A Deeper Dive into the Inquest’s “Findings and Conclusions”

By David Tuller, DrPH

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 22^nd, 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 sessioin on September 27^th 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 27^th 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.

**********

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 burden 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 9^th 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.)

…”

(View the original post at virology.ws)