have been tried. In at least some of these this has been seen as blundering and inhumane, but that is a different issue. The very fact that mental capacity was based about indicates to me that other things would have been done if it was considered absent.
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Forgive me if this has already been said, i'm not able to read/absorb much atm.

But it seems to me the most appalling multifaceted catch22 as you've said.

Because the problem if drs deem lack of capacity and therefore try everything because the responsibility lies with them, is that they also deem the person incapable of assessing for themselves, accurately, what the effect of sound, light etc & sitting up at 30degrees will have on the illness thats making them unable to eat in the first place. So the patient is faced with either not getting nutrition, or having their suffering made even worse than it was in the first place.
I totally get why some people choose to just go home to die then.
Its an impossible choice.

Its utterly crazy making - they think you're not sane enough to be able to judge the impact of environmental factors on your own condition - despite having had those experiences multiple times - 'you only think it will make you worse, when it will actually make you better' - so in one breath they say you are mentally deranged

and yet in the next breath they say you are not incapacitated enough to make keeping you alive their responsibility.

They, as per usual, want it both ways.

And this catch22 is par for the course with ME, you have to be well enough to communicate you needs, and yet if you are well enough to communicate you are deemed to not be ill enough to have the needs you say you have.

You have to show you are motivated but not too motivated because then you are 'type A'. You have to not show you care about your health because if you do they deem you have health anxiety but if you act like you not anxious they deem you not to care and to be depressed & have given up.

I dont know what the hell the answer is and I soo appreciate you and everyone trying to thrash it out to get something useful Jo
 
Jonathan Edwards said:
I don't follow. We know that mental capacity was mentioned. That can only have been relevant if it would have affected policy. I didn't see any reference to what would have been done if the answer on capacity had been different.
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Irregardless of capacity they were unwilling to try any alternatives, really it’s a moot point.

I assume, and I might be wrong, that the original poster who brought up sectioning was assuming it would lead to some kind of feeding via TPN (in the vein) but actually the Drs had (after the NG attempts) dismissed all other forms of feeding- too risky due to hygiene, and due to something about the stomach failing irreversibly if it wasn’t being used IIR.
 
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MrMagoo said:
It was discussed at length in the inquest. Can’t consider a PEG due to lack of washing, can’t consider TPN the stomach would stop working, I don’t recall but it’s there in the reporting, Dr Roy seemed very strident.
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But wasn't that all said in the context of it being established that she had mental capacity?


And my memory is that PEG was not mentioned, only TPN.

For people without mental capacity you do whatever it takes to try to keep them alive. My understanding is that the objections to TPN assumed that the patient was going to be autonomous.
 
Jonathan Edwards said:
But wasn't that all said in the context of it being established that she had mental capacity?


And my memory is that PEG was not mentioned, only TPN.

For people without mental capacity you do whatever it takes to try to keep them alive. My understanding is that the objections to TPN assumed that the patient was going to be autonomous.
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I distinctly remember the “non-working stomach/use it or lose it forever” debate, and I didn’t think that referred to PEG (or NJ or PEJ)

If the PEG can’t be done due to hygiene (assume the same issues with PEJ and NJ) and the TPN can’t be done due to stomach becoming useless, what else is there? Presumably TPN was also an infection risk.
Capacity or no capacity the same applies, they’ve decided the risks of other feeding types are too dangerous.
 
MrMagoo said:
I distinctly remember the “non-working stomach/use it or lose it forever” debate, and I didn’t think that referred to PEG (or NJ or PEJ)
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I don't know whether it did or didn't but my point was that I don't think PEG was even mentioned.
And I think it very likely that this argument is only made when it is thought that if the patient is not 'over-medicalised' by offering artificial feeding they will eventually get around to eating themselves and survive. That is to say that they are in the 'functional' group that has, in some self-contradictory sort of way 'mental capacity, which I suspect was an assumption being made throughout when this debate was raised.
 
Jonathan Edwards said:
I don't know whether it did or didn't but my point was that I don't think PEG was even mentioned.
And I think it very likely that this argument is only made when it is thought that if the patient is not 'over-medicalised' by offering artificial feeding they will eventually get around to eating themselves and survive. That is to say that they are in the 'functional' group that has, in some self-contradictory sort of way 'mental capacity, which I suspect was an assumption being made throughout when this debate was raised.
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The PEG was not offered in hospital. It was however discussed in the inquest, as to why other options were not offered.
 
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