Alex RKWhen medical treatment can be considered to be a futile is an important, but sometimes difficult, question. What can make it difficult in the context of those with impaired decision-making capacity is the potential for it to start ‘coding’ judgments about other matters, above all judgments about the quality of life of the patient. In Re XY [2024 EWCOP 37 (T3), the issue of futility arose in the context of a decision whether continuing life-sustaining treatment was in the best interests of a man who in a prolonged disorder of consciousness. The treating Trust wished to withdraw cease mechanical ventilation and the provision of clinically assisted nutrition and hydration on the basis that its continuation was no longer in XY’s best interests. He was Muslim, and as Hayden J identified:
32. XY’s daughter (DE) told me that the course proposed by the doctors would be contrary to Islamic faith, as understood by her father. She told me that the Quran decreed that “he who kills a man, kills mankind; he who saves a man, saves mankind”. This is also present in the Torah and has resonances in the Bible. Thus, it is a facet of each of the Abrahamic faiths. All the family share this belief. By this I mean that each of them told me that A would wish to continue in his present circumstances, even if in pain, because he would have known that he would continue to provide succour to his family. I have come to the very clear view that whatever their understanding of the medical evidence might be, the loss of A is unbearably painful to this family and dominates their response. F told me that if she were in XY’s position, she too would wish to endure similar circumstances to comfort her own children by her continued presence. I accept the sincerity of her statement and consider it reflected her honest position. It is argued by Mr Mant, Counsel on behalf of the family, that F’s reasoning is entirely consistent with the way XY has lived his life, putting his family first at every turn. I find this to be a sensitive and well-reasoned submission.
XY’s Islamic beliefs were also underpinned an alternative plan proposed by the family, namely:
35. […] withdrawal of ventilation but reintroduction of CANH after a period of intermission, required for medical reasons. I need not burden this judgment with those reasons. There is agreement that XY would not be resuscitated in the event of cardiac arrest. It was suggested that alongside this, there would be no antibiotic treatment for almost inevitable infection, consequent upon micro aspiration. I should say that this second option was contemplated by the family but I did not sense any real enthusiasm for it. Its primary objective was centred upon what XY might have wanted in the circumstances that he found himself. His inevitable death on this alternative plan would not be in consequence of a particular action by man but more easily reconcilable with his Islamic beliefs. It was not constructed as casuistry; it was a sincere endeavour to reconcile the severity of XY’s medical situation with the sincerity of his beliefs.
Hayden J identified that:
35. […] Many people would recoil from XY’s present circumstances and profoundly wish to be released from them as quickly as possible. Where those wishes are identified, the Court of Protection is vigilant to promote the individual’s autonomy. However, the Court is similarly obliged to promote the autonomy of those whose views many might disagree with. The essence of autonomy is the promotion of an individual’s right to take their own decisions. The important proviso is whether those decisions are lawful or whether they require others to act in a way that represses their own autonomy, morally and ethically.
Hayden J could not countenance the alternative plan, reaching it through some interpretative work of XY’s presumed wishes and feelings:
36. […] Ms Paterson KC, Counsel on behalf of the Official Solicitor, highlighted an important dissonance in the reasoning underpinning the alternative plan. In their assertion that XY would have preferred to remain in this profound disorder of consciousness, from which their lies no recovery, the family have attributed to him a degree of awareness which, I have found, is not supported by the evidence. Accordingly, their view that he would choose his present situation to afford comfort to them is based on their false premise of what his situation actually is. The severe brain stem dysfunction that XY has sustained is consistent with the view that perhaps even basic pain sensations may not be experienced or perceived. The continuing lack of any detectable response on the EEG is also supportive of this. Thus, in a very real sense, A is no longer there for his family. Grief, by its very nature, sadly, sometimes alters both reasoning and perception.
37. Having heard so much about the man XY has been, and listened to the powerful tributes paid to him, it is clear to me that the code by which XY has lived his life is predicated on principled beliefs. Those principles incorporate honesty, integrity, duty and love of his family, as well as humanity more generally. The ‘alternative plan’, as Ms Paterson identifies, is predicated on an inaccurate assumption. The responses that the family believe they see are misinterpretations. They superimpose upon XY, that which he cannot achieve or experience. The distortion of these relationships, at the end of XY’s life, especially in such a close and loving family, runs counter to everything that each of them believes in. Of course, I include XY centrally in this. It does not sit in any way comfortably with the man he has been or the integrity that he has shown throughout his life. I do not believe, from all I have been told, that he would wish those who he has loved to believe that he was still there with them, in any meaningful sense, when the awful truth is that he no longer is.
Hayden J, finally, also agreed that:
38. I also agree that burdensome treatment of the kind contemplated here, can only be truly ethical where it can achieve benefit for the patient. Here, the treatment is futile. Dr A believes that XY is no longer receiving treatment in any real sense of the word i.e., it is not treating any condition. In short, it generates harm, not benefit and is irreconcilable with his professional oath. I entirely understand why he has come to that conclusion and for my part, in the light of my analysis above, cannot see how he could have arrived at any other. I would emphasise that his commitment to XY and his family has been unfailing.
Hayden J therefore made the declarations sought by the Trust.
Comment
As noted at the outset, futility can be a difficult concept (an issue discussed in this very helpful article by Cressida Auckland). It must be correct that a medical intervention which is not treating a condition is futile. However ‘treatment’ is a slippery word. Lady Hale in Aintree v James made clear that an intervention can still be treating a condition even if it is not curing it – if, for instance, it is maintaining the person’s quality of life at a level they consider acceptable, even if, for others, such a situation might appear intolerable. See paragraph 43:
[i]t is setting the goal too high to say that treatment is futile unless it has “a real prospect of curing or at least palliating the life-threatening disease or illness from which the patient is suffering”. This phrase may be a partial quotation from Grubb, Laing and McHale, Principles of Medical Law (3rd edition 2010), para 10.214, where the authors suggest that “Treatment can properly be categorised as futile if it cannot cure or palliate the disease or illness from which the patient is suffering and thus serves no therapeutic purpose of any kind”. Earlier, they had used the words “useless” or “pointless”. Given its genesis in Bland, this seems the more likely meaning to be attributed to the word as used in the Code of Practice. A treatment may bring some benefit to the patient even though it has no effect upon the underlying disease or disability.
[….]
43. I also respectfully disagree with the statement that “no prospect of recovery” means “no prospect of recovering such a state of good health as will avert the looming prospect of death if the life-sustaining treatment is given”. […] where the patient is close to death, the object may properly be to make his dying as comfortable and as dignified as possible, rather than to take invasive steps to prolong his life for a short while (see paras 62-63). But where a patient is suffering from an incurable illness, disease or disability, it is not very helpful to talk of recovering a state of “good health”. The patient’s life may still be very well worth living. Resuming a quality of life which the patient would regard as worthwhile is more readily applicable, particularly in the case of a patient with permanent disabilities. As was emphasised in Re J (1991), it is not for others to say that a life which the patient would regard as worthwhile is not worth living.
In a case such as XY’s, therefore, it might be thought that talking of futility in the way framed by Dr A and Hayden J in fact simply brings matters full circle back to the interpretation of XY’s will and preferences (to use the language of the CRPD), because it required consideration of whether he would perceive the treatment to be achieving any purpose. And, arguably, on the case put forward by the family, was achieving a purpose – it was keeping XY alive, and not contravening his Islamic faith. Indeed, Dr A himself tacitly acknowledged this, recorded earlier at paragraph 18 of the judgment as stating that, whilst he himself could not reconcile continued treatment with his clinical ethics, there would be other clinicians who would be prepared to take a contrary course if the court authorised it.
If treatment was truly futile, in the sense that it could not achieve any purpose – i.e. it would simply not work to keep XY alive – then this would have been a rather different application, and arguably should not have been before the Court of Protection at all. Put another way, the Trust’s assessment that the treatment was futile, t would have been determinative of the issue, because no one could compel them to provide the treatment, as opposed to being a significant part of the mix alongside P’s wishes.
One final, unrelated, procedural observation: the neutral citations for Court of Protection cases have now changed so that they identify at the end what Tier of judge has heard it: Tier 1 (District Judge), Tier 2 (Circuit Judge) or Tier 3 (High Court Judge).[1] This is extremely useful, because it makes clear what cases are (or could be) setting precedents, and what cases are in effect worked examples. For more on how to read a Court of Protection judgment, see here.
[1] Before people write in, I know that a judge sitting in the Court of Protection is sitting as a CoP judge, not as a High Court judge, but the tiering system is identifying what level they are at when not exercising functions as a nominated CoP judge.
