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

cassava7 said:
Sorry? When NJ feeding is correctly tolerated, it can be run between 60 to 100 mL per hour, which is plenty enough to feel satiated as feed formulae contain 1 to 2 kcal per mL. Even when it isn’t well tolerated, it can be run at 20-30 mL/h over a longer period of time. Maeve was a fully bedbound and immobile woman as I understand it so her caloric needs must not have been high.
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cassava7 said:
I have never felt hungry when fed through my NJ tube — the argument of “neurobiofeedback” mechanisms seems absolutely pseudoscientific.
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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.

Hutan said:
These excerpts suggest that a single assessment of capacity to swallow is not sufficient when working out a suitable approach to ensuring nutrition. And, surely, sustained weight loss must be the most important sign that an approach to feeding is not working and needs to be re-thought?
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Both true. But here it seems they didn't weight her, and proxy methods may not show deterioration as easily. I'm not sure what was used here, but for example measuring the tricep skinfold can be influenced by hydration, muscle tone, how healthy the skin is. If the measurement is bad to begin with it can be hard to see worsening.

Edit: It has been confirmed arm circumference and blood albumin levels were used. The cutoff used with arm circumference to decide if someone is malnourished may not fit the patient, and tracking how a situation is developing will be influenced by the initial measurement and where the patient loses/gains weight. Albumin is influenced by many things so is not a good indicator for nutrition status.

Edit: Filled out some sentences where I forgot to spell out what I meant with the previous sentence.
 
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Nightsong said:
(Dr Roy's testimony, part 2. Not going to express my opinions of this in these posts; just reporting.)

The coroner mentions that the family had concerns that many consultants at the RD&E did not believe that ME is a physical illness, and asks his views on ME. He replies that, while he is not an expert on ME he did not think there was any question in this case that her ME was not recognised as a real condition. He also states that they were lucky to have the services of Dr Strain who while not an ME specialist did have expertise in managing ME, and that he had discussed ME with Strain for around an hour. He states that based on this conversation there was nothing that would have influenced the nutrition decisions going forward.

Discusses an initial email from Maeve's GP, who was concerned about Maeve's deterioration over the period of around six months, that she was on a limited liquid diet and had clearly been losing weight, & that there was "Harley Street" (presumably Dr W) advice to initiate NJ feeding in anticipation of swallowing difficulties. He stated that he replied to this email indicating his surprise at the suggestion that NJ feeding should be initiated in the absence of a swallowing assessment and stated that there were multiple assessment steps before non-oral nutrition could be initiated. He further suggested an urgent review of ME and a SALT assessment before further considering non-oral nutrition and further suggested the need for "robust psychological support". He added that the GP was in the best place to determine the necessity of an admission but suggested that as the gastro department had no expertise with severe ME she should not be admitted to a gastro ward as her main problem was clearly the severe ME.

There was a discussion between the coroner and Roy about the various concerns with her being supine, the intolerances to feeding, vomiting, etc. The witness agreed that those were concerns and also stated that Maeve was intelligent, had full capacity and had declined NG feeding at that time. Also a discussion of aspiration risk, and Weir's view expressed yesterday that although the "Royal College guidelines" recommended feeding while elevated Weir thought - and this is the coroner's expression of what she thought Weir said - that those guidelines were generally only applicable in stroke patients without an intact cough or swallow reflex which did not apply to Maeve.

The witness replied that in his view this was incorrect and that the risk of aspiration is not related to this but rather is related to "gravity", and that if one's stomach is not emptying and the patient is supine the feed can "roll backwards". He mentions various factors that can affect motility. He also states that a "basic principle of nutrition" is that if a patient has a functioning gut that it should be used and atrophy will occur if it is not, and that in a patient without ME it is possible to rebuild those muscles although there is no evidence about recovery from gut atrophy in pwME.

(to be continued)
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BIB Dr Roy wanted Maeve to have a SALT assessment? Speech And Language Therapy?
 
I sent my Codastory.com article about Maeve to both Fiona Hamilton and Patrick Sawer, the Times and Telegraph reporters who were both there the first three days. Sawer was also there today--I think he's attending the whole thing. I was hoping that piece, which had much more about her life before the last months because there wasn't that much information available about what went down in the end, might prompt coverage about Maeve that includes more about her than the fact that she died. We'll see.
 
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.
 
MrMagoo said:
BIB Dr Roy wanted Maeve to have a SALT assessment? Speech And Language Therapy?
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I assume Speech & Language Therapist. Our role would be in the assessment, management and if relevant treatment of the oral and pharyngeal stages of eating/swallowing. My knowledge is over twenty years out of date, but a SALT assessment would address the safety/efficiency of swallowing and for Maeve perhaps could have advised on minimising the effort involved in oral feeding and advising on food consistencies, but would unlikely be able achieve enough for her to have realised sufficient hydration/nutrition via oral feeding.

It could be that the SALT assessment would have given the team a fuller picture, but consideration would need to be given as to whether the energy costs of yet another person assessing Maeve would be worth any additional information gained, given we have no evaluated treatments for ME and the main issue was that sufficient nutrition and hydration could not be maintained orally.
 
Dr Weir said that it is common for PwME at the severe end of the spectrum to have Gastroparesis, however, I don’t recall if it has been stated that Maeve was actually diagnosed with this. What surprises me is that, as far as I can see from posts here, Dr Roy has made no mention of Gastroparesis. Surely Dr Weir would have raised this with him or other Doctors and it would have been a consideration in her treatment.
 
Deanne NZ said:
Dr Roy has made no mention of Gastroparesis. Surely Dr Weir would have raised this with him or other Doctors and it would have been a consideration in her treatment.
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We recently discussed a paper on a forum thread about gastroparesis that suggested that the diagnosis is quite unreliable and makes no difference to management, if I remember rightly.

I haven't seen any clear data that people with ME/CFS have reliably documented gastroparesis. From what the paper said I think the test didn't consistently give the same result anyway.
 
Peter Trewhitt said:
I assume Speech & Language Therapist. Our role would be in the assessment, management and if relevant treatment of the oral and pharyngeal stages of eating/swallowing. My knowledge is over twenty years out of date, but a SALT assessment would address the safety/efficiency of swallowing and for Maeve perhaps could have advised on minimising the effort involved in oral feeding and advising on food consistencies, but would unlikely be able achieve enough for her to have realised sufficient hydration/nutrition via oral feeding.

It could be that the SALT assessment would have given the team a fuller picture, but consideration would need to be given as to whether the energy costs of yet another person assessing Maeve would be worth any additional information gained, given we have no evaluated treatments for ME and the main issue was that sufficient nutrition and hydration could not be maintained orally.
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I understand that SALT would also look at swallowing, for me it’s the lack of urgency. You have a GP saying she’s not eating, losing weight, very unwell needs nutrition, possibly via tube and Dr Roy is like “hang on, I think we need to go through a number of steps first, like spend a few weeks doing a SALT referral and waiting for a reply, maybe she can swallow…”
 
Midnattsol said:
Except for outright stating that the risk of death outweights the risk of death from aspiration, I'm not sure I see the difference between this and general guidelines for providing nutrition support for any patient?
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Agree. Specifically adding in "try not to let your patient simply die of malnutrition" ought not to be required. The general guidelines should be sufficient. Perhaps the coroner's recommendation via a Regulation 28 report to prevent future deaths might be all that's needed. I hope it's in time for Carla and others in NHS hospitals right now.

Nightsong said:
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"
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Ah, I see where the problem might lie.

Nightsong said:
The coroner mentions that the family had concerns that many consultants at the RD&E did not believe that ME is a physical illness, and asks his views on ME. He replies that, while he is not an expert on ME he did not think there was any question in this case that her ME was not recognised as a real condition.
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"It's a real condition" is BPS language and to my eye this is just code for "I think it's psychological".
 
MrMagoo said:
I understand that SALT would also look at swallowing, for me it’s the lack of urgency. You have a GP saying she’s not eating, losing weight, very unwell needs nutrition, possibly via tube and Dr Roy is like “hang on, I think we need to go through a number of steps first, like spend a few weeks doing a SALT referral and waiting for a reply, maybe she can swallow…”
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I have no idea about current waiting lists, but when I provided a community service we tried to see urgent swallowing referrals the same or the next day, though given we did not have on call or weekend staffing that only included weekdays. There was a similar response in patient. However even then as referrals increased this was harder to maintain.

Getting some sort of action in the community was difficult as it always seemed to be 5pm on a Friday when you were trying to contact a GP about someone who was dehydrated or did not have a safe swallow.

I am not sure if many or any SALTs would know much about severe ME, though I like to think we are a fairly pragmatic lot. However point taken, @MrMagoo, I agree that referral to us may not have been appropriate in this case, when it was not clear that there were specific swallowing issues and dealing with malnutrition and dehydration should have been the first priority
 
Peter Trewhitt said:
I have no idea about current waiting lists, but when I provided a community service we tried to see urgent swallowing referrals the same or the next day, though given we did not have on call or weekend staffing that only included weekdays. There was a similar response in patient. However even then as referrals increased this was harder to maintain.

Getting some sort of action in the community was difficult as it always seemed to be 5pm on a Friday when you were trying to contact a GP about someone who was dehydrated or did not have a safe swallow.

I am not sure if many or any SALTs would know much about severe ME, though I like to think we are a fairly pragmatic lot. However point taken, @MrMagoo, I agree that referral to us may not have been appropriate in this case, when it was not clear that there were specific swallowing issues and dealing with malnutrition and dehydration should have been the first priority
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Yeah, I feel like if A&E paged Dr Roy that someone had their neck crushed and hadn’t eaten for a while so he needs nutrition, Dr Roy would be like “well it’s urgent for you, not for me. Let’s talk again next week….”
 
FMMM1 said:
I think specialist training in ME/CFS is a contradiction in terms? ME/CFS is a diagnosis by exclusion i.e. you look at all of the known/understood/treatable conditions, which could produce this outcome, and when you've eliminated them then you're left with a diagnosis of ME/CFS i.e. left to manage without making things worse.
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I don't think there is a contradiction of terms. There is a sub specialty for it within General Medicine. In my city in NZ, a Post-Infectious Clinic was run for 30 years by a General Physician with a special interest in Post-Infectious syndromes. He diagnosed my Post Infectious Syndrome, that progressed, after 6 months into the diagnosis of ME on the hospital clinical record. He was not however considered the NZ expert in ME, that was the domain of general practice medicine and several GP's had a special interest in ME (later known as CFS) and attended ME/CFS conferences. Most of the care for ME here is delivered by GP's He would have kept up with the scientific literature on ME. He would often consult over the phone to support GP's, but would have gone to the medical ward at a treating physician's request for a second opinion. Sadly he has now retired and his outpatient clinic was disbanded due to lack of staff.
 
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Jonathan Edwards said:
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”."
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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'm going to have to draw this to a conclusion as I'm struggling, so I'll just give the most salient points from my scribbled notes, which I'll keep in case anyone has questions, but this will be my last post on the subject otherwise. I've concentrated more on the technical details that I think journalists will be less likely to report on, but there were many poignant and heartfelt moments.

Roy:

* In emails he discussed the priority requirement as being for the ME to be reviewed by a specialist even while it was reported that they were struggling with maintaining more than 700 kcal. He had spent about an hour with Strain discussing ME but information didn't influence his nutrition decisions whereas there are other conditions where general principles of nutrition aren't appropriate & different approach required.

* Met Maeve twice. PEM very severe & required a long time to recover from any exertion; even discussions in the same room too tiring. Many very personal details here. In July he had a discussion with Dr Warren (under whose care Maeve had been placed) re NG feeding. Ward team performing "practice runs" of sitting her up. Roy had concerns about NG feeding but based on Strain's advice it was tried.

* In September Roy emailed Strain to raise the question of whether an "urgent psychiatric review in order to consider sectioning" was required in order to implement artificial nutrition "in best interest" but Strain and his colleagues dealing with Maeve more directly were happy that Maeve had capacity. 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.

(Personally, I don't remotely believe that he suggested an "urgent psychiatric review" because of the potential for brain fog.)

* He wrote an email for an MDT meeting in which he was clear why in this case he did not believe PN should be used: firstly, that it was not indicated because there was no IF; secondly, that if there is a functioning gut then not using it leads to the gut muscle wasting and that it may no longer work and we do not know if this could happen irreversibly in ME so it was important to maintain enteral feeding; and thirdly that because of hygiene an aseptic technique could not be maintained and that it would have likely led to line sepsis and death.

* He said that even if they were able to address the hygiene issues there were two conditions where he might have considered PN in someone with a functioning gut: firstly, if it was felt there was a reactive or primary psychiatric condition then PN could be a "bridge" to a psychiatric intervention; the second possibility was as a "bridge" to a possibility that Strain was investigating, one of an "experimental" approach in Germany.

(Again, this consideration of PN as a "bridge" to a psychiatric intervention is... notable.)

* In a discussion of palliative care Roy states that PN is used in specific palliative care settings but is too problematic to use in the last phase of life due to food overload etc.

* Says that the (2007, I think) NICE g/l only advises on hydration & dietetic input but does not discuss NG/NJ/etc feeding.

* On the Baxter/Weir/Speight paper he had not been aware of it but has read it since. Points out that it was a case report but not a trial; says it emphasises the problem of not recognising ME as a diagnosis which was not the issue here & said that some of the cases were of patients with IF which would be an indication for PN. Says nothing in the paper that would have changed things in this case.

* A very poignant family question: he was asked whether he believes "the RD&E did everything it possibly could" to save her life? He replies that he does (!!) and goes into a long explanation about how everything that could have been tried was tried.


And a few points from Warren's (diabetes & endo & gen int med) testimony:

* C asked his view of ME, physical or psychological. He replies that he does not know & does not find it a productive question to dwell on as in the guidelines it's described as complex and of "unclear aetiology"; that it's not defined by a specific test, which does not imply that it is not a physical disorder but that he does not know what causes it and so reserves a position. Says that although he doesn't know the cause it can still be taken seriously, that there are needs that clearly need to be met, and not knowing should not imply that it is malingered or imaginary.

(This is curiously similar to the views of other witnesses.)

* Only dealt with Maeve during a short period in July. C asked if he had experience working with patients with severe ME or similar to Maeve; he did not. Asked if he had completed training on ME; said he was unaware of any such training on the NHS. Strain had tried treating her with vitamins, colchicine, aspirin and fludrocortisone.

* NG feeding trial required at least a 30 degree angle but preferably 45 & they insisted that the team had to have witnessed this. Could not be weighed so proxies were used like arm circumference & also serum albumin checked. Did not discuss progression to NJ etc but rather attempt to resume oral feeding. Maeve had found the experience of having an NG tube upsetting, difficult and tiring and Warren felt it had been a failure & possibly counterproductive and that it would be better to remove it.

* 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.

(The concern over medicalisation is notable here.)

* Questions from the family: he was asked whether he had any thoughts on the biological underpinnings of ME - "no, not any useful thoughts". He had read Weir, the NICE g/l, some of the literature which he generally finds "unclear". Another Q was about the appropriateness of situating her on the eating-disorder ward rather than the neurology ward. Suggested the "bed management team" thought that anyone needing feeding could be treated the same way but doesn't think that Lowman (sp?) was inferior to Bowlam (sp?) ward. Another interesting question SB posed was that she had kept her own records and there was a disparity between her and the ward's records of Maeve's nutritional intake; he suggests her kidney function was adequate at that stage and also suggests nutritional intake not always recorded well on the wards.
 
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