Maeve Boothby O'Neill - articles about her life, death and inquest

[Robert 1973]

From the Telegraph, Dr Warren seems to get it:
"When asked, he said he did not know whether ME was a physical or psychological condition, but said the “more important question is what does the person with ME need”."

Dr Roy seems to miss the point. He doesn't know either but assumes that the psychology is what needs dealing with.

I’m not disagreeing with you but does he really get it or is he being evasive?

If a patient has been mistreated, the important question is why that happened. If it is because doctors had a dogmatic belief that the patient could eat if they were sufficiently motivated, or if their beliefs were changed, then that is highly relevant IMO.

I didn’t watch the proceedings but as far as I understand, Dr Warren didn’t say what he believed, he said that he didn’t know, which is undoubtedly true but quite different.

As @dave30th says, that could well have been a pre-prepared answer that he had been advised by lawyers to give.

My impression is that Maeve may have been mistreated because of doctors’ unevidenced beliefs about the nature of her condition. If that is true, it would very helpful for that to be established by the inquest.

A separate question is whether doctors would have been justified in treating her as they did if they had a justified belief that her illness was psychological (or reversible by her own efforts). I assume that they and their lawyers have realised that the answer to that question is no, which may be why they have answered as they have.

 

[Robert 1973]

Many thanks, @Nightsong.

I just want to highlight a couple of quotes from your report which stand out [my bold]:

He then claimed, bizarrely, that having intact mental capacity was "somewhat atypical with ME" as he understood that ME can cause brain fog and cognitive impairment.

He was asked to read from what appeared to be the minutes of a meeting wherein his objection to the possibility of PEG feeding was notable; saying that her situation was difficult as it was not a "solvable problem", that PEG feeding carries risks and that inserting a PEG "would medicalise Maeve to a degree"

In the second quote above I think Dr Warren may have unwittingly answered the question about his beliefs.

 

[Hutan]

We've moved posts on low blood volume to a new discussion thread on that topic:
Low blood volume

 

[SNT Gatchaman]

says it emphasises the problem of not recognising ME as a diagnosis which was not the issue here

I think they recognised the words and letters "ME" but they clearly do not recognise/understand it as a diagnosis. There seems to be no understanding of its presentation and symptom range, that it can be severe and very severe, with those features both familiar to and universally repeated by us all here to greater or lesser extent.

He was asked to read from what appeared to be the minutes of a meeting wherein his objection to the possibility of PEG feeding was notable; saying that her situation was difficult as it was not a "solvable problem", that PEG feeding carries risks and that inserting a PEG "would medicalise Maeve to a degree". He tries to backtrack on some of this, stating that there was nuance that was not adequately captured.

(Duplicating Robert1973 above.) That's damning and cuts to the essence of where this all went wrong. I hope the coroner recognises this.

 

[MrMagoo]

I think they recognised the words and letters "ME" but they clearly do not recognise/understand it as a diagnosis. There seems to be no understanding of its presentation and symptom range, that it can be severe and very severe, with those features both familiar to and universally repeated by us all here to greater or lesser extent.



(Duplicating Robert1973 above.) That's damning and cuts to the essence of where this all went wrong. I hope the coroner recognises this.

I don’t expect a Coroner to do anything especially “explosive” at least, unless they’re known as an outspoken one. I strongly suspect this Coroner is on the ball, it’s seems both Maeve and Dr Shelton have captured plenty of evidence at the time. I also hope Sarah Boothby, as the main carer, is called to speak. I think there will be criticism of the Hospital, NHS, maybe the Council. Similar to the questioning to Dr Weir, it might seem uncomfortable but it’s drawing out threads which should be pulled together to make a strong outcome.

 

[hibiscuswahine]

Yes, it is very damning to say "that inserting a PEG would medicalise Maeve to a degree". He is clearly differentiating her medical illness of ME into a psychiatric one that he believes requires "strong psychological support" (if I remember his quote properly).

Maybe the question will be put to Dr Roy, (the specialist in Gastro and Intestinal Failure) - How can a Physician make such a clear diagnostic statement when he is not a Psychiatrist? He is not qualified to do so. He seemed very keen to start force feeding, imho, if she was found to be lacking in the capacity to give consent to a life saving treatment. So would he be prepared to insert a PEG - but only if psychiatric services took over the responsibility for her care? (reading between the lines), give her "treatment" and then the PEG could be removed? Or similarly with the NJ tube or TPN?

I find some of his explanations around risk of infection because she was not having regular washes odd. Yes, she would need good nursing care in the hospital and in the community like any other person with a TPN canula. She had two parents capable of maintaining a sterile process with education. Parents do this for their children all the time so they do not have to stay in hospital. It appears he was following some of the more recent dogma that too many PEG's are being inserted inappropriately, causing a lifelong requirement for gastroenterology input to maintain the PEG. He did not even consider a trial of it unless she had psychological support but no clear evidence, so far, they he sort help or advice on whether his belief she had a psychiatric disorder (or "psychological factors") was valid which would require him to consult with a liason psychiatrist, who would then have to take a history from her and her family, medical staff etc and examine her mental state. We don't know what the outcome would have been if he had done so.

One possibility is the psychiatrist might say there are no obvious psychological factors and to go ahead and her refusal to have a NG was due to something quite natural (rather than abherrent psychology) and totally understandable considering the severity of her ME. The evidence I have read so far is not explicit on why she didn't want further NG feeding. I can only assume from what has been reported, nurses had to do a couple of trials of sitting her up, she had discomfort ? vomiting with the NG tube. Her ME became more severe due to their interventions around the NG tube and the feeds. She did not feel she could continue with this and wanted further options of treatment.

edit: typos and in addition: medico-legally, if found to have failed in his duty of care, maybe not during this process, but perhaps in the future, (who knows...) he could use his defence of specialised clinical experience for his recommendations for psychological treatment, based on his experience (though not with ME) but other medical conditions presenting with similar complexity. But then it would need to be proved he deviated from usual practice in this situation by comparison with other experts/peers in this area.

 

[Midnattsol]

Yes, thank you to all who provide us with updates. Much appreciated!!

 

[Sean]

I wonder at what point do the non-ME specialists at the clinical coalface start turning their critical gaze on the senior BPS school ME 'experts' who have polluted the medical system with all this psycho-drama morality-play nonsense.

If they think it is a tough ask to have to confront their saints, they should try being a patient on the receiving end of it all.

That comment about patient selection really annoyed me. The whole point is that the treatments worked for nobody (recovery rate approx 5%).

Yes, even by the most generous inclusive patient selection and outcomes criteria nobody benefits in any meaningful practical sense.

At a tangent from the inquest...

The hospital nursing and medical staff who think ME is "psychological" are, in effect, admitting that they think patients with mental health problems don't deserve care and if such patients die it is their own fault.

Worth shouting at every opportunity because it's true, and even more so because we are absurdly accused of minimizing mental illness... by people who see nothing wrong with letting what they think are mentally ill people starve to death in immense suffering. The response from many MDs about it, blaming the victim with the same bigotry and ignorance that led to her negligent homicide, says it all.

No, it's them who clearly don't see mental health as important. For all the lies of the biopsychosocial model, this is the most perverse: it not only makes physical health worse, it especially makes mental health worse. All the mockery and the eye-rolling, snide comments and appaling comments make it very clear.

Although they are lies, the word is that those "functional disorders" are not malingering, that it's all "unconscious behavior", or whatever. Therefore this oppositional approach has no place, it only makes sense in the context of behavioral problems made consciously. And of course that's exactly what they mean. They believe very few of the things they say, they know they are false, are nothing but excuses for what they actually believe.

Technically, what's likely happening is that they see this as acceptable because people with severe mental illness can get that bad, and there is very little that medicine can do. But this is obviously not that, there is no amount of saying it that will make it so. It's all perfectly captured in "the bastard just don't want to get better", this sentiment is written all over the academic literature even though it's completely wrong.

They let people die for their beliefs. This is the definition of extremist beliefs, and it has no place whatsoever in health care or any other profession.

+1

One thing that I think is important to consider is that if people with ME/CFS do have low blood volume I think much the most plausible explanation for that is that they have been recumbent much of the time. Lying down produces quite major changes in fluid, oncotic and haemodynamic physiology. So lying down may not be a good thing to encourage people with ME/CFS to do.

I agree that patients should not be recumbent or generally inactive any more than needed (including a sufficient margin of error). But they certainly should be when needed. Being able to lie down and deactivate when required is one of the very few effective management options I have found.

Dr Roy - consultant gastroenterologist at the RD&E - was the first witness. Worked in Colchester, New Zealand, then in Exeter and now as a gastroenterologist and intestinal failure expert in Bath. His subspecialty is nutrition and IF. He states that he has an additional interest in the treatment of "disorders of gut-brain interaction" where there is an "overlap of organic and functional pathologies", mentioning in that context his treatment of neurodivergent patients and patients with mental health needs.

A whole room full of alarms going off there.

I have been fed the "building tolerance idea" so many times when various parts of my body just aren't working. It never ends well for me.

Me neither. Just doesn't work, and makes it worse.

 

[Sean]

Big thanks to all those reporting from the proceedings.

 

[Jonathan Edwards]

He was trying to give that impression, at any event. the response was pretty much like the responses we'd already heard. it sounded to me like a kind of canned response that was perhaps suggested by the trust's lawyers.

Well, for me the point hits the nail on the head. Which it would do of course because I wouldn't be surprised if it was making use of my Qeios piece.

 

[Daisybell]

The issue of whether to provide alternative or supplemental feeding via a tube - PEG, PEJ, TPN - whatever, surely should have been based on three factors only - 1/ was Maeve capable of maintaining her nutrition and hydration orally, 2/ did she want to consider alternative feeding and 3/ was her care palliative? The rest is just about which route is best. I can’t believe what I am reading from the proceedings. It’s so inhumane.

 

[Jonathan Edwards]

I’m not disagreeing with you but does he really get it or is he being evasive?

I am suggesting that he gets it now, or at least is saying what he would say if he did.
I am not in the least implying that the problem was not about beliefs of doctors - in fact that is my point and his point hear - people should have been focusing on what the patient needed, not what they thought the cause was. Roy shows that he was completely muddled and inappropriate ideas influenced his actions. Warren's comment acknowledges that it seems to me. I think it may also be important to acknowledge that the biomedical theories behind other suggestions are not relevant and may well be unsupported.

The legal advisors may have suggested such a line, and as indicated to David they may well have read my Qeios piece, which says this. But I don't see that as any defence of the hospital's actions since they were clearly coloured by theory.

And we don't know what ME/CFS is, or indeed, as I note in my piece, whether very severe ME/CFS is just ME/CFS or ME/CFS combined with some independent factor. The professionals should stop arguing and give the patient what they need.

 

[Jonathan Edwards]

In the second quote above I think Dr Warren may have unwittingly answered the question about his beliefs.

So yes, reading through who said what, it seems clear that Warren was also working on beliefs at the time.

 

[Sbag]

He was trying to give that impression, at any event. the response was pretty much like the responses we'd already heard. it sounded to me like a kind of canned response that was perhaps suggested by the trust's lawyers.

I concur, that was my impression as well. Most of the witnesses when asked have not even paused to think about their answer - they come back straight away with answers that are very similar to each other in their wording. If they are questioned further they hedge around the answer and come back with saying they believe it is a recognised condition ( ie yes we believe she is ill but we aren’t going to be drawn out on the aetiology of it) , and that they must treat the symptoms but it is very complicated.
The answers are all so similar and brief that I would be surprised if they hadn’t had background discussions to prepare for the case (as you would expect).

 

[Midnattsol]

But the idea about what someone needs can be influenced by beliefs. In this case: do they need psychological support to be able to feed themselves (and the results can be achieved in a timely manner to avoid death from starvation), or nutritional support?

 

[Jonathan Edwards]

I agree that patients should not be recumbent or generally inactive any more than needed (including a sufficient margin of error). But they certainly should be when needed. Being able to lie down and deactivate when required is one of the very few effective management options I have found.

I am sure that is right. But I think it may be important to note that somewhere Maeve had said something like that she had been told to lie flat all the time for months as the only road to recovery. That concerns me. We need evidence.

 

[Jonathan Edwards]

A fantastic job by @Nightsong.

It is all becoming clear that the problem was very much as suspected - not a fault with guidelines but with people putting groundless theories before what was needed.

I have had some suggestions about things to add to my Qeios piece, which I can do whenever I wish. I will wait until the dust has settled but there are some things I think could well go in.

People here were of great help in getting my piece into a reasonable shape. I am reassured that maybe the two key sentences in the conclusions were on target:

The simplest, and I think robust, analysis is that management of patients with stimulus challenge, often in the context of unsubstantiated diagnoses, and outside established guidelines, has caused a huge amount of avoidable distress and needs to be abandoned.

and

The least one can say is that if psychosocial factors are involved, nobody has shown useful understanding of them, or of how to manage them.

How is intensive psychological support or indeed 'attention to the ME' supposed to help when nobody knows what they are doing?

 

[cassava7]

The stretching of the stomach when it fills sets of some neurons that is among the first satiety signals. But this is again a weird argument when the patient is starving. There are medications that causes hunger, sometimes even long term after medication is stopped (f.ex. seen in children who have gone through certain cancer treatments). The medications are still used. Not feeling full is terrible but again it seems they do not take into considerstion that the alternative is no food.

The stomach may well send feedback via neurons that it is full, but fullness does not equal satiety (one can feel full but not satiated by simultaneously eating a sizable portion of fibrous vegetables and drinking a large bottle of water). Dr Roy is conflating the two, and it seems that he is disingenuously doing so in order to justify his decisions.

From my own experience of being NJ tube fed for a year and a half, I can indeed attest that my stomach did not feel full but I always felt satiated insofar as I could go through enough feed to maintain my weight every day (which, fortunately, was the case in spite of my poor tolerance). As far as I can remember, my stomach never growled. In fact, it not feeling full for hours on end was very much a welcome respite from one of the most bothersome symptoms of my gastroparesis.

Again, Dr Roy’s assessment of the risk versus benefit balance in Maeve’s case is very poor — whatever “deconditioning” might have happened to her stomach certainly did not offset the benefit of her not starving to death. Also, it cannot ruled out that tube feeding may have slowly improved her health over time such that she may eventually have been able to tolerate oral intake of food again (e.g. fortified drinks).

 

[Midnattsol]

The stomach may well send feedback via neurons that it is full, but fullness does not equal satiety (one can feel full but not satiated by simultaneously eating a sizable portion of fibrous vegetables and drinking a large bottle of water). Dr Roy is conflating the two, and it seems that he is disingenuously doing so in order to justify his decisions.

Agreed.

Thinking about the belief ME is psychological in nature, the argument about the neurofeedback from the stomach reminds me that for eating disorders there are theories that patients that eat too little find the feeling of fullness uncomfortable and thus stops eating too soon, while for overeating patients do not feel full and thus keep eating past the point they "should" feel full (using quotes since we don't know how all about satiety, nor how someone else feels).

 

[dave30th]

I seem to be the only observer/non-participant in the courtroom today, at least so far.