I have learned much about making decisions on 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 at present harm is occurring to patients in a prolonged disorder of consciousness too often.
Last Thursday (10th June 2021) I was appeared in court, virtually, to provide an expert opinion in a case concerning a patient in 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 a the ‘vegetative state‘ and the ‘minimally conscious state‘. These two states cannot be distinguished by any valid tests. (here)
A prolonged disorder of conscious 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 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:
- had severe, irreversible brain damage
- could not make any decisions
- had no awareness of himself or his environment
- had no prospect of ever making any further improvement
- might live 6-10 years if all care and treatment was continued
- would not wish to continue living in this condition
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. When the judgement is published, the link will be given here.
The Honourable Justice Hayden has a particular interest in prolonged disorders of consciousness. I have appeared before him on several occasions, and I always learn something from the experience.
The first time concerned a woman with multiple sclerosis. The case is described here. When this case was heard, all cases of potential withdrawal of hydration needed to be decided by the Court of Protection.
Decisions made up to that point had followed the legal logic established in the original Bland case:
if someone is in the vegetative state (i.e. completely unaware of himself or his environment) and if the patient was never going to get any better, then treatment was 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 only case taken to court up to that point where the patient was minimally conscious, it was decided not to be in the patient’s best interests to stop medical treatment.
There were some clinical features which 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 detail examination, more and more patients were being considered minimally conscious, patients whom 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.” The summary was so good, I used it later when publishing the evidence that unawareness is a spectrum, and cannot be divided into categories. (here)
The second case was just before March 23rd 2020 (lockdown day). It concerned a man in a much less severe prolonged disorder of consciousness. He was awake, responded to external stimuli but rarely if ever showed behavioural evidence of awareness. There were some automatic behaviours.
The dispute was largely about whether it was in his best interests to continue with gastrostomy feeding. People with opposing views gave evidence, mostly be 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 explained carefully 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.“
I have found this reframing of the decision helps me. More importantly, it is very helpful when discussing the decision on continuing active medical treatment (not just hydration). It helps other team members, families and friends, and more senior hospital managers to appreciate the nature of the decision.
In that context, I will now consider the most recent case, and what I learned in lesson three.
The main clinical and legal aspects of this case have been outlined above. The additional point at issue concerned 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:
- the clinical facts were identical in 2018;
- the information on best interests was all available in 2018;
- the legal process was clearly well known and publicly available (here);
- but no action was taken.
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
- “first, do no harm” was a generally-used medical aphorism;
- feeding and hydrating a patient when it is not permitted (i.e. not in the best interest) could cause harm;
- the harm mentioned was a loss of dignity.
The meaning of ‘loss of dignity’ was not explored in the case. My interpretation and extrapolation is that ignoring the patient’s personhood and residual autonomy is a form of lost dignity. Further, and 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.