“Autonomy does not evaporate with loss of capacity”: Court of Protection

22 November 2021 by Rosalind English

This was one of those deeply troubling cases where there was disagreement amongst the family members over whether their incapacitated brother/father should continue with clinically assisted nutrition and hydration. One brother had applied for ANH to be discontinued, but because of the objections of the patient’s son, it was said that he would “continue to be cared for by nursing staff”.

As Hayden J observed, this was a “troubling non sequitur”:

Family dissent to a medical consensus should never stand in the way of an incapacitated patient’s best interests being properly identified. A difference of view between the doctors and a family member should not be permitted to subjugate this best interest investigation.

This particular hearing was ex post facto: in 11th June 2021, Hayden J delivered an extempore judgment in which he indicated why the continued provision of nutrition and hydration to GU, in the manner outlined above, was contrary to GU’s interests. However, having concluded that it was not in GU’s best interests to continue to receive CANH at the hearing on 11th June 2021, he considered it was necessary to afford RHND the opportunity of explaining what had happened. Amelia Walker of 1 Crown Office Row represented the hospital in these proceedings.

Background facts

Following an electrocution accident in 2014, GU had been unconscious for five years in the Royal Hospital for Neuro- disability (RHND). Repeat examinations had shown that there was no evidence of awareness. All responses were either automatic or reflexive. GU’s treating clinicians came to the clear conclusion, by August 2018, that he was in a prolonged disorder of consciousness for which there had been no change or any prospect of future change. “Treatment was both futile and, at least potentially, burdensome.” (para 4)

Unfortunately a formal best interest assessment was derailed by the Covid pandemic. It was only in March 2021 that a consultant in neurological rehabilitation was able to see GU and reach the conclusion that continued clinically assisted nutrition and hydration was not in his best interests.

He may live in this state for up to 10 years. I have reviewed the evidence from family members, which show convincingly that his past wishes would have been that he should not continue with life-sustaining medical treatment. I have reviewed the statement from the dissenting eldest son, and this shows that he has a moral objection, personally, to the withdrawal of food and fluid from his father.

GU’s son’s objections to withdrawing CANH were strong and poignant. He was not proposing continuation of life at any costs; as he pointed out, GU was not on life support.

What he is being given, food and water, are the basics and right to have.

… I’ve worked over in Africa, you can see a child there walking for miles to get a glass of water and here, in the UK, we’d deny water to my dad? People in the world are starving because they don’t have enough money, and here, in the UK, you are going to starve my dad? Starving someone to death will take a long time, the body has to shut down. A vet would put a sick pet down quick and painless. Maybe he did say to some people ‘If I’m ever like that shoot me’ but ok shoot him, don’t starve him.

It was however a mistake to equate CANH with the consumption of food and drink in the ordinary sense, where it is an intrinsic part of life, integral to health and survival. Nutrition and hydration which is “clinically assisted” is properly identified as ‘medical treatment’ (see: Airedale NHS Trust v Bland [1993] AC 789). It had to be emphasised, said Heydon J, that

the incapacitous patient receiving CANH is deprived of the choice to eat or drink. There is no exercise of autonomy. By contrast, in daily life, the consumption of food and drink frequently involves pleasure and conviviality. Not uncommonly it is an expression of love. There is no mutuality, pleasure or love where nutrition and hydration are delivered by a gastrostomy feeding tube.

In any event there was plenty of evidence from GU’s past that he would not tolerate a life of dependence. His case encapsulates much of what Sir Stephen Sedley says in his recent column in the London Review of Books: that “in an era of growing medical sophistication combined with longer life expectancies, many people are concerned that they should not be forced to linger on in old age or in states of advanced physical or mental decrepitude which conflict with strongly held ideas of self and personal identity.”

Whilst Sir Stephen, himself suffering from advanced Parkinsons, quotes the Strasbourg Court in a different context, that of assisted dying, the link is strong: that of GU’s right to autonomy. GU’s first wife recalled that he would always say that his greatest fear would to be in a vegetative state.

He would make me promise to “pull the switch” so as to end his life rather than be a vegetable. It was a fear of his.

At an earlier hearing considering GU’s position in June 2021, the Official Solicitor had strong words for the court regarding the hospital’s delay in organising a formal best interest assessment for GU. This submission, advanced in “uncompromising and trenchant language”, pointed to the inordinate and inexcusable delay (my emphasis) on the part of RHND, in giving consideration to the issue of whether continued treatment was in GU’s best interests, and in taking steps to enable the Court to determine that issue in the absence of family agreement. At the end of the June hearing Hayden J made declarations confirming that it was not in GU’s interests to receive nutrition and hydration. Treatment was withdrawn and GU died peacefully on 26th June 2021.

It was not necessary or indeed appropriate for the Court of Protection posthumously to review the lawfulness of GU’s past treatment. The judge did, however, regard it as necessary to evaluate whether GU’s dignity had been properly protected and, if not, why not. He undertook a wide ranging review of the definition of “dignity” in all the international, regional and national codes of human rights, as well as those instruments applying to the application to biology and medicine. He paid particular attention to the Council of Europe’s Recommendation 1418 of the Parliamentary Assembly, Protection of the human rights and dignity of the terminally ill and the dying(1999), provision 7 of which states, inter alia, that

artificial prolongation of the dying process by either using disproportionate medical measures or by continuing treatment without a patient’s consent

Thus the judge concluded that whilst there is and can be no defining characteristic of human dignity, it was clear that respect for personal autonomy is afforded pre-eminence. The case law on this, both from Strasbourg and the UK, very much supports this conclusion. Hayden J explained that he had gone to have gone to such lengths to review the concept of human dignity in this case because from his first reading of the papers, he was “alarmed” to discover the extraordinary delay that had occurred in addressing GU’s best interests and the “profoundly perturbing” period in which he had been in a prolonged disorder of consciousness.

In the 7 years since his dreadful accident it is regarded as highly unlikely that he had any experience at all but that if he did, it would have “generally been unpleasant”.

It is trite to say that medicine has progressed very significantly since the establishment of the earliest precursor to the RHND, the “charitable Hospital for Incurables”. Quite clearly, the identified aim of providing “permanent relief” to those “hopelessly disqualified for the duties of life” requires to be interpreted in the context of good, contemporary medical practice. Underpinning the original aims of the hospital in current times is a clear recognition of the importance of human dignity. Even the antiquated language of the past is good enough to identify that the objective is to provide “relief” to those who have lost the capacity to assert their own autonomy.

GU was not provided with relief; he should have been. His treatment became both burdensome and futile and entirely contrary to what he would have wanted. His dignity was avoidably compromised. Even the most summary assessment of his best interests would have revealed this many years ago.

What happened was, after years of real distress and concern, the pressure to convene a best interests meeting was, ultimately, generated by E (GU’s brother). Even a moment’s reflection will reveal that this put a family member in a highly invidious position. The RHND’s failure to act led to a situation in which E had to press for the discontinuance of treatment in order that his own brother (GU) might be permitted to die with dignity.

Many in E’s situation might have found themselves unable or unwilling to take this course. They should not have to do so.

So there were systemic failures to the system at the hospital, exacerbated no doubt by the Covid pandemic, that warranted to have this post-mortem hearing so that the COP could carefully examine why a proper best interests test had been carried out much earlier on the patient, thereby avoiding the extra years of distress not only to his family but to him, locked in as he was in a world without consciousness, feeling, prediction or even a sense of time.

The “central point” to keep in mind is that the decision-making process is about the best interests of the individual patient not what is best for those who are close to, or around them. This Court’s five page guidance on these situations, released as recently as 17th January 2020, is intended to be an easily accessible document. It is widely consulted and is, in the judge’s words, “a convenient gateway to the wider case law and to the other available professional guidance.”