A series of recent court cases have continued to explore the boundaries of our legal rights to determine how and when we die. The case of Tony Nicklinson raises important questions about the right of disabled adults to be supported by professionals in ending their life. By contrast, the case of ‘E’, an anorexia patient, shows that capacity is an important ‘gatekeeper’ concept for autonomy over end of life decisions. But E’s case also raises questions about how ‘best interests’ decisions regarding end of life decisions should be made. The influence of ‘intuition’ on best interests decisions introduces problematic legal and political issues around uncertainty and arbitrariness. E’s case also raises intriguing legal questions about the legal status of Court of Protection ‘declarations’ of best interests which are not accompanied by an order directing that a particular treatment be provided.
The Guardian have been giving excellent coverage to the ongoing case of Tony Nicklinson, a man with locked-in syndrome resulting from a stroke. Mr Nicklinson has issued judicial review proceedings to argue for a change in the law to allow a defence of ‘necessity’ against a charge of murder for a professional who assists a person with voluntary euthanasia. As a case about voluntary euthanasia, Mr Nicklinson’s case is bound to raise controversy and debate, and in order to participate in that debate rather than remain a bystander, he has joined twitter (@TonyNicklinson) so that followers can ask him questions. The Guardian and Observer newspapers have been instrumental in organising this, and they are also conducting a week long interview and will write a piece in Sunday’s Observer based on these twitter exchanges and other issues raised by the case (here’s a link to Tony’s “twitter interview”, and here’s a longer article on his case). Tony’s tweets are eloquent, moving and extremely persuasive. Here’s what Tony has to say about ‘slippery slope’ arguments, in response to a comment piece in The Independent:
Rosalind English has written a great blog post covering a recent ruling on the right to die by the British Columbia Supreme Court (Lee Carter, Hollis Johnson, Dr. William Shoichet, The British Columbia Civil Liberties Association and Gloria Taylor v Attorney General of Canada), which is well worth reading and – in the long run at least – may have some persuasive authority on domestic cases. I wrote a piece some time ago which discussed voluntary euthanasia in various European jurisdictions where it is permitted, although I have to say I found the lack of safeguards – or the rather haphazard application of the safeguards – in some of those jurisdictions rather troubling.
Passive euthanasia – the withdrawal of life sustaining treatment – is permitted in the UK with a person’s consent so long as they have capacity, and in some other instances where treatment would be futile and it is not in a person’s best interests. But active euthanasia – the intentional hastening of a person’s death – is not lawful (although, see the doctrine of the double effect). Earlier this year I helped to care for a relative who died a very slow and painful death following a fall. Her death followed a decision to withdraw treatment for infections contracted whilst in hospital, and a decision taken to care for her in a nursing home where intravenous nutrition and hydration were not possible, rather than a transfer back to hospital where she had been terrified and alone for most of the time. Following this experience, I am not at all convinced that the slippery slope dangers associated with active euthanasia are not already present in passive euthanasia. The dangers of passive euthanasia are evidenced by the unregulated Dutch practice of versterving (see this post), and domestically cases where individuals of a certain age, or with certain conditions might not be treated where younger or less disabled counterparts could be. As a care worker, I once witnessed a GP refuse to call an ambulance for an older person clearly having a stroke saying “well, she is 80…” (we called the ambulance, and she made a recovery). Lack of treatment can be just as fatal as active euthanasia, and is no less vulnerable to discriminatory bumping off of the burdensome and troublesome.
Meanwhile for my relative, despite truly excellent palliative care, with a dedicated nursing and medical team and the presence of family round the clock, those final days filled her with terror and pain and life for her seemed to me a cruel torment. She definitely could not have passed a capacity assessment, but she begged us every time she woke up, to help her to die. We want a bright line rule so badly for these complex ethical issues – capacity/incapacity, passive/active – but increasingly I sympathise with those such as Tony Nicklinson in arguing that they can incur much suffering, and I am not sure they offer the protection we want to believe they do. I don’t pretend to have any answers, ‘a few simple rules so that those who need protection get it’, but I don’t think we should ignore the fact the status quo is problematic too.
Implicit in Tony Nicklinson’s argument for his right to assistance to end his life based is his right to choose. The importance of Nicklinson’s eloquence, his persuasive ability, points to the social – as well as legal – importance of capacity in asserting a right to decide how and when we die. Non-competent people, like my relative, may suffer dreadfully too – but the Commission on Assisted Dying argues only for the rights of people like Tony to take their life, and ‘does not propose any legislation that might allow non-competent people to receive assistance in ending their lives.’ In another recent case, the Court of Protection ruled that a young woman with anorexia, E, lacked the mental capacity to refuse treatment which might prolong her life, but without which she would almost certainly die. The case has already received much excellent coverage in various places, including a post on the UK Human Rights Blog by Richard Mumford, a post by Obiter J and a summary from Doughty St Chambers (barrister Paul Bowen acted for the local authority in E’s case, and also happens to act for Tony Nicklinson as well). As such excellent summaries exist, I won’t repeat them here, but it is worth quoting this passage from the judgment on what the treatment would involve:
E’s immediate transfer, via an intermediate hospital with an intensive care facility under the care of Dr C, to what may be the country’s leading facility for the treatment of advanced eating disorders (‘the specialist hospital’) under the care of Dr M. She would be stabilised and fed with calorific material via a nasogastric tube or a PEG tube inserted through her stomach wall. Any resistance would be overcome by physical restraint or by chemical sedation. The process would continue for a year or more. Once her weight had been restored, she would be offered therapies for her eating disorder and for her other physical and psychological problems. By these means, she might overcome her feeling that life is not worth living.
The ruling in E’s case has received a rather mixed reception. Barbara Hewson, a barrister, wrote a piece in Spiked magazine in which she argued that the case showed ‘how paternalistic British courts are becoming’. She comments:
The court has been staffed almost exclusively by judges with a background in family law. This means that they are used to dealing with disputes concerning children rather than adults. In children cases, the rule is that the child’s welfare is paramount (2). The prevailing mindset is therefore paternalist. This does not fit well in cases involving the lives of adults …[R]eferences to E being ‘young’ betray the paternalism that operates in cases involving children. Seemingly, though a mature adult of 32, Ms E retains the status of a child in the eyes of this court.
Best interests and the problem with intuition
Once the court had determined that Ms E lacked capacity to refuse the treatment, and the advance decisions were invalid, the best interests test of s4 MCA applies. But of course, s4 MCA is offers only a procedure for making substituted judgments, not substantive direction as to how competing factors should be weighed. In an excellent comment piece in the Guardian, Daniel Sokol writes that it is unlikely in such cases that either ethics or law would yield a single answer, he comments:
The judge’s decision on E set out the factors in favour of both palliative care and forced feeding and concluded that “the balance tips slowly but unmistakably in the direction of life-preserving treatment”. The judge tellingly described the balancing process as “intuitive”. In his Philosophical Investigations, Wittgenstein used a different metaphor: “If I have exhausted the justifications I have reached bedrock, and my spade is turned. Then I am inclined to say: ‘This is simply what I do’.” Those who disagree with the judge’s decision may wonder why the balance tips that way and not the other. The judge’s reference to intuition suggests his spade has turned, however, and he may well reply “This is simply what I think.”
If cases are to be determined by intuition, and that intuition is highly fact sensitive, what does this mean for legal certainty? Cases like K v LBX (2012) show just how different those intuitions can be when influenced by different ideologies, in that case of ‘family’ or ‘normalization’ in the care of adults with learning disabilities. Intuition will creep into law where there is discretion. Legal certainty, and the limiting of individual discretion, are fundamental principles of the Rule of Law, but discretion can only be limited so far before unfairness creeps back in. In The Rule of Law the late former Supreme Court judge Tom Bingham emphasised that judicial discretion was important in a variety of contexts to take into account the individual circumstances of the case, in order to avoid injustice. However, he also emphasises that such discretion must be constrained according to clear principles, must not be influenced by ‘judicial prejudice or predilection, or whimsy’, he also states that it would be unjust if practices varied unduly. The difficulty here is that we are still in the early days of development of s4 MCA case law, so judicial discretion is necessarily not so constrained by clearly established principles as it might be in, say, a decade’s time. But a bigger problem, in my view, is that the vast majority of substituted decisions made under the MCA are not made by judges, but by professionals and carers. These individuals are far less likely to know about common law principles developed under the MCA, particularly given the poor mechanisms for publication and dissemination of Court of Protection case law. There is significant scope for prejudice, predilection, whimsy to creep in, not to mention significant variation between different decision makers each persuaded by different intuitions.
Before returning to the topic of end of life decisions though, I think it is worth making a point about the MCA in defence against charges of arbitrariness, uncertainty and excessive discretion. Prior to the MCA coming into force, these decisions were still taken but without any legal framework at all, so the MCA has at least improved the situation by providing a minimal framework for the development of principles and a mechanism for appeals. As Phil Fennell has written in relation to the rights of mental health patients, even limited and procedural rights ‘open up areas of the… system to scrutiny which might otherwise remain hidden, and they require those who operate the system to reflect on and justify what they are doing’ (FENNELL, PHIL (1986) ‘Law and psychiatry: the legal constitution of the psychiatric system’. Journal of Law and Society, 13(1), 35). In a very different tradition to republican political philosophers and writings on the rule of law, Ben Golder and Peter Fitzpatrick write in Foucault’s Law of the importance of law’s ‘openness’ (or ‘alterity’ for the post-structuralist minded) to new discourses and forms of power. Such openness means that law can never be fully ‘colonized’ by a particular dominant ideology or form of knowledge or class of people (e.g. psychiatry, or social work, etc). I think we can also see advantages in the ‘openness’ of s4 MCA to a wide range of political, social, moral and ‘expert’ considerations. Take the case W v M (2011), for example, and look at the parade of different witnesses, all of whose views are carefully considered and diverge considerably. To borrow from sports terminology, this case could be regarded as an ‘upset’ of the traditional hierarchies of ‘expert opinion’, where the views of lowly care workers played a significant role in counterbalancing the opinion of world leading experts on neurorehabilitation.
Whatever one thinks of the outcome of the case, I find it reassuring that the court did not dismiss the testimony of those who worked with M day in and day out on the basis that they had ‘no training in neurological observation’ , . The forms of ‘expertise’ and knowledge the Court of Protection is open to is far broader than the historic Bolam standard, or perhaps even the kinds of knowledge that influence decisions in mental health tribunals – the voices of family members in particular are particularly strongly heard in contrast with other areas of medical law. Some might argue that the voice of ‘P’ is not strong enough. In the discussions around Article 12 CRPD there are arguments for P to be present in court wherever possible, to be represented in his own right without that representation being mediated through his ‘best interests’ but through what P himself wants (e.g. LEWIS, OLIVER (2011) ‘Advancing legal capacity jurisprudence’. European Human Rights Law Review, (6), 700-714). It is interesting to observe, as Barbara Hewson does, that the only people arguing for what Ms E wanted in court were her parents – who were unrepresented. E was represented through a litigation friend, although her solicitor noted ‘that in the absence of contrary medical opinion he would have felt able to take instructions from E’ . The ‘openness’ of the MCA to the ‘expertise’, ‘knowledge’ and personal perspectives of ‘P’ may thus be more limited than it is for other influences, because it tends to be refracted through the perspectives of those charged with acting in their best interests. Nevertheless, the existence of the MCA and the Court of Protection at least brings these issues to light – it give a legal and political charge to issues which might previously have been considered ‘private’, and incurred little scrutiny. In the long run, the MCA may come to be seen as part of an evolutionary process of more nuanced principles for interferences in the affairs of people with mental disorders, and hopefully such principles will reflect the ‘deliberative democratic’ principles espoused by Pettit, and greater influence from the voices of disabled people themselves. My feeling is that the MCA and the CRPD together sew the seeds for some very interesting developments in the rights of adults with mental disorders over the next few decades.
Further questions raised by E’s case
Returning to the case of E again, the case raises some other more technical legal questions which have intrigued and perplexed me. The application was brought by the local authority, who as a local authority were not proposing a course of treatment which they could provide, but seemed to have felt ‘that E’s position should be more fully investigated’ . The health authority, meanwhile, had – with the agreement of E and her parents – proceeded to treat E with palliative care, and adopted a ‘neutral position’ in respect of the case . This seems to me to quite an unusual form for cases heard under the MCA to take – I am certainly much more familiar with Court of Protection cases where the organisation who favour the treatment or service would be providing it, and are seeking some kind of legal protection for proceeding with it. The judge initially deferred making a decision about forcible treatment due to uncertainty about whether the considerable resources required would be made available by the health authority , although they subsequently declared that they would provide the funding if the court ordered that the treatment was in E’s best interests. In his piece on the case for the Huffington post, Dr Raj Persaud comments:
‘A dramatic rise in the use of compulsory admissions over the last two decades does not mean that psychiatric disorders have in their nature got worse, but that the prospects for those who have them seem more bleak. This is because a progressively starved, more disorganised NHS is less effectively caring. Those desperately trying to look after patients who’ve reached the end of this road, are therefore forced to seek help from sources outside the health service. So now we dispense with the doctors, and retain the lawyers.’
The suggestion seems to be that the case was brought to lever resources out of a ‘progressively starved’ NHS. Yet the Court of Protection cannot, at law at least, require resources to be made available that would not already be required under public law – and this was not a public law case. But a theme that has recurred in my interviews and discussions with MCA and DoLS practitioners, is that even though ‘best interests’ cannot require new options to be put on the table that were not already made possible through public law, the MCA can sometimes cast an uncomfortable spotlight on the paucity of options available from which substitute decision makers can choose. The Court of Protection is one hell of a spotlight, and I can imagine that in some cases such detailed scrutiny of ‘best interests’ might result in more costly options being placed on the table out of sheer embarrassment if nothing else. Whether that is what happened here we will never know, but certainly it seems that without the local authority’s legal intervention this extremely costly treatment option would not have been pursued by the health authority.
A second issue which perplexes me about this case relates (rather predictably, for regular readers of this blog) to E’s liberty, and the legal status of the judgment itself. Treatment which involves long term forcible feeding, whereby ‘Any resistance would be overcome by physical restraint or by chemical sedation’, almost certain involves depriving E of her liberty. The judgment seems, to me, to rather skim over this issue. In paragraph 13 it states that Article 5 of the European Convention on Human Rights is ‘relevant’ to E’s case, but discussion of her Article 5 rights rather tails off after that point. E’s doctors indicates ‘he would be willing abide by the court’s decision and would participate in placing E under a Mental Health Act section to ensure that treatment was carried out’ , indicating that E’s Article 5 rights would be safeguarded not by the DoLS or an order of the Court of Protection but by the MHA. Indeed, if E were eligible for the MHA for this treatment (see B v Croydon Health Authority, 1995), then she would be ineligible for the DoLS (GJ v Foundation Trust, 2009) and furthermore the Court Protection would have been unable to authorise her detention as well (s16A MCA). Note, however, that the judge does not order that the treatment be provided [Edit: see footnote below], only declares that:
‘…it is lawful and in her best interests for her to be fed, forcibly if necessary. I find that the resulting interference with E’s rights under Articles 8 and 3 is proportionate and necessary in order to protect her right to life under Article 2.’ 
Note [added 4 July 2012] The 39 Essex Street newsletter (July) has taken up the questions around eligibility for DoLS in relation to E’s case that I raised here (as did The Masked AMHP). They contacted Paul Bowen, who was able to confirm – and permitted to report – that the judge had indeed made an order authorising ‘Any reasonable and proportionate measures used in relation to the provision of artificial nutrition and hydration which have the effect of depriving E of her liberty’, but that an application for detention under the MHA would be made. If E was not detained under the MHA within a short time, the case was to return to court. The newsletter authors conclude by saying:
‘… if, as appears likely, E is detained under the MHA, no jurisdictional issue arises and the Court’s interim DOL Order will cease at that point to have effect. But if, for example, an approved mental health pr ofessional were to decide that an MHA application ought not to be made, E will fall between the two regimes of detention, as she will be ineligible under the MCA. We would suggest that this would be an area where (even if there is, in general, parity between the MHA and MCA), the MHA should take primacy, and in areas of doubt, assessors must ‘take all practical steps to ensure that that primacy is recognised and given effect to’ ( GJ at para 65).’