By Dominic Wilkinson, 24th June 2021
On 11th June 2021, I was a public observer (via MS Teams) of a case in the Court of Protection: Case No. 1375980T Re GU (also blogged about by Jenny Kitzinger here).
The case was (though I did not know it beforehand) related closely to issues that I have written about over a number of years (for example here, here, here ). It was an urgent hearing before Mr Justice Hayden concerning clinically-assisted nutrition and hydration (CANH) for a 70 year old man, GU, who has been in a prolonged disorder of consciousness for seven years.
I have read the judgments from many similar cases in the UK, from the first ever case concerning a feeding tube for a vegetative patient heard in (what is now) the Supreme Court in 1992 (the case of Tony Bland, injured in the Hillsborough football stadium disaster), through to the most recent Supreme Court case of Re. Y, at which the court ruled that it is not mandatory to bring cases concerning CANH-withdrawal to court unless there is disagreement about best interests, or the decision is finely balanced (report here). I’m also familiar with the judgments in other jurisdictions (e.g. Schiavo in the USA, Lambert in France) and have been involved in deliberation in clinical ethics committees about cases with similar features.
Yet, this was my first time hearing open deliberations in the Court of Protection. It was a fascinating and thought-provoking experience.
Background: The case of GU
Right at the start of the hearing, the court heard the moving and tragic story of the events leading up to this point. Seven years previously, GU had been electrocuted while cleaning a pond in his home overseas. Dragged out of the water and rushed by car to a hospital some distance away, GU had suffered a cardiac arrest and severe hypoxic brain injury. He was repatriated to the UK, and has remained ever since in a specialised rehabilitation facility and nursing home.
GU has been stable for many years. His doctors agree that he remains in a permanent vegetative state and will not improve. Three years ago, after reading about the Re Y case, some of GU’s family expressed a view to his treating doctors that the treatment keeping him alive (clinically-assisted nutrition and hydration) should be withdrawn. However, the doctors were aware that one family member did not agree to this – which under the Re Y ruling would mean a mandatory court hearing. The hospital did not host a best interests meeting, and nor was any application to the court made.
Three years later, the Clinical Commissioning Group brought the case to the Court of Protection for an urgent hearing.
The central ethical issues in this case relate to two relatively familiar questions. First, is it in the best interests of a patient in a prolonged vegetative state to continue life-prolonging treatment (where there is evidence that they would not have wished to be maintained in such a state?) Second, is it permissible to withdraw clinically-assisted nutrition and hydration, anticipating that the patient will die as a consequence?
These ethical questions are settled in UK law as general principles. As they related to GU in particular, the answers were reached relatively quickly: no, it was not in his interests, yes it was permissible. But I will focus for most of this blog on a different issue, raised right at the start of the hearing, and recurring throughout. Where such questions arise for a patient in a prolonged disorder of consciousness, is it urgent that they are heard and decisions reached by the court, and if so, why?
At the start of this hearing Mr Justice Hayden noted that he was hearing the case on the urgent and emergency applications list. There is usually a relatively long wait for cases to be heard in the Court of Protection, often a matter of several months. But it is possible to apply for an emergency order if “it is a serious matter with an unavoidable time limit”. For example, that can relate to urgent life and death decisions. On the morning of the first day, Mr Justice Hayden indicated that the circumstances were so urgent that not only did he plan to hear the case on the emergency list as a ‘final’ hearing and not simply as a ‘directions’ hearing (as it was listed), but he would, if possible, aim to reach a conclusion on the same day. (In the event, he delivered his judgment the next day.)
One of reasons given for aiming for a speedy determination of the issues was the impression that there had been undue delay at a prior stage in applying for a court determination of GU’s best interests. There was a strong suggestion by one of the expert witnesses, Professor Wade, that “there had been an inordinate delay” and that there should have been an application to the court three years earlier. In fact, it seemed that the lack of appropriate urgency at an earlier stage was a significant factor in the perceived urgency of reaching a decision now. Mr Justice Hayden noted that “one day more is one day too many”.
One reason that some might be puzzled by the urgent nature of the hearing is that GU’s clinical state is completely static. His condition this month is the same as a month ago, as six months ago, as two years ago. Not only that, but given GU’s diagnosis of the most severe form of prolonged disorder of consciousness, there was little or no suspicion that he was perceiving any pain or discomfort (though this could also not be ruled out).
At the start of the hearing, Mr Justice Hayden remarked that “It is sometimes implied that if a patient is in a vegetative state (rather than some higher level of consciousness) it does not matter if there is a delay”. However, he rejected that view. Speaking to the brother and son of GU (who had different views about GU’s treatment), Mr Justice Hayden was keen to separate the question of the urgency of the decision from the actual decision itself. He suggested that whatever decision was reached by the court, whether to continue or to discontinue treatment, it was in GU’s best interests to reach that decision urgently.
It is relatively obvious why that might be the case if treatment were not in GU’s interests. It could be a harm to GU to prolong his life. Moreover, that harm could be aggravated by delay.
But on the other hand, if it is in GU’s interests that treatment continue, it does not seem in any way urgent (for GU’s sake) to formally reach a best interests decision that confirms that. After all, in that case nothing about GU’s treatment would change.
So, one concern might be that perceived urgency in cases like this is not independent of the conclusion. Where there are different views, potentially only one side has reason to have the case heard urgently. (Indeed, in some situations those parties who are advocating continued treatment may have reason to want the case to be delayed, in case the decision goes against them (this did not appear to particularly apply to GU)).
There are, however, two ‘independent’ or neutral reasons in favour of urgency. We can apply these reasons without having to (or before having to) take a side in the dispute about treatment.
One reason is in terms of an asymmetry of harms. As noted above, if treatment should be stopped, delay is a harm. If treatment should not be stopped, an early decision is not a harm. Because of that, the least harmful approach is to aim for earlier decisions if possible. (One important practical consideration is that there can be greater uncertainty early after an acute brain injury. Sufficient time may need to have passed in order to assess whether the patient will improve and to gather information to be confident of their clinical state – for example the level of severity of their prolonged disorder of consciousness). That obviously did not apply to GU, since three years ago (and potentially as long ago as 6 years ago) ample time had passed since his original event.
The second independent reason is on the basis of family wellbeing, and the deleterious consequences of prolonged disagreement. In GU’s case, it was clear that the one dissenting family member (GU’s son) had found his relationship with the rest of the extended family seriously damaged as a result of their disagreement. Mr Justice Hayden was at pains to express a hope that reaching a best interests decision for GU would enable the rifts within the family to begin to heal. If we assume that in most cases patients will not want their family to be fighting, it would potentially be in a patient’s best interests to have any disagreements over their treatment resolved as quickly as possible.
Harm, dignity and autonomy
These two reasons suggest that it would be better to reach a decision sooner rather than later. That was the basis for Mr Justice Hayden’s concern about the delay in decision-making for GU. At one point, the expert witness expressed a view that the Hospital had chosen to “put their head in the sand” rather than confront the question of GU’s best interests and potential withdrawal of clinically-assisted nutrition and hydration.
But as an ethicist, I was interested to hear some of the discussion about why it was bad for GU to have been treated with clinically-assisted nutrition and hydration for a prolonged period.
One reason that was given was because it was possible that GU was suffering pain. There was some discussion about the evidence of awareness of pain in the vegetative state. The general consensus was that P was unlikely to be aware of pain or discomfort. However, this remained a small possibility.
An important reason cited was that continued treatment was contrary to GU’s autonomy. According to the Official Solicitor, there was “unanimity of evidence” that GU would not have wanted to be in this state, and as a consequence it was “an affront to his autonomy and dignity” to continue treatment.
As the previous quote indicates, it was further claimed that this was contrary to GU’s “dignity”. If treatment was not in GU’s interests and was merely prolonging GU’s death it was suggested by Mr Justice Hayden that “many would consider that a compromise of …[GU’s] dignity”.
Finally, it was suggested that a compromise of GU’s dignity constituted “a harm”. There was discussion in the hearing about the oft-cited principle of medical ethics “do no harm”, and therefore the implication that continued treatment of GU was contrary to this principle.
What was interesting about this discussion from an ethical point of view is that three different ethical concepts were referred to as grounding concern about prolonged (unwanted) treatment: “autonomy”, “dignity”, “harm”. They were cited as though the different words gave extra weight to the wrongness of what had been done to GU. This, and that, and this other thing. Three different reasons for concern. And yet it was not clear (to me) that they were referring to separate elements. Rather, they all seemed to be dependent on the single central ethical consideration – which was that GU would not have wanted to live in his current state.
Some of the deployment of these concepts appeared at times paradoxical. For example, there was recurrent suggestion that GU’s dignity had been compromised by the delay. And yet, Mr Justice Hayden was also at pains to note that GU’s general nursing and care at his long-term nursing facility had been of the highest quality. He said that GU “had been living in dignity”. So, was dignity preserved or not?
Ethics in the court of protection
One of the most interesting elements to me was the extent of the debate about primarily ethical questions in this hearing. There was in fact, relatively little discussion or debate about questions of law. That may have reflected the fact that this hearing did not raise any new questions of law, and the lawyers present (representing the clinical commissioning group and GU via the Official Solicitor) were in agreement. The disagreement was coming from one family member who was an ‘interested party’, but was unrepresented.
But to the extent that ethical questions and concepts were central to the hearing, it also seemed that there would have been value in having some specific ethical expertise available. Such expertise isn’t (primarily) about identifying the right answer to what should happen for the person at the centre of the case. Instead, it would draw on the skills that are relevant to clinical ethics in committees or on the wards: clarifying concepts, identifying and weighing relevant considerations and arguments, making important distinctions, deploying thought experiments, drawing on debate and academic literature. For example, a clinical ethicist in this case might have been able to identify the strength of the arguments relating to the urgency of obtaining a best interests determination in cases like that of GU. They might have drawn attention to the value of clarifying and distinguishing concepts like harm, autonomy and dignity. They would also have been able to provide some insight into the relevance of ‘do no harm’ in such cases.
Academic and clinical ethicists, from the sidelines, have long debated questions relating to medical treatment for patients who are unable to decide for themselves. In England and Wales, they haven’t, or only extremely rarely, been called as expert witnesses. Yet ethics is obviously central to the work of the Court of Protection. And if this hearing is anything to go by, if judges or barristers were willing to call on them, it seems that there could be a place for an ethicist in the courtroom.
Dominic Wilkinson is a Consultant Neonatologist and Professor of Medical Ethics based at the Oxford Uehiro Centre for Practical Ethics He tweets @Neonatalethics