United Lincolnshire Hospitals NHS Trust v N [2014] EWCOP 16
Summary
History was made in a very and dignified quiet way on 15 July when Pauffley J made a declaration that it would be lawful and in the best interests of a woman for a treating NHS Trust not to make further efforts to establish and maintain a method of providing her with artificial nutrition. The declaration, for which the reasons were given in a judgment handed down on 21 July, is momentous because the woman was at the time in a Minimally Conscious State (‘MCS’) and it is arguable that Pauffley J has gone further than any Court of Protection judge has previously been willing to go in relation to such a case.
Background facts
The background facts can be shortly summarised, although the shortness of the summary is not in any way intended to detract from the significance of the decision for N and her family.
N was a woman in her early fifties. In June 2013, she suffered a sub-arachnoid haemorrhage. She was in consequence thereafter in a MCS and lacked capacity to make decisions as to her medical treatment.
In mid June 2014, N was admitted to hospital from the care home where she had been living because the PEG tube through which she was fed was no longer in place. Since then, N had been physically resistant to all efforts to re-establish a method of providing her with nutrition, and had pulled out a naso-gastric tube and several cannulae.
As a result of these difficulties, N had not been receiving any nutrition from 14 June 2014; an urgent application was made by the treating Trust on 8 July, and (inter alia) independent expert gastroenterology evidence was obtained in advance of a final hearing on 15 July.
The evidence
Pauffley J carefully set out the evidence of the views of N’s adult daughter, D, and N’s former husband, both of whom were clear that N was a very private person, would prefer the dignity of not having the PEG “forced on her,” and that N had no quality of life and could not interact with her environment or other people. Importantly, D gave evidence to the Court of a conversation that she was told her mother had prior to her brain injury with a friend as to their wishes if they had been incapacitated in a road accident. Apparently, both said that they would not like to continue life in a reduced capacity. D stated that although this was different, she believed it summarises what her mother’s views would have been.
The independent expert, Dr Barry Jones (whose evidence was specifically praised by Pauffley J), whilst ultimately confirming in oral evidence that he agreed that N was in an MCS, noted that N appeared to be sentient and was able to remove a nasogastric tube and bridle which required a degree of dexterity, effort and determination. He stated that “it is possible that despite her severe cognitive impairment as part of her [MCS], she is able to express her refusal of these treatments“. He was clear that continuing attempts to reintroduce feeding would be “a perpetuation of a state in which none of us would wish to find ourselves and one which N would not have wished to experience.”
The Law
In her analysis of the legal framework, Pauffley J noted thus (in passages that I set out in full as a very clear statement of the law):
“52. There is a strong presumption in favour of the preservation of life, see e.g. In re M (Adult patient) (Minimally conscious state: withdrawal of treatment) [2012] 1 WLR 1653, paras 7, 220, 222. This does not displace the patient’s best interests as the paramount consideration for the court.
53. The court will not order medical treatment to be provided if the clinicians are not willing to offer that treatment on the basis of their clinical judgment (see AVS and a NHS Foundation Trust [2011] EWCA Civ 7, per Lord Justice Ward at para. 35, and Aintree University Hospitals NHS Foundation Trust v David James and others [2013] 3 WLR 1299 para. 18) but the power under s15(1)(c) of the Act to make declarations as to “the lawfulness or otherwise of any act done, or yet to be done, in relation to [the] person” enables the court to rule on the lawfulness of the proposed withholding of life-sustaining treatment, in this case further attempts at provision of a method of providing artificial nutrition.
54. Lady Hale, giving the judgment of the Court in Aintree, said [para19-22]:
‘However, any treatment which the doctors do decide to give must be lawful. As Lord Browne-Wilkinson put it in Airedale NHS Trust v Bland [1993] AC 789, which concerned the withdrawal of artificial hydration and nutrition from a man in a persistent vegetative state, “… the correct answer to the present case depends upon the extent of the right to continue lawfully to invade the bodily integrity of Anthony Bland without his consent. If in the circumstances they have no right to continue artificial feeding, they cannot be in breach of any duty by ceasing to provide such feeding” (p883). Generally, it is the patient’s consent which makes invasive treatment lawful. …
20. … the fundamental question is whether it is lawful to give the treatment, not whether it is lawful to withhold it.
21. In Bland, Lord Goff (with whose judgment Lord Keith and Lord Lowry expressly agreed) pointed out that “the question is not whether it is in the best interests of the patient that he should die. The question is whether it is in the best interests of the patient that his life should be prolonged by the continuance of this form of treatment” (p868). To the same effect was Lord Browne-Wilkinson, at p884:
“… the critical decision to be made is whether it is in the best interests of Anthony Bland to continue the invasive medical care involved in artificial feeding. The question is not the same as, ‘Is it in Anthony Bland’s best interests that he should die?’ The latter question assumes that it is lawful to perpetuate life: but such perpetuation of life can only be achieved if it is lawful to continue to invade the bodily integrity of the patient by invasive medical care.”
22. Hence the focus is on whether it is in the patient’s best interests to give the treatment, rather than on whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it.”‘
55. The test to be applied by the court is whether the treatment would be in the patient’s best interests. Whilst –
‘the starting point is a strong presumption that it is in a person’s best interests to stay alive … this is not absolute. There are cases where it will not be in a patient’s best interests to receive life-sustaining treatment’. [para 35]
‘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 to put themselves in the place of the individual patient and ask what his attitude 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.’ [para39]
56. In so doing the Court must consider whether the treatment in issue would be futile in the sense of being ineffective or being of no benefit to the patient. The treatment does not have to be likely to cure or palliate the underlying condition or return the patient to full or reasonable health, rather it should be capable of allowing the resumption of a quality of life which the patient would regard as worthwhile. The Court must weigh the burdens of the treatment against the benefits of continued existence and give appropriate weight to N’s family life [para 40].
The balance sheet
Pauffley J, following Baker J in W v M, applied the balance sheet approach, identifying five advantages of attempting to re-insert a PEG, and seven in favour of not so attempting. Importantly, and in a passage that is in some ways strikingly at odds with that of Baker J in W v M (a point to which I return below), Pauffley J, whilst noting that there was:
“60… no evidence that N has made any advance refusal of treatment directly applicable to the circumstances in which she now finds herself, namely in a minimally conscious state facing the prospect of no further provision of nutrition. However, what the views of the patient might be, and what the views of the family are, are highly material factors when considering best interests, although not determinative: An NHS Trust v (1) A and (2) SA [2006] LS Law Medical 29, per Waller LJ at para 59.”
Pauffley J found herself in no doubt as to (1) N’s continuing and irreversible lack of capacity; and (2) where N’s best interests lay:
“65. I also find that it is not in N’s best interests that a further attempt be made to insert a PEG or to secure other means of providing her with artificial nutrition. I am entirely satisfied that the entire range of treatment options has been carefully and diligently considered by the team of clinicians at the local hospital as well as by Dr Jones. I have considered and weighed all factors in the best interests’ checklist as well as the available information about N’s views in relation to life sustaining treatment. Similarly, I have taken account of the wishes and feelings of N’s close family members.
66. The critical decision is whether it is in N’s best interests to continue invasive, risk laden, medical care as would be involved in a further attempt at artificial feeding. I am utterly convinced that it would not. Accordingly, I declare that it is lawful and in her best interests for the clinicians (a) not to make any further attempt to secure a means of providing artificial nutrition; (b) to withdraw the provision of intravenous fluids and dextrose; and (c) to provide such palliative care and related treatment (including pain relief) as considered appropriate to ensure she suffers the least distress and retains the greatest dignity until such time as her life comes to an end.”
Comment
In W v M, Baker J held (contrary to the submissions of the Official Solicitor) that the ‘conventional’ balance sheet applied to determining where a patient’s best interests lay in continuing life sustaining treatment whilst they were in an MCS. In that case, Baker J:
“230… accept[ed] without qualification that [the family members] B and S are accurately relaying the various statements made by M in the past. I accept, therefore, that when her grandmother and father were in declining health and moved to live in nursing homes, M said on more than one occasion words to the effect that she would not wish to live like that, that she would not wish to be dependent on others, and that she “wanted to go quickly”. I also accept the evidence that, when reports about Tony Bland appeared on television, M expressed views to the effect that it would be better to allow him to die.”
However,
“230… , as conceded on behalf of the Applicant, there is no evidence that M ever specifically considered the question of withdrawal of ANH, or ever considered the question whether she would wish such treatment to be withdrawn if in a minimally conscious state. Furthermore, even if M did specifically consider those questions, there is no way of knowing her current views, having lived in that state for over eight years. Given the importance of the sanctity of life, and the fatal consequences of withdrawing treatment, and the absence of an advance decision that complied with the requirements previously specified by the common law and now under statute, it would be in my judgment be wrong to attach significant weight to those statements made prior to her collapse.”
He also accepted that S and B believed that M would want ANH to be stopped, and that they believed the withdrawal of the treatment is in her best interests and would therefore wish that to happen. He took their evidence into account but did not think it carried decisive weight (see paragraph 250). Rather, he expressly held that the importance of preserving life was of determinative weight (see paragraph 249).
N’s case might be distinguishable on the facts; in particular, M’s case was about withdrawal of ANH rather than sanctioning the decision not to keep offering ANH. It seems to me, though, that the logic of Pauffley J’s analysis did not turn on ‘standard’ distinctions between omission and commission but (rightly) rather on the fundamental question of whether continued PEG feeding was in N’s best interests. Moreover, she did not just sanction a decision not to seek to restart PEG feeding bit also the withdrawal of intravenous fluids and dextrose.
It is undoubtedly correct that M did not manifest the same resistance (however that is to be characterised, and expressive of whatever level of ‘sentience’) to the provision of ANH. However, legally, both were held to be in the same position of minimal consciousness and Pauffley J did not, as she could have done, seek to ascribe to N wishes and feelings based on her actions, but rather focused on her earlier expression.
In this regard it seems to me that there is something rather different about the approach adopted by the two judges to the wishes and feelings expressed by and on behalf of the individual by those closest to them. On a proper analysis, it seems to me that N’s comments as to what she would wish in the event of a road traffic accident were of a similar level of generality to those expressed by M in relation to Tony Bland’s case, and the views expressed by the families of the two women as to what they would have wished were materially identical. But it seems that in N’s case they were given very significant weight, but in M’s case they were not.
I, for one, consider that Pauffley J’s analysis is one that is both compelling and humane. It will be very interesting to see whether Hayden J follows a similar approach if and when the case of Sheffield Teaching Hospitals NHS Trust v TH returns to Court, as this is another case where it would appear, on its face, entirely clear that we know what P would have wanted – and that it is not to live in the way that medical science now allows.
[I post here a thought-provoking comment by Jonathan Fisk, a former consultant psychiatrist for older people and now an LLM student in the CSEP at Manchester].
This judgment is to be welcomed for its recognition of the dignity of greatly incapacitated people – but the Court seems to have underestimated the psychological and the neurological problems at issue.
The Court accepted as ‘highly material’ statements by family members about N’s previous wishes. There is however always reason to doubt such statements, for a family member may have many motives for their testimony, including the wish to bring to a close the distress of seeing a loved one suspended between life and death; or to bring their (supposed) suffering to an end. Their own views of the sanctity of life cannot but play upon them. The tedium, frustration and expense of repeated hospital visits and meetings with professionals can have influence. It cannot therefore be appropriate to give weight to uncorroborated statements by members of a patient’s family.
So save for an absolutist stance, there seems little alternative to the hedonic calculus to which the Court refers. Even though there is the metaphysical difficulty of weighing here the apples of indignity against the pears of despair, there is an obligation on the Court, as there is on professionals when they consider ‘futile’ treatment, to be explicit about the metric of the scales that decide who lives, who dies. Instead it relies on a bald checklist.
Then there is the medical evidence. The delays between attempts to provide nutrition for N were not examined by the Court. The doctors who gave testimony appear to have conflated the not insuperable difficulties of providing parenteral nutrition with the gloomy prognosis, as if the latter justified a lack of enthusiasm for the former. More importantly, the court was not offered balanced evidence about the prognosis of MCS, here described as ‘a perpetuation of a state in which none of us would wish to find ourselves.’ Though any degree of recovery after a year in MCS must be remote, studies have shown that recovery from MCS is not uncommon. So Kang and colleagues followed 56 patients aged 10-73 years, initially in a vegetative state (more disabled than N) for a year and found that 24 recovered awareness (though only 3 recovered to moderate disability) [1]. Godbolt and colleagues [2] found that 13 of 13 patients in a minimally conscious state had recovered consciousness at a year.
Last it should be noted that it is becoming clear that it is possible to communicate with people in MCS in order to determine their preferences; and the evidence for this is well summarised in a recent review. Owen reports [3] that patients in PVS, so more disabled than N. were placed in fMRI scanner. It was found that they could respond to verbal questions, answering ‘yes’ or ‘no’ by imagining two different tasks (playing tennis or walking around their home) which reliably changed the patterns of activity in their brains. So it may soon be possible that the wishes of someone like N can be directly determined and her wishes properly respected.
[1] Kang X-g. et al.(2014) ‘Development of a simple score to predict outcome for unresponsive wakefulness syndrome.’ Critical Care 18. Online at http://ccforum.com/content/18/1/R37 (last accessed 29 July 2014)
[2] Godbolt A.K.(2014) ‘Disorders of consciousness after severe traumatic brain injury: A Swedish–Icelandic study of incidence, outcomes and implications for optimizing care pathways.’ Journal of Rehabilitation Medicine 45.(8) 741-748
[3] Owen A.M. (2014) ‘How Doctors Peer into the Minds of Vegetative Patients. Communicating with patients who appear to lack consciousness is becoming a reality.’ Scientific American 310.(5). Online at http://www.scientificamerican.com/article/how-doctors-peer-into-the-minds-of-vegetative-patients/ (last accessed 29 July 2014)