In this guest post, Tor Butler-Cole explains how judges have approached end of life decisions in recent cases in the Court of Protection. Although aimed primarily at a medical readership, it provides a useful introduction for anyone unfamiliar with this type of case.

Prompted by interesting discussions with doctors on Twitter, and because it isn’t possible to summarise a legal judgment in 140 characters in a way that is useful, this article aims to share with the medical profession some of the things judges have said about end of life decisions in recent cases. (Most of the cases are available to read in full for free on BAILII )

When decisions have to be made about providing, continuing, withholding or withdrawing life-prolonging or life-sustaining medical treatment for a person who cannot make their own decisions, the law says that the test to be applied is what is in the person’s best interests. The best interests test is simple to state, but doesn’t really mean a great deal. The most detailed explanation of what it means (in relation to adults without mental capacity) comes from Baroness Hale:

“The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be.” (Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67; [2014] AC 591)

The puzzling bit for many people is that while you have to ‘put yourself in the place of the patient and ask what his attitude towards treatment is or would be likely to be’, it doesn’t automatically follow that what the patient wants or would want is what is in his best interests. Best interests is an objective test, albeit one that is hugely influenced by the subjective wishes of the patient, where they can be ascertained.

Before the Aintree judgment cited above, the legal position in relation to end of life decisions, very crudely summarised, was that:

1. If a patient was in a permanent vegetative state, it would not be lawful and in her best interests for life-sustaining treatment to be given, because such treatment would inevitably be futile and of no possible benefit.

2. If a patient was in a minimally conscious state, a best interests decision should be made, but without clear evidence of what the patient would have wanted to happen, it was unlikely that the views of the patient’s family about her wishes would be given much weight. (W v M [2011] EWHC 2443; reported as In re M (Adult Patient) (Minimally Conscious State: Withdrawal of Treatment) [2012] 1 WLR 1653)

3. If a patient had a very poor quality of life — for example by suffering significant pain and discomfort in an intensive care unit, with no real prospect of improvement or recovery — the court might well agree with the treating doctors that further treatment was not in the patient’s best interests even if the family disagreed (eg. NHS Trust v VT [2014] COPLR 44).

Since the Aintree judgment, there have been a number of cases in which the court has confirmed that it is not in a patient’s best interests to continue to receive life-sustaining treatment, based to a large extent on the court’s view of what the patient herself would have chosen. There has been a distinct shift towards accepting the views of the patient’s friends and family where they are given with understanding of the clinical realities and with knowledge of the patient.

The case of Mr TH —ascertaining the creed by which a person lives

Sheffield Teaching Hospitals NHS Foundation Trust v TH [2014] EWCOP 4

Mr TH was a 52 year old man and a talented drummer. He had a history of excessive alcohol use and at the time of the court hearing had been in hospital in a very low awareness state for three months. The court heard evidence from his friends and his ex-partner about his background, his life and his personality: they

‘transported TH from his hospital bed, in his minimally conscious condition, and their obvious love and affection for him has brought his character and personality to this court. They have communicated not merely his words and wishes, but also his feelings, too frequently conflated as the same concept, but in truth entirely different.’

The court heard that TH was ‘a bit cookie’ — he had a lifelong suspicion and distrust of the state, and an intense dislike of hospitals. He did not like relying on other people for help. All the witnesses were clear that ‘this is a situation that he would find unendurable and an affront to his dignity’. The judge concluded that

‘If ever a court heard a holistic account of a man’s character, life, talents and priorities it is this court in this case. Each of the witnesses has contributed to the overall picture and I include in that the treating clinicians, whose view of TH seems to me to accord very much with that communicated by his friends. I am left in no doubt at all that TH would wish to determine what remains of his life in his own way not least because that is the strategy he has always both expressed and adopted. I have no doubt that he would wish to leave the hospital and go to the home of his ex-wife and his mate’s Spud and end his days quietly there and with dignity as he sees it. Privacy, personal autonomy and dignity have not only been features of TH’s life, they have been the creed by which he has lived it. He may not have prepared a document that complies with the criteria of section 24, giving advance directions to refuse treatment but he has in so many oblique and tangential ways over so many years communicated his views so uncompromisingly and indeed bluntly that none of his friends are left in any doubt what he would want in his present situation.’

The Trust’s lawyer accepted that ‘nobody having listened to the evidence in this case could be in any real doubt what TH would want’.

The court never had to decide what was in Mr TH’s best interests, as he died before any further hearings took place. It is difficult to imagine the court choosing to continue treatment for Mr TH given the strength of its conclusion about his likely wishes.

The case of Mrs N — no advance decision, but equally cogent evidence of wishes and feelings

In re N (Mental Capacity: Medical Consent) [2015] EWCOP 76

Mrs N was a 68 year old Jewish woman who had lived with multiple sclerosis for 23 years. At the time of the court hearing, she was in a minimally conscious state and her family were in agreement that she would not have wanted CANH to be continued. The same judge who had heard the case of Mr TH heard evidence from Mrs N’s family and agreed that treatment should stop. The judge said that

‘where the wishes, views and feelings of P can be ascertained with reasonable confidence, they are always to be afforded great respect’ and observed that ‘an assessment of P’s wishes, views and attitudes are not to be confined within the narrow parameters of what P may have said. Strong feelings are often expressed non-verbally, sometimes in contradistinction to what is actually said. Evaluating the wider canvass may involve deriving an understanding of P’s views from what he may have done in the past in circumstances which may cast light on the strength of his views on the contemplated treatment.’

This was an interesting approach for the court to take. The court could have said — if people don’t avail themselves of the statutory options for planning their future care (advance decisions or lasting powers of attorney) then the court won’t try and figure out their likely wishes. There’s a statutory scheme in place, and if you don’t make use of it, then you can’t expect people to be sufficiently sure of your views to rely on them in making decisions. In fact, the court took the opposite approach, reasoning that if Parliament had thought it appropriate for people to be able to override the presumption in favour of preserving life by allowing people to create legally binding advance decisions to refuse treatment, then

‘by parity of analysis…the importance of the wishes and feelings of an incapacitated adult, communicated to the court via family or friends but with similar cogency and authenticity, are to be afforded no less significance than those of the capacitous.’

The case of Paul Briggs — the court’s role when doctors and families disagree

In re Briggs (Incapacitated Person) (Medical Treatment: Best Interests Decision) (No 2) [2016] EWCOP 53; [2017] 4 WLR 37

Paul Briggs was a police officer with a young family who suffered a severe brain injury when he was knocked off his motorbike. He was in a minimally conscious state in hospital, and his treating doctors considered that it was in his best interests to move to a rehabilitation unit where it was thought he might recover some cognitive function so that he emerged from MCS and was able to make simple decisions such as what colour t-shirt to wear. His family and friends agreed that he would not have wanted to continue to receive CANH even if this ‘best case scenario’ eventuated.

The judge, Mr Justice Charles, noted that the court had to consider

‘so far as is reasonably ascertainable (i) Mr Briggs’ past and present wishes and feelings (in particular any relevant written statement made by him when he had capacity), (ii) Mr Briggs’ beliefs and values that would be likely to influence him if he had capacity, and (iii) the other factors that Mr Briggs would be likely to consider if he were able to do so.’

The court in this case suggested that it would be best placed to ascertain wishes and feelings, in circumstances where there was a dispute between the family and the doctors, and so it was unsurprising that the doctors would continue to provide treatment while a decision was sought from the court:

‘A court can if necessary make binding findings of fact and it carries out the weighing exercise required by the MCA with the benefit of hearing evidence that is tested and argument. As a consequence, it is likely to be in a better position to determine the existence of, and the weight to be given to, the matters set out in s. 4(6) of the MCA that are based on the past when P had capacity than, for example, treating doctors are. So, if P’s family are asserting that they favour a different conclusion to that reached by the medical team, it is likely that in many cases to be reasonable if not inevitable for doctors to give great and probably determinative weight to medical and ethical issues in their exercise of the MCA best interests test pending the resolution of the existence of the matters in s. 4(6) and the weight to be given to them by a court.’

<>The judge sensibly refused to be drawn on how sure you have to be of what a person would have wanted to rely on that as the basis for your best interests decision, saying

‘I have deliberately not tried to set out how convinced the court has to be about what P would have decided if he or she was able to do so because, in my view, the weighing exercise is so case and issue sensitive and is not a linear or binary exercise, and because here I am sure (in the sense that I have no reasonable doubt) on the decision that Mr Briggs would have made if he was able to do so.’

The case of Mr RY — when wishes cannot be reliably ascertained

Abertawe Bro Morgannwg University Local Health Board v RY [2017] EWCOP 2

Mr RY was an 81 year old man who was being cared for in hospital following a cardiac arrest eight months previously. He was said to be in a minimally conscious state and had spent some five months in intensive care. His daughter told the court that her father would want everything done for him, and relied on his religious beliefs in support of that view. The judge tried to undertake a holistic assessment of Mr RY’s values and personality, as in previous cases, but was unable to:

‘In many cases I have found family and friends to be … the only real conduit through which P’s wishes can be established. In this case, RY’s ‘voice’ has remained resistantly silent.’

The judge found that Mr RY’s daughter was not a credible witness who had lied during the course of the proceedings, and said

‘I have felt unable to rely on CP’s account of her father’s wishes for a number of reasons. I do not doubt that she loves him dearly, even though I suspect that their relationship has not always been equable. I also consider that she has a strong faith. She told me that her wishes were indistinguishable from those she has advanced as her father’s i.e. even a wholly compromised life, punctuated by pain, would be better than no life. It is also quite plain that she has not accepted the medical evidence and that her belief both in her father’s present abilities and future prognosis is very unrealistic.’

However, the court did not automatically fall back on the importance of the preservation of life, noting that it would be

‘flawed to assume that in the absence of clear and reliable evidence as to RY’s views, the emphasis on the ‘sanctity of life’ becomes in someway greater. This powerful and important consideration will always weigh heavily in the balance but it must not be permitted to quash all other considerations. Those whose voices do not carry through to the courtroom are just as entitled to protection as those individuals in the cases I have referred to above.’

In the circumstances of the case, the judge did not make a decision, but gave the family time to reflect on the medical evidence and the judge’s conclusions. In the event, Mr RY died shortly afterwards, before any further decisions about his treatment needed to be taken.

The case of Mrs M — when doctors and families agree

M v A Hospital [2017] EWCOP 19; [2017] WLR(D) 615

Mrs M had Huntington’s disease and had been cared for in hospital for over 15 years. She had deteriorated to the extent that she was minimally conscious, and her family and treating doctors agreed that CANH should be stopped. The court agreed, noting that

‘They had reached their positions after the most careful thought, placing M at the centre of their concern, and concluding that she would not have wanted to go on living like as she was, nor endure the inevitable continued decline in her terminal condition.’

The judge observed that

‘the medical opinion on M’s overall best interests was to some degree influenced by (and might, in the end, be said to have been tipped by) the views of her family. There is nothing wrong with that. For obvious reasons, it is not found in many of the reported cases, which often portray doctors and families in opposite camps, but those cases are surely unrepresentative of the much greater number where a common position is reached through people listening to each other. Just as family members will naturally pay regard to the views of carers and doctors, particularly on the medical aspects of the situation, so doctors will naturally listen to the views of the family about their relative’s wider best interests. What is important is that those called upon to express a view should do so conscientiously, drawing upon their personal and professional knowledge of the individual concerned.’

The judge went on to express the view that where families and doctors were in agreement, applications to the Court of Protection were not required:

‘a decision to withdraw CANH taken in accordance with prevailing professional guidance…will be lawful and the clinicians will benefit from the provision of s.5 MCA 2005. The court is always there if there is a dispute, but such cases will be rare…’

Conclusion

The cases outlined above are, on any view, an interesting window into the thought processes of judges of the Court of Protection and their application of the limited guidance in the MCA itself when determining best interests in cases of life and death. While we lawyers are familiar with them and read each case as soon as it is made public, I can’t imagine most doctors have time to pore over them or to extract the statements of principle and consider their application, if they are even aware the judgments exist. How to bridge that gap — and perhaps the extent to which it needs to be bridged — are interesting questions, but for another day.

Tor Butler-Cole is a Barrister at 39 Essex Chambers.

She tweets as @TorButlerCole

This article first appeared on her Medium account and is republished with her permission.