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

[Sly Saint]

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...??

quite.
I knew a lovely old lady who after a stroke (aged 94) had problems swallowing and was fitted with a PEG and fed herself via a machine up until she died 4 years later. Although she had a carer she used to do it all herself, even when she went almost blind. All the kit, replacement tubes, box loads of food packets, were delivered regularly and provided by the NHS.

 

[Arnie Pye]

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 wonder if many of the doctors treating her in hospital or elsewhere were so convinced her problems were all under her control and she was choosing not to eat and that if they just left her she would eventually "come to her senses" and eat of her own volition. But they left it so long that there was no time to intervene and so they hurried off, pretending her death was nothing to do with them.

 

[Jonathan Edwards]

In the discussion over sectioning is missing the crucial part: what then? What would have been done to Maeve had she been sectioned?

We will never know what might have happened. However, if existing guidelines were followed she should have been progressed through options for feeding support according to what was feasible for her. The coroner noted that the 2021 ME/CFS guideline does not provide additional advice on how to implement the general 2017 feeding guideline in the context of patients' inability to tolerate natural feeding for reasons other than bowel obstruction. When I raised this with Nigel Speight he did not think that anything more needed to be added. NICE so far have refused to re-open the guideline. I have added some suggestions and their rationale in my Qeios article but now that the coroner has flagged up an apparent deficiency in the NICE guideline they may have to take notice.

What is not laid out in black and white is that the impossibility of tolerating normal feeding for people with severe ME/CFS has to be seen as just as much a justification for alternative routes such as PEG as bowel obstruction.

Which brings us to what I assume to be the reason why sectioning was even mentioned in this case. It would only have been relevant to mention it if someone was operating the unofficial policy recommended by members of BSG to deny feeding support to those who are not sectionable and do not have demonstrable intestinal failure - criteria which were presumably judged to apply.

If the experience of being fed, for those with ME/CFS who for one reason or another are kept alive by feeding in some way, is too intolerable to continue with then that information needs to be made available and plans made to do everything possible to improve things. Nigel Speight and Helen Baxter have information on this and have written on it. Nigel clearly thinks that in his experience it is possible to achieve meaningful care.

 

[Kitty]

What is not laid out in black and white is that the impossibility of tolerating normal feeding for people with severe ME/CFS has to be seen as just as much a justification for alternative routes such as PEG as bowel obstruction.

Is it useful to talk about what might happen after PEG placement?

There are obvious risks with the surgery, but there are probably also concerns about things like physical and sensory atrophy. That's where gastroenterologists might actually deploy some of their expertise, if they could only be got past the blanket objections so they can think about it properly.

What are the priorities when it comes to preserving function? Does maintaining the habit of taking even tiny amounts by mouth help if people later improve enough to eat more? Might improved tolerance to oral fluids or tasting of favourite soft foods be a sufficient argument for all treatment except surgery being at home?

It seems a bit surprising that nobody's staking claims to this kind of ground. Okay it's a bit niche, but it's still a professional opportunity. Maybe they're all just too exhausted, demoralised, or whatever.

 

[Jonathan Edwards]

What are the priorities when it comes to preserving function?

I have not seen any convincing evidence that you need to keep swallowing stuff. People often go on to parenteral nutrition for months and then back to normal feeding. Our friend Jo Cambridge was on parenteral feeding for a while even if she could swallow some fluids most of the time. I don't thin atrophy is an actual issue.

Maybe we need a gastroenterologist on the forum, although we do have some knowledgeable nutritionists here who may know more.

 

[Peter T]

I have not seen any convincing evidence that you need to keep swallowing stuff. People often go on to parenteral nutrition for months and then back to normal feeding. Our friend Jo Cambridge was on parenteral feeding for a while even if she could swallow some fluids most of the time. I don't thin atrophy is an actual issue.

Maybe we need a gastroenterologist on the forum, although we do have some knowledgeable nutritionists here who may know more.

One thing about PEG feeding is maintaining oral hygiene and stopping the mouth drying out, whilst also managing oral secretions if there is any risk of aspiration, which I thought would be more important than the need to keep some level of swallowing.

 

[Jonathan Edwards]

Continuing to worry about the complexity and anomalies of disease categorisation and the role of mental capacity I looked up the definition:

Mental capacity is the ability to make an informed decision based on understanding a situation, the options available, and the consequences of the decision.

Lets' face it, for ME/CFS nobody has mental capacity. Not a single patient, doctor, therapist or lawyer out there has, and none of us here do - which is why we debate. There is no possibility of anyone making an informed decision because it is all so opaque and there are so many false trails around.

 

[bobbler]

I have not seen any convincing evidence that you need to keep swallowing stuff. People often go on to parenteral nutrition for months and then back to normal feeding. Our friend Jo Cambridge was on parenteral feeding for a while even if she could swallow some fluids most of the time. I don't thin atrophy is an actual issue.

Maybe we need a gastroenterologist on the forum, although we do have some knowledgeable nutritionists here who may know more.

How can you tell if one is good or not? I was updating a clinic page the other day with some news I had spotted and the AI bit at the top of Google suggested a gastro might have been linked to it. I did the obvious basic search terms to check fir that connection and fir any obvious ‘doom’ (like the term functional) but otherwise wouldn’t know

 

[Hutan]

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):

Sectioning a very big deal for the doctors, I assure you. It is almost as big a deal as switching off a ventilator. How it appears to patients is a matter of how it is presented.

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:

The prevalence of patients who lack capacity in New Zealand hospitals and care facilities is unknown. A recent review of 58 international studies of capacity found 45% of patients in psychiatric settings and 34% of patients in general medical settings lacked decision-making capacity.29 Two million people in the UK are estimated to lack capacity through illness.30 There is nothing to suggest that the proportion of people that lack capacity throughout the healthcare institutions in New Zealand is dissimilar; nearly a third of patients may be regarded as not having legal capacity for decision-making.

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

Lets' face it, for ME/CFS nobody has mental capacity. Not a single patient, doctor, therapist or lawyer out there has, and none of us here do - which is why we debate.

Ha. Although we do know some things that make some decisions better than others.

 

[bobbler]

Continuing to worry about the complexity and anomalies of disease categorisation and the role of mental capacity I looked up the definition:

Mental capacity is the ability to make an informed decision based on understanding a situation, the options available, and the consequences of the decision.

Lets' face it, for ME/CFS nobody has mental capacity. Not a single patient, doctor, therapist or lawyer out there has, and none of us here do - which is why we debate. There is no possibility of anyone making an informed decision because it is all so opaque and there are so many false trails around.

I think @rvallee s point is the most pertinent

if there are no guarantees what someone will to do after you sign over your freedom to get your right of consent and the people you are giving it to can’t even be clear or straight on what they believe the illness is

nevermind what else is going on re intiatives in gastro or fishing out functional elsewhere

then no choice can be informed but it’s not that persons capacity as you say and it doesn’t make handing it to someone less informed a good idea necessarily.

I think the give away in all this is that I find it hard to believe the same place didn’t have a pathway for those with MND, MS, cancer, even I’d guess covid (certainly if in intensive care?) who might have similar reasons and stages of displaying them

so the IF being the only reason ‘unless it’s psychiatric doesn’t sound fully honest. Nor explained.

and yes the point of section with psychiatric would be to theoretically hand over control for your care to a specialist in your particular condition? Eg if it was schizophrenia or clinical depression or OCD. That’s the justification ? They know where things will head if you do or don’t do x. It’s a risky business if they are 4months behind the patient themselves on what’s needed.

 

[bobbler]

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.

And me/cfs is

1. plagued by ‘stigma’ , plain underserved dislike, and misinformation that hadn’t been corrected

2. suffers hugely from paternalism, particularly those severer even with other patients sometimes even when they can think fine and make decisions but ‘can’t put their hands up fir the work’ or might need adjustments when speaking ie be rambly or speak slowly. Which requires patience, until you don’t have to because the piece of paper infers they might know what they are talking about etc and because you don’t need their consent or don’t have to listen to their needs

3. is where it is because even clinics with biomedical clinicians they don’t have long term/life time responsibility, unlike the ‘norm’ for any other illness just diagnose really then aren’t funded to keep seeing patients so don’t see patterns and prognosis. Maybe just a therapist might offer tips at the start but no one sees them each year up to five or ten years. Whether it’s intended or not it’s been a culture of having to assume that helped and no one finding out

so no one probably ever hears someone ended up here nevermind a specialist seeing them once a year and therefore knowing how many do and how they long term came out from it. There might be a mixed picture where some appreciate certain help but others different issues or outcomes. No one will know.


I’m not seeing that this option will muster up that responsibility to do right by someone long term and be open minded if it turned out it wasn’t the right thing - and that attitude of ‘effort and mind’ has been used to muddy perception of that. Such labels are likely to make that perception worse if it was there enough to begin with that these extremes were made into the ultimate ultimatum.


Or fir those who do get such powers or responsibility to be even feeding in transparently to anyone who does want to do that learning

 

[bobbler]

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.

Plus we’ve seen enough others in UK hospitals having DOLS etc put on them without that automatically coming with even tackling the feeding nevermind the environmental/PEM/sensory stuff. They’ve ended up trapped for long times often with people talking about mind techniques for pain or exposure therapy re light and so on.

 

[Jonathan Edwards]

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.

 

[TiredSam]

Mental capacity is the ability to make an informed decision based on understanding a situation, the options available, and the consequences of the decision.

Lets' face it, for ME/CFS nobody has mental capacity.

Hmm. I don't think the information or understanding have to be complete, it's more of a spectrum with ME at the "shocking paucity of information and understanding" end. But we can't say that anyone who has to make a decision in the face of incomplete information and uncertainty would lack mental capacity. Donald Rumsfeld made decisions in the face of unknown unknowns, which is apparently a common concept in project management and strategic planning circles. Nasim Taleb had the capacity to make a fortune betting on black swan events without knowing what they would be or when they would happen. Making decisions in the face of uncertainty where even the laws of probability don't apply is very much a thing.

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. As a mild patient with family support, my decision has been to reject all unproven treatments, avoid the health service, and hunker down until the landscape is a little more friendly, hoping that pacing allows me the best QoL in the meantime.

Mind you I would agree that most of those offering treatments lack capacity due to their woeful understanding of ME, perhaps that's what you meant.

EDIT: I see we have cross posted. We are probably saying the same thing.

 

[Haveyoutriedyoga]

Hmm. I don't think the information or understanding have to be complete, it's more of a spectrum with ME at the "shocking paucity of information and understanding" end. But we can't say that anyone who has to make a decision in the face of incomplete information and uncertainty would lack mental capacity. Donald Rumsfeld made decisions in the face of unknown unknowns, which is apparently a common concept in project management and strategic planning circles. Nasim Taleb had the capacity to make a fortune betting on black swan events without knowing what they would be or when they would happen. Making decisions in the face of uncertainty where even the laws of probability don't apply is very much a thing.

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. As a mild patient with family support, my decision has been to reject all unproven treatments, avoid the health service, and hunker down until the landscape is a little more friendly, hoping that pacing allows me the best QoL in the meantime.

Mind you I would agree that most of those offering treatments lack capacity due to their woeful understanding of ME, perhaps that's what you meant.

EDIT: I see we have cross posted. We are probably saying the same thing.

Indeed the 'do nothing' option is as fully risk assessed as any other option, in those strategic management circles you mention. Well, it is supposed to be..

 

[Jonathan Edwards]

But we can't say that anyone who has to make a decision in the face of incomplete information and uncertainty would lack mental capacity.

The definition depends on more than just information.
I agree that we think we could still come to a rational decision in the face of limited information, understanding and options.

BUT in the real life context none of these things can be pinned down. 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.

As the definition goes on to say you cannot define anyone as having or not having mental capacity black and white because we all differ in the range of decisions to which we apply justifiable analyses or whatever we think we are talking about.

One of my favourite lines is that what differentiates human beings from other animals is that we have a more sophisticated misunderstanding of our own nature.

My proposal was clearly intended to be rhetorical or facetious to an extent but I think we are in a context in which we really should question whether or not we are entitled to talk of anyone having 'capacity' when the information available is likely completely misleading, nobody understands what is going on and nobody even has any idea, as rvallee points out, what the options are going to be round the corner.

Just another reason for saying that mental capacity assessment should have nothing to do with triage of patients to practical options for being kept alive, at least in the paradoxical Catch22-like case that if you are deemed sane you aren't allowed treatment.

 

[Jonathan Edwards]

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.

 

[MrMagoo]

In the discussion over sectioning is missing the crucial part: what then? What would have been done to Maeve had she been sectioned? I don't think this can be discussed without those facts, and for certain there is an answer to this question, it's just one made in secret behind closed doors with no accountability. With the main consequence of removing any influence from her family, the only people protecting her.

The possibility that appropriate things would have been done, which could not be done elsewhere, sounds laughable to me. It's not as if she needed to be restrained, force-fed, sedated, encouraged through either positive or negative reinforcement, or anything like that.

What exactly is it that the psychiatric department would had done had the sectioning gone on? Nothing about this discussion matters more than this, and it's basically still mystery through secrecy. Unnecessary secrecy, which generally exists to protect privacy, but here is explicitly abused to shield from accountability.

This is the point I was trying to make. I think wording it as “what would have happened to Maeve then” was inappropriate.

The doctors were clear that they were not going to try anything other than the NG tube, so what difference would a section make? It’s really a rhetorical question as they didn’t and don’t think they could have done anything other than an NG which wasn’t tolerated (so didn’t get any nutrition ingested)

 

[MrMagoo]

I wonder if many of the doctors treating her in hospital or elsewhere were so convinced her problems were all under her control and she was choosing not to eat and that if they just left her she would eventually "come to her senses" and eat of her own volition. But they left it so long that there was no time to intervene and so they hurried off, pretending her death was nothing to do with them.

I think it’s a combination of that, mixed with a misunderstanding that ME/CFS would lead to death in any case. I really think after reading about MND/ALS these Drs thought the ME would cause the body to shut down, and stop functioning.

 

[Jonathan Edwards]

The doctors were clear that they were not going to try anything other than the NG tube, so what difference would a section make?

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.