2.1 On the assumption that KW had mental capacity

The doctors treating KW considered that she had the necessary mental capacity as defined under the MCA, and the coroner supported their conclusion. In the context of health care a refusal of treatment made with capacity must be respected.Footnote ⁴ On her arrival at hospital KW had brought with her a letter which she had written a few days previously. In the letter she explained that if she had taken an overdose she would not wish any life-saving treatment to be given, only pain relief and palliative care. When questioned about her treatment wishes she directed the doctors firmly to this letter. The letter was not in the correct form to constitute an advance decision under the MCA,Footnote ⁵ but it was seen as a statement of KW's wishes expressed with capacity and referred to with capacity at the time of her refusal.

In view of their finding of capacity the doctors had to respect KW's refusal of life-saving treatment. Their only alternative would have been to consider her for admission under the MHA. The MHA permits the provision of treatment for mental disorder without the consent of the patient and can be employed when an individual is suffering from a mental disorder of a nature or degree that warrants her detention in hospital for assessment or treatment in the interests of her own health or safety.Footnote ⁶ On several occasions KW had been diagnosed as suffering from a personality disorder and, given the evidence presented in the coroner's report, psychiatrists have voiced the opinion that there were ample grounds for a suspicion that she was suffering from a mental disorder in the lead-up to her death.Footnote ⁷ If MHA powers had been taken they might then have permitted life-saving intervention despite KW's wishes. The issue turns on the interpretation of treatment for mental disorder under the Act. The changes to the MHA 1983 that were introduced in 2007 have amended the statutory definition of treatment for mental disorderFootnote ⁸ and the relevant Code of Practice now explains that “[t]his includes treatment for physical health problems only to the extent that such treatment is part of, or ancillary to, treatment for mental disorder (eg treating wounds self-inflicted as a result of mental disorder)’.Footnote ⁹ Although it has yet to be decided by the courts, it seems likely that a treatment such as renal dialysis would also be included within the definition if the need for it was closely linked to the presence of a mental disorder.Footnote ¹⁰

2.2 If KW had lacked the necessary mental capacity

If the doctors treating KW had considered that she lacked mental capacity they would have been empowered to substitute their decision for hers and they would have been under a duty to overrule her refusal if they had felt that to do so would have been in her best interests. The MCA requires all decisions made on behalf of a person who lacks capacity to be made in that person's best interests.Footnote ¹¹ The Act never defines best interests, instead it stipulates the process required to determine them and provides a list of factors to be taken into account and views to be sought.Footnote ¹² It obliges the decision-maker ‘so far as is reasonably ascertainable’ to consider the person's past and present wishes and feelings and their beliefs and values,Footnote ¹³ and it imposes consultation requirements in order to ascertain what these are.Footnote ¹⁴ But both the past and present wishes have to be considered within the context of best interests.Footnote ¹⁵

3.1 Can mental capacity cope?

Taking first the burden placed on it, is mental capacity sufficiently robust to police what appears to be a binary divide? If the test of mental capacity is set too high it will exclude our truly autonomous choices from the law's respect, but if it is set too low it may accord respect to choices that do not reflect our true wishes. The MCA provides England and Wales with a statutory definition of mental capacity that centres on the process, not the substance, of decision-making. A person must not be treated as lacking capacity merely because she makes an unwise decision.Footnote ¹⁷ Under the Act, a person will lack capacity in relation to a particular decision if, as a consequence of ‘an impairment of, or a disturbance in the functioning of, the mind or brain’,Footnote ¹⁸ that person is unable to understand the information relevant to the decision, or to retain that information, or to use or weigh it, or to communicate their decision.Footnote ¹⁹ Much has been written analysing this definition and its US counterpart reflected in the MacCAT-T.Footnote ²⁰ To a large extent the law's notion of mental capacity in both the UK and the US has been developed in the context of physical or cognitive disorders, and thus, it has been suggested, it is inadequate in the context of psychiatric disorders. In particular, it is argued, these prevailing definitions fail to provide an adequate treatment of insight, they lack an understanding of delusions, and they give insufficient weight to the role of values and emotion.Footnote ²¹ If these criticisms were valid they would certainly suggest that mental capacity as defined by the law is ill-equipped to reflect the forms of disordered decision-making often present in psychiatric disorders which may be associated with severe self-harm. However, in relation to lack of insight, the criticisms are not endorsed by the research. Empirical data on the relationship between insight and capacity suggest that the two notions capture the same population of patients, particularly in the context of psychotic disorders and bipolar affective disorder.Footnote ²² Further, existing case-law indicates that courts will take a flexible approach to the legal definition to enable them to reach their preferred outcome. Lack of insight, the presence of delusions, and a distortion in values have all been regarded as included within the flexible requirements of understanding, using and weighing.Footnote ²³

This suggests that, whatever the theoretical shortcomings of the legal definition, the courts will adopt an interpretation that enables them to override decisions which they (and clinicians) regard as severely compromised by the effects of mental disorder. In individual cases this pragmatic approach may lead to acceptable outcomes,Footnote ²⁴ but its very flexibility must raise questions over the ability of the distinction between mental capacity and incapacity to provide a firm basis for the application of rights, in particular the right to self-determination. In the KW case, the clinical team respected KW's decision to refuse life-saving treatment because they were satisfied that she had the necessary mental capacity, and the coroner supported their judgment. But it is not hard to imagine a court confronted with the question of capacity prior to KW's death reaching the opposite conclusion.Footnote ²⁵ The legal definition contains sufficient flexibility to permit either conclusion.

The traditional non-interference approach adopted by the law to autonomous decision-making introduces the need for a mental capacity test to separate the autonomous from the non-autonomous decision. Some of the problems that might be encountered in practice by too rigorous an adherence to such a binary approach are then avoided by considerable flexibility in the interpretation of mental capacity. In neither principle nor practice is this entirely satisfactory, which leads to the second question: Would a different approach provide a better basis for the protection of our interests?

3.2 Are there other approaches?

There are broadly two possible ways forward. The first would simply adjust our understanding of autonomy and its legal expression, mental capacity; the second could be much more radical.

Some would argue that a less individualist approach to autonomy would enable the law better to reflect the way we reach decisions in practice.Footnote ²⁶ A more relational approach would recognise that most of us do not make important decisions in isolation. We are all dependent on others, we tend to make choices jointly with others, and we sometimes delegate decisions to those we trust. In its Report on dementia, the Nuffield Council on Bioethics states:

On such a view the law might improve its understanding of mental capacity if it revised its definition to include some reflection of the social and emotional context in which decisions are made. In relation to psychiatric disorders, the law's shift towards so-called legalism in the mid twentieth century was rooted in its traditional non-interference approach. People with psychiatric disorders were to be protected from the forced attentions of the state in the form of hospital detention and compulsory treatment.Footnote ²⁸ If someone in KW's position retained capacity and wished to die, it would not be for the state to stop her. Springing as it did from a desire to avoid all interference, this tradition favoured an individualist notion of mental capacity, one that considered the person's decision-making ability effectively isolated from those around her. But there is now an acceptance of the need to view mental capacity more broadly, and growing support for a more relational approach.Footnote ²⁹

A more radical option is offered by the CRPD.Footnote ³⁰ Under the MCA, if a person lacks mental capacity, as defined in Sections 2 and 3, a decision may be made on her behalf provided it is in her best interests (see below). So, once someone lacks mental capacity, a substitute decision-making model is adopted and decisions will be made for her. They will no longer be made by her. Under the CRPD, the approach is very different. The emphasis has moved from substitute to supported decision-making. Decisions are no longer to be made, however benignly, on behalf of the person with disability; instead she is to be supported and encouraged to make her own decisions. In its purest form there is no point beyond which legal capacity is lost. There is no binary divide.

Article 12 of the Convention provides:

1. (1) ‘States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.’

2. (2) ‘States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.’

These two paragraphs can be read as requiring the law to give the same status and respect to decisions made by people with mental disabilities, however great the impact of those disabilities on their decision-making, as it gives to the decisions made by others. Legal capacity should not be dependent on mental capacity.Footnote ³¹

Thus provisions like those contained within the MHA would be non-compliant insofar as they fail to give the same respect to decisions made by people with mental disorder as is given to the decisions made by others.Footnote ³² The position of the MCA is more difficult to determine. On a literal reading the MCA might be equally non-compliant because it differentiates between decisions made with mental capacity and those made without, and imposes substitute decision-making only in relation to the latter. But Article 12(2) does not stand alone. Article 12(3) imposes an obligation to provide access to supported decision-making:

The nature of the appropriate measures required is never described, but the nature of the safeguards listed in Article 12(4) suggests that these measures might be quite extensive, possibly extending to substitute decision-making in extreme cases.Footnote ³³ Thus we have a contrast in emphasis, at the very least, between two legal models. In the MCA substitute decision-making model, if the level of mental capacity falls below that required by law, the person will lose legal capacity and the decision will be made on her behalf in her best interests. Under the CRPD in its purest form there is no such divide, the person will be supported in making the decision herself whatever her level of mental capacity. In practice, however, much will turn on the interpretation of Article 12(4).

There is a lot to be said in favour of supported decision-making, and in relation to dementia and intellectual disabilities it might have particular purchase. Its encouragement of participative decision-making accords well with aspects of the MCA,Footnote ³⁴ with the expectations of the Care Quality Commission in relation to the implementation of the MHA,Footnote ³⁵ and with NICE guidelines.Footnote ³⁶ However, in the case of psychiatric disorders more generally, and severe self-harm in particular, different considerations emerge. A pure supported decision-making model would remove the link between legal and mental capacity. An individual would be encouraged and supported to make her own decisions and, in theory at least, the law would have to respect those decisions, however disabled the person's mental powers might be, and however damaging the consequences of the decisions. In the context of psychiatric disorders, where the overwhelming emphasis has been on risk reduction,Footnote ³⁷ it is unrealistic to imagine that any government in England and Wales would adopt a model that removed the link between mental and legal capacity. Such a move would have enormous implications across not just civil or private law, but across the criminal law as well. Nevertheless, in view of the difficulties presented by the current legal position, it is interesting to consider how supported decision-making might be applied in the context of both KW and the more recent case of A Local Authority, E v. A Health Authority.Footnote ³⁸

Under existing law, if a person in KW's position is regarded as lacking mental capacity a decision will be made on her behalf. Under a supported decision-making model, on the other hand, an attempt would be made to support her and to encourage her to consider her decision in the context of her family and social relationships. But it is not hard to imagine that a person in KW's situation might be deeply hostile to any such attempt. She may value her own isolation, reject all support, and have no desire to live. In such a situation how far should we go in our attempt to persuade her to adjust her values? At what point would support merge into coercion? And if she consistently refused to change her mind would her supporters accept her decision to die, even if they disagreed with it, or would they rediscover a binary divide and regard her as lacking legal capacity and treat her despite her refusal? The strict logic of the CRPD would deny the latter outcome. If persons without disabilities are permitted to refuse life-saving treatment, then persons with disabilities, including mental disabilities, must be equally permitted to do so.Footnote ³⁹ So, if a person in KW's position persisted in her desire to die despite every attempt to support her and to persuade her otherwise, that decision would have to be respected however compromised her mental capacity might be and however strongly her supporters disagreed. While it is unlikely that the Convention would be interpreted in such an absolute way,Footnote ⁴⁰ any denial of the above conclusion would require the recognition of the possibility of decisions which are so compromised that they can, or even must, be overruled.Footnote ⁴¹ The binary divide would reappear but possibly in a different place and with even more flexibility.

The case of E raises different but no less troubling issues. E is a thirty-two-year-old woman who suffers from severe anorexia and other adverse health conditions. At the time of the hearing, E was refusing food and taking only small amounts of water. She had frequently expressed a wish to be allowed to die and had written two advance decisions to that effect. When her death was imminent, an application was made to the court of protection. The court had to determine whether E had mental capacity both at the time of the hearing and at the time she signed the advance decisions. If it found that she lacked that capacity, it had then to determine whether further treatment would be in her best interests. In deciding the question of capacity, the court was satisfied that E had an excellent understanding of the relevant information and considered that the issue turned on whether she could use and weigh that information. With regard to E's capacity at the time of the hearing, the judge was satisfied that E lacked capacity:

In addition, he concluded that she was in a ‘drug haze’ due to the sedative medication she was receiving.

At the time of signing the two advance decisions the question was much more difficult, particularly regarding the second, which was the more formal and was signed when E had recovered some weight. On the balance of probabilities the judge concluded that E did not have capacity when she signed either of the two advance decisions. This conclusion is not easy to follow but must presumably stem from the judge's background belief that someone with severe anorexia lacks capacity to make decisions relating to food:

On this basis the current definition of mental capacity appears to remove the right to refuse treatment from those suffering from severe anorexia solely on the basis of their status as a person with anorexia. This is a conclusion that E's parents found hard to accept:

This case raises a number of questions. Was the current test of mental capacity correctly applied? And is it the right test in any event? As discussed above, the ability to ‘use or weigh’ information is notoriously flexible and the MCA Code of Practice has indicated that the compulsion not to eat may render a person with severe anorexia unable to use or weigh the relevant information.Footnote ⁴⁵ This suggests that the test was correctly applied in E. Whether it is the right test, however, returns to the issues discussed above. A third and more fundamental question raised by the case is whether we need any test of mental capacity at all, or whether we should replace it with the principles of universal capacity and supported decision-making. If these principles had been applied, E's desire to die might have been respected. E's life is dominated by her illness and she has expressed a consistent desire to die. Just over a month before the hearing, in the full knowledge of the implications and with the reluctant support of her family and her clinical team, E had agreed a palliative care plan that would lead ultimately to her death.Footnote ⁴⁶

Both of these cases present agonising dilemmas for the person directly involved, for their family, supporters and carers, and for the law. If a substitute decision-making model is used and mental capacity is adopted as the crucial test then there is the danger that anyone expressing a wish to die that can be attributed to their mental state will face the same Catch 22 as confronted E. This Catch 22 is starkly illustrated in cases of severe eating disorder but could equally be present in cases of personality disorder or chronic depression if the person's desire to die is seen as springing from their disorder. There is an obvious element of discrimination here which is eloquently reflected by E's parents, quoted above. A person may be regarded as having mental capacity when she refuses treatment for terminal medical illness. But if her psychiatric illness leads her to take steps to end her life she will not be regarded as capable of refusing treatment to reverse those steps. Her refusal will be seen as reflecting her psychiatric illness rather than her true self even if her underlying psychiatric illness is long-term and has proved treatment-resistant in the past. A supported decision-making model based on the principle of universal capacity would be designed to remove this discrimination, a simple finding of lack of mental capacity would no longer be sufficient to negate the legal effect of a treatment refusal. But the model would introduce other potential difficulties.

An attempt to create a legislative structure which would comply with the requirements of a supported decision-making model as reflected in the CRPD has been provided by Bach and Kerzner, working within the Canadian legal system.Footnote ⁴⁷ They aim to reject any test of mental capacity that depends on the ability to reason or appreciate, and propose what they claim to be a disability neutral mental state to which to attribute legal capacity. But even they recognise that in extreme cases it may be necessary to revert to a form of substitute decision-making. They propose a three-tiered model: legally independent status, where no support is required; supported decision-making status, where support is required; and facilitated decision-making status, where a form of substitute decision-making would be employed.Footnote ⁴⁸ The distinction they propose between supported and facilitated decision-making is set much lower than the distinction between mental capacity and incapacity in current law. Provided a person can act in such a way as to enable at least one other individual to ascribe to her a personal will or intention that is consistent with her identity and makes sense in her ‘life story’,Footnote ⁴⁹ supported, rather than facilitated, decision-making will be employed.

The political implications of such a shift have already been alluded to, as have the difficulties raised by persistent treatment refusals by people with seriously impaired understanding or reasoning, but a further problem emerges in practice at the border between independent and supported decision-making status. Here, a notion similar to mental capacity seems to reappear, which may simply reintroduce the very distinction the model is designed to avoid. Whatever the details of Bach and Kerzner's scheme, it would seem necessary under any supported decision-making framework to distinguish between those who require support and those who do not, unless support is to be universal. In a case like E, where the person is content to receive support and her supporters are, however reluctantly, prepared to agree with her decision, the distinction may have little relevance. But in a case like KW, where support might not be welcome or a real conflict might arise between the person and her supporters, the distinction would become crucial. If KW fell into the first tier she could make her own decision untroubled by support, while if she were in the second tier she would have to be supported and the possibility of disagreement would arise.

Supported decision-making may ameliorate some of the difficulties that flow from the current binary divide between the presence and absence of mental capacity, but its application to cases of extreme self-harm suggests that it cannot remove all distinctions. Some new boundaries will be necessary in order both to determine when support is to be offered and/or imposed and to provide for cases where decision-making powers are severely impaired and, despite all support, a decision with drastic consequences is maintained.

4.1 The development of the test

When a legal system adopts a model of substitute decision-making it defines a point at which a person's legal capacity is reduced and decisions must be made on her behalf. It must then establish standards or principles to regulate the basis on which those substitute decisions are to be made. A variety of models are available, including an objective assessment of what would be in the person's interests, which in the medical context can be judged either broadly or from a narrow clinical perspective; an attempt to determine what the individual would have decided if she had retained full decision-making capacity, and a decision reflecting her currently expressed wishes.Footnote ⁵⁰ In England and Wales the test adopted is that of best interests, which contains elements of all three. This test was developed initially by the common law and is now established in the MCA.

In 1990, the House of Lords held that treatment and care which would otherwise amount to an assault was lawful under the common-law principle of necessity in the case of an adult who lacked the necessary capacity to consent, provided it was in that person's best interests.Footnote ⁵¹ It was against this background that the Law Commission embarked on a review of the law relating to ‘mentally incapacitated adults’, which led eventually to the introduction of the MCA.Footnote ⁵² The Law Commission had to consider the best interest test and how it should be understood. Early on in its discussions the Law Commission considered the relative merits of the best interests test ‘where the decision-maker does what she thinks best’ and the ‘so-called “substituted judgment” test where the decision-maker does what she thinks the person concerned would have done’.Footnote ⁵³ It chose best interests because it considered that substituted judgment is difficult to apply in practice and can involve the use of an unconvincing legal fiction, especially where the person has never had the relevant mental capacity.Footnote ⁵⁴ However, the Law Commission did not see the two tests as mutually exclusive: ‘the best interests test should be modified by a requirement that the substitute decision-maker first goes through an exercise in substituted judgment.’Footnote ⁵⁵ Thus the decision-maker could only arrive at the more objective best interest test of ‘what she thinks best’ once she has considered what the person herself would have decided.

The MCA, as it eventually emerged, does not define best interests but specifies the process for its determination, including the requirement to consider the person's past and current wishes and feelings, the beliefs and values that would influence her decision if she had capacity, and the other factors that she would consider.Footnote ⁵⁶ In addition, if it is practicable and appropriate, the decision-maker must take into account the views of a number of involved people as to what would be in the person's best interests and what their wishes and feelings etc. might be.Footnote ⁵⁷ There are clear elements of substituted judgment and respect for present wishes here even if the final outcome has to reflect the court's overall assessment of best interests.Footnote ⁵⁸ It does not amount to a full substituted judgment test, nor does it demand that the decision give priority to the currently expressed wishes of the person, but the significance placed on the wishes of the person, whether past or present, by the MCA can be contrasted with the absence of those wishes from the common-law balance sheet approach as originally adopted by Thorpe LJ in Re A. Footnote ⁵⁹ The MCA does not, however, indicate the weight to be given to the wishes of the person without capacity, nor how they are to be assessed against the court's more general assessment of best interests.

There is one exception to the application of the best interest test. The MCA provides for a person's advance refusal of treatment to be respected provided it was made when she had mental capacity. Sections 24 to 26 govern the validity and applicability of advance decisions to refuse treatment and thus enable a person's earlier capable self to govern later decisions, whatever the court's view of best interests might be. A strict non-interference approach to autonomy is applied to previously expressed wishes, affording protection to the person's precedent autonomy. But, for the purposes of this article, the crucial issue concerns the weight to be attached to a consistent wish to die expressed by someone deemed to lack mental capacity.

4.2 Best interests and an expressed wish to die

The case of W v. M Footnote ⁶⁰ involved an application to withdraw artificial nutrition and hydration from a woman who was in a minimally conscious state following an episode of viral encephalitis. From the judgment in that case it is evident that when the person without mental capacity is in no position to indicate any current wishes, feelings, beliefs or values the courts will adopt an objective approach to best interests and will be very reluctant to override the principle of the preservation of life.Footnote ⁶¹ This is in line with the post-MCA case-law on best interests generally, which emphasises the objective element. The courts have consistently maintained that although the person's past and current wishes and feelings are important factors to be taken into account when assessing best interests, they cannot be determinative, they must always be accommodated within the court's assessment of best interests.Footnote ⁶² The person's wishes and feelings are relevant but only in the context of objective best interests.

W v. M involved the withdrawal of life-sustaining treatment from a person who was unable to indicate her wishes. KW in contrast was directly refusing the introduction of a life-saving intervention. Although those treating KW considered that she had mental capacity, as suggested above, a court might have found otherwise had it considered the issue prior to her death. In that situation, the question of best interests would have arisen. KW expressed the wish to refuse life-saving treatment and to be allowed to die. According to Section 4(6), such wishes and feelings must be considered by the decision-maker and the person must be permitted and encouraged to participate as far as possible in any decision.Footnote ⁶³ But in the case of life-sustaining treatment, the MCA introduces an extra requirement in relation to best interests: the person making the decision ‘must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death’.Footnote ⁶⁴ In a case where the person's wish to be allowed to die is clear, it might be possible to claim that a decision to withdraw or to withhold treatment would be motivated not by the desire to bring about death but by the desire to reflect the person's wishes.Footnote ⁶⁵ This nevertheless leaves open the question of the weight to be placed on these wishes and whether, outside the context of persistent vegetative stateFootnote ⁶⁶ or ‘where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery’,Footnote ⁶⁷ it is ever in the best interests of the person to be allowed to die.

We know from Munby J in In Re M Footnote ⁶⁸ that the test of best interests is case-specific and the weight to be given to individual factors including present wishes and feelings will be dependent on the circumstances of each case. In the light of this, could it ever be in the best interests of a twenty-seven-year-old woman, as understood by the MCA, to be allowed to die when not in terminal illness or excruciating pain? In the rather different context of In Re M, Munby J lists a number of relevant circumstances to which the court might have regard when considering how much weight to attach to the person's (P's) wishes and feelings.Footnote ⁶⁹ These include the degree of P's incapacity, the strength and consistency of the views being expressed by P, and the possible impact on P of the knowledge that her wishes and feelings are not being given effect to. These taken on their own might suggest the possibility that in a case like KW, where the person retained a high degree of residual decision-making capacity, had a fixed desire to die and would deeply resent any life-saving intervention, their expressed wishes might be allowed to prevail. However, Munby J also lists as relevant circumstances the extent to which the person's wishes ‘are or are not, rational, sensible, [or] responsible’, and the extent to which they can be accommodated within ‘the court's overall assessment of what is in her best interests’. These latter circumstances suggest very strongly that objective best interest would prevail over even the most firmly expressed wish to die. The person may be encouraged to participate but, however clear the message conveyed by that participation, it will be assessed within the best interests framework and can be overruled if it does not accord with objective best interests.

There have been only a few post-MCA cases on best interests and the refusal of medical treatment, but Mary Donnelly has commented that ‘the lure of “objective” assessment of best interests seems to remain strong’.Footnote ⁷⁰ The case of A Local Authority, E v. A Health Authority,Footnote ⁷¹ discussed above, provides a particularly troubling example. At the time of the hearing E was being cared for under a palliative care regime whose purpose was to allow her to die in comfort. This regime had been agreed upon after E, all the professionals looking after her, and her parents had reached the unanimous view that all treatment options had been exhausted. Having concluded that E lacked mental capacity the court had to decide whether it would be in her best interests to continue with the palliative care plan or to embark on a further course of treatment involving forcible feeding. In reaching his decision the judge considered all of the factors required by the MCA, including E's past and present wishes and feelings, her beliefs and values, the views of E's parents and the opinions of six doctors. In considering the beliefs and values which might have influenced her had she retained capacity, he specifically recognised the difficult question of identity:

Her present wishes and feelings were easier to assess because she had spoken at length to the Official Solicitor's representative just days before the hearing and she had made it plain that she wanted to live the remainder of her life as she chose, and if necessary to be allowed to die with dignity. That this was her consistent and considered view was endorsed by her parent's evidence:

All the medical opinion was clear that E was desperately ill. She had been treatment-resistant for some years and any further treatment would be long-term and invasive, would have to be forcibly administered, and had only a limited chance of success, described by the specialist consultant as quite poor, in the order of 10 to 20 per cent.Footnote ⁷⁴

In an attempt to weigh these factors, the judge listed those in favour of each of the two options, continued palliative care or forcible treatment, and concluded that in the end ‘the balance to be struck places the value of E's life in one scale and the value of her personal independence in the other’.Footnote ⁷⁵ He recognised that as an intelligent and articulate woman E's views deserved considerable respectFootnote ⁷⁶ and he acknowledged that ‘a return to compulsion will be excruciating’ for her family and carers. He further conceded the potential for discrimination that resides in the respect accorded to a desire to die expressed by someone with capacity, on the one hand, and the imposition of best interests when mental capacity is found lacking, on the other. He also recognised that renewed treatment may simply enable E to regain sufficient capacity to make a valid advance decision to refuse treatment. In the end, however, despite the risks and the uncertain outcome of further treatment, he concluded ‘that the balance tips slowly but unmistakably in the direction of life preserving treatment. In the end the presumption in favour of the preservation of life is not displaced.’Footnote ⁷⁷

4.3 The court's ‘balancing’ act

The case of E starkly illustrates the dilemmas faced by courts in interpreting best interests in the context of life-threatening treatment refusals. In particular, it presents the complex interplay between a person's right to self-determination as reflected in the law's non-interference, liberty-based approach described above, her right to life enshrined in Article 2 of the European Convention on Human Rights (ECHR) and, broadly, the respect to be afforded to her individual dignity. Although the courts in England and Wales show little enthusiasm for analysing cases in terms of the respect of individual dignity,Footnote ⁷⁸ that principle is included in a number of relevant international instruments including the CRPD.Footnote ⁷⁹ The true basis for any right to dignity is subject to considerable debate, but for present purposes it can be understood as containing both a subjective – a sense of self worth – and an objective element – a concern ‘with the state's and other people's attitudes to an individual or group’.Footnote ⁸⁰ It therefore applies equally to those with and those without mental capacity and, in the present context, the requirements of Articles 3 and 8 ECHR, prohibiting torture and inhuman or degrading treatment and guaranteeing the right to private and family life, can be taken as containing its essential elements.

The complex interplay between these various rights can be analysed in the current legal context of best interests and, more speculatively, in the context of supported decision-making, using E and the earlier, rather different, case of An NHS Foundation Trust v. D Footnote ⁸¹ as examples.