In this fascinating lecture, Baker J consider the law on the withdrawal of artificial nutrition and hydration in the context of disorders of the consciousness and considers:
- What do we mean by "capacity"?
- What we know about disorders of consciousness?
- How do we decide what should happen in such cases?
- What are the ethical principles underlying the decision?
- Are judges the right people to be making these decisions?
His Lordship highlights the lack of definitive criteria of awareness, and the challenges this poses to those involved. He observes that in contrast to LPAs, advance decisions are littleknown and little used. And reference is made to the significant issue surrounding the need for court involvement. Namely, whether in light of Practice Direction 9E para 5(a), an application to the Court of Protection is required where an advance decision to refuse ANH has been made, or a health and welfare LPA acting within the scope of their express power makes the critical decision:
It is to say the least unfortunate that there should be such uncertainty and it is to be hoped that the opportunity will arise soon for the courts to resolve this question.
Tracing the case law from Bland, his Lordship observes the trend away from the short-circuiting of a best interests analysis by labelling the patient’s condition as “futile”, towards the favouring of a balancing exercise. Following Aintree, Baker J identifies the following consequences:
First, the best interests approach, based on the factors identified in s.4 of the MCA, should be applied in every case. Secondly, all arguments based on the “futility” of treatment are confined to cases of [vegetative state] and, in so far as medical science is moving to the view that disorders of consciousness should be seen as a spectrum and the concept of VS outmoded, it may be that it is no longer appropriate to decide any cases on that basis. Thirdly, if it is right that “the purpose of the best interests test is to consider matters from the patient’s point of view”, it seems likely that the courts will now focus much more intensely on identifying the patient’s wishes, feelings, values and beliefs looking carefully at all statements, formal and informal, made by the patient at an earlier stage to a greater extent than hitherto. As a result, although there will undoubtedly continue to be a strong presumption that it is in a person’s interests to stay alive, it may be somewhat easier for that presumption to be rebutted.
Quite rightly, his Lordship highlights the surprising lack of ethical arguments – and, most importantly, ethical experts – in such Court of Protection proceedings. Noting the proposed amendment by the Law Commission, to give greater priority to P’s wishes and feelings when considering best interests, Baker J discusses the dangers of an approach that focus exclusively on identifying such wishes and feelings, quoting Charles Foster: “when, if ever, will a patient be in a sufficiently receptive state of mind for perfectly autonomous decision-making?”. His Lordship goes on to state that, “no man is an island”, so “it must be wrong to give unqualified pre-eminence to the individual”. And too great an emphasis on wishes and feelings risk overlooking the importance of other aspects of the person.
As to when cases must come to court, according to Baker J: “At present, however, all cases involving a proposal to withdraw ANH from a patient in a VS or MCS have to be brought to court, even when all interested parties are unanimous that the proposed withdrawal is in the individual’s best interests.” Considerable sympathy is expressed with the view of those who contend that such proceedings should no longer be required as a matter of course. And he would not wish to retain the obligation indefinitely. But that time, he says, has yet to come:
But as I have, I hope, demonstrated above, both medical science and the law are still evolving. Until such time as we have greater clarity and understanding about the disorders of consciousness, and about the legal and ethical principles to be applied, there remains a need for independent oversight.
A pre-proceedings protocol could lead to significant reduction in delays so that, if all parties agree and all the necessary evidence is available, there is no reason why the court’s decision should not be made within weeks. Indeed, there is an urgent need for a more streamlined procedure to avoid undue cost and delay:
In my opinion, however, applications to the court should continue to be obligatory in all cases where the withdrawal of ANH is proposed, at least for the time being. Whoever makes the decision will never find it easy. On the contrary, all these cases are challenging and the responsibility grave. But that is only to be expected when the issue is a matter of life and death.
The uncertainty raised by the Practice Direction is certainly unfortunate. But it only refers to cases which “should” – not “must” – be brought to court. And, more significantly, where there is an unquestionably valid and applicable advance decision to refuse the relevant treatment, or a health and welfare LPA with express power to decide, there is in fact no decision for the court to make. For example, in relation to the former, MCA s.26(1) states: “the decision has effect as if he had made it, and had had capacity to make it, at the time when the question arises whether the treatment should be carried out or continued”. Indeed, it is likely that more withdrawal cases are not being brought to court compared to those that are.
As detailed in Alex’s blog, the estimates (based on numbers of patients with prolonged disorder of consciousness in nursing homes in the UK) range from 4,000-16,000 patients being in a vegetative state, with three times as many in a minimally conscious state. Whereas there have only been around 10 reported cases since October 2007. There will have been some others which do not result in a judgment, but such cases are supposed to be heard in public and (at least since the President’s transparency guidance was issued in January 2014) judgments published.