By David Tuller, DrPH
UPDATE: Sarah Boothby, Maeve’s mum, has commented on this blog. I have posted that comment here.
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Last Friday, August 9th, assistant coroner Deborah Archer read in court her “findings and conclusions” in the inquest into the death of Maeve Boothby O’Neill, the 27-year-old woman from Exeter, UK. Three hospitalizations in the months before Maeve died in October, 2021, failed to resolve her failing nutritional status. Over the course of two weeks starting on July 22nd, Archer heard testimony from 18 witnesses involved in some way in Maeve’s case. (Or sitting in for someone involved in some way in Maeve’s care.) She also reviewed 6,400 pages of evidence.
The text of Archer’s “findings and conclusions” became available earlier this week. In her account, which runs to more than 25,000 words, Archer reviews the details of Maeve’s three hospital admissions, and events before and after. She concludes the “medical cause of death” was “malnutrition because of severe myalgic encephalomyelitis,” and further that “the Deceased died at home…after three admissions to hospital were unable to treat the consequences of her severe Myalgic Encephalomyelitis.” Beyond that, she absolves the Royal Devon and Exeter Hospital, as well as the various clinicians who had a role in treating Maeve, of responsibility for causing or contributing to her death.
(Archer also absolves the Devon County Council, which oversees social care services, but that’s a separate issue. And she finds that the evidence does not rise to the level required for a violation of Article 2–the right to life–of the European Convention on Human Rights, or to the level required for “neglect” to be considered a factor in the death.)
In fact, the testimony revealed a complete lack of understanding of ME among almost all the health care providers, whether based at the hospital or in the community. This lack of understanding appeared to lead to some questionable medical decisions in the last months of Maeve’s life, even as she begged to be fed. Many of the details have been recounted in widespread coverage by The Times, The Guardian, The Telegraph and other news organizations. It isn’t surprising that patients and carers who have followed the case closely felt dismayed, distressed and confused by Archer’s decision not to hold anyone (or any actions or inactions) accountable.
However, a more thorough review of the full text confirms the observations of barrister, academic, media expert, and longtime ME patient-advocate Valerie Eliot Smith, whose comments about the “findings and conclusions” I posted on Monday. Given the coroner’s remit and the evidence before her, the results are more or less what could have been expected.
At the same time, Archer’s account raises significant concerns regarding how Maeve’s case was handled. In multiple passages, she indicates that she is seriously considering issuing what is called a “report to prevent future deaths” under Regulation 28 of the prevailing legal codes. To that end, she has scheduled a court session on September 27th to hear testimony from the hospital’s medical director, Dr Anthony Hemsley. As she writes:
“In making the findings that I have I hope that important lessons for the future treatment of ME can be learned from her [Maeve’s] death. No doubt with the benefit of hindsight things would be different in many respects and I look forward to considering these issues with Dr Hemsley on 27th September 2024 in the hope that future death from this disease may be prevented in the future.”
Given this statement and others, Archer seems to appreciate the need for further action. Perhaps Dr Hemsley’s testimony will include viable and robust suggestions on how to avoid such terrible situations.
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Operating within constraints
In assessing Archer’s “findings and conclusions,” it is helpful to consider the constraints of her position. Her role was to identify the factors potentially causing or contributing to Maeve’s death and to determine if they met a specific standard of proof. As she explains:
“For causation to be established, the threshold to be reached is that the event or conduct that is said to have caused the death must have more than minimally, negligibly or trivially contributed to it. That question is to be determined on the balance of probabilities. Combining the threshold for causation and the standard to which it must be established, the question is whether, on the balance of probabilities, the conduct in question more than minimally, negligibly, or trivially contributed to death.”
This standard requires a weighing of multiple elements—not an easy task in any event, and much less so in a complex case like Maeve’s, with competing versions of medical reality. The witness list did not include any independent experts on ME. (Dr William Weir is an ME specialist, but he testified as someone directly engaged in Maeve’s care.) Nor did the list include independent experts on tube-feeding, orthostatic intolerance, and other relevant issues.
At an earlier stage, Archer had suggested calling Dr Alastair Miller, a die-hard member of the CBT/GET ideological brigades, as an expert witness. Fortunately, that proposal was abandoned. (My understanding, and this could be wrong, is that the participating parties need to agree on expert witnesses.) In any event, the inquest process did not seem to offer the coroner the chance to vet the accuracy of the available evidence by soliciting the opinions of independent experts.
Nonetheless, Archer’s account makes clear that she is aware of some of the concerns raised about Maeve’s treatment, especially with the benefit of hindsight. (The word “hindsight” appears seven times in the document.) However, she has determined that the evidence on hand did not rise to the threshold required to find that these factors caused or contributed to her death.
For example, in reviewing the first hospital admission, which took place in March, 2021, Archer highlights the failure to appoint a single health care professional to take overall charge of Maeve’s care, as recommended in the then-in-force 2007 guidance for CFS/ME from the National Institute for Health and Care Excellence (NICE); the failure of the hospital to promptly notify Dr David Strain, an affiliated physician with knowledge of ME, about Maeve’s presence; and the failure at that point to seriously consider nasogastric (NG) tube-feeding. Among her findings about this admission:
“I do find that as soon as concerns were starting to be raised about the need for Maeve to be in hospital a named health care professional should have been appointed to co-ordinate the service for Maeve as per the 2007 Guidelines…I also find that the failure to do so and the failure of the first admission to alert Dr. Strain to a patient with severe ME caused a delay in professionals recognising how potentially serious the situation could be and resulted in Maeve using up her rapidly diminishing energy envelope which set her on her final downwards trajectory. With the benefit of hindsight only, if medics had known that Maeve would deteriorate to the point of not being able to tolerate food and drink at all, it may have been that an early NG tube would have been appropriate.”
However, Archer further states that she cannot determine whether such factors would have made “a material difference to the outcome.” As she concludes about the itemized lapses, “I cannot say that these factors caused or contributed to her death to the relevant standard although they are important to note.”
Similarly, in discussing the third admission, she makes the following points regarding orthostatic intolerance (OI) and other concerns:
“After listening to all the evidence, I do find that there was a delay in Maeve receiving her NG tube after the decision was made to do exactly that on 9th July 2021. The delay was caused by attempts to try and ask her to sit up which frankly exhausted her. I also find that it having been recommended by Dr Roy [the consultant gastroenterologist] that to sit up her OI needed to be managed she did not receive her dose of fludrocortisone [medication prescribed in an effort to control the OI] at all during this stay which may have enabled her to do exactly that. I was not assisted by the lack of clarity over what she was and wasn’t eating and how it was administered and I do think that there was a lack of understanding within the body of staff who treated Maeve over their understanding of how her energy envelope was being continually eroded by the necessary treatment she was receiving.
“The overall question though is: did these facts cause or contribute on the balance of probabilities, more than minimally, negligibly, or trivially to Maeve’s death. ME, unlike other disease processes with which I am used to grappling is a disease for which there is no cure and is also of unknown aetiology. In other cases, I could be confident in saying if she had of [sic] been prescribed X then the effect would have been Y. If the treatment was A then the outcome would have been B…The best I can do is to say that the factors…‘may’have contributed in some way to her death which means in law I am not able to make a finding that they did so on the balance of probabilities.”
In other words, when it comes to implicating something or someone in a death, the coroner requires more definitive evidence than is represented by the phrase “may have contributed in some way.” However, in the same passage, Archer reiterates her determination to pursue the matter further:
“Notwithstanding this [her findings regarding this admission] I will want to look at these issues at the next stage of the inquest which is where I consider whether I should make a Report to prevent further deaths under Regulation 28 of the Coroner’s and Justice Act.” Elsewhere she writes: “Again with the benefit of hindsight and looking to the future it may be that different policies and procedures will now need to be considered to manage ME into the future.”
In sum, Archer’s inability to find fault per the applicable legal metric does not mean she is blind to the need for “different policies and procedures.” The facts themselves, as presented in her “findings and conclusions,” make a compelling argument for the need for a Regulation 28 report to prevent future deaths. Nothing she has written should preclude Archer from being able to propose a strong set of recommendations. (Of course, that doesn’t necessarily mean that she will.)
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Thanks for this deeper dive, it’s very helpful. It appears that the coroner thinks that the NICE 2007 Guidelines for ME should have been followed so presumably would expect the NICE 2021 guidelines to be followed in the future. (I wonder if things might have been different if the latest guidelines been published not so long after the draft was.) The coroner also seems to have concluded that there was a lack of understanding by staff as to how ME can potentially play out, but did she ever consider that doctors and healthcare staff might have been positively following risky guidance or advice apart from the NICE guideline? Was this possibility ever explored? Going forward, it would be an improvement if doctors were told/warned that they need to follow the latest NICE guidelines for ME in such cases, but what if the symptoms are very similar but doctors dispute an ME diagnosis? How will those patients be protected?
Thank you David for helping to make sense of a very long conclusion.
I was listening but I was very fatigued that day as recovering from Covid no.4🙄 and I did drift in & out of sleep.
With brain fog too, it’s quite hard for me these days to understand what I call complicated documents!
I think many of us in the ME community felt disappointed after the coroner’s conclusion. I do however understand her limitations by law but also she hasn’t experienced first hand or been in close contact to receive or observe the behavior of some doctors that we as pwME have come across.
Personally, I feel battered and bruised from all of the significant events this year with women either not receiving feeding tubes or it being a fight to acquire a tube in order to sustain life.
Although later that evening I posted a hopefully morale boosting message for our community I do have to confess that I’ve felt quite low in mood these past few days.
I’m currently having investigations as to why my gut is so painful when I eat. I become bloated, nauseous & experience reflux & heartburn. I’ve lost count of the tests & procedures I’ve had this year both privately and the NHS. Like Maeve I have a great GP but she can only refer me to ‘experts’. I have one more procedure left, a sigmoidoscopy but unfortunately I feel it is linked to my severe ME as I have MCAS.
My GP called me yesterday to see how I was doing and we discussed Maeve. She has followed the inquest herself. After we had discussed what options were left to explore to ease this predominately constant pain we chatted about tube feeding. I shared that I’d always had it in my head that if I ever need a feeding tube that I’d refuse it. I’d accept iv fluids but that’s all. Not once have I ever thought until this year, until this past weekend that I wouldn’t have a choice. She asked me how do I feel about tube feeding now follow the events of this year including Maeve, and I replied frightened.
Early last year in March 2023 I overdosed because after having a brief spell of improvement I had become severe and bed bound. I had been infected with covid twice within a three month period. I really didn’t want to live like this anymore. This was my third short lived improvement in the past seven years that I had become severe. I found it very hard to accept psychologically the reality of being back in one room 24/7. It took me just under five months to get back into the groove of living like this and I have promised my family that I’ll never do it again because I could see how much they wanted me to live no matter how much care I needed from them.
Now, I want to live even if I stay in this bedroom, even if I can’t attend my daughters wedding (whenever that’ll be), even if I never go on holiday again but to have that choice removed from me like it was for Maeve is unconscionable. One suitable option for feeding whilst prone is TPN as the feed goes directly into the bloodstream via a PICC line, the same way many people with cancer receive their chemotherapy but it was deemed too risky because she might get an infection! An infection versus death from starvation! Well, it seems an easy decision to me especially as I’ve nursed patients (albeit a very long time ago) in that position. Yes they were in hospital but there are many people at home receiving TPN. Would the procedure caused PEM, yes most likely but she’d still be alive. I asked Whitney Dafoe’s mother Janet if he had received feeds lying down and she wrote back yes. Whitney himself responded stating how it was done for the first few months of his illness until he had a permanent tube placed into his gut. He even wrote to the coroner explaining all this as a patient expert.
So, my heart remains heavy at the moment for the future of severe & very severe people with ME. This issue plus the psychologising of patients that we’ve heard about this year and that many of us have experienced is very disconcerting. However, I am very glad to hear that the hospital Maeve attended has now reviewed their protocol of care for very severe ME patients of which Sarah, Maeve’s mother promoted on GMB yesterday morning stating that other hospitals could receive advice & support if they did not know how to care for a severe/very severe patient.
So, we look forward in anticipation to the final part of the inquest next month where hopefully the coroner will set out a series of recommendations to prevent future deaths of this nature. As Dr C Shepherd stated in the interview with GMB, no patient with ME should die of malnutrition! I certainly say Amen!
I sincerely hope that the future will be brighter for severe patients with these problems. Many thanks to Fiona for sharing the above.
Lots of words and philosophizing. . Seemingly no electron microscopy of tissues of brain liver or GU tract. Why no measurements of nutrient densities and analysis of heavy metal? We use mass spec to measure a plethora of synthetic chemical in public water. Why not in these mysterious ME cases? Vitamin D?
I hope somehow to focus on the fact that if Maeve had agreed to lie to medical staff and (falsely) “admit” she had mental illness and give up all of her autonomy over her body, she would have been prescribed treatments to save her–including critical nutrition. But because she wouldn’t lie and let people who had continually harmed her and made her decline completely control all of her decisions, she was killed with lack of proper medical care.
How does a coroner hear that–“If she had just agreed she was mentally ill, we would have and could have saved her life. But because she has Myalgic Encephalomyelitis, we refuse to provide proper, life-saving medical treatment.” How does the coroner hear that and not recognize the despicable bias and negligence on part of the hospital personnel? Think about that. “We would have saved her if she had a mental illness, but someone with Myalgic Encephalomyelitis is not worthy of saving.”
This is manslaughter.
And why is there not one attorney in Great Britain who would help?
Thanks for your insight, Dr. Tuller.
“the question is whether, on the balance of probabilities, the conduct in question more than minimally, negligibly, or trivially contributed to death”
If inquests can only find individuals responsible for ‘the conduct in question’ then Article 2 will only ever apply if a person dies in custody. Maeve’s death represents the systemic failure in UK health and care provision for any person with ME. I am no lawyer, and struggled throughout to find anyone with practical knowledge of inquests to advise me. As a qualified social worker I am familiar with the duties of state employees under the Human Rights Act (1998). Even when the Coronavirus Act was implemented in order to justify removing so many of our rights during the SARS-CoV 2 pandemic, Parliament agreed nothing in it could be enforced that would breach the Human Rights Act. In disclosure hospital records show Maeve’s right to a private and family life (Article 8) for example, was considered in the context of her wish to be discharged home without a plan in place to provide the care she could not get in hospital and that I could not provide without help. Devon County Council has a duty to assess, plan for and protect from harm every vulnerable adult. The hospital would not have agreed to discharge if Maeve had been medically unfit – they would have been found negligent if they had. Why Archer chose not to investigate how discharge into the community was not met by the assessments that had been explicitly agreed between the ward matron and social work managers is a mystery. How is it that Community Social Services, ie statutory services bound by the Human Rights Act as the supreme consideration, was not found to have contributed to Maeve’s premature death. If that were true, Maeve would not have been taking DCC to judicial review for failing in its statutory duties to her. She died first, as would anyone else at such high risk who relies upon litigation to protect them. This is why we have this legislation, to assist in the prevention of deaths. Hospitals depend upon local government to make discharge home safe. It could have been made safe, indeed with a social worker alongside Maeve and me, I know death from malnutrition would have been prevented. We had an outstanding GP. We needed a competent Social Worker because they have the power to bridge the gaps between hospital and community care. Yet none was assigned, not accidentally but by design.
For a short time my faith in English law was restored by the disclosure of so much evidence. I trusted the Coroner when she said she had reviewed it all. I have reviewed it all and know what has been left out. Narratives are created by the order of the telling, what we include and what we leave out, the authority given to one character over another, the sympathy shown to the differing points of view. The full story of how Maeve died is what I had hoped the inquest would tell, founded on facts in disclosure and knowledge of ME. I hoped for too much, again. Again I am obliged to accept adequate funding for biomedical research – that produces verifiable evidence of disease – is the only route to us acquiring enough expertise for enough people to know how to safely manage ME. Maeve knew and understood this. She died because she knew more about ME than anyone she ever met. Even Dr Weir could not understand why 3g l-Carnitine daily had helped slow her descent into the living hell of very severe ME – but she did. She was a fine scholar, and a good teacher. That English law cannot learn from how she died as a direct result of institutional neglect, and that this is a Human Rights matter, exemplifies the waste this country made of her. It was my great privilege to have known her. I wonder if Archer had had the chance to meet Maeve if she could have inferred self neglect as her findings do.
Just because it’s English law doesn’t mean that it’s done correctly or that it doesn’t need reforming.
I believe this sad case as indirect discrimination involved; which really cant be disputed, as they pretty much admit to it in the statements they make.
This breaks the 2010 Equality Act – Civil Case
I believe its also likely she faced direct discrimination, which also breaks the equality act. No doubt they will try to argue against this but some of the statements made, may lead you, to that thought process. If she was dismissed and sent back home upon first hospital visit. It also suggests a direct discrimination argument.
I believe gross negligence manslaughter (GNM) is another argument that could be made upon them ignoring Dr. Weir (The Expert) and then later altering their protocols for Alice Barrett in order to prevent her untimely death. Thats an admission the last ones were wrong or flawed/inappropriate for M.E.
Exeter ME patient’s hospital care changed after campaign
https://www-bbc-co-uk.cdn.ampproject.org/v/s/www.bbc.co.uk/news/uk-england-devon-64830022.amp?amp_gsa=1&_js_v=a9&usqp=mq331AQIUAKwASCAAgM%3D#amp_tf=From%20%251%24s&aoh=17238470266672&referrer=https%3A%2F%2Fwww.google.com
Get a solicitor!
Wouldn’t it be great if, as a rule of thumb, UK public servants (whether that’s NHS staff or legal people or whoever) were taught to ask themselves if they would act the same way if it was a member of the Royal family who there were dealing with? If our Royal family serves any purpose, then I think it should stand as such a mental comparator to help create a truly equal country where public servants treat everyone without prejudice and discrimination. If that’s not possible then public servants should be duty-bound to explain why the service they provide is falling short and not to cover up for systems/organizations that are failing those they are meant to serve.
Ryan, when neglect can be impugned to the State it comes under the Human Rights Act (1998) in England. The Equality Act (2010) applies to goods and services provided by individuals. The case is of direct discrimination by both NHS England and Devon County Council, for refusing to provide services under the Department for Health and Social Care. Rt Hon Sajid Javid was Secretary of State for Health and Social Care and had the power to make the announcement he did in May 2022. I have been talking to lawyers about this since 2018. Three of those years have been swamped by an inquest into the premature death of my only child in a rural province that has not a single lawyer practicing either Human or Civil Rights. Maeve and I wanted to live somewhere else, but there is nowhere else on Earth that knows how to treat ME. Without that knowledge, she was going to die with it. Everyone with severe ME needs faster action on medical understanding and biomedical research than bringing a case to court can achieve. It will help change the narrative, as the inquest has to some degree. I remain commited to that in any eventuality.
In solidarity with Maeve’s family, I am respectfully sharing a free, short, hopeful manuscript HOME ALONE 2020 with 10 years of research. I too faced “malnutrition” (aka starvation) with Severe ME so the information may be helpful to other patients and caretakers: https://drive.google.com/file/d/1o4lxpF2-fv1Z5mmzDN0X6TzY_jlFCpwh/view?usp=sharing
Thank you Sharleen, I have downloaded your file but not read it yet. fwiw, we used Lomatium and tried acupuncture. Acupuncture exacerbated symptoms and where we live there are no herbalists. One acupuncturist she saw said there was too litle chi and Maeve said she felt dead with the needles he used. That was in 2010! She was outstanding in cognitive ability (top 3% for verbal reasoning, so well within the margin of error for a test score) and never lost the power of speech or her swallow, but never had the power of either for long enough to get herself heard and nourished on a liquid only diet with so very many doctors arguing and not knowing what they were dealing with. After her chew muscles gave up, she needed a tube to stay alive. If I had abandoned her, as social services wanted me to, she would have entered the semi-permanent ME crash experienced by most with very severe ME (cf Whitney Dafoe, blog posts and published papers) as they approach death. Had that happened, Archer’s findings imply medics would have force-fed her by NG, which would have been vomited. They would then been justified in following the ‘least invasive’ route until deciding it’s not worth PN feed in someone so unwell – as they are doing with another young woman (Karen Gorden, 35) in a hospital as I write. Hospitals deal with death every day. They rarely dealt with very severe ME before the pandemic. The evidence to be given on 27 September suggests some doctors are realising there will be more Maeve’s unless there is a national policy for preventing death by malnutrition in cases of very severe ME. The problem remains a complete dirth in any published research on why ME causes the muscles to fail – including smooth muscle in the digestive tract which may be responsible for the MCAS like symptoms experienced by so many.
Thanks again for taking the time to share your own experiences in so much depth. There is so much in our collective history that has been lost to the drivers of profit and positivism. It is very valuable to me to learn how my lovely daughter died. She was such a great gift to the world and a joy to me. I wish she could have known more of the goodness in this life, and given more of what she had to offer humanity than this terrible story of modern medical failure.