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

ME/CFS Skeptic said:
Do not want to minimise the risk of sepsis but here's for example what a review on long-term TPN says:
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Here some quotes from reviews on NJ, PEG, PEG-J and Jejunostomy feeding tubes.

Gastrostomy and PEG
PEG is a safe and effective procedure even if performed in fragile patients
Percutaneous endoscopic gastrostomy and jejunostomy: Indications and techniques - PubMed (nih.gov)

Tube feeding via a gastrostomy is generally considered safe in patients who have had stroke or neurosurgery, as well as in patients with motor neurone disease […] Even in the presence of high risks, gastrostomy may be justified where there is no safer alternative to longer-term nutrition support.
Reduced 30-day gastrostomy placement mortality following the introduction of a multidisciplinary nutrition support team: a cohort study - PubMed (nih.gov)

The high 30-day mortality rate for PEG insertion noted in several studies reflects the severity of underlying co-morbidity, with dementia, severe cardiac failure and a history of pneumonia being particularly associated with poor survival. Direct procedure-related mortality rates are low; typically less than 1% in most recent series.
The provision of a percutaneously placed enteral tube feeding service - PubMed (nih.gov)

PEG insertion is generally considered to be a safe endoscopic procedure. However, pre-procedure and post-procedure management is important […] Most complications are minor, and wound infections are common; however, major complications such as bleeding, buried bumper syndrome, colocutaneous fistula, perforation, volvulus, and injuries to other organs may occur.
Percutaneous Endoscopic Gastrostomy: Procedure, Complications and Management - PMC (nih.gov)

Jejunal feeding
[On gastroparesis] With regard to nutritional support, consensus has been reached that nasoduodenal tube feeding should be considered in case patients have significant weight loss (5%‐10% in, respectively, 3‐6 months), are unable to achieve their target weight, or when repeated hospital admissions for malnutrition or dehydration are necessary […] Our analysis revealed only minor complications using PEG‐J (with replacement of the tube in 16% of patients)
Therapeutic strategies in gastroparesis: Results of stepwise approach with diet and prokinetics, Gastric Rest, and PEG-J: A retrospective analysis - PubMed (nih.gov)

Our analysis shows that jejunal feeding by DPEJ or PEG-J has high clinical and technical success with good patient tolerance and safety outcomes with a similar technical and clinical success profile
Direct percutaneous endoscopic jejunostomy (DPEJ) and percutaneous endoscopic gastrostomy with jejunal extension (PEG-J) technical success and outcomes: Systematic review and meta-analysis - PubMed (nih.gov)

A surgically placed feeding jejunostomy tube (JT) is well-established to provide a secure route for enteral nutrition to patients suffering from malnutrition […] even though the complication rates are not minimal after JT placement, they are not extremely morbid and can be overcome with safe treatment methods
Complications of feeding jejunostomy placement: a single-institution experience - PubMed (nih.gov)

DPEJ is associated with a high technical success rate (90 %), a relatively low rate of peri-operative adverse events (13 %) and an improvement in long-term nutritional support in the majority of patients (90 %).
Long-term outcomes of direct percutaneous endoscopic jejunostomy: a 10-year cohort - PubMed (nih.gov)

In summary, DPEJ is a useful technique to gain access to the jejunum for long-term nutritional support when gastric feeding is not appropriate or not possible. […] DPEJ was associated with a moderate or severe complication in ∼10% of cases. […] patients and physicians should be aware of the risks involved.
Direct percutaneous endoscopic jejunostomy: outcomes in 307 consecutive attempts - PubMed (nih.gov)

DPEJ is considered a safe and feasible method of access for enteral feeding as well as PEG.
Prognostic outcomes after direct percutaneous endoscopic jejunostomy in elderly patients: comparison with percutaneous endoscopic gastrostomy - PubMed (nih.gov)

DPEJ is a successful and safe procedure that effectively provides access for EN support in malnourished patients and patients with postoperative UGI cancer
Direct Percutaneous Endoscopic Jejunostomy: Procedural and Nutrition Outcomes in a Large Patient Cohort - PubMed (nih.gov)

DPEJ is a useful technique for gaining access to the jejunum for long[1]term nutritional support when gastric feeding is not appropriate or not possible.
Current considerations in direct percutaneous endoscopic jejunostomy - PMC (nih.gov)

General guidelines
Enteral tube feeding should be considered in patients with inadequate or unsafe oral intake with a functional and accessible gastrointestinal tract. […] If oral intake including supplements is inadequate a nasogastric tube may be tried and failing that a nasojejunal tube. Occasionally if the nasal tube becomes frequently displaced a gastrostomy or jejunostomy may be needed to enable the patient’s nutritional needs to be met.
Supporting people who have eating and drinking difficulties – RCP London

Patients with recurrent pulmonary aspiration of feed should receive post-pyloric feeding with placement of a PEGJ or DPEJ. (Evidence level III, strength of recommendation C.)
The provision of a percutaneously placed enteral tube feeding service | Gut (bmj.com)

Healthcare professionals should consider enteral tube feeding in people who are malnourished or at risk of malnutrition, as defined in recommendations 1.3.1 and 1.3.2, respectively, and have: inadequate or unsafe oral intake and a functional, accessible gastrointestinal tract.
NICE 2017 nutritional support for adults, oral nutrition support, enteral tube feeding and parenteral nutrition.pdf
 
I realise that severe ME and not being able to sit upright might cause additional difficulties setting up a feeding tube safely. But the patients described in these reviews were very ill as well, with for example stroke, cancer or dementia that also increase the risk of complications such as aspiration.

The bad reviews that push back against using feeding tubes in patients with 'functional disorders' seem to come from UK researchers Simon Lal and Peter Paine. They argue that tube feeding should not be used to treat the symptoms of these disorders and only to correct severe malnutrition. They also make a case that total parenteral nutrition (TPN) should be avoided and only used as a last resort because of the risk of sepsis. Both are reasonable in my view. What I disagree with is that they try to argue that severe weight loss in functional disorders might not be involuntarily or that doctors should first try multidisciplinary rehabilitation before using feeding tubes. They also speak of 'de-escalating medicalisation of therapies, including jejunal feeding' which might be where Roy got the idea.

Jejunal feeding: when is it the right thing to do? - PubMed (nih.gov)

Avoiding the use of long-term parenteral support in patients without intestinal failure: A position paper from the European Society of Clinical Nutrition & Metabolism, the European Society of Neurogastroenterology and Motility and the Rome Foundation for Disorders of Gut–Brain Interaction - ScienceDirect

The management of adult patients with severe chronic small intestinal dysmotility - PubMed (nih.gov)
 
Kitty said:
It's a lot to ask, though, given that they're lost their child in such traumatic circumstances and then had to deal with the inquest. And done so much groundwork before and during the hearing, too.

I hope the pressure comes off them now. They may need time to grieve all over again.
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Totally. Just to clarify I wasn't remotely suggesting any pressure to do so and my empathy and thoughts are with the family.

This comment was in response to someone posting that Sarah was asking for legal help on the verdict on Twitter and the impression that Sean seems like he has a specific aim in mind if he Times article headlines are anything to go by.
 
ME/CFS Skeptic said:
I realise that severe ME and not being able to sit upright might cause additional difficulties setting up a feeding tube safely. But the patients described in these reviews were very ill as well, with for example stroke, cancer or dementia that also increase the risk of complications such as aspiration.

The bad reviews that push back against using feeding tubes in patients with 'functional disorders' seem to come from UK researchers Simon Lal and Peter Paine. They argue that tube feeding should not be used to treat the symptoms of these disorders and only to correct severe malnutrition. They also make a case that total parenteral nutrition (TPN) should be avoided and only used as a last resort because of the risk of sepsis. Both are reasonable in my view. What I disagree with is that they try to argue that severe weight loss in functional disorders might not be involuntarily or that doctors should first try multidisciplinary rehabilitation before using feeding tubes. They also speak of 'de-escalating medicalisation of therapies, including jejunal feeding' which might be where Roy got the idea.

Jejunal feeding: when is it the right thing to do? - PubMed (nih.gov)

Avoiding the use of long-term parenteral support in patients without intestinal failure: A position paper from the European Society of Clinical Nutrition & Metabolism, the European Society of Neurogastroenterology and Motility and the Rome Foundation for Disorders of Gut–Brain Interaction - ScienceDirect

The management of adult patients with severe chronic small intestinal dysmotility - PubMed (nih.gov)
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This sounds like what @Jonathan Edwards was musing on.
 
Robert 1973 said:
Dr Weir has a great deal of experience of seeing ME/CFS patients of all severities over many years. He is also well-liked by patients. However, I think there are legitimate concerns about some of his testimony. Unevidenced biomedical claims need to be subjected to the same degree of scrutiny as BPS claims. Challenging BPS theories and practices with unevidenced claims about biomedical mechanisms can be counterproductive.
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Yes, I do appreciate this but in all areas of medicine there is an opportunity to use "experimental" treatments which have an accepted rationale in the ME clinician community, based on the available science to date, especially people with very severe ME.

When people are in dire need of help (like M and many others), there is a place for recognition for these treatments. We are playing catch-up due to the lack of money and resources to have randomised control trials into things like increasing intravascular volume. The doctors could have had a sit-down together and worked out what they could try within an agreed framework. I do not believe this was done.

Both Dr Weir and Strain had their approaches completely dismissed from what I have read by all the treating consultants bar the last one who, (going by media reports), did consult Dr Weir who advised TPN and it appears Dr Fox would consider it based on a risk/benefit scenario (life-saving procedure) but in the end M chose to return home.

There is the difficulty with the direct pathophysiology but there is a wider body of symptomatic treatment given in other countries and is quite normal and medicolegally acceptable with proper informed consent. Maeve had full mental capacity on the three separate occasions it was tested. She could have consented to them. It may have made a difference in her ability to tolerate the NG. Changing the slope for feeding with the NG, which would have been suggested by Dr Weir and Helen Baxter was ignored. Then they did nothing further, when they had the top specialist in ME in the UK telling them what to do. They could have asked Dr Weir about other clients and what other hospital trust's do and even contacted a treating physician there to talk the situation over. That is very common to do in difficult cases in my country. I did it several times and it really helps put things into perspective. It does not seem they did any risk/benefit analysis for a NJ tube or a PEG.

I have no problem with scrutiny but it should be fair based on the current knowledge. I don't believe The Gastroenterologist's approach was based in science either, it was based on a belief that ME is a functional psychiatric disorder. Thus people with ME have nothing wrong with them so should not be offered a PEG.

The fact that many other people, who have commented on the thread, of Dr Weir having influence on other inpatient medical consultants, supports this. The consultants at this hospital were not willing to listen and try things that were safe.
 
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rvallee said:
The contrast with acute COVID is glaring. They tried everything, knowing that the outcome was death anyway. When doing nothing leads to death, there is an obligation to take more serious measures.

Many MDs who testified basically said that they had written her off as dead, that she was going to die regardless of what they did. Which is what should have compelled to go beyond the absence of explicit guidance.

Also it's absurd how the line is that a problem was there were no doctors with experience with ME, but they mostly ignored Dr Weir, who did. So they're painting a false narrative. Yes, there is a systemic, and deliberate, lack of ME experts. But there was one involved, actually more than one if we count Dr Strain. So they're arguing that there were no MDs with experience, even as they literally ignored the advice of such experts, because, and we know this is the case, they don't even believe that ME is a real thing anyway. Although from memory, I'm not sure if Strain advised for it.

This is all so impressive you'd think we're in 1984, rather than 2024. It's not as if anything changed since, other than actually getting worse anyway.
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Not in the UK they didn’t.
If you had a pre-existing condition and any care needs at all they said, in a much publicised public policy document that you wouldn’t be ventilated should you come to hospital and end up needing it. As they’d be saving these for all the “healthy” people dying of Covid instead.

Anyway they did ventilation for some elderly people some of whom survived, in case anyone wants to talk to me about disabled people and outcomes.
 
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Ash said:
I’d assumed that they would have got advice, privately no help from the system, to put together their evidence and decide what they would push with their questions priority wise.
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There was a picture of Sarah with a large pile of documents that looked very much like what you get in a box from a solicitor's office. Sean had the same sort of box with him when arriving at the inquest. Maybe that's coincidence but it may have been that they were not entitled to legal representation in the courtroom, despite the hospital being allowed. that would be typical of the system.
 
Jonathan Edwards said:
There was a picture of Sarah with a large pile of documents that looked very much like what you get in a box from a solicitor's office. Sean had the same sort of box with him when arriving at the inquest. Maybe that's coincidence but it may have been that they were not entitled to legal representation in the courtroom, despite the hospital being allowed. that would be typical of the system.
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Yeah, I think that they’re not allowed legal representation in a coroner’s courtroom.

My memory is hazy on how far in but now I think about it I think they got quite a way along before realising that had to get some advice for their prep. But that’s of limited help compared to people with institutional access to professional legal advice ongoing.

The solicitor bundles could have come from hospital solicitors.
 
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hibiscuswahine said:
Yes, I do appreciate this but in all areas of medicine there is an opportunity to use "experimental" treatments which have an accepted rationale in the ME clinician community, based on the available science to date, especially people with very severe ME.
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These rationales may be accepted in a 'physician community' but they are not accepted either by academic medicine or by the majority of physicians (who often tend towards BPS). They have no valid basis as far as we know. They are NOT based on available siren but on speculation, much of it rather naive.

I would agree with Nightlong that there seems to have been a confusion between the issue of access to 'experimental treatments' and access to standard life-saving care. There is not a scrap of evidence for the things Weir put in his letters being helpful - and I think that may have contributed to the problem. It also worries me that Dr Strain should mention experimental treatments as if they were relevant. They are not.
 
The other issue, after watching the ITV report yesterday, is that M was treated during Covid measures. No family could be with her. So that would have been an additional stressor for her not to have her mother there able to advocate for her as M did not have the physical capacity to do so at times due to the severity of her illness. I suspect M had problems communicating, due to the level of PEM, to staff. This is another example of her extreme vulnerability due to her disability that was not taken into account by the treating physicians or nursing staff.

From the evidence given here, when her mother came in to talk to the gastroenterologist, M was not part of that conversation and able to ask questions on the lack of treatment and what to expect from future treatment from the medical service of the trust. As we have seen she was not assigned to one consultant who would have followed her up in outpatients and for any further admissions but she was passed from one consultant to another.

There was no continuity of care and commitment to examine the decision to not give her a NJ of PEG if the nutritional drinks she was discharged on, did not work to improve her nutritional status and gain weight. New treating consultants would have to relearn her case without the benefit of knowing her and her mother. The outpatient DCC dietician was very concerned by this lack of specialist medical input but appeared to be in the same no-mans land with the GP.
 
Jonathan Edwards said:
These rationales may be accepted in a 'physician community' but they are not accepted either by academic medicine or by the majority of physicians (who often tend towards BPS). They have no valid basis as far as we know. They are NOT based on available siren but on speculation, much of it rather naive.

I would agree with Nightlong that there seems to have been a confusion between the issue of access to 'experimental treatments' and access to standard life-saving care. There is not a scrap of evidence for the things Weir put in his letters being helpful - and I think that may have contributed to the problem. It also worries me that Dr Strain should mention experimental treatments as if they were relevant. They are not.
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I will agree to disagree on that one Jonathan. There is difference between academic medicine and clinical medicine. But I do appreciate this is your culture not mine.
 
hibiscuswahine said:
I will agree to disagree on that one Jonathan. There is difference between academic medicine and clinical medicine. But I do appreciate this is your culture not mine.
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The NHS does not really do experimental treatment, except the odd surgery. Speculative drug prescription definitely not. But the NHS is always vulnerable to new directives instructing staff to BPS the bad spirits right out of patients, no evidence of positive outcomes required.
 
Jonathan Edwards said:
There was a picture of Sarah with a large pile of documents that looked very much like what you get in a box from a solicitor's office. Sean had the same sort of box with him when arriving at the inquest. Maybe that's coincidence but it may have been that they were not entitled to legal representation in the courtroom, despite the hospital being allowed. that would be typical of the system.
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That was just the evidence bundle for the inquest - from all parties, 6400 pages. Classic legal move, overwhelm with paper.
 
dave30th said:
I really would like to see a written copy of the ruling and understand better some of the thresholds for a coroner to be able to conclude evidence is sufficient for determining, for example, whether something did or didn't contribute to death. Sean's piece put a positive spin on what the coroner found in terms of moving forward, but is his piece just overlooking the negative aspects?
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I wondered if Sean wrote his article with the prevention of future deaths report in mind. As far as I understand, there is no appeal process and no way to change the verdict unless the coroner made a legal error, acted beyond her powers or made an irrational decision, or if new evidence came to light. From memory, he has suggested that the Regulation 28 report could be the most impactful part of the process in terms of improving quality of care etc for people with ME/CFS. I’m guessing that he may have calculated that highlighting the positives from the coroner’s conclusions and not criticising them was the best way to help achieve that objective.
 
Robert 1973 said:
I wondered if Sean wrote his article with the prevention of future deaths report in mind. As far as I understand, there is no appeal process and no way to change the verdict unless the coroner made a legal error, acted beyond her powers or made an irrational decision, or if new evidence came to light. From memory, he has suggested that the Regulation 28 report could be the most impactful part of the process in terms of improving quality of care etc for people with ME/CFS. I’m guessing that he may have calculated that highlighting the positives from the coroner’s conclusions and not criticising them was the best way to help achieve that objective.
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Yeah that would my guess.
No reason to rock the boat when so much is still on the line.
 
Robert 1973 said:
he has suggested that the Regulation 28 report could be the most impactful part of the process in terms of improving quality of care etc for people with ME/CFS. I’m guessing that he may have calculated that highlighting the positives from the coroner’s conclusions and not criticising them was the best way to help achieve that objective.
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Yes, I think he definitely thinks this and views the report as the most potentially impactful. I think both of them do, whatever disappointments they might have with the findings.
 
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