Some thoughts on recent developments in right to die case law

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.

Allan Norman: Sex, residence, and the capacity to make unwise decisions

I'm really delighted to host this guest blog by Allan Norman, Principal Social Worker & Solicitor at Celtic Knot (www.celticknot.org.uk), an independent law firm and social work practice. Allan's post explores how very different real life outcomes can follow a capacity assessment where a person might make an unwise decision, and asks whether we would want the law to be that way if we were the subject of a capacity assessment. Guest posts responding to this question, or on other capacity and social care topics, very much welcomed.

A capacity decision can be, as I tell my students, like a fork in the river. You have to go one way or the other. If a person has capacity, they are allowed to make unwise decisions. If a person lacks capacity, we must make decisions for them in their best interests. Which fork we take is particularly significant if they lead to completely different destinations - that is, the unwise decision that they would have made is the opposite of what we think is in their best interests.

Caselaw is developing some tools for ameliorating the worst effects of this, for example laying emphasis on how a person's previously expressed wishes may form part of their best interests. Meanwhile, I have argued, if you control the capacity question - what is the decision, the making of which has to be assessed - you have significant control over the answer. 

Authoring our ends

For the last two weeks the Court of Protection has been hearing a request from the family of a severely brain damaged who is in a minimally conscious state, to allow her to die.  The official solicitor, who is representing the woman – known as ‘M’ - as her litigation friend, opposes the request.  Until the judgment is published (probably later this week, or early next) we won’t know all the arguments and evidence advanced on both sides.  However, the press are attending the hearing and the family are reported to have said:

‘She can’t move, she can’t speak, she’s fed through a tube, she can’t even enjoy a cup of tea.

'She’s got no pleasure in life; her daily routine is just being taken out of bed, put in a chair, showered, then put back to bed.'

‘There’s no dignity in it.'

‘It’s not a life, it’s an existence and I know she wouldn’t want it.’

They are also reported to have said that ‘she would never want to live a life dependent on others, even if she retained her mental faculties.’

Three conferences and a seminar

I assume most people reading this blog have more than a passing interest in mental capacity law, so I thought I'd draw to readers' attention three interesting looking upcoming conferences [Edit: and a seminar I've just heard about].  I wish I could attend them all...

What is mental capacity?

Today I’ve decided to just put up some notes I’ve been making on “mental capacity” as a legal concept.  They weren’t really written to be a blog post, but I don’t think there’s any harm in sharing them.  It’s not going to contain any great revelations, but I found it interesting to chart how the concept has unfolded from the time of the Law Commissions’ first reports on mental capacity (available under ‘M’ on Bailii).  I’m not a philosopher, but I do find some concepts from philosophy helpful to unpick the ways in which the concept has been used.  If this kind of “abstract” piece isn’t not your cup of tea, maybe come back later in the week for comment on the Neary ruling when it’s out.

Different tests of capacity

The Law Commission discussed different ‘mental capacity’ type concepts in other jurisdictions.  ‘Status’, or ‘category’, approaches make global (or near-global) attributions of decisional capacity on the basis of membership of a particular diagnostic category or legally defined group.  For instance, a status approach might say that anyone within a particular age bracket, or with a particular medical diagnosis, lacks capacity in all matters.   They also noted that the legal status of being a ‘patient’ of the Court of Protection (in its pre-MCA incarnation) effectively deprived them of all contractual capacity ‘whether or not as a matter of fact the patient actually had such capacity’ [3.3]. They rejected status approaches on the basis that they oversimplify the question of whether a person has decisional capacity and they ‘tend to undermine respect for individual rights’ [2.43].  Certain kinds of status approaches are explicitly precluded by s2(3) Mental Capacity Act 2005 (MCA).

Outcome based approaches attribute capacity on the basis of the outcome of a particular decision.  The Law Commission gave this pretty short shrift, saying:

‘A decision which is inconsistent with the views and values of the assessor, or rejects conventional wisdom is by definition incompetently made’

and

‘This penalises individuality and demands conformity at the expense of personal autonomy’ [3.4]. 

They reported, however, that many respondents felt that doctors were applying an ‘outcome’ approach, whereby a person was taken to lack capacity if they rejected a course of treatment which the doctor advised.  Section 1(4) MCA can be seen as a caution against ‘outcome’ based approaches.  I'll consider below whether the MCA formulation allows 'outcome based' approaches in by the back door.

In the event, the Law Commission proposed what they called a ‘functional’ approach, on the basis that it was the most strongly supported by respondents to their consultation, and had ‘the merit of being the approach adopted by most of the established tests in English law’ [3.5].  This ‘functional approach’ was combined with a diagnostic threshold, giving rise to what is referred to in the code of practice as the ‘two-stage test of capacity’ (p41). Unlike status or category approaches, a functional approach is ‘decision specific’ – a person’s mental capacity can only be determined by reference to their ability to make the decision in hand. 

The first stage of capacity assessment: Invoking a diagnostic threshold

Section 2(1) MCA states that a person lacks capacity if they are unable to make a decision ‘because of an impairment of, or a disturbance in the functioning of, the mind or brain.’  The Law Commission considered arguments for and against including a diagnostic threshold [3.10-3.14].  Arguments against included that it might encourage a purely ‘status’ approach to capacity, that it was stigmatising, and that a medical label was in any case superfluous to the legal and moral issues at stake.  The Law Commission felt that the second ‘functional’ stage of the test would discourage a status-only approach, meanwhile, they felt, not having a diagnostic threshold would ‘places too heavy a burden on the functional test... this test is not easy to define or to apply, particularly as to the degree of incapacity which is required’.  They regarded one benefit of the diagnostic threshold as increasing:

...the involvement of people with suitable specialist qualifications in the determination of whether intervention is necessary in an individual case, and what kind of intervention is most appropriate. [3.11]

The formulation quite deliberately reinforces the status of medical and health professional evidence in these matters.  The Law Commission felt a diagnostic test had a role to play ‘in ensuring that the test is stringent enough not to catch large numbers of people who make unusual or unwise decisions’ [3.8]; thus it is medical and health professionals who are charged in law with demarcating the boundaries of madness, non-pathological deviance and eccentricity.  There’s probably a lot that could be said about this decision from governmentality and critical psychiatry perspectives, but I won’t get into that here.  The diagnostic threshold has an influence on the way individuals are described in cases: almost always the first thing we learn about them is their diagnosis, and very often for people with learning disabilities that rather dubious concept – their mental age.  I always wonder how far 'mental age' as a construct has achieved such prominence in case law  because it seems to tacitly sanction paternalistic interventions that we would regard as acceptable in the lives of children, but generally not adults.

The second stage of capacity assessment: The ‘functional test’

The ‘functional test’ of capacity is set out in s3 MCA.  I noticed that in at least one of the Law Commission reports they refer to this as a ‘cognitive’ test.  I am glad they have dropped this terminology. I doubt many psychologists who use the term ‘cognitive’ would mean it in this way, and I share many of the reservations about ‘cognitive’ approaches to clinical psychology expressed by discursive psychologists.  Cognitive approaches can pay insufficient attention to someone's embodied and social context, and offer false claims of neutrality regarding the cultural and political content of the issue under discussion.  By contrast, discursive psychologists acknowledge the 'constructed' nature of psychological concepts, and emphasise that in understanding concepts like 'mental capacity' we should explore what these concepts enable us to do.

There have been attempts to look for ‘cognitive correlates’ of mental capacity by researchers (e.g. Palmer, 2004), but I personally doubt whether these are well founded in principle.  No doubt soon enough we shall see neuroscientists claim to have found the areas of the brain that light up when a person “has capacity”; I hope these claims are treated with the critical caution they deserve.  A key problem with such reductionistic approaches, as we shall see, is that the concept of mental capacity may take into account many features of a person’s circumstances, and many background normative orientations, that would not be picked up in the kinds of tests and scales favoured in neuropsychology.

So, the functional test says that a person is to be regarded as unable to make a decision if they are unable to understand, retain or use or weigh the information relevant to the decision.  It also includes a fourth criterion: the ability to communicate a decision; this was explicitly intended to ensure the MCA covered cases of locked-in syndrome, but may also be important conceptually and legally for people who have limited communication abilities.  Section 3(2) MCA reiterates the message of s1(3), that the most appropriate means to impart the information relevant to a decision should be sought, and a person should be supported in taking the decision for themselves as far as is practicable.  Section 4(3) MCA acknowledges that the capacity to take a particular decision can develop or fluctuate, and requires assessors to consider whether the decision could be taken at a later point when a person may have gained, or regained, capacity.

Epistemic and value commitments in understanding, using and weighing information

In some respects the MCA appears to be a paragon of liberal tolerance of any eccentric or minority views which might inform decisions, but the picture may be more complex than that.  The capacity assessor will need to elucidate exactly what ‘information relevant to the decision’ needs to be understood, retained and weighed in order to make it.  Section 3(4) MCA says that this information ‘includes information about the reasonably foreseeable consequences of (a)deciding one way or another, or (b)failing to make the decision’.  It is hard to see how this aspect of the test could avoid incorporating some subjective judgments as to what information is relevant, and some epistemic commitments about what information is ‘true’ and what consequences are reasonably foreseeable.  The recent debates around capacity to consent to sex illustrate the subjective nature of the 'relevance' point nicely; in D Borough Council v AB the doctor held it to be important that a person understands the nature of consent itself, and the emotional consequences of sex – Mostyn J, deciding, did not.

The epistemic commitments required by a test of capacity to make a particular decision may also be contentious.  Neil Allen has written a great article on this topic, called Is Capacity “In Sight”? (pdf).  He discusses a quote by Munby J in Local Authority X v MM & Anor (No. 1) [2007]:

If one does not “believe” a particular piece of information then one does not, in truth, “comprehend” or “understand” it, nor can it be said that one is able to “use” or “weigh” it. In other words, the specific requirement of belief is subsumed in the more general requirements of understanding and of ability to use and weigh information.”32' [81]

The belief criterion may at times be contentious, particularly if a person is required to have ‘insight’ into having a particular medical diagnosis in order to demonstrate that they have the capacity to refuse treatment for it.  A person may likewise have to concur with treating professionals that a particular treatment would be beneficial, if they are to be regarded as ‘understanding’ the information sufficiently to reject it.  I can also imagine circumstances where a person could be expected to reject certain beliefs of their own to demonstrate understanding, for instance, that homeopathy will not cure cancer.  Allen discusses some interesting examples, including the famous case of Re C (Adult: Refusal of Medical Treatment) [1994] 1 All E.R. 819 (which I can’t find a free copy of online, any links gratefully accepted).  The case Re C concerned a man with a diagnosis of schizophrenia who was under the delusion that he was a great doctor.  He believed that God would cure his gangrenous foot and that medical treatments were calculated to destroy his body, although the doctors believed amputation was the only way to save his life.  The judge found that despite C’s beliefs, he had capacity as there was no evidence of ‘any direct link between C's refusal and his persecutory delusions’.  I heard through word of mouth, although I am not sure if it is correct, that C did in fact go on to survive even without the surgery.

I saw a great talk by Jules Holroyd at a CRASSH event where she discussed possible value commitments underpinning the requirement to ‘weigh’ information; in particular whether anorexic patients might be considered to lack the capacity to refuse treatment if they did not weigh the risk of death or disability sufficiently highly.  Of course some beliefs and values that are not shared by the majority, or by “experts” in a particular field, may nevertheless be accorded respect in law.  This is especially true if they are religious or culturally held by a recognised group.  The legal issue is not whether a person bases their decision on ‘incorrect’ or disputed information, or that they value something in an unusual way, rather the reason for their doing so.  If it is felt to be firmly grounded in a religious or cultural conviction, it will not pass the diagnostic criterion that the failure to believe a piece of information that the capacity assessor holds relevant is caused by an impairment of the mind or brain.  Of course, danger may lurk when 'denialism' or a religious belief are treated as symptomatic of a mental disorder in themselves.

Mental capacity is relational and contextual

“Mental capacity” sounds like a state of affairs in somebody’s head, but it is clear from the case law that the approach taken by judges in the Court of Protection places considerable emphasis on a person’s context and relationships in determining capacity.  A person’s relationships with others may be seen to either improve, or impair, their mental capacity.  The recent case of V v R (2011) is a good example of where relationships and situation have been held to increase mental capacity.  The case concerned a young woman, V, who had suffered a traumatic brain injury.  She was pursuing a compensation claim against the insurers of a vehicle that had knocked her down; her mother had expressed concerns that V lacked litigation capacity, and it was decided prudent by V’s own counsel to settle the matter in case the issue came up later on in proceedings.  According to the testimony of V’s mother, V lacked the concentration required to read legal documents, was prone to making impulsive decisions, and any decisions she did take she took on the advice of her mother.  “The reality” according to V’s mother's testimony “was that she and not the claimant would make any material decision.” [29].  The experts were divided in their views.  In the end, the judge concluded that the difficulties that V might have in making decisions ‘are capable of being ameliorated, if not entirely overcome, by the careful and structured support that the statute contemplates’, and thus V was held to have capacity.  The finding that V had capacity was thus not based on what V could achieve in isolation, but on the practical reality that she went through all major decisions with her mother and based them upon her advice, that her mother conducted the day to day running of the case, and that this support was likely to continue in the future.  Thus V’s relationships and the context within which the decisions were taken were central to her having ‘mental capacity’, even though on one view the decisions are “actually” being taken by her mother.

In stark contrast to cases like V v R, are cases where a person is found to lack capacity in part as a result of the coercive influence of others upon their decision making.  Perhaps the best known case of this variety is Re T (1992), where a pregnant woman who was Jehovah’s Witness refused a blood transfusion following a road traffic accident.  The court held that T’s refusal of treatment was not valid, in part because she had not been properly informed of the risks, but also because it was felt that her decision arose more from the undue influence of her mother than her own religious convictions.  The case precedes the MCA, and a better example in the light of the Act might be A Primary Care Trust v P (2009).  The case concerned whether P should move out of his mother’s care, as there were concerns about her overbearing influence and disputes arising out of his epilepsy medication.  The judge commented:

It is utterly clear that they have been deeply and, as I find, unhealthily enmeshed in one another, so much so that when speaking to either about themselves or about the other, it is quite impossible to discern whose voice is actually being heard.  [25]

The reasons that I am persuaded that he lacks that capacity are the cumulative force of the following: a) his epilepsy and its impact on his functioning, b) his learning disability which is at the lower end of mild, c) the enmeshed relationship that he has with AH which severely restricts his perspective in terms of being able to think about his future, d) his inability, frequently articulated by him to those who have interviewed him, to visualise any prospect of having a different view to his mother on any subject that matters and his inability to understand what the other aspects of the argument may be in relation to his expressed wishes simply to return and live undisturbed with his mother.  [37]

In both cases the relevant person’s decisions were strongly influenced by the views of their mother, but in one case this was regarded as enhancing their capacity and in the other it was seen as diminishing it.  It is hard to see how this distinction can be maintained without regard to a wider normative framework over whether the mother’s decisions are ultimately beneficial to the relevant person or not.  Both cases may be quite sensible, practical, outcomes but – to me at least – there is something distinctly unsatisfactory about them when considered side by side.  The wisdom of the outcome of the decision is not supposed to affect whether a person has capacity or not, and yet here the substantive distinction seems to be that the support in one case leads to wise decisions, and support in the other is not regarded as doing so by the court.

The legal issue finds a parallel in some philosophy I have been reading.  Whereas traditionally ‘autonomy’ – the ability to govern oneself and one’s actions – has been regarded as centred within an individual, some new approaches stress the relationality of autonomy.  The Stanford Encyclopedia entry on autonomy in political and moral philosophy has a useful summary and references on this approach.  Writings on relational autonomy tend to focus on issues of oppression, but I read an interesting paper by Francis and Silvers exploring how the autonomy of people with cognitive disabilities could be enhanced through relationships with people they called ‘trustees’ who could assist them with reflection and reasoning (the paper is published in this book, or in a special issue of the journal Metaphilosophy).  Francis and Silvers liken the role of a ‘trustee’ to that of a prosthetic limb for an athlete, and they emphasise that all of us are dependent on others and society more generally to help select and refine the information and values upon which we base our decisions.  I have no difficulty accepting the latter point, but I think I do – on reflection – reject the prosthetic parallel.  The problem is that whilst one’s prosthetic may of course enable a person to run, it is unlikely to be said, itself, to do the running.  It is never likely to be attributed with exercising control over a person in the same was that a ‘trustee’ who helps a person to make decisions could be.  It is a tool that is manipulated by the wearer; it does not have the potential to manipulate.

This seems to me to bring us back full circle to the legal problem; we cannot distinguish between a controlling or a supportive influence without reference to both the outcome of the decision made and an extrinsic normative framework about the value of that outcome.  I may be understanding an interesting essay by Jules Holroyd incorrectly, but I wonder if this is related to a point she makes regarding relational autonomy:

...any account [of autonomy that relies upon S standing in a certain social relation] cannot play one of autonomy’s key normative roles: identifying those agents who ought to be protected from (hard) paternalistic intervention. I argue, against objections from Oshana, that there are good reasons for maintaining the notion of autonomy in this role, and thus that such relational conceptions should not be accepted.

This short extract doesn't do justice to Holroyd’s careful article, but I hope my point is at least congruent with hers.  As is illustrated in the case of V v R, what we may want to call relational autonomy can clearly bring very beneficial consequences, but the danger (metaphysical, legal and real) lurks in how we separate off those cases from those of undue influence.

Capacity is experience based

The case law has developed a clear role for experience and learning in capacity.  In D Borough Council v AB Mostyn J found that ‘Alan’ lacked the capacity to consent to sexual relations, but the court directed that attempts should be made to remedy this situation by providing him with sex education, so that he might attain capacity.  For some issues, a lack of life experience might impair someone’s ability to make a decision because the only way to understand the information is through experience.  For example, in A PCT v P (2009) Hedley J says:

...until P has experienced something other than the care of his mother, then he has no opportunity to make true choices about what he wants for himself.  In the circumstances of this case, it is said this can only be achieved by prising him out of his current relationship, significantly curtailing contact and thereby allowing space for the development of a new experience.  Some believe, and leading amongst those is Dr Milnes, his treating psychiatrist, that this will lead to his regaining capacity and it is recognised that should he do so, that may result in a choice to return to AH.  [57]

Clearly it is rather a drastic step to remove someone, involuntarily, from the care of a parent to enhance their mental capacity, and to do so could not be justified by s1(3) MCA alone.  In this case it required the use of the deprivation of liberty provisions of the MCA.  The Law Commission acknowledged in their earliest paper on mental capacity that:

Maximising freedom or providing equality of opportunity goes beyond mere non-interference. It can, for example, imply a need actively to encourage people to take risks. Even if this has adverse short term consequences , there may be long term benefits which cannot be acquired in any other way. Nearly everyone can learn by experience, however slowly. If harm is taken to include under-achievement and lack of fulfillment, are mentally incapacitated people put at greater risk of harm by receiving too much care and protection, or too little?" [1.12]

So capacity can fluctuate not merely according to one’s physiological state, but also according to the opportunities and learning experiences available to a person.  And opportunities to learn and develop may entail taking risks, which need to be balanced against the overall benefits of increased personal autonomy and fulfilment.

Assessment of capacity

I’ll bring these comments to an end now, although this far from exhausts the matter.  I hope I’ve given some convincing reasons to doubt that mental capacity could be determined solely by reference to performance in some laboratory tests or a brain scan!  I just wanted to offer some passing thoughts on the assessment of capacity itself.  We have seen that the case law acknowledges that mental capacity may be contingent on a person’s relationships with those in their immediate circle, their life experience, and their current context, but I think it’s also important to note that it may depend on their relationship with the capacity assessor themselves.  The context of capacity assessment, and the relationship a person has with the person assessing their capacity, may impact on the outcome of the test.  The ability a capacity assessor has to communicate with the relevant person will affect the outcome directly – through MCA s3(1)(d), but also indirectly as they may be less able to communicate to the relevant person the information required for the decision.  This means, for instance, that the level of staff training in communication techniques like Makaton, or even staff turnover, may have a direct effect on the ‘mental capacity’ of people within a particular service.  If a person does not like or trust a particular member of staff or professional, they may not engage in full enough communication to evidence their capacity.  The quality of the relationship may be paramount; we should be concerned, therefore, about the effect of services that do not provide good continuity of care upon a person’s ability to exercise what autonomy they are potentially capable of.

Another issue around capacity assessment that troubles me, particularly where assessments are very formal and undertaken for the purposes of writing a report, is that the assessment process itself may be experienced as an invasion of someone’s privacy.  Even if a person is found to have capacity, the experience of being assessed, having to give reasons for one’s decision, demonstrate that one understands and can weigh certain pieces of information, could potentially be quite intrusive.  It certainly has the potential to place a person in a position of felt inferiority to the person doing the assessing.  I sometimes wonder whether professionals undertaking these kinds of assessment seek the consent of the relevant person first, and of course, whether that assessed person has the capacity to give that consent.  Directions from the court might dispense with the need for that consent, but I do sometimes wonder what happens about capacity assessments that precede court hearings where a person refuses to co-operate with the process.  I heard recently about a case where a person was thought by their solicitor to lack litigation capacity, so the solicitor wrote off to their GP who replied that in their view they lacked it.  I have no idea about the veracity of the claim, but it would trouble me if the relevant person had not consented to that information being disclosed.

It is a wider problem in Court of Protection cases, that I have commented on before in relation to the case D Borough Council v AB, that in striving to ensure people’s rights are upheld, there are dangers that the legal processes themselves may entail other harms which will need to be balanced.  I can see no obvious way around this; I support the principle that people should be protected against harmful decisions they lack the capacity to make, but the very act of assessment that this principle entails may be experienced as oppressive or demeaning by some.  We should approach capacity assessment, therefore, respectfully and with caution, and be careful not to forget s1(2) MCA: the starting point is the presumption that all people, regardless of appearances, have capacity.