Eleanor Roosevelt, 1958

'Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.' Eleanor Roosevelt, 1958

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The Small Places has moved to a new home here, including all the old posts. Any posts after 6th March 2014 will appear on the new website, but old posts are preserved here so that URLs linking here continue to work. Please check out the new site.

Tuesday, 7 August 2012

Allan Norman: Corollaries of the Right to Life: A Duty to Live or a Right to Die?

It's a pleasure to host this carefully argued guest post by solicitor and social worker Allan Norman on two important Court of Protection rulings on the 'right to die'.  Allan takes up issues around the presumption of capacity, personal autonomy, quality v quantity of life, and the controversial question of whether resources should have a bearing on these decisions.  If anybody would like to respond to Allan's arguments or arguments elsewhere on these cases, please use the comments below or get in touch if you'd like to write a guest post.
 Re E (Medical treatment: Anorexia) (Rev 1) [2012] EWHC 1639 (COP) (15 June 2012)

Thou shalt not kill, but need not strive
Officiously to keep alive
- from The Latest Decalogue, by Arthur Hugh Clough

A British Medical Journal editorial last month argued, '
Sanctity of life law has gone too far'. The Emeritus Professor of Medical Ethics, Raanan Gillon was specifically critiquing a judgement of the Court of Protection last year, W v M and Others [2011] EWHC 2443 (COP) (28 September 2011). That case held, notwithstanding the previously expressed wishes of the person concerned, who was in a minimally conscious state, that it was in their best interests to be kept alive, and that it was properly a matter for the court to decide. Gillon's editorial criticises the approach taken to best interests that overrides express wishes, the requirement to involve the court in best interests decision making, and the resource implications. The editorial has itself been criticised, as the UK Human Rights Blog has highlighted, as a call to "dehydrate dementia patients to save money". And that critique of Gillon resonates with another recent media story from another prominent health professor about the Liverpool Care Pathway, 'Elderly patients 'helped to die to free up beds', warns doctor'. With raw nerve criticisms like that, I am staking a lot when I defend Gillon's arguments, as I do here.

In June, the Court of Protection ruled in the case of Re E (Medical treatment: Anorexia) (Rev 1) [2012] EWHC 1639 (COP) (15 June 2012). So clearly did Gillon's arguments seem to chime with that case, that it took a while to appreciate it was another case in issue, despite the timing of publication. Another case where express wishes were held to have been inadequately articulated. Another case where best interests were held to require being kept alive. Here, I argue that Professor Gillon's arguments might equally apply to E's case.

Specifically, I criticise the decision in Re E for:
  • misapplying the presumption of capacity;
  • getting the balance between life and autonomy wrong; and
  • distorting healthcare priorities
A presumption of mental capacity?

"A person must be assumed to have capacity unless it is established that he lacks capacity." These are the opening words of the Mental Capacity Act. A presumption in law serves at least two purposes. It sets out the starting point, which will prevail unless adequately rebutted; and it provides a way of deciding issues where the evidence does not point conclusively in either direction.

The judge in this case had to dispose of two attempts at advance decisions, as well as current capacity. The judge observes that,
I consider that for an advance decision relating to life-sustaining treatment to be valid and applicable, there should be clear evidence establishing on the balance of probability that the maker had capacity at the relevant time. [paragraph 55]

In relation to the first advance decision, a doctor expressed the view, with reference to the Act, that she had capacity. The next day, her wishes were written down, signed and countersigned. A few days later, she was sectioned. Over the coming months, she took steps to:
achieve sufficient weight to be regarded as capable of making another advance decision... On 3 October, E signed a formal advance decision, witnessed by her mother and a mental health professional... I find that the s. 25 formalities surrounding this decision were complied with and I further find that E has not withdrawn it... E had the benefit of advice from her independent mental health advocate and from a solicitor. This also appears to have been the general medical view, but no formal capacity assessment was undertaken at the time. [paragraphs 60-64]

I cannot help but conclude that in E's case, the presumption of mental capacity, despite being specifically stated, appears to have gone by the wayside. The judge appears to have done mental gymnastics. Everything was done by the book, in fulfillment of the goal to which E had been working. So, in the absence of evidence that she lacked capacity, why was she not assumed to have capacity, in accordance with section 1? The answer is to be found in the extract from paragraph 55 above: the judge has reversed the statutory presumption in relation to life-sustaining treatment, effectively re-writing the law for E's case.

That is not good law. I can well understand that where life or death is in issue, getting it right matters more than in mundane matters. Hence we might to good effect borrow a legal test like "anxious scrutiny" and apply it to the test. But anxious scrutiny would have surely revealed that here there was enough to reassure the judge that there was no basis to displace the statutory presumption. Rewriting the statutory presumption was not called for.

Nonetheless, the judge also has to dispose of current capacity. What concerns me here is that no-one seems to have put forward to the court a case that E had capacity. I have argued elsewhere that we are developing two models of advocacy, which I have termed mimetic and analytic advocacy. The former tries, so far as possible, to detect, amplify and reproduce the authentic voice of the person concerned. The latter is concerned with representing the interests of the person concerned; as with advocacy based on best interests. The results of the two models need not differ, but in this instance they do, and It is a potential problem of the Court of Protection that all the parties can be too taken up with the second model, and overlook the first. But surely the issue of capacity was never something for the parties to agree? Surely the presumption of capacity taken together with the mimetic model of advocacy required someone to inject into the proceedings E's own voice. The judge dismisses her own voice in the advance decisions with reference to an inadequately formalised capacity assessment; but then finds her to currently lack capacity without the benefit of a formalised capacity assessment. Sauce for the goose?

In fact, the reasoning comes perilously close to saying, "anorexics lack capacity", and her parents complain as much. Which, of course, breaches another fundamental principle of the Act, that capacity decisions are individualised, decision and time specific decisions:
I note Dr Glover's view that anyone with severe anorexia would lack capacity to make such a decision. To this, E's parents respond:

"It seems strange to us that the only people who don't seem to have the right to die when there is no further appropriate treatment available are those with an eating disorder. This is based on the assumption that they can never have capacity around any issues connected to food. There is a logic to this, but not from the perspective of the sufferer who is not extended the same rights as any other person."

It is unnecessary to reach a conclusion about Dr Glover's general point, but I acknowledge that a person with severe anorexia may be in a Catch 22 situation regarding capacity: namely, that by deciding not to eat, she proves that she lacks capacity to decide at all. [paragraphs 52-54]

The displacement of express wishes by best interests

E's case is one of a number in which three findings come together. And in every case where these three findings come together my heart sinks:
  • A clearly articulated express wish;
  • A capacity decision that is based on weighing the alternatives;
  • A best interests decision that conflicts with the express wish.
There is, of course, nothing inherently unlawful in the progression above. My concern is that the progression may well have started from the other end: "My view is that it is in your best interests to be alive [or substitute what the decision happens to be about]. If you can't see that, then you can't properly understand and weigh information. Therefore I am entitled to my view prevailing."

I have already observed that the parties were arguing about best interests, a point they could not have arrived at without displacing capacity. But there are other pointers towards this kind of reasoning. In particular, it is clear, because it is so memorably and repeatably articulated, that this judge does indeed elevate being alive to a high place - that is, the bare fact of being alive rather than the quality of life: "We only live once – we are born once and we die once – and the difference between life and death is the biggest difference we know." [paragraph 137]

Moreover, it is also clear that this was central to the ratio of the decision: "In the end," said the judge, "the presumption in favour of the preservation of life is not displaced." [paragraph 140]. What is significant in that sentence is the reference to preservation of life. My starting point, or in law my rebuttable presumption, says the judge, is that I should make decisions that should keep people alive.

Professor Gillon prays in aid no less a name that Hippocrates on the comparative value of being alive and quality of life:
Since Hippocratic times (at least) the primary goal of medicine has been to benefit people's health. Until recently, the exercise of doctors' very limited capacities to prolong life has almost always led to such benefits. Now, however, medical advances have led to a vastly increased capacity to keep people alive without, in many cases, providing any real benefit to their health.

I think it is worth pausing to grasp Gillon's point here. There will doubtless be kneejerk responses to what I am saying, that the purpose of healthcare is to keep us alive. But is it? Is not the fundamental purpose of healthcare to care for the sick? I think three things have conspired to cause us to believe that the purpose of healthcare might be to keep us alive:
  • Free healthcare - since the advent of the NHS, we have not had to worry about the cost of care. If we were paying, I expect most of us would want to be restored to health; and I expect most of us would want to be relieved of suffering. But if you reflect for a moment on the anguished objections of people to paying for social care when this involves using up their inheritance, how would we feel about indefinite life support at our own or our family's expense? The fact that it is not at our own expense enables us to think differently about healthcare which will never restore to health;
  • Attitudes to death - most organised religion seeks a negative answer to whether death is the end, but organised religion is in decline in the western world, which also largely seeks to hide or disguise the fact of death. Therefore, as the judge says, the difference between life and death is the biggest difference we know; but it is also one we fear and want to be protected from;
  • Advances in medicine - alongside free healthcare and changing attitudes to death, scientific advances have made indefinite or prolonged life support possible. Which brings us to Gillon's point above. Historically, there was no difference between restoring people to health and keeping them alive, so that asking which of the two was the purpose of healthcare made no sense. Now that we can achieve the latter without the former, we really ought to be asking the question. 
Gillon also says - and as I have indicated, I find myself agreeing:
The stringent conditions in the Mental Capacity Act for an advance decision to refuse life prolonging treatment relate to a person's right to make that decision binding in law. But the act does not say that, unless those legal conditions are met, a person's ordinarily expressed views about being kept alive should be given little weight when others determine that person's best interests after he or she is permanently incapacitated.
Resources and the rationing of human life

It was not enough for Gillon to question the imperative to keep people alive. He also did so with reference to the resource implications. And again, I cannot help but observe that the resource implications loomed large in E's case. Indeed, the promise of additional state resources was critical to the judge's reasoning:
"the state, having instigated this plan of action for E in the way that it has, is now honour-bound to see it through by the provision of resources in the short, medium and long term. Had the authorities not made that commitment, I would not have reached the conclusion that I have." [paragraph 142]

Now, are we entitled to apply a cost benefit analysis, weighing the value of E's life on a set of scales, with the lives that could be saved or enhanced by equivalent resources on the other side?

Three observations: one about litigation, one about the nature of rights, and one about moral philosophy.

The litigation observation is simply this. A lawyer's interests to act in the best interests of their client precludes the lawyer from subjugating their client's interests to those of wider society - understandably. Likewise, judges will emphasise that they must decide the case in front of them, and frequently, the question of where the resources come from is none of their business. It is therefore at least worthy of note that while the judge does not explicitly weigh the cost of his decision, he does explicitly say that he would have decided differently had resources not been guaranteed.

The observation about the nature of rights draws on Professor Brown's wider critique of the notion of human rights,
If rights are thought of as trumps, as absolutes to be defended in all circumstances, then it very likely that some of these circumstances will involve the violation of an obvious public interest. However, if rights are thought of as less than absolute, as simply one set of considerations to take into account when deciding on the rightness or otherwise of action, then the protective power of rights simply withers away. Chris Brown (1997) Universal human rights: A critique, The International Journal of Human Rights, 1:2, p48

Applied here, if E does have a right to the resources which have been committed, that may well not be in the wider public interest; if the judge is entitled to decide the case with reference to the wider public interest, that suggests E does not have a right to the resources.

And moral philosophy. 25 years ago as a student, one of the books that most influenced me was
Jonathan Glover's 'Causing Death and Saving Lives' (the link is to his own succinct summary of that great work). Glover argued cogently for a consistent moral philosophy that addresses all forms of death-causing and death-allowing. Glover notes that many of our instinctive approaches to questions of death-causing and death-allowing had no particular moral consistency. He devotes a whole chapter to the question of numbers. We will instinctively favour saving one real life rather than many hypothetical or statistical lives. We will instinctively favour saving a life to which we are close over a life from which we are remote. We will instinctively want active intervention for an immediately threatened life, but cope with not doing anything to save the life that is not immediately threatened... But why? What his book shows is how hard it is to frame these instincts within a consistent moral philosophy concerning the value of human life.

To end where we started, Professor Gillon's critique - the part that prompted the emotive response about dehydrating dementia patients to save money - reads
The logical implications of this judgment threaten to skew the delivery of severely resource limited healthcare services towards providing non-beneficial or minimally beneficial life prolonging treatments including artificial nutrition and hydration to thousands of severely demented patients whose families and friends believe they would not have wanted such treatment. The opportunity cost will probably be reduced provision of indisputably beneficial treatments to people who do want them.

E is not a dementia patient. But she is someone "whose families and friends believe they would not have wanted such treatment." The judge specifically records,
I have been struck by the fact that the people who know E best do not favour further treatment. They think that she has had enough and believe that her wishes should be respected. They believe that she should be allowed a dignified death...  I acknowledge the significant risks involved in treatment, not excepting a risk to life. I acknowledge the modest prospects of success and the wholesale and prolonged invasion of E's privacy and self-determination that is proposed. I acknowledge the high chance that, even if short-term progress can made, long-term difficulties will remain. I accept that E may recover capacity only to make a valid advance decision. I accept that a resumption of treatment deprives E of an imminent and relatively peaceful death. [paragraphs 130-135]

Dehydrating patients to save money is emotive language which in my assessment also misrepresents the reality on the ground.

In E's case, the judge's affording of greater weight to life over quality of life means that E will forego a "dignified...imminent and relatively peaceful death". It was possible to afford dignity to E and respect her autonomy and provide "indisputably beneficial treatments to people who do want them". This was not an either-or case. It was a both-and case.

Professor Gillon's maxim could apply again: "Unless this judgment is overturned or modified by a higher court it will gradually and detrimentally distort healthcare provision, healthcare values, and common sense."

Allan Norman (@CelticKnotTweet) is a registered social worker and a solicitor at Celtic Knot – Solicitors and Social Workers.


  1. Hi Allan,

    Thank you for sharing this post - it's really thought-provoking and well argued. I definitely share your concerns about the effective reversal of the presumption of capacity, and the problems with what you call 'analytic' (as opposed to 'mimetic') advocacy in the Court of Protection. Indeed, that's a concern that extends throughout the procedural safeguards of the MCA into the role of IMCA's - nobody in the system is charged with making the best possible case for what P themselves wants, which is surely required for a fully adversarial testing of any interferences with their autonomy.

    I have to confess I'm slightly less comfortable with the resources issues being raised in the context of Court of Protection proceedings. If this was a public law case then resources would be a valid matter for the court to consider, but the Court of Protection is there to make substituted decisions between options available to a person, not to demand that additional options be made available or not available on public interest grounds. I suppose you could make the case that the kind of utilitarian 'public interest' arguments proposed by Glover have a place in public law, but perhaps not in the Court of Protection.

    I feel queasy about Gillon's assumption that life-prolonging treatments are wasted on dementia patients whose family and friends think they would not have wanted this treatment. Sometimes family and friends might be in a position to 'know' this, but often they will not, and often (as in W v M) past comments will not speak to the precise circumstances a person finds themselves in. If people have made an advance directive or an LPA then that's one thing, but we most be cautious of assuming that everyone wants their fate to be determined by family and friends, and that everybody's family and friends are the best judges of their quality of life. Sometimes they will be, but Glover seems to assume they always will be.

    We must also be cautious of taking an excessively medical view of what constitutes 'benefits' to health. There are many people with serious illnesses and disabilities who campaign to reject the presumptions of doctors and medical ethicists that they have poor quality of life (see, for example, the work of Harriet McBryde Johnson, and the Not Dead Yet campaign).

    On the Re E case, the argument I found most persuasive that forced treatment would not be in her best interests (capacity issues notwithstanding) was that there are no studies and no robust evidence that this kind of forced treatment works for people in E's condition. This is indirectly related to resources; that information on the lack of evidence is from the NICE guidelines (H/T to my colleague TH-D for that).

  2. "I feel queasy about Gillon's assumption that life-prolonging treatments are wasted on dementia patients whose family and friends think they would not have wanted this treatment. Sometimes family and friends might be in a position to 'know' this, but often they will not, and often (as in W v M) past comments will not speak to the precise circumstances a person finds themselves in. If people have made an advance directive or an LPA then that's one thing, but we most be cautious of assuming that everyone wants their fate to be determined by family and friends, and that everybody's family and friends are the best judges of their quality of life. Sometimes they will be, but Glover [sic] seems to assume they always will be."

    Lucy, I am not convinced Gillon has intended the assumption you attribute to him! What he argues for, forcefully, is personal autonomy, not the rights of family and friends. He criticizes the judgement for holding that "it would be wrong to attach significant weight to their previously expressed values, wishes, and views unless these had been expressed in a legally valid and applicable advance decision" while giving great weight to sanctity of life.

    In your paragraph above, you distinguish, on the one hand, an advance directive or comments speaking to the precise circumstances in which a person finds themselves, and on the other hand, having your fate determined by family and friends. Gillon is suggesting there is a third possibility - and I venture to suggest it is an extremely common one - that many of us have neither made an LPA nor addressed ourselves to precise future unknown circumstances, but still have a lifetime of expressed values, wishes and views that we would want respected. He is concerned that the judgement leaves no room - apparently no room whatsoever - for those expressed values, wishes and views to be given effect. His reference to family and friends - which I concede might have been better worded - is a reference to them as the sidelined custodians of the values, wishes and views of the patient.

    Not everyone wants their fate to be determined by family and friends, and not everyone's family and friends are the best judges of their quality of life - as you say. But many do, and many are, and more importantly many who want to determine their own fate rely on family and friends not to decide for them but to advocate for them. How are we, after this judgement, to protect the personal autonomy of the many?

    1. Morning! I think you're probably right that it was just poorly phrased, but I do get a bit jumpy about the common assumption that people's views and interests are always perfectly refracted through family and friends, even those that really love them. On the other hand, who would I want to make decisions on my behalf? My husband and sister (although categorically not anybody else I am related to, no matter how much I love them...). Have I made an LPA? No. Because it's expensive and time consuming and I'm very lazy. Like most people. Except I've got even less excuse because I know I should make one, but still haven't done it.

      I do wonder about a Representation system more like that in British Columbia, where there's less legal formality and much less cost in appointing a representative, and a much lower 'capacity' threshold. It still wouldn't be much use for somebody in M's condition though, unless she'd had the foresight to make one beforehand, but somebody like E could almost certainly make one. Besides, under the BC system the threshold for interfering with a person's choices is 'reasonableness', which strikes me as a much higher threshold than incapacity has become (surely, whatever you think of her decision, it was 'reasonable' not to want such an invasive treatment with such small prospects of success?).

      On the question of past expressed wishes and feelings though, I still think it's a tricky issue. People I've known who've had major disablements have initially felt their lives aren't worth living, but over time their values and expectations have changed as a result of living with the disability. That's a problem with advance directives in general though, and I don't have any solutions to the problem that our values shift over time. Perhaps the philosophers do! I just mean to dislodge a little the certainty that our past wishes should always determine our present treatment. Having said that, perhaps the court needs to dislodge a little the 'certainty' that the sanctity of life should always prevail.

  3. Very interesting post and one that throws up the issue of the application of the MCA by CoP judges. It seems absurd that the MCA which was meant to protect some particular groups of people now effectively is about the views and powers of those 'who control the show'.

    It could be argued that loss of personal autonomy in decision making in E's case might reasonably equate with having a meaningless life. The value of human life is determined through the ability to find meaning through our own decisions and actions; as long as they do not infringe the rights and freedoms of others. Just as we do not choose to die, normally, we do not ask to be born- that is an accident of fate.

  4. The MCA has effectively resulted in a category of 'non persons' - beings stripped of rights to any self determination, if not endorsed by someone else- here the CoP or local authority. So even those who can voice their opinions quite clearly can be deemed to lack capacity on the basis of 'they do not understand what they voice' because they cannot articulate this according to prescribed ways determined by other 'learned' persons.

    It is curious with all the emphasis on this site and within some sections regarding 'safeguarding' and the anti 'families know best' stance that things that are actually a problem go virtually unnoticed. With 'non-beings' one engenders extremes of thought in society as to what to do with them.

    1. Over protection, because they need to be protected from themselves at all costs, or to be protected from others at all costs- with use of 'least restrictive methods' to be applied- which mean nothing to a non person.

    2. That such beings are entitled to little more with their lives than protection and direction of their life course by others- which sets them apart from the rest of us human beings. 'Society' incarcerates either literally or metaphorically and forget about them- job done.

    Is it wonder that cases like Winterborne occur more often than they should?

    Neither positions should give feelings of comfort to anyone who cares about other humans. We ourselves might imagine what might be our own fate should we be unlucky to loose capacity well before we die. LPA's might be drafted to favour a spouse or relative long before they are needed- by this time the relationships, under which the LPA was made, might have changed- but who can or will change the LPA? A non person has no rights.

    The whole MCA system is so hidden and geared towards enumeration of the views of judges and 'professionals' we cannot see the harm.