By David Tuller, DrPH
On Friday, Deborah Archer, the coroner in the inquest into the death of Maeve Boothby O’Neill, issued her factual findings. The bottom line: Maeve died from “malnutrition caused by severe ME.” Archer found that the Royal Devon and Exeter hospital and others involved in her care acted properly. She rejected the request of Maeve’s parents to deem the case a violation of Article 2 of the European Convention on Human Rights, which protects the right to life. She also ruled that Maeve’s death could not be attributed to “neglect” on the part of health care providers.
As documented in nine days of testimony, systemic deficiencies—such as the widespread lack of awareness and understanding of ME among clinicians—led to questionable decision-making, with negative impacts on Maeve’s care. Many in the patient and advocacy communities were therefore dismayed and distressed by the coroner’s conclusions. (I didn’t watch the event online, given the time difference with San Francisco; I hope to be able to read the text soon.)
Archer will hold another hearing on September 27th to consider whether to issue policy recommendations in what is called a “report to prevent future deaths.” Although the coroner’s findings failed to assign responsibility or blame, the facts as outlined themselves make a powerful argument for the need for major changes in medical education, training, practice and research. Hopefully Archer will choose to pursue this approach in the next phase. (Sean O’Neill, Maeve’s father, wrote a moving and thoughtful piece in The Times about the changes he’d like to see.)
In conducting inquests, coroners must follow various legal guidelines and parameters in determining what evidence is within scope, how that evidence should be weighed and assessed, what burden of proof should apply, and related questions. For a legal perspective on Archer’s findings, I turned for comment to Valerie Eliot Smith, a barrister, academic, media expert and long-time ME patient-advocate. Her blog can be found here.
(Valerie and I have known each other for a decade. I have often consulted with her on ME-related legal issues. When I wrote my initial investigation of the PACE trial in 2015, she and her husband, Robin Callender Smith, offered invaluable advice and also suggested the name “Trial By Error”–which has obviously stuck.)
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Valerie Eliot Smith on the inquest findings:
I listened to nearly all of the two-week inquest hearing, which started on 22 July 2024. It was, inevitably, an extremely emotional and intellectually challenging experience.
The coroner’s conclusion was as I had anticipated, as were her findings on the Article 2 “right to life” point and her rejection of the rider of “neglect” argument.
NB. I have not yet seen the written conclusion so everything I say here is based purely on my recollection of the hearing.
The case did not reach the very high legal threshold for an enhanced Article 2 inquest. Similarly, the legal test for a rider of “neglect” to be added to the conclusion was also not met. It has a specific meaning in law and requires a much higher standard than the normal meaning of the word. It is not the same as “negligence”.
In the circumstances, the coroner’s conclusion of death by “natural causes as a result of malnutrition caused by severe ME” was the most likely outcome on the basis of a) the law and b) the evidence that was put before her.
I also listened to the coroner’s findings and conclusion on 9 August. It was unexpectedly long and detailed. I assume this is because the coroner was a) well aware of the public interest in the case and b) following best practice by explaining her reasoning in detail because of the sensitivity of the case.
The coroner referred to the relevant case law as set out in her conclusion. I have looked at it and it appears to have been correctly applied. The standard of proof required is “on the balance of probabilities” which means “more likely than not”. This is the normal standard of proof for civil proceedings.
The coroner made findings on the facts before her by assigning weight to the evidence given by each individual witness. This is clearly distressing for many people to hear (sadly, that is often the case) but it is the only way of reaching a conclusion. This is what happens in all legal proceedings (in some cases, this would happen with a jury making findings of fact but that was not the case here).
There will be a further hearing on 27 September so that the coroner can make a decision on whether or not she should write a Regulation 28 “Prevention of Future Deaths Report”. If such a report is made, it can make recommendations but these will not be binding or enforceable. Nevertheless, this would be a constructive outcome from Maeve and her family’s tragic story.
Maeve’s case received fairly extensive media coverage which is a positive outcome from this very painful process. However, some of the coverage was indifferent, or even actively unhelpful. The irrelevant terms “fatigue” and “tiredness” are still in frequent use, as is the indiscriminate conflation with long covid. These, and many other aspects of media coverage, require attention from the ME community in due course.
Inevitably, there were some very unrealistic expectations of what this inquest would achieve. Below is my summary of the purpose of inquests, which may help to clarify what could have reasonably been expected.
Purpose of an inquest
Inquests are fact-finding processes. They are investigatory rather than adversarial, although there can be occasional challenging moments, given the often distressing nature of the subject matter. It is part of the coroner’s function to manage such moments with sensitivity.
It is also a function of the coroner to manage and facilitate the giving of evidence. In Maeve’s case, the coroner has referred to around 6500 pages of evidence.
An inquest is not a public inquiry, as the coroner in this case has emphasised. The remit of an inquest is much narrower and confined to the death in question.
The purpose of an inquest is to:
a) identify the medical cause of death
b) answer four questions about the death – who, when, where and how (usually the most difficult)
c) come to a conclusion (not a verdict) about the death
An inquest is not a trial nor is it about apportioning blame. It is confined to establishing the facts and reaching a conclusion in a statutory form.
Any criminal or civil liability is dealt with separately in different courts with different investigative processes.
The possible conclusions for a coroner are generally one of the following:
Accident or misadventure
Alcohol/drug related
Industrial disease
Natural causes (including death from illness)
Open
Road traffic collision
Stillbirth
Suicide
Lawful/unlawful killing