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

Not all people get long term memory loss, that is usually from bilateral ECT performed for various reasons over long periods, compared to more readily used unilateral ECT).

Unfortunately in the UK 90% of patients are still getting bilateral ECT for reasons that are unclear to me. This is not the case in many other countries. I'm guessing it's because no ECT research is being done in the UK and none of the work done abroad has penetrated NHS practice because NHS consultants don't read anything and if they do they dismiss "foreign" things.
 
I find this troubling, @Valerie Eliot Smith .

The first thing that comes to mind is that this inquest is supposed to be a fact finding exercise, not a defence of a legal client accused of some offence. In that context nobody has any business trying to manipulate the words of witnesses in order to pre-empt criticism of a potential defendant in a way that may be unjust in terms of the interests of the victim in the case and the community at large.

I would actually challenge the concept that a lawyer has a duty of this sort anyway. It is a duty that the profession has imposed on itself for its own convenience, despite it being patently at odds with the cause of justice, which is what lawyers are supposed to help us with. It has given us the Post Office fiasco, which as far as I can see is entirely the fault of lawyers who were prepared to bury evidence and even, it seems, advised, burying evidence.

The human duty of everyone in this inquest is to find out why things went so wrong. Not to take sides.

The primary professional duty of every lawyer remains the same, @Jonathan Edwards and that it to represent the interests of your client, as instructed, even if those are personally distasteful.

Lawyers also have an overriding duty to the court to act professionally and to assist the court at all times. Finally, there is the ultimate personal duty to act with honesty and integrity.

It can be a difficult balancing act but one which is undertaken by every lawyer on a regular basis.

While the duty remains the same, the environment may vary. The tone of proceedings is very different as between different types of court - criminal, civil, tribunals, inquiries, inquests - each has its own purpose. The tone and atmosphere is set largely by the judicial/quasi-judicial person in charge.

Some proceedings are primarily adversarial, others are investigatory. The focus may vary but the duties remain the same.

An inquest is a collaborative exercise but is still required to establish facts. This necessitates testing the evidence in cross-examination. Personally, I wasn't keen on the style of counsel for the RD&E but there was nothing inappropriate about it. Had there been, the coroner would have stopped it immediately.

It is quite right to say that, historically, there are many examples where lawyers have failed horribly in carrying out their duties, often with catastrophic consequences.

Doctors are required to treat "without fear or favour". If doctors are asked to save the life of a mass murderer do they refuse?

********************

FYI: I was called to the Bar of England and Wales in 1987. I practised as a barrister in different areas of law until 2000 (when I became too ill to continue). I still retain my membership of the Bar Council (the Bar professional body) and I keep up to date with developments.

For the last ten years, I have been a Visiting Scholar at Queen Mary University of London at their Centre for Commercial Law Studies.

My husband is a retired judge who sat in several different jurisdictions. His work involved frequent professional and moral dilemmas (as is the case for all members of the profession) which we discussed in depth on a regular basis. Examining such challenges is often painful but is essential in maintaining personal and professional integrity.
 
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Personally, I wasn't keen on the style of counsel for the RD&E but there was nothing inappropriate about it.

Finally, there is the ultimate personal duty to act with honesty and integrity.

To me that sums it up. It was ultimately inappropriate because it did not appear to show integrity. Dr Weir's credibility was being undermined in a way that might have been in the hospital's interest but not in the interest of a fact finding inquest. It looks very much as if some of the questions were based on a misreading of guidance that was only in the interest of the hospital to spin.

I have been on the receiving end in a court of law enough times to know how these things work.
 
Once the tube is transpyloric, ie beyond the gastric outlet and round the duodenum, there is reduced likelihood of food/fluid passing retrograde to the stomach where it might be aspirated with gastro-oesophageal reflux. The risk is not nil, but it's also not nil if patients are sitting at 90 degrees - it's entirely possible to reflux and aspirate in that situation, though less likely. But all of this is moot when the alternative outcome is certain death from starvation as you say. We have patients that we know aspirate constantly, they're still fed and we deal with the lung consequences as best as possible. Often chronic aspiration causes things like bronchiectasis, but surprisingly the number of acute pneumonias seems relatively low, though treated with antibiotics when it occurs; and even the chronic situation seems surprisingly tolerable for many years. (That scenario might be severe and progressive neurodevelopmental disorder with very limited life expectancy.)
Thank you & interesting - so there is a dataset i.e. derived from other illnesses. As you say - data seems to support better outcomes (tube feeding via tube without elevation) versus certain death from starvation - that seems to be a basis to develop a [NICE] policy supporting tube feeding in these specific circumstances?
 
I would think it would be reasonably straightforward to modify an existing guideline - perhaps from another disease rather than general purpose - and cover off the specific features relevant to very severe ME/CFS.

It's probably not that much, principally stick with an escalator from nutritional modification -> NGT -> NJT -> PEG -> GJT -> PN -> TPN. But then make it clear that the risk of death from starvation outweighs the risk of death from aspiration, noting that the patient will usually have competent gag/cough and can protect their airway better than eg post-stroke or neurodevelopmental impairment. I don't know about the idea of an IV fluid bolus to temporarily overcome OI so that the patient can elevate their head even 20-30°, but one could trial this if IV access allowed.

I think if this were instituted we might even prevent any further loss of life directly from starvation itself. There were people commenting in the reddit thread posted earlier writing that they had been in this situation with VS ME/CFS and TPN-dependent and recovered to be able to eat normally (and post on Reddit).
 
That Reddit thread is toxic nonsense
not all of it
As a doctor with ME who has been bedbound because of it, this could easily have been me. It doesn’t matter how much you know, if the healthcare staff you see don't believe you, all you can do is suffer, go back again and again and pray someone believes you eventually, which isn't the easiest thing to do when you're too fatigued to sit up and get post-exertional malaise after appointments whilst you're being told to do graded exercise at best. I beg all of you to truly question your own biases and listen to your patients. This condition is a hell I wouldn't wish on anybody. If you'd like to know more from a colleague with ME, I'm happy to chat about my experience.
 
Drs seem great at refuting suggestions for treatment, but clueless at resolving medical problems.
I recall the image of a Pilipino nurse offering a surgeon a tracheostomy tube as a patient was dying on the operating table - had the surgeon carried out the tracheotomy then the patient would have survived*. OK this Doctor is giving evidence to an inquest but it seems the shutters are down.
Seems Maeve may have died because the-
  1. system was based on other circumstances; and
  2. Doctors didn't feel enabled to ignore the RCP guidelines i.e. -
  • either tube feed (while lying flat) or give give nutrition by another means; and
  • report the deviation, from the RCP guidelines, to the RCP, i.e. to identify that they were unfit for these circumstances.

As others have said - the inquest should focus on how the system failed and what is required to avoid that happening in the future.

*I'd recommend this i.e. to provide insight into the system.

Why Do Doctors Fail?
The Reith LecturesDr Atul Gawande
https://www.bbc.co.uk/programmes/b04bsgvm
 
I would think it would be reasonably straightforward to modify an existing guideline - perhaps from another disease rather than general purpose - and cover off the specific features relevant to very severe ME/CFS.

It's probably not that much, principally stick with an escalator from nutritional modification -> NGT -> NJT -> PEG -> GJT -> PN -> TPN. But then make it clear that the risk of death from starvation outweighs the risk of death from aspiration, noting that the patient will usually have competent gag/cough and can protect their airway better than eg post-stroke or neurodevelopmental impairment. I don't know about the idea of an IV fluid bolus to temporarily overcome OI so that the patient can elevate their head even 20-30°, but one could trial this if IV access allowed.

I think if this were instituted we might even prevent any further loss of life directly from starvation itself. There were people commenting in the reddit thread posted earlier writing that they had been in this situation with VS ME/CFS and TPN-dependent and recovered to be able to eat normally (and post on Reddit).
Thank you for this - I think it's important i.e. since it moves things on from unacceptable outcome towards a more acceptable/better outcome -- it shows an improvement (on the status quo) is possible +++.
 
Not sure if this has been shared but a good report of today’s proceedings in the Independent:

“Doctors held ‘outdated’ views about ME, inquest into sufferer’s death hears”:
https://www.independent.co.uk/news/uk/exeter-nhs-b2585294.html
Similarly titled item from BBC website - sorry if it's already been shared - I can't keep up!

https://www.bbc.co.uk/news/articles/cp38pkvknelo

Extract:

"Dr Willy Weir, a retired NHS consultant and expert in ME, said he had urged bosses at the Royal Devon and Exeter Hospital to readmit Maeve Boothby-O’Neill for life-saving treatment.

The 27-year-old died at home in Exeter in October 2021 having had the illness since the age of 13.

The retired consultant told the hearing in Exeter that he had written to the chief executive of the hospital on 9 September expressing his concerns about her case and the “outdated” views some doctors held about ME.

'Seriously damaging effect'

He wrote: "Consequently, patients with this condition have frequently been regarded as perversely inactive without any regard for the possibility that their inactivity is not due to deliberately perverse behaviour.

"This can lead to completely inappropriate management of someone genuinely severely affected by a condition with demonstrable organic pathology."
 
The primary professional duty of every lawyer remains the same, @Jonathan Edwards and that it to represent the interests of your client, as instructed, even if those are personally distasteful.

Lawyers also have an overriding duty to the court to act professionally and to assist the court at all times. Finally, there is the ultimate personal duty to act with honesty and integrity.
My understanding is that lawyers have a professional and legal duty to not mislead the court or others, which overrides their duty to their client. Is that correct?

I assume there are times when a lawyer may cross-examine a witness with a question to which the lawyer knows the correct or optimal answer (which [would] lead to the truth) but hopes that the witness may be caught out and not be able to answer correctly or optimally, which may benefit the lawyer’s client at the expense truth.

In such circumstances, does the lawyer have any legal or professional duty to provide the coroner with any information they have which would lead to the truth, even if it disadvantages their client?

In this regard, is there any difference in the duties of a lawyer acting in an inquisitorial inquest as opposed to an adversarial trial?

[Edit: wording in square bracket]
 
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Dan Wyke on twitter “Dr Roy’s argument seems peculiar - we couldn’t give a dying person TPN because it’s dangerous” (Dan’s paraphrasing)
Sarah Boothby is questioning Dr Roy about contingency if the NG failed
 

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