I have learned much about making decisions about people in a prolonged disorder of consciousness from The Honourable Justice Hayden, Vice President of the Court of Protection. This post discusses a comment made at the most recent case I attended. He referred, indirectly’ to the saying in the Hippocratic corpus: “‘The physician must… have two special objects in view with regard to disease, namely, to do good or to do no harm’” (from Epidemics, book I, sect. XI) (here). He was referring to the risk of causing harm to patients in a prolonged disorder of consciousness, specifically by not respecting their residual autonomy and dignity. I will explain, suggesting that harm is occurring to patients with a prolonged disorder of consciousness too often. We must strive to do no harm. The judgement was published in November 2021.
Update.
The original post was published on June 14th 2021. I have changed the layout and style and improved the content today (January 27 2024) but the main content is unaltered. However, three blog posts were published by Jenny Kitzinger shortly after my post, discussing the same case and giving more details. They are on the Open Justice Court of Protection Project. They are:
Last Thursday (10th June 2021), I appeared in court virtually to provide an expert opinion concerning a patient with a prolonged disorder of consciousness.
For any reader unaware of the state of a ‘prolonged disorder of consciousness‘, it is a much better, more accurate descriptor of states once referred to as the ‘vegetative state‘ and the ‘minimally conscious state‘. No valid tests can distinguish these two states. (here)
A prolonged disorder of consciousness is what it says: the patient is unconscious, in an ordinary English sense of the word, and has been in the state for some time. Further information about prolonged disorders of consciousness can be obtained in the introduction to the UK national guidance. (here)
The case came to court to resolve a disagreement about the withdrawal of clinically assisted nutrition and hydration or, in plain English, withdrawal of feeding and hydration given through a tube passed into the stomach (a gastrostomy tube). The disagreement was unusual. All parties agreed that the patient:
The disagreement concerned the mode of death; it may take 7-21 days to die after stopping hydration. However, this post is not about this disagreement and how it was resolved; the published judgement explains how the case ended.
The Honourable Justice Hayden has a particular interest in prolonged disorders of consciousness. I have appeared before him several times, and I have always learned something from the experience. This post summarises what I have learned in three cases.
The first memorable experience concerned a woman with multiple sclerosis. The case is described here. When this case was heard, the Court of Protection needed to decide all cases of a potential withdrawal of hydration.
Decisions made up to that point had followed the legal logic established in the original Bland case:
if someone is in a vegetative state (i.e. completely unaware of himself or his environment) and if the patient is never going to get any better, then treatment is futile and could be stopped. It was not a ‘best interests’ decision (despite the Mental Capacity Act 2005).
On the other hand, if the person was deemed to be in a Minimally Conscious State, then a decision on best interests needed to be made. In the most recent case taken to court where the patient was minimally conscious, the Honourable Justice Baker decided that it was not in the patient’s best interests to stop medical treatment; the judgement is available.
Some clinical features were said to mean a person was minimally conscious. I argued, with supportive evidence, that the features did not indicate awareness at any level. I also pointed out that, with increasingly prolonged detailed examination and observations, more and more patients were being considered minimally conscious, patients who ten years previously would have been labelled as being in the ‘vegetative state’.
Justice Hayden summed my evidence up succinctly: “So what you are saying, Dr Wade, is that if the vegetative state were a club, it has become increasingly exclusive over the years.” This summary was so good that I used it later when publishing the evidence that unawareness is a spectrum and cannot be divided into categories. (here)
The second case occurred just before March 23rd, 2020 (lockdown day). It concerned a man with a much less severe prolonged disorder of consciousness. He was awake and responded to external stimuli, but he rarely, if ever, showed behavioural evidence of awareness. There were some automatic behaviours.
The dispute was about whether continuing with gastrostomy feeding was in his best interests. People with opposing views gave evidence, mostly by telephone (it was an urgent hearing because the gastrostomy tube had failed). As always, the Honourable Justice Hayden listened carefully to all parties. More importantly, he carefully explained his reasoning behind the decision.
As part of his explanation, he said (this may not be verbatim, but it is close and captures his idea): “To be clear, this is not a ‘life and death’ decision. Rather, it is a decision on what sort of life P would wish to live from now until his death.“
This reframing of the decision helps me. More importantly, it is very helpful when discussing the decision to continue active medical treatment (not just hydration). It helps other team members, families and friends, and more senior hospital managers appreciate the decision’s nature.
The main clinical and legal aspects of this case have been outlined above. The additional point at issue concerned the delay in approaching the Court of Protection for the decision to be considered and a decision made. Evidence was present in 2018 that it was no longer in the patient’s best interests to continue gastrostomy feeding and hydration. The dispute involved the same concern raised by the same person. Despite being informed about the legal process, the clinical team took no action.
The Honourable Justice Hayden highlighted that:
His concern was that the patient had, potentially, been given a treatment that was not in his best interests for nearly three years when there was a clear and well-known legal process for resolving the dispute.
He noted that;
The meaning of ‘loss of dignity’ was not explored in the case. My interpretation and extrapolation are that ignoring the patient’s personhood and residual autonomy is a form of lost dignity. Further, as mentioned in the hearing, the delay probably contributed to family discord, something the patient would have wished to avoid. Third, the delay must have caused or prolonged family distress, again something the patient would not have wanted.
I think the main lesson to be learned here is that not considering fully and formally whether a treatment should be started or continued can itself cause harm, through allowing a treatment to start or continue when the person would not have wanted it. It is not sufficient to think that, if there is doubt or dispute, active treatment should continue 'as it can do no harm'. The national clinical guideline (here) and the 2018 guidance on withdrawing treatment in people who lack capacity (here) both stress this, and legal guidance is also available. (here)
This post has reviewed two earlier cases and one current case where Honourable Mr Justice Hayden has considered withdrawal of gastrostomy feeding and hydration from someone in a prolonged disorder of consciousness. In all three, he reframed a important point in a way that helped me and, I hope, others: (a) he compared making the now-irrelevant diagnosis of a person being in a so-called vegetative state to joining an increasingly exclusive club; (b) he stressed that the decision should focus on how a patient would wish to live the remainder of his life; and (c) he made it clear that not making a best interests decision formally and properly caused harm.
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