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

I heard someone talk about the stomach being a "muscle" maybe in relation to that exchange?

If Dr Warren (or another doctor) really thought the stomach was like a muscle and it either 'had to be used to keep working" or even 'working it would build tolerance" then we are talking about an almost graded exercise program?

Sorry speculation here. 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.

 

Your duties as counsel are to represent your client's interests as per your instructions and to assist the court. Usually, those two considerations are not in conflict with each other.

If you become aware of a problem where you feel compromised or that you may be conflicted, then you have to consider your position and act accordingly. There is an overarching duty to act in the interests of justice but sometimes the nature of those interests is not as clear-cut as you might imagine.

If you decide that it is so serious that you are now irredeemably compromised/conflicted, then you must withdraw from the case.

If the matter is very serious, then it is likely that you would ask to see the judge/coroner in chambers (ie. in private), possibly with other counsel in the case present, depending on the circumstances. The problem is then for the judge to decide. Members of the judiciary have powers that counsel does not so your duty then is just to assist in any investigation that might arise.

There are extensive sources which lawyers can consult for guidance on ethical problems. I'm not completely up to date but the basic principles do not change.

The duties of counsel remain the same, regardless of the forum. However, the approach might vary slightly because of variations in the purpose of the forum in question.

 

Good report on today’s proceedings in the Evening Standard, including lots of quotes from exchanges with Dr Roy: https://www.standard.co.uk/news/crime/doctors-exeter-the-times-b1172944.html

It confirms the following exchange that was tweeted and referenced above:

 

(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)

 

Just to add as a previously involved with legal process and lawyers etc.
People may feel the lawyer was “disrespectful” towards DrWeir, however Dr Weir was more than prepared and in fact it gave him a chance to say a lot, rebutt a lot and really shine. The more questions, the better. The more explaining, the better. All of that dialogue was hard *heard and entered into public record, which is a good thing.

 

So they wouldn’t give TPN because the environment [home?] wasn’t sterile and she would have certainly got line sepsis and died?

 

I have never heard of that in the context of people being fed IV on ITU for whatever reason. It sounds like hot air to me.

Edit: Dr Roy seems to have made quite a bit of this idea of needing to keep the stomach used. As far as I know there is no evidence for that at all.

 

As someone who has been severely malnourished because of gastroparesis and followed by a hospital unit specialized in eating disorders and malnourishment, I was told time and time again that my gastroparesis was caused by my stomach having become weak (as a muscle) from not eating enough, and that eating more would get rid of it. The only treatment that helped turned out to be a surgical intervention (G-POEM).

Perhaps more concerning is that the head of this hospital unit, who personally supervised my care, sits on the education board of the French Society of Clinical Nutrition and Metabolism (equivalent to the ASPEN in the US and the BASPEN in the UK).

 

I remember recently reading about a new fashion for 'gut-brain axis' medicine, which sounds like an empty slogan to me.

I also remember reading a piece by some gastroenterologists who seemed to be actively pushing back against using nutritional support for 'functional' cases. I am getting the impression that the real problem is with a fashion in gastroenterology to offload people without structural problems, dressed up in some fashionable jargon. I think that is new, so my suggestion on Qeios that all that was needed was to follow standard policy on nutritional support may have been fair a while back but may now need a caveat if policy is shifting.

 

To clarify, your experience would suggest that the argument about stomachs benefitting from being used is probably unfounded? @cassava7

 

Yes, because trying to force myself to eat more would consistently flare my symptoms for hours (nausea, stomach fullness and distension, sometimes vomiting) and the exertion of digesting more than I could handle also made me crash / PEM. Only the surgical intervention helped, after that I was able to resume eating normally.

 

This was the recent position paper from the European Society of Parenteral and Enteral Nutrition which was discussed in this thread: https://www.s4me.info/threads/avoid...position-paper-from-the-2024-lal-et-al.39263/

 

Correct with the same argument used for why they didn’t use it in hospital.

His reasoning was that because Maeve was not able to wash or be washed very often they couldn’t maintain a sterile environment. This would be of paramount importance if putting a feeding tube in (not nasally) as the risk of line sepsis would be very high and could lead to death.

 

From a 2022 Times article by Sean O’Neill [my bold]:

“Within hours of that admission, she was bundled back into an ambulance and sent home. Her mother was told to ‘prepare for the worst’.

Maeve later texted to say the doctor ‘has his head so far up his own arse they should cut it off and leave it there’.”​

 

To be fair to Dr Roy, infection / sepsis in the context of TPN is a very real threat. But this needs to be weighed against the risk of not initiating TPN, and in this case, severe malnourishment played an instrumental role in Maeve’s death.

Also, even though she was very severe, she might have been able to handle the exertion of her carer cleaning the parts of her body surrounding the TPN port? So hygiene seems like a misleading argument and offers Dr Roy an “easy way out”.

Has there been any talk of why Maeve was not put on nasojejunal feeding (instead of nasogastric)? (see @Nightsong’s post below)

 

(Part 3/Roy. There is a lot of highly simplified anatomical discussion & explanations which I did not try to jot down. Again, I won't offer commentary.)

Weir's recommendation of an NJ was discussed. Roy gives his views as to potential progression of interventions that can be used, from NG to NJ to PEG/PEJs to PN, but indicates that the decision-making when proceeding from one intervention to the next is very nuanced and individualised. Asked by the C he acknowledges that just because someone declines an NG tube an NJ wouldn't be given and acknowledged that in some cases it may be appropriate to go directly to an NJ. States that NG feeding generally better tolerated as stomach designed to take larger volumes & boluses of food whereas small bowel designed to have liquidised food at the rate your stomach gives to it - taking away the "biofeedback mechanisms". Explains satiety from "neurobiofeedback in the stomach" which you don't have when feeding into the small bowel.

He returns, again and again, to Maeve's "fully intact capacity".

C asks about NG vs NJ risks. R explains NJ is more securely anchored in the small bowel. He states that NGs can be inserted bedside by anyone trained to do so whereas NJs are placed endoscopically or with interventional radiology and usually with sedation or occasionally with a GA. Displacement risk lower for NJ, but in the context of someone lying flat & vomiting can still dislodge. Easier to tell at the bedside if an NG is correctly placed by aspirating (acidic) gastric contents whereas checking an NJ more difficult (documented at what length it is secured & written on the tube and the length is checked; if there is concern X-ray is required). Emphasises NJ temporary; tubes last 6wks-3mo depending on manufacturer.

C asks if Maeve would need to sit up for NJ feeding. R replies that while aspiration risk is lower with NJ it still a risk & would want to feed at an angle. States there is nutritional value in feeding into the stomach. With vomiting an NJ may displace; they are designed to be temporary. Main risk with any form of enteral feeding aspiration; if NJ falls backwards into the stomach it is effectively an NG tube. A discussion of bolus vs. pump feeding. Says greater aspiration risk with pump feeding as seconds to minutes to stop feed. Equipment essentially identical for NG/NJ.

Moving on to PN. R says PN is used fairly commonly in IF units but it is dangerous, very high risk and life limiting because of the side effects that can come with the long-term use of PN and in the short term the most significant risk is that of line sepsis. More anatomical descriptions & descriptions of techniques. States that essential that sterile conditions are maintained - gives a simplified description of a central line; states that in someone with "good baseline physiology" that can be fatal and that in someone with "poor baseline physiology" it will definitely be fatal.

C asks if PN can be performed in the community. Yes, R replies, that is a big role of I/F units. In Exeter was overseeing a number of patients on home PN, although reliant on either having a patient who is sufficiently independent to perform it themselves & relies on their ability to maintain sterile conditions; for less independent patients there will be intensive nursing need. Mentions some of what is required - e.g. blood sugar monitoring & that initiating PN requires inpatient stay; community nursing needs to be available & patient/family need to be trained.

(to be continued)

 

Guardian: ME patient’s consultant tells inquest staff’s unfamiliarity with condition was ‘unfortunate’:
https://www.theguardian.com/society...-unfamiliarity-with-condition-was-unfortunate

“Sean O’Neill, told the inquest he thought the ‘belief question’ was a central one. He said: ‘The reason I keep coming back to this belief question is because I think it pervades not just the treatment of Maeve but of many patients.’”​

 

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.

I have never felt hungry when fed through my NJ tube — the argument of “neurobiofeedback” mechanisms seems absolutely pseudoscientific.

I had my two previous pediatric / small bore NJ tubes for 6 months and 1 year and did not have any issues that required changing them. When they came out they were still in good condition. I’m on my third one (an adult model with a wider bore this time), going on 2 months and it’s absolutely fine.

As for the X-ray to check that the NJ tube is correctly positioned, it takes no more than five minutes to get in and out of the exam room and can be done lying flat. It isn’t a hassle.

Vomiting can certainly dislodge a NJ tube but it is much less likely to occur than on a NG tube because the stomach is bypassed…

I am already wary of Dr Roy’s deceiving arguments.