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

[MrMagoo]

Five pages of posts have been moved from George Monbiot on ME/CFS, PACE, BPS and Long Covid
As background:
Some of these posts consider the question of whether current assisted feeding policy in the UK prevents some interventions for people who have decision-making capacity and do not have obstructed gastrointestinal tracts. People who are deemed to not have decision-making capacity may be sectioned; it is not clear if being sectioned would currently make it more possible for a person with ME/CFS to be provided the most invasive forms of assisted feeding in order to maintain adequate nutrition.

Other related threads are:
Maeve Boothby O'Neill - articles about her life, death and inquest
United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media
Severe difficulties with eating in ME/CFS

*****

Regarding George Monbiot's article, this latest one really paints a picture and redeems The Guardian a little in my eyes, though question marks hang over previous coverage from The Guardian by other authors who previously swallowed and regurgitated the SMC's irrational garbage.

The revelations in the article about the origins of a key member of the SMC in the Revolutionary Communist Party (RCP) are extraordinary and eye opening and regarding the policies of the RCP, beyond the pale.

This origin explains much about the contrarian divisiveness we have seen deployed against PWME by the SMC and BPS proponents.

This then becomes very difficult to discuss on S4ME because such gambits have their origin and purpose in politics and the guidance for S4ME discussion is to avoid discussing politics in favour of adhering to scientific methodology and rationality lest the discussion become too heated and get out of hand.

I think remaining rational and focussed on science in the face of such deliberate attempts to destabilise and derange the civil consensus, let alone the scientific process, is a strength and itself a winning counter-gambit which we should stick with.

I also think we need to take inspiration from this article to make sure the rest of the world understands what has been going on.

Assuming that everyone now understands ME/CFS because NICE have changed guidance would seem to be a mistake which is the very lesson Maeve's tragic and unnecessary death teaches us, about medical professionals continuing to incorrectly transfer attitudes derived from treating other conditions onto ME/CFS patients and having no 'concept' of what ME/CFS is. So I can see the point of discussion elsewhere about that. A fair concept of ME/CFS is something we need to promote to clinicians despite the opposition of reason by the contrarian harpies of the SMC.

The point that Maeve should at least have been sectioned before being allowed to die, I imagine would carry weight even with those as ignorant as the doctors who negligently allowed her to die and might serve as a way to break the ice in a dialogue with medics who still insist on burying their heads in the sand regarding the distinct nature of ME.

Why should she have been sectioned though?

 

[bobbler]

Why should she have been sectioned though?

Indeed I think we need to be aware there is potential for a lot of harm from the psychiatric - we just are even less likely to hear it due to such labels meaning if they die the waters are apparently muddied by the psychiatric label - this is the bit that made Maeves situation unusual in being able to fend this off. Not that by fending it off she avoided ‘good’ rather than an alternative’bad’ treatment pathway.

then there’s the silencing effect of getting a psych label of accusation onto someone - weakening their testimony if they aren’t banned from speaking at all. And if you say treatment doesn’t work with a label that’s weakened too.

I think that’s the bigger terror for many pwme because if you die you can’t even prove it was just the poor treatment for ME anymore as somehow a last minute label justifies ‘you can only do so much if someone was mentally ill’ thinking and responses from public , and they know it.

 

[Kitty]

Why should she have been sectioned though?

Maybe just a lesser evils argument, in extremis? No pilot wants to land a plane on a road, but if the engines are gone and the only other option is crashing into houses...

 

[boolybooly]

Why should she have been sectioned though?

Because her life was in danger and they have a legal duty of care, it does not matter whether it was seen as a mental condition or not.

Even if they did not understand or believe in ME/CFS and mistakenly thought she had anorexia they should have been monitoring her after discharging her with a clear danger to her life evident due to her inability to tolerate gastric tube feeding.

They were legally required to take the necessary steps to intervene when her life was in danger so any way you look at it they failed in their duty of care.

What they did was unilaterally discontinue care, for which they should face the law and let a court judge them and decide whether this was culpable neglect.

Far be it from me to judge but I would be on the side of the prosecution and IMHO she should of course have been fed via parenteral nutrition.

Even by their own standards, measures and rules she should not have been allowed to just die and they failed in their duty of care.

 

[Jonathan Edwards]

Why should she have been sectioned though?

To keep here alive. If you were a refugee and you had to be sectioned to get political asylum and stay alive you would go for it I think.

We cannot let arguments of procedure or philosophy get in the way of people's lives. The need to section was to get around a perceived procedural rule that in fact does not exist but might have done.

 

[MrMagoo]

Because her life was in danger and they have a legal duty of care, it does not matter whether it was seen as a mental condition or not.

Even if they did not understand or believe in ME/CFS and mistakenly thought she had anorexia they should have been monitoring her after discharging her with a clear danger to her life evident due to her inability to tolerate gastric tube feeding.

They were legally required to take the necessary steps to intervene when her life was in danger so any way you look at it they failed in their duty of care.

What they did was unilaterally discontinue care, for which they should face the law and let a court judge them and decide whether this was culpable neglect.

Far be it from me to judge but I would be on the side of the prosecution and IMHO she should of course have been fed via parenteral nutrition.

Even by their own standards, measures and rules she should not have just been allowed to die and they failed in their duty of care.

But she couldn’t be sectioned because she didn’t meet the criteria.
People with other diseases (usually terminal ones) can refuse further treatment. And these doctors felt she was not going to live past another 8 months.
Anorexics don’t just get sectioned and force fed, there is a lot of case law where they successfully argue they aren’t mentally unwell enough to be force fed.
You can’t get two sign offs on a section of a mentally well person, just to force them to have a medical treatment otherwise people would be getting sectioned for all sorts.
What should have happened it’s they should have listened to Maeve, her mother and the experts and tried NG feeding her at a 10% incline like they’re now doing, instead of making her sit up.

She chose to refuse further “treatment” from them, as is her right. The failure is that they “don’t have any beds” for severe ME and she faced dying there or at home.

 

[MrMagoo]

To keep here alive. If you were a refugee and you had to be sectioned to get political asylum and stay alive you would go for it I think.

We cannot let arguments of procedure or philosophy get in the way of people's lives. The need to section was to get around a perceived procedural rule that in fact does not exist but might have done.

Thought experiment -
They section Maeve and try to sit her up to NG feed her. What happens next after one day, three days, seven days? Taking into account the complications the first time, and that in evidence they said if they sectioned or re admitted her she would be on NG again.

 

[Jonathan Edwards]

But she couldn’t be sectioned because she didn’t meet the criteria.

I don't think we know that or how the decision was made.
I am not actually suggesting that sectioning would have been the right way forward in this instance but I think it is misleading to suggest that the idea of sectioning was somehow an insult or an enormity. If pressed, in a similar position I would agree to section or to second a section in this situation if it was the only way to get access to commissioned services. My experience of doctors signing sectioning forms is that they are extremely pragmatic about their decisions because all that ever matters is that someone is saved from the harm of their own illness if at all possible.

I also think it is quite possible that people in Maeve's situation do not have full mental capacity. It would be something of a miracle if they did considering the lives they have had to live and the impact of the disease on cognition.

 

[Nightsong]

The sectioning argument is a red herring. There was no relevant gastroenterological procedure that required a section.

She couldn't tolerate the NG feed that was tried (apparently on Strain's recommendation). In any event the feed that she was given through the NG was the same as that provided for oral consumption. Trialling a wider variety of feeds, slow-rate feeding via a pump rather than bolus, and the use of a PEG or PEJ were all viable options that were IMHO not adequately explored.

Yes, when AN patients are sectioned they are sometimes given NGs, but obtaining an NG wasn't a problem in this case. She had tried the same feed as she had been provided in oral form via an NG and couldn't tolerate it. There was and still is no condition-specific guidance for gastroenterologists to use and the guidance that is there (e.g. RCP's) is unhelpful as they will follow the path laid out for FGIDs/DGBIs.

I have been close to requiring enteral feeding and would strongly disagree that mental capacity is generally impaired to the point at which the conditions for a section under the MHA would take on relevance. There are plenty of people with severe brain fog from well-established causes (e.g. from alkylating agents used in chemotherapy) and capacity is never considered to be an issue there.

 

[Caroline Struthers]

the use of a PEG or PEJ were all viable options that were IMHO not adequately explored

This is one thing I really don't understand. My niece is a nurse with a job going round helping people in their own homes with PEG feeding...they have many and varied issues meaning they can't eat normally, but they are still living independently in their own homes for the most part. Why wasn't this explored for Maeve...??

 

[Peter T]

This is one thing I really don't understand. My niece is a nurse with a job going round helping people in their own homes with PEG feeding...they have many and varied issues meaning they can't eat normally, but they are still living independently in their own homes for the most part. Why wasn't this explored for Maeve...??

The issue of supporting PEG feeding in the patient’s home was controversial thirty plus years ago, when there was lots of discussion about how it could be supported and who should pay for what, but for most patient groups it was sorted in the last century. Then it was mainly about people protecting budgets.

I know less about it and I understand there are potentially infection issues but doesn’t even parenteral feeding sometimes take place in domiciliary settings.

 

[MrMagoo]

I don't think we know that or how the decision was made.
I am not actually suggesting that sectioning would have been the right way forward in this instance but I think it is misleading to suggest that the idea of sectioning was somehow an insult or an enormity. If pressed, in a similar position I would agree to section or to second a section in this situation if it was the only way to get access to commissioned services. My experience of doctors signing sectioning forms is that they are extremely pragmatic about their decisions because all that ever matters is that someone is saved from the harm of their own illness if at all possible.

I also think it is quite possible that people in Maeve's situation do not have full mental capacity. It would be something of a miracle if they did considering the lives they have had to live and the impact of the disease on cognition.

The reasoning was discussed at the inquest, the doctors considered it but she was of sound mind.

 

[MrMagoo]

This is one thing I really don't understand. My niece is a nurse with a job going round helping people in their own homes with PEG feeding...they have many and varied issues meaning they can't eat normally, but they are still living independently in their own homes for the most part. Why wasn't this explored for Maeve...??

It was covered at the inquest, they didn’t consider it until a very late stage. The earlier discussions were that she could still swallow, she has taking some nutrition (inadequate amount like under 700cals per day) then the argument was they couldn’t do a PEG as she was unable to wash and it would have immediately led to infection, which would kill her as she was so weak. I think two weeks before she died they maybe relented and said they would try it but by then she refused it as she was already near death.

 

[Kitty]

This is one thing I really don't understand. My niece is a nurse with a job going round helping people in their own homes with PEG feeding...they have many and varied issues meaning they can't eat normally, but they are still living independently in their own homes for the most part. Why wasn't this explored for Maeve...??

I don't know, but possibilities are that either the doctors didn't believe it could be justified, didn't believe a decision to order it would be supported, or believed it was too late and surgery would only hasten Maeve's deterioration.

I had a relative in rather the opposite position, pressure to have a PEG fitted whilst they could still eat by mouth, because it was very likely they'd lose their swallow within months and recovery from procedures takes longer in extreme old age. Hospital guidelines recommended that approach, and presumably doctors were encouraged to follow them.

 

[Jonathan Edwards]

There was and still is no condition-specific guidance for gastroenterologists to use and the guidance that is there (e.g. RCP's) is unhelpful as they will follow the path laid out for FGIDs/DGBIs.

That was to me what made the sectioning issue relevant in that as I understood it from snippets from the inquest Maeve's care was under a gastroenterologist who felt that proceeding further required a judgment of lack of mental capacity, otherwise the pathway would be 'functional' which was to avoid feeding support on grounds of overmedicalisation. This now seems all entirely inappropriate but if up against that - and it seems that multiple people have been up against that is the same way all over the country - then there may be no alternative.

I am also not sure that your mental capacity necessarily proves that this is so for everyone. Medicine teaches one in the end never to assume that everything is the same in similar clinical situations. There are always unknowns.

 

[Jonathan Edwards]

The reasoning was discussed at the inquest, the doctors considered it but she was of sound mind.

She was considered to be of sound mind by one physician we are told. That is all. What I do not understand is why the gastroenterologist who presumably advised against further feeding support options did not make that decision for himself. There are aspects to this story that are not at all clear.

 

[Jonathan Edwards]

Why wasn't this explored for Maeve...??

As I understand it, very simply because a group of gastroenterologists led by Dr Peter Paine have been pushing for a consensus not provide feeding support for anyone who does not either have gut obstruction or psychiatric illness with loss of mental capacity. The argument is that feeding support 'over-medicalises'.

It is a gross injustice and I shall be presenting a UCL Department of Medicine Grand Round on it in January.

It was not a question of things being too late. They had months to institute proper care.

 

[rvallee]

They were legally required to take the necessary steps to intervene when her life was in danger so any way you look at it they failed in their duty of care.

What they did was unilaterally discontinue care, for which they should face the law and let a court judge them and decide whether this was culpable neglect.

I don't know how much weight this would have on most people, but one of the things this has revealed is that there is in fact no such requirement. Being required to do something, then facing zero consequences for failing to do it, by definition means that it is not, in fact, required. Unless there are consequences, it's just words someone wrote down for some reason. If there's an inquiry that completely washes any such responsibility, then it's not an oversight, it's a policy.

Which actually affects a lot, ME/CFS is far from the only medical problem facing those failures. In fact this is a widespread problem in health care, where you actually only have as much right as you can muscle through, and even then that may not be enough. What this basically says is that the overarching systems are themselves unfit for purpose, at the very least have exemptions to 'requirements', rules and laws, even rights that negate their entire purpose.

That's probably too revolutionary an argument for most, but this is basically the root cause of all the problems we see here: paper rules, rights, duties and requirements, with exemptions you can drive through ships large enough to carry millions of people. This is something that affects everyone, knowing that all those protections mean jack squat in real life if, for arbitrary reasons, the enforcers of those rules reject reality and substitute their own, which is something that even the entire medical profession is capable of.

 

[MrMagoo]

She was considered to be of sound mind by one physician we are told. That is all. What I do not understand is why the gastroenterologist who presumably advised against further feeding support options did not make that decision for himself. There are aspects to this story that are not at all clear.

He stated that she had capacity. He also made some sort of comment that expressed surprise at one point that Maeve had capacity because he thought brain fog was a part of ME/CFS. I’m paraphrasing from memory. His testimony was fascinating, he seemed totally self-assured. He also made reference to her only being able to live up to 8 months in any case? I might go back and read it. I wonder if he saw Whitney Dafoe’s letter.

genuinely interested in what medics think would happen if Maeve was sectioned and force fed by NG tube.

 

[Sasha]

If someone can't sit up or tolerate a gastric tube via the mouth or nose (which I understand, maybe incorrectly, was the case with Maeve), are there viable long-term alternatives? I did a quick search on PEG tubes and the first result was a paper that suggested that most 'elderly' (people over 65) people who are given them die within the year.

Can someone summarise what the useful/bearable/survivable alternatives would be? Such as feeding into a vein?