‘Turning up the volume’: Increasing respect for the wishes and feelings of women with intellectual impairment in decisions about their reproductive rights in England and New Zealand

Introduction

In 2004 a New Zealand (NZ) Family Court Judge made an order that two ‘extremely serious’, ‘profound, and irreversible interventions’ ¹ (termination of her pregnancy or TOP, and sterilization) be carried out on a 29-year-old woman (KR) over her strenuous objection and unambiguous hostility. KR suffered from what was variously described as a ‘mild’ to ‘moderate’ mental impairment because of a genetic condition. Jurisdiction over KR to authorize the procedures existed under NZ’s adult guardianship legislation, the Protection of Personal and Property Rights Act 1998 (PPPRA). The decision was made ostensibly on the basis of her best interests and despite the two primary objectives of the legislation, which would seem to oppose the orders. These objectives are to make the least restrictive intervention possible in her life, and to encourage her to exercise her capacity to the greatest extent possible. ² KR herself successfully appealed the orders and ultimately managed to stave off both procedures. ³

This article argues that the wishes, feelings, values and beliefs of an adult with mental impairment such as KR should be placed at the heart of medical decisions about her best interests. The lack of any requirement for NZ decision-makers to take into account and attach importance to these has permitted paternalistic interventions to be made in women’s lives which breach their rights and do not treat them with appropriate dignity and respect. In order to ensure that decision-makers do so, the PPPRA needs to be amended to permit the subject person ⁴ to be supported to make their own decisions where possible, and to place central importance on their wishes and feelings where a substitute decision is necessary, even though it may not always be possible for her wishes to determine the course adopted.

A leading NZ mental capacity lawyer has recommended that the Mental Capacity Act 2005 applicable in England and Wales (MCA) serves as a good starting point for the NZ Law Commission’s review of the PPPRA, which started in 2021. ⁵ There has been little recent academic literature on the NZ position and how it compares with the law that has developed in England, where there has been a greater judicial exposure to the issues, given the creation of a Court of Protection (COP), the provisions of the MCA which came into force in 2007 and the number of cases decided by the COP in the last 14 years on these issues.

An even bigger challenge to the PPPRA lies in the provisions of the UN Convention on the Rights of Persons with Disabilities (CRPD). It takes a rights approach, asserting an inherent human right to legal capacity, regardless of the person’s mental impairments, and requires supported decision-making whenever possible, based on respect for P’s will and preferences. Where a substitute decision is unavoidable, a consensus has emerged that the pressing need to make the MCA (and therefore also the PPPRA) compliant with the Convention points strongly to presumptive weight being given to her wishes and feelings except in exceptional circumstances.

First, I discuss the approach to autonomy favoured in this paper and the problem of the mental capacity ‘cliff edge’ resulting from the binary nature of the capacity/incapacity distinction. In Part II I outline the key principles of the PPPRA and judicial interpretations of them, and how the jurisdiction operates. In Part III I explore the judgements in KR v MR and a 2014 Family Court decision, Darzi v Darzi, and my objections to them. In Part IV I describe the more empathetic judicial approach that has developed in England and Wales under the MCA. Part V examines the application of this approach in English court judgements relating specifically to non-consensual abortion and contraceptive sterilization. The focus in Part VI is the head-on challenge the CRPD presents to the PPPRA and the lack of sufficient protection in cases like KR v MR and Darzi to ensure respect for the will and preferences of women with mental impairments relating to their reproductive rights. I conclude that NZ needs reforms to its now out-dated adult guardianship regime to better reflect modern ideas about the rights and needs of people with mental impairments, embodied particularly in the CRPD as well as the MCA.

Relational autonomy and the mental capacity cliff edge

Criticism of the construct of ‘mental capacity to make decisions’ has centred around the dissonance between law and the practical reality of peoples’ lives. While the ideal of the rational, autonomous liberal agent was always of doubtful accuracy as a generalization of people’s decision-making processes, it would seem especially so in respect of people with mental impairments. Accounts of relational autonomy, premised on important relationships and interdependence as inherent in the human condition, are likely to more closely reflect the actual lived experience of people with mental impairments. ⁶ Their lives and interests will be even more closely intertwined with those of their carers and loved ones. The capacity/incapacity distinction must pay attention to and reflect the relational context within which decisions are made by, with and for people with mental impairments.

Clough locates the roots of mental capacity law and commentary in a rigid ‘interwoven patchwork of binaries’, which determine ‘who is the subject of law, who gets lost, who or what gets represented or left out of these boundaries, who becomes the “other”’. ⁷ These problematic binaries are: capacity/incapacity, disability/ability, autonomy/paternalism, and empowerment/protection. But, in practice, decision-making capacity is not binary, but exists on a spectrum, from a person in a vegetative state whose current and prior preferences are not known, for example, to a fully ‘autonomous’ individual. But the law’s test for capacity draws a bright line between those who pass the test and are legally constructed as autonomous (and so are free to make their decision without state interference) and those who do not. ⁸ A competent person’s own assessment of their best interests is determinative in respect of refusal of treatment, irrespective of its ‘rationality’. ⁹ But for those found to lack capacity, the law’s test operates as ‘a capacity cliff-edge’, ¹⁰ in the sense that s/he loses all right to make decisions. Absent a binding advance directive, they will be made for him or her on a best interests basis, although the person’s wishes and preferences are a relevant factor. Commentators argue for a ‘softening’ of this binary approach for those who fail the statutory mental capacity test, in order to treat them with appropriate respect and dignity and to recognize that people with capacity impairments nevertheless retain autonomy interests. ¹¹ They may have or have had values that matter deeply to them, a life narrative, and a sense of personhood.

New Zealand’s PPPRA

KR v MR was decided by application of the PPPRA. The purpose of the Act is to provide for the protection and promotion of the personal and property rights of persons who lack capacity to manage their own affairs. The Act established a substitute decision-making regime, granting to the Family Court the power to make a broad range of orders in respect of a person lacking ‘competence’ to make decisions for their personal care and welfare and the administration of their property. It also gave the Court power to appoint a ‘welfare guardian’ or ‘property manager’ for such a person to make decisions on their behalf. Third, it enabled a person to make an Enduring Power of Attorney appointing an ‘attorney’ to make decisions on their behalf relating either to personal or property matters.

The Act contains a presumption of competence, which must be displaced for jurisdiction over the person to exist and before any orders can be made. ¹² In relation to personal care and welfare, the starting point is whether the person lacks ‘wholly or partly’ the capacity to understand the nature and foresee the consequences of decisions relating to the relevant issues, or wholly lacks the ability to communicate such decisions. ¹³ In exercising its jurisdiction, the Court must strive to achieve or balance two primary objectives: ‘to make the least restrictive intervention possible in the person’s life, having regard to the degree of their incapacity’ (‘the least restrictive intervention’ objective); ¹⁴ and second, ‘to enable and encourage the person to exercise and develop their capacity to the greatest extent possible’ (the ‘capacity-maximizing’ objective). ¹⁵ The two primary objectives embody the often- competing principles of protection from harm and respect for autonomy, which the Act seeks to balance. ¹⁶ The capacity-maximising objective implies a commitment to ensuring the person’s participation as far as possible in decision-making, as well as taking account of their wishes, feelings and values in substantive decisions affecting them.

Reflecting its greater restriction on autonomy, the Court must be satisfied, when appointing a welfare guardian, that the person ‘wholly’ lacks capacity, and that the appointment is ‘the only satisfactory way’ to ensure that appropriate decisions are made. By contrast, when making ‘one-off’ personal orders, the threshold is lower viz. only that the person ‘partly’ lacks capacity. ¹⁷ Rather strikingly, given the prevailing norms of the times, Parliament did not subject the Court’s jurisdiction to ‘the welfare and best interests of the person as the first and paramount consideration’, ¹⁸ nor even include it as one of the Act’s primary objectives. The welfare principle is, however, the first and paramount consideration for the acts and decisions of welfare guardians, property managers and attorneys under the Act. ¹⁹ It has been suggested that the omission may have been deliberate, because the Act was intended to have a ‘rights’ rather than a ‘welfare’ focus. ²⁰ Nevertheless, courts have felt more comfortable with the familiar principle, and with some stretching, have treated it as an implicit principle with which the Court is concerned in every case. ²¹ And so, Miller J stated in KR’s case that ‘the welfare of the subject person lies at the heart of the jurisdiction’, but that the best interests principle qualified by the Act’s two primary objectives was ‘a surer guide to the exercise of the decision- maker’s discretion than is a general appeal to the welfare principle’. ²²

The New Zealand cases

There are very few modern NZ cases under the PPPRA Act relating to invasive procedures limiting reproductive capacity. This is in itself troubling, since it raises questions about whether such procedures are performed without resort to the court by private agreement between welfare guardians and doctors, contrary to indications in KR v MR and Re H that court approval is required. ²³ My focus in this part is on two decisions, KR v MR and Darzi v Darzi.

KR was ‘mildly’ to ‘moderately’ mentally impaired, as a result of a congenital disorder (Partial Trisomy 8). ²⁴ She lived in a boarding hostel with some 40 others, including the father of the child, whose identity she refused to disclose. At the date of the hearing, she was approximately 13 weeks pregnant. She described her pregnancy as a ‘dream come true’ and strenuously objected to both medical procedures, and to adoption. She had chosen to become pregnant, discontinuing the contraceptive injection (which also gave her unpleasant side effects) and stopping consumption of tobacco, cannabis, and alcohol, because of the risk to the baby. She was capable of looking after her own baby, ‘thank you very much’. She did not know the chances of the baby being born with Partial Trisomy 8, but in any event would not agree to the invasive test to find out, because she had chosen to have this baby, whether or not it had the disability. She liked children and wanted to have more children with the father of the child, even if this one was taken from her.

Application for the orders was made by KR’s father, Mr R, with her mother’s support. (The Court had appointed Mr R her welfare guardian the year before). KR’s parents considered it best for her if the pregnancy was terminated and she was prevented from ever becoming pregnant again. They believed that she had no concept of what raising a child would actually involve; she could not take care of herself, let alone a baby. They were not able to care for a child at their stage of life, least of all another with mental impairment. A geneticist’s report indicated that the risk of the child inheriting KR’s genetic disorder was 50%. The evidence included two reports from a psychiatrist, who interviewed KR three times (twice for the earlier proceedings), and with whom KR refused co-operate, no doubt being suspicious of his role and motives. He essentially agreed with the parents’ view; KR was unable to make rational decisions about anything more complex than basic survival. Her GP considered that, while KR could cope physically and emotionally with pregnancy and childbirth, she would require almost constant supervision as a mother.

The Judge concluded that KR was not competent to make a decision regarding either the pregnancy and childbirth, or the sterilization. Hence, there was jurisdiction over her. Relying principally on the psychiatrist’s evidence, an abortion was both in her best interests and the least restrictive intervention. While it would cause her ‘major distress’, the psychological harm to her would be much greater if she carried the baby to term and it was then forcibly taken from her, accepting, as the Judge did, that she would be unable to care for it herself. ²⁵ His decision would be the same whether or not the child suffered from Partial Trisomy 8, but KR’s inability to care for the child would be exacerbated should it inherit the condition. ²⁶ Sterilization was also in her best interests and the least restrictive intervention, given that KR wanted more babies. It would be different if she understood ‘the need not to become pregnant’, ²⁷ but she did not. She was unwilling to co-operate with contraceptive injections. She could dislodge an IUD, and the oral contraceptive pill would be unreliable in her case. Subjecting her to ongoing litigation in the future should she become pregnant again was very undesirable. ‘Bearing in mind KR’s ability to pass on the congenital disorder to the child’, said the Judge, ‘sterilisation was the only appropriate and pragmatic option’. ²⁸

Through her court-appointed lawyer, KR appealed. In the High Court Miller J rejected her argument that, given that KR’s best interests only are relevant, the Judge had improperly taken into account her ability to pass on the congenital disorder to the child. He had quite properly treated this as relevant only to the question of KR’s ability to care for the child after birth, should it be so afflicted. ²⁹ KR’s appeal was, however, upheld on two of three argued grounds. First, he accepted that her counsel had been disadvantaged by insufficient time to prepare for the hearing, in particular to see KR herself, to seek alternative psychiatric evidence, and to obtain evidence of the support that would be available to her, if she was to give birth. ³⁰ Second, in respect of the termination, Miller J accepted that the Judge had erred in weighing only the harm caused by termination against that occasioned by removal of the child after birth and had neglected to consider a third alternative, of KR being supported to care for the child herself. He granted leave to admit further evidence about the extent of the support that would be available. This indicated that intensive 24 hour support would be available for some 6 weeks after the baby’s birth but would thereafter decrease over time due to insufficient resources. The psychiatrist gave a further opinion that it was unrealistic to expect KR to become an independent mother after a period of short-term support. Miller J nevertheless allowed her appeal on the ground that he was not prepared to accept that the Judge’s conclusion would have been the same, had he received this new evidence. ³¹

Finally, in respect of the sterilization, Miller J rejected KR’s argument that sterilization was precluded, because sterilization could never be ordered for purely contraceptive purposes under the PPPRA. ³² This argument was based on Re Eve, in which the Supreme Court of Canada held that a court lacked jurisdiction to consent to a contraceptive sterilization of a woman with mental impairment under the inherent parens patriae jurisdiction. It concluded that because of the grave intrusion on her right to reproduce and the physical injury inflicted on her, compared to its possible highly questionable advantages, it could never safely be determined that such a procedure is for her benefit. ³³ Miller J rejected such a rule, because it entailed determining in the abstract that contraceptive sterilization could never be the least restrictive outcome, having regard to the woman’s degree of incapacity and circumstances, a conclusion which was inconsistent with the language of the PPPRA. ³⁴ He approved instead of Lord Hailsham’s famously scathing criticism of the Supreme Court’s approach based on the woman’s rights in In re B (A Minor): ³⁵

To talk of the ‘basic right’ to reproduce of an individual who is not capable of knowing the causal connection between intercourse and childbirth, the nature of pregnancy, what is involved in delivery, unable to form maternal instincts or care for a child is to part company with reality.

Having found that the jurisdiction to sterilize existed, Miller J remitted the case for rehearing, cautioning that the court below must attach urgency to the matter so that termination remained a viable option. ³⁶

When the matter was finally reheard in the Family Court, KR was over 20 weeks pregnant. The application for a TOP was abandoned, because of the stricter ground required for a TOP now applicable, rather than any positive assertion of her rights. ³⁷ KR managed also to escape a forced sterilization, because further medical evidence suddenly materialized that there was ‘an appropriate and acceptable’, less invasive option to render her infertile – insertion after the birth of the child of a Mirena contraceptive coil without strings to prevent its removal by KR. The procedure would be repeated in 5 years’ time, though the Judge did warn KR that if she ‘did not fully cooperate with the order, she [ran] the risk of the Court determining that the only and least restrictive option available [was] sterilization’. ³⁸ Given the heavy reliance courts place on medical evidence of the available options in sterilisation cases, the inconsistent medical evidence in the first and second Family Court hearings is troubling. The child was born, free of the genetic condition, and later removed from KR’s care. ³⁹

KR’s circumstances were a far cry from B’s in the House of Lords’ decision in Re B (A Minor). ⁴⁰ B was severely intellectually disabled, such that she was unable to consent to sex, nor to begin to understand the nature or implications of pregnancy and childbirth; she had not displayed any desire for children; indeed she had shown an antipathy towards them and would be completely incapable of caring for a child. Her case was described as ‘an extreme case’ in which sterilization ‘as a last resort’ was in her best interests to avoid ‘an unmitigated disaster’ for her. ⁴¹ Her autonomy interest in the decisions was much weaker than KR’s and her need for protection commensurably greater.

By contrast, KR was much closer to the borderline of mental capacity than B. She clearly understood how to get pregnant and that pregnancy leads to a child; this was a planned and welcome pregnancy. She had taken steps to protect her foetus. She had some idea of what is involved in delivery. She exhibited some ‘maternal instincts’ (per Lord Hailsham in In re B) and, though she could not care for a child without full support, she had some understanding, though very imperfect, of a baby’s needs. She was expressing strong and consistent views.

Her reproductive capacity was certainly not ‘meaningless’ to her. ⁴² Her desire for children seemed part of a life narrative, to which she was seeking to give effect – what Donnelly calls ‘acting autonomously in a thicker sense’. ⁴³ To force a TOP on and to sterilize KR against her strong wishes would undoubtedly inflict profound psychological injury on her. As Miller J acknowledged, people with mental impairments experience sterilization as a symbol of reduced or degraded status, ⁴⁴ given that it is never forced on a mentally unimpaired woman. Nor was this a case where KR’s strong desire to give birth, if given effect to, would come at the expense of her parents’ interests. Although they would no doubt be distressed if the orders were not made, there was understandably no question of them being expected nor required to take on the burden of another child, least of all one with KR’s condition.

There was, I suggest, a possible fourth option, which no court considered, which accorded greater respect for her autonomy, while acknowledging the sad reality that she would be unable to raise the child without full support, which was unavailable. This was to respect her choice to give birth to the baby, and to facilitate an open adoption or fostering arrangement, within which KR could perhaps be accorded the status of being appointed an additional guardian (without day-to-day care) ⁴⁵ and granted legal rights of contact (with appropriate supervision) and very possibly play a significant role in its life. Had she been given sufficient time and support from someone she trusted to understand her options, their comparative advantages and disadvantages, and what was actually possible, she may well have agreed to such an arrangement. While relinquishing her baby pursuant to such an arrangement may have been distressing for KR, it surely would have been less so than either a forced TOP or surrendering the child without any such arrangement.

Further, had such an arrangement been agreed, the sterilization issue may have fallen away. KR may well have chosen to avoid a further pregnancy, at least for a period. Such a facilitated arrangement could have ‘ticked all the boxes’: less restrictive than TOP and sterilization; capacity-maximizing by enabling her to participate in the decision and showing greater respect for her wishes; and quite likely in the best interests of both KR and her child. The narrow range of options the courts considered showed a lack of imagination, it is suggested. ⁴⁶ Courts should see their role under the PPPRA as including where possible to work proactively with the parties and especially the woman, to try to reach a workable solution, which accommodates as far as possible her wishes and feelings.

An order for the non-therapeutic sterilization of woman with mental impairment is a draconian step and one only rarely authorized by the court, given the existence of an expanded range of effective and less invasive contraceptive options with fewer side effects and more enlightened attitudes to the rights of people with mental impairments. ⁴⁷ Most contemporary applications relate to therapeutic sterilization to treat a medical condition, ⁴⁸ including to treat menstruation. ⁴⁹ Most often it is accepted that an IUD or long-acting contraceptive treatment is both effective and less restrictive. ⁵⁰ But lest it be thought that KR v MR stands alone in NZ, in 2014 in Darzi v Darzi the Family Court made an order authorizing the non-therapeutic sterilization by laparoscopic tubal ligation as in the best interests of a young woman of unstated age with Down syndrome. ⁵¹ The Court placed decisive weight on the wishes of her mother as her welfare guardian, which prevailed over the young woman’s own wishes and preferences.

The Court accepted the evidence of Mrs Darzi, who lived with and looked after her daughter on a daily basis, that Ms Darzi did not have the capacity to make an informed, rational and effective choice about reproduction, especially in terms of being incapable of raising a child. If she was to become pregnant, she would not be able to care for it and the responsibility would fall to her family, particularly her mother. Judge Walker placed less weight on the young woman’s own statement that, while she was not yet ready to have babies, having just broken up with her boyfriend of three years, she may want babies when she was older. ⁵² She had, the Judge said, ‘not expressed a clear view that she definitely wishes to have a child. Nor [was] she opposing . . . the application’, ⁵³ though he did concede that she was unlikely to have had the capacity to do so. The case therefore stands in contrast to KR, whose opposition could not have been more ‘clear’ and ‘definite’, though this opposition did not protect even her from court-ordered TOP and sterilization.

Ms Darzi’s lawyer was, however, opposing the application, arguing that sterilization was not the least invasive intervention possible. The gynaecologist (unlike the GP) was equivocal and unprepared to recommend it as in her best interests. ⁵⁴ He indicated that the contraceptive options appeared limited: the injection had caused unwanted side effects (and so would an implant); and IUD devices would most likely be unsuitable, because a copper IUD would likely result in heavier menstrual loss and Mrs Darzi had concerns about her daughter’s ability to cope with this. (Could not a trial be undertaken first, before resorting to the invasive and irreversible option?) ⁵⁵ He did not believe that an appropriate Mirena IUD was available for women who had never given birth. (This latter opinion is medically contested by the manufacturer of the device). ⁵⁶

In an earlier Family Court decision, Re H, sterilization was refused because a less restrictive option was available (oral contraceptives administered by her mother). ⁵⁷ While Ms Darzi was unlikely to be reliable in taking oral contraceptives, presumably her mother could also have given them to her? Given that sterilization will only be authorized as a last resort and should not be ordered purely for the convenience of caregivers, ⁵⁸ the Darzi decision is silent on whether this option was even canvassed. Furthermore, there was no evidence that conception was likely, as the young woman’s relationship was over, but, said the Judge, ‘there [was] a necessity to act sooner rather than later’. Conception had to be ‘ruled out as a possibility’. ⁵⁹ Pre-emptive sterilization, without evidence of imminent need because of current sexual interest or activity, has also attracted criticism. ⁶⁰ All in all, this was, I suggest, too casual an approach to the authorization of an invasive and irreversible procedure contrary to the woman’s preferences and without clear evidence that it was necessary as the last resort.

To be clear, I do not argue for the artificiality inherent in the traditional best interests approach, which would have it that Ms Darzi’s interests were separate to her mother’s, which should have been considered relevant only to the extent that they might impact on her daughter’s welfare. Herring’s relational-based welfare would permit Mrs Darzi’s interest in not being saddled as principal caregiver of another child and the fate of the family as a whole to be considered. But Herring also agrees that justice must qualify the ethic of care, though its role should be to support caring relationships. ⁶¹ This would most often be relevant in the context of asking too much by way of sacrifice by the carer. But in this case, given the availability of less drastic alternatives, the burden borne by the daughter was, I would argue, significantly disproportionate to both her responsibility in the relationship and a fair distribution between them of the burdens and benefits in that relationship.

In any event, both KR v MR and Darzi v Darzi demonstrate that, applying a traditional ‘best interests’ test, which is the implicit philosophy of the PPPRA, NZ courts have been prepared to make decisions that at best to pay lip service or at worst expressly override the wishes and feelings of women with intellectual impairments. ⁶²

The mental capacity cliff-edge and the increased weight attached to the person’s wishes and feelings under the Mental Capacity Act 2005 (England & Wales)

Re SB (A Patient; capacity to consent to termination) is a good example of how much the outcome for the person hangs on what may be a close call about their ‘capacity’. ⁶³ SB was an intelligent, well-educated, 37 year-old woman of the Muslim faith, who worked in a demanding job. She had suffered from bi-polar disorder for some 8 years, had recently discontinued her medication, and become unwell. After brandishing a knife against her husband, she was detained as a compulsory patient, to which she strongly objected. She was now insisting on a TOP at 23 weeks, partly because of her concern about the medication’s effect on the foetus. When SB had learned of her pregnancy, she had shown every sign of wanting the baby until she had ceased taking her medication. She was worried about her ability to bring up a child, as she could see no future in her marriage and believed that her husband and mother would not be supportive. She had booked two termination appointments and had ordered abortifacient medications online, declaring herself suicidal if the pregnancy continued. SB had also experienced an earlier TOP, which she did not regret. Holman J considered that even though SB had some skewed thoughts and paranoid or delusional views with regard to her husband and mother, she nevertheless held some rational reasons for her decision. He held this a clear case in which the evidence did not displace the presumption of capacity. It would be, he said, ‘a total affront to the autonomy of this patient to conclude that she lacks capacity to the level required to make this decision’. ⁶⁴

Another judge could quite reasonably have taken the view that she fell on the other side of the line, based on a clear causal link between the now florid mental disorder and the nature of her decision. She had after all only sought a TOP after stopping her medication and becoming unwell. I suggest that the question of her capacity was more arguable than the judge countenanced. Had she lacked capacity, a difficult decision would have had to be made about whether a TOP was in her best interests. Re SB is a good example of the ‘artificial cliff edge created by the binary test for capacity’. ⁶⁵ It will of course be important to many to be recognized as competent and so have the right to make their own decisions. But for those close to the borderline but found just to lack capacity, the sometimes finely balanced judgement about capacity would be less critical, if their wishes and feeling were given a central place in the best interests decision. This has gradually occurred as result of s 4(6) of the MCA and its judicial interpretation, as I explore next .

The decision-making in KR v MR and Darzi v Darzi resembles that seen in some English judgements prior to enactment of the MCA. Courts then applied a broad, undefined best interests principle, the ascertainment of which commonly omitted consideration of or overrode P’s wishes, feelings or values. ⁶⁶ Emily Jackson has traced the sea-change in English judicial decisions, from the ‘“doctor knows best”‘ paternalism of Re F (Mental Patient: Sterilization) ⁶⁷ to ‘“the recent humane and empathetic approach’” shown in decisions of the Court of Protection. ⁶⁸ The introduction of the MCA was critical to this dramatic shift. The Act’s principles are analogous to the PPPRA’s two objectives Under the MCA a person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success; ⁶⁹ the decision-maker must, so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible, in acts and decisions affecting him; ⁷⁰ and regard must be had to whether the purpose of any decision or act can be ‘“as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action’”. ⁷¹ It codified a (diagnostic and functional) test for incapacity, ⁷² and subjected all acts and decisions under the Act for those lacking capacity to the best interests principle. ⁷³ Section 4 sets out a non-exhaustive “best interests checklist” and, crucially for the purposes of this paper, s 4(6) stipulates that those making best interests decisions must consider P’s past and present wishes and feelings, in particular if expressed in writing, the beliefs and values that would be likely to influence P’s decision if s/he had capacity, and the other factors that P would be likely to consider if able to do so.

The Explanatory Note to the MCA made it clear that best interests was intended to be an ‘objective test’, not a substituted judgement one, ⁷⁴ and that no factor in the checklist, including the person’s wishes and feelings, was to ‘carry any more weight or priority than another’. ⁷⁵ Nevertheless, early attempts were made to give some kind of formal primacy to P’s wishes and feelings. In Re S & S (Protected Persons) HH Marshall J QC suggested that if the person’s wishes could be reasonably accurately ascertained and were not irrational, impracticable (physically), or irresponsible (with respect to resources), this ‘effectively gives rise to a presumption in favour of implementing those wishes, unless there is some potential sufficiently detrimental effect for P of doing so which outweighs this’. ⁷⁶ Munby J strongly resisted this approach in ITW v Z, insisting on retaining a broad judicial discretion with no hierarchy in the list of factors in s 4; while the person’s ‘wishes and feelings w[ould] always be a significant factor to which the court must play close regard’, the weight to be attached to them would always be ‘case-specific and fact-specific, and depend on all the circumstances’. He suggested the following factors as relevant to the relative weight to be attached to the person’s wishes and feelings: ⁷⁷

But two further factors, and ‘crucially’ the second, made it clear that the weight to be attached to P’s wishes and feelings depended on the extent that they co-incided with the court’s view of what was best for P: ⁷⁸

And so, some COP decisions have attracted criticism for attaching decisive weight to other considerations, such as the preservation of life, ⁷⁹ including that of an unborn foetus, ⁸⁰ or safety or risk-minimization, ⁸¹ contrary to P’s wishes and feelings.

Despite the Explanatory Note’s insistence that best interests does not equate to substituted judgement, Lady Hale stated in Aintree University Hospitals Foundation v James that the best interests test is subjective, not objective. The court below had been wrong to focus on what ‘the reasonable patient’ would decide. It is the patient’s own wishes and feelings that must be considered. ‘The purpose of the best interests test is to consider matters from the patient’s point of view’. The patient’s wishes will not always prevail, any more than those of a fully capable patient can always prevail, since ‘we cannot always have what we want’. Nevertheless:

insofar as it is possible to ascertain the patient’s wishes and feelings, his beliefs and values or the things which were important to him, it is those which should be taken into account because they are a component in making the choice which is right for him as an individual human being. ⁸²

Lady Hale’s starting point of looking at matters from P’s perspective has evolved into the language of ‘“standing in P’s shoes’”. ⁸³ Her words prompted some COP judges to attach preponderant weight to ‘cogent and compelling’ evidence of incapacitated patients’ past statements indicating that they would not want life prolonging treatment in the circumstances, in order to permit their lives to come to an end in a manner consistent with their deeply held beliefs and values. ⁸⁴ In Wye Valley NHS Trust v B Peter Jackson J stressed the importance of giving proper weight to the wishes and feelings, beliefs and values of a patient who lacks capacity:

[A] conclusion that a person lacks decision-making capacity is not ‘an off-switch’ for his rights and freedoms. . . . [T]he wishes and feelings, beliefs and values of people with a mental disability are as important to them as they are to anyone else and may be more important. It would therefore be wrong in principle to apply any automatic discount to their point of view. ⁸⁵

Some courts have attempted to work with interested parties to facilitate a practical solution to the issues, which tries to accommodate as far as possible P’s wishes and feelings, as I have advocated above for KR v MR. For example, in Westminster City Council v Manuela Sykes the COP considered that it was in the best interests of an elderly woman with dementia to allow her to return home to her flat with her ‘heroic’ elderly carer on a 1 month trial basis, in accordance with her strong wish, contrary to family, religious, and expert views that she should remain in care. ⁸⁶

Despite this evolution, commentators have pressed for further amendments to the MCA to increase the level of respect required to be given to the person’s wishes, as well as requiring a reasoned justification when they are departed from. For example, Jackson seeks two statutory presumptions: first, that primacy would be to be given to the person’s wishes, unless it would cause her significant harm; second, that primacy would be given to her wishes even if doing so might result in significant harm, if they reflect her deeply and profoundly held values. ⁸⁷ The attraction of these is that they would shift the starting point of the debate to identification of the person’s wishes and an assessment of the extent to which they reflect her critical interests and deeply held values before factoring in the consequences of abiding by them. And a justificatory onus would impose a form of procedural accountability on the decision-maker as the price for acting contrary to her wishes. The Law Commission has recommended a similar proposal, ⁸⁸ which has not to date been progressed despite a supportive government response. ⁸⁹ As discussed further in Part VI, the pressure to make the MCA CRPD-compliant has added weight to proposals such as these.

Nevertheless, even on such an approach, P’s wishes and feelings would not be determinative and could still be displaced by countervailing considerations. A best interests standard, even one which gives primacy to a person’s wishes and values, is not a substituted judgement test. Autonomy, while an important value, is not absolute, and can be justifiably outweighed by factors such as: a person’s well-being or safety; the availability of resources; whether implementation is practically possible; or the extent to which commitment or co-operation is required from third parties. For example, in KR’s circumstances, her strong wish to raise her child herself and to have more babies could not be determinative, because of her elderly parents’ understandable unwillingness to help her raise her child and the unavailability of the required level of publicly-funded support to enable her to do so. It does not follow at all, however, that her wishes and feelings should have been so blatantly overridden. The decision-maker should strive to prefer options which give effect to her wishes and feelings to the greatest extent possible.

Weaknesses in the MCA in the extent of P’s participation in the process have also been identified. For example, there is no formal requirement that P attend the hearing or give evidence if possible or s/he wishes to do so. ⁹⁰ In practice, it is unusual for P to attend or give formal evidence, a practice said to be underpinned by stereotypical assumptions that mentally impaired people are too vulnerable to participate, and justifiably criticized as a form of ‘testimonial injustice’, which fails to value her as a giver of knowledge. ⁹¹ A practice, consistent with the inquisitorial nature of COP hearings and Lady Hale’s patient-centred approach, has developed for COP judges to meet directly with P, rather than P giving sworn testimony, providing written information, or having their views represented via counsel. For example, in Wye Valley Peter Jackson J did not feel able to reach a conclusion given the momentous consequences either way without meeting Mr B himself. ⁹² Though some judges have described this ‘direct engagement’ as enlightening and a valuable aid to their decision- making, such meetings also remain rare and even if held, there is a regrettable reluctance for the COP to give forensic weight to information and impressions of P gleaned from them. ⁹³ By contrast, NZ’s PPPRA does mandate the person’s presence throughout the hearing and when the order is made, unless excused or excluded by the Court. ⁹⁴ A publicly funded lawyer must be appointed to represent them unless they have their own, and they are entitled to be heard (though it is not presumptively mandatory), and to call and cross-examine witnesses. ⁹⁵ Article 13 of the CRPD adds weight to calls to strengthen these provisions to include a presumption that P gives formal evidence or to require the Court to consider these more flexible, less formal methods of ensuring that P’s ‘voice’ is directly heard by and accorded evidential weight by the judge. ⁹⁶

MCA decisions relating to non-consensual TOP and non-therapeutic sterilisation

In this part, I analyse judicial ‘best interests’ decision-making in recent MCA cases, first relating to abortions, then those on contraceptive sterilization. Overall, the contrast with KR and Darzi is dramatic, in particular relating to the relative importance attached to the woman’s wishes and feelings.

Under the current legal framework, both TOP and non-therapeutic sterilization are serious matters which engage a mentally incapacitated woman’s article 8(1) right to respect for private and family life and her article 12 right to found a family. ⁹⁷ Where, however, the procedure is in the best interests of the woman and the TOP is performed in accordance with the abortion legislation, the procedure is said to be a legitimate and proportionate interference with art 8(1), as carried out for the protection of health under art 8(2). In considering best interests, the court should strive for a balance between protection and autonomy. ⁹⁸ Where there is any doubt as to her capacity or best interests, application to the court must be made, ⁹⁹ as well as prior consultation had with the Official Solicitor. ¹⁰⁰ Clear evidence is required; a ‘fine balance of uncertainties is not enough’. ¹⁰¹

Re X (A Child), the first post-MCA case to consider TOP, concerned the proposed TOP of ‘a very damaged and impaired young girl’, aged nearly 14 years, who lacked Gillick capacity. ¹⁰² Although she could understand termination and its effect, she did not have a full understanding of what the later stages of pregnancy and the birth would involve and had only a very limited understanding of the responsibilities of raising a child. She had at first an ‘unambiguous hostility’ to a termination, but by the end of the hearing had been consistently expressing a wish for one for two days.

Munby J said that, excluding those cases where the mother has so little appreciation of what is going on as not to be able to express any wishes and feelings, there was a ‘vitally important factor’ that may well end up being determinative of her best interests: her wishes and feelings. He found it hard to conceive of a situation where a decision of this intimate and invasive a nature, whether to terminate or to continue with the pregnancy, might be forced on a woman. Either way, she would have to be at the very least ‘compliant and accepting’:

A child or incapacitated adult may, in strict law, lack autonomy. But the court must surely attach very considerable weight indeed to the albeit qualified autonomy of a mother who in relation to a matter as personal, intimate and sensitive as pregnancy is expressing clear wishes and feelings, whichever way, as to whether or not she wants a termination. . ..[I]t would not be right to subject X to a termination unless she was both ‘compliant’ and ‘accepting’. . . .Mere acquiescence – helpless submission in the face of asserted State authority – is not enough. . . . Something of the nature of consent or agreement, using those words in the colloquial sense, is required. .’..Accepting’ in my judgment captures the nuance very well. ¹⁰³

Another factor which Munby J considered important was the likelihood or otherwise of the woman being able to keep her baby if there was no termination. As I have suggested, a broader approach to this factor should be taken, in terms of the likelihood of her being able (with support) to have a meaningful and positive relationship with the child, even if she is unable to raise it herself. Although this requires a judge on the basis of incomplete information to predict (and so might be seen to pre-judge) the outcome of any care proceedings relating to the child after the birth, Munby J considered a judicial view on the matter to be ‘inescapable’. ¹⁰⁴ This seems absolutely correct, and it scarcely needs pointing out that application of these principles to the fiercely resistant KR would have been decisive in producing the opposite outcome to that reached by the first Family Court.

In Re AB (Termination of Pregnancy) the Court of Appeal approved Munby J’s approach in Re X (A Child). ¹⁰⁵ A Trust sought authority to terminate the 22–23 week pregnancy of a 24 year- old woman of Nigerian ethnicity with moderate learning disabilities and significant behavioural difficulties, with an IQ in a 35-49 range and who functioned at a level of between 6 and 9 years old. She had become pregnant by sexual assault while on holiday with family in Nigeria, while her mother (CD) was in the UK. CD was implacably opposed to the TOP for religious and cultural reasons (TOP was ‘simply unheard of’ in Nigeria). The social worker T and the Official Solicitor were also opposed. When CD heard of the Trust’s upcoming application for a TOP, she arrived at the Hospital unannounced with AB (then 16 weeks pregnant) and all of her possessions to ‘hand over’ AB’s care, as she felt she could not support AB if she had a TOP. (She recanted at trial, stating that she wanted AB back even if she had a TOP). From that point AB had lived in residential care. While AB herself was ‘happy being pregnant’ and indicated on occasions that she liked the idea of having a baby (‘like a nice doll’), her overall understanding, including of the birth process or that, in the Judge’s view, the baby was unlikely to be able to live with her, was very limited. ¹⁰⁶

The Trust’s medical evidence was unanimous that the pregnancy should be terminated, as being less traumatic for AB than giving birth and the baby being removed. If CD succeeded in obtaining a care order for the baby, they thought that it was probable that AB could no longer live with her mother and might lose her home as well, since she could not safely be left alone with the baby. Lieven J agreed: while even a late-stage TOP would be distressing for AB, it would be the least-worst option. She placed little weight on AB’s wishes and feelings, because of her very limited understanding.

In a unanimous judgement in the Court of Appeal, King LJ rejected the legal principle urged on her by CD’s lawyer that a TOP without the consent of a mentally incapacitated woman represents such a profound invasion of her art 8 rights that it should only be authorized where s 1(1)(b) of the Abortion Act 1967 is made out (i.e. that the termination is necessary to prevent ‘grave permanent risk to the physical or mental health of the woman’.). Although a well- intentioned argument in the sense of increasing the protection afforded to P’s autonomy, such an interpretation would have been a stretch. But the Court nevertheless allowed the appeal, on the ground that Lieven J had failed to have full regard to AB’s wishes and feelings.

To the extent that the Judge had taken account of AB’s wishes in the ultimate balancing exercise, which she said were not consistent or clearly expressed, she had failed to take account of her feelings, which were, ‘as for any person, uniquely, disabled or not, important’ and ‘uniquely her own and not open to the same critique based on cognitive or expressive ability’. ¹⁰⁷ This was a significant omission, even though they might end up being outweighed by other factors. On this, Donnelly makes a fair point that the MCA, in referring to ‘wishes and feelings’ in s 4(6)(a), is preferable to the CRPD’s ‘will and preferences’, in recognizing the role of affect and emotion, as well as rationality, in decision-making. ¹⁰⁸ (The same can be said for ‘beliefs and values’, given the importance of culture and religion).

The MCA directs decision-makers to take into account P’s ‘past and present’ wishes and feelings. Pre- and post-incapacity wishes may be inconsistent, and there is no indication as to which should prevail. Courts have, however, tended to place greater weight on those expressed when the person had capacity as a representing a ‘thicker expression’ of their autonomy. ¹⁰⁹ An example occurred in An NHS Trust v CS (Termination of Pregnancy). ¹¹⁰ CS had two children and lived in a violent relationship. She discovered she was pregnant. She told her mother, sister and several friends that she did not want another baby in these circumstances and wanted her sister to accompany her to an abortion clinic. Days later she was violently assaulted by her partner, sustaining serious head injuries, such that she was no longer mentally competent to decide. Since the injury she had on occasions stated that she wanted to keep the baby; at other times she confirmed her previous position. Baker J was satisfied that her best interests lay in authorizing the TOP, as consistent with her clear pre- injury wishes, as well as promoting her physical recovery and rehabilitation; it was impossible to attach any significant weight to her fluctuating wishes since the injury.

On a side note, it is interesting to note reconsideration of suggestions in earlier cases that a vaginal birth might well be too distressing for a woman without capacity and that, if childbirth was to occur, delivery by caesarean section procedure would be in her best interests. ¹¹¹ More recently, obstetric advice is that there is no reason in general for women without capacity to be able to cope with pregnancy and vaginal childbirth. In NHS Trust v JP Williams J authorized a planned caesarean section procedure for a woman without capacity against her wishes on the ground that she could not cope with the pain, distress and duration of vaginal delivery, only for her to go into labour and successfully deliver her baby early naturally. As Williams J stated: ‘the capacity for individuals to confound judges’ assessments is a reminder . . . of the gap between probability and actuality’. ¹¹²

In relation to contraceptive sterilization, in addition to the woman’s wishes and feelings, the key issue is, as we have seen, the availability of less invasive methods of achieving contraception. ¹¹³ It is instructive to contrast Darzi v Darzi with A Local Authority v K (by the Official Solicitor), as the facts are close. ¹¹⁴ It concerned an application for sterilization of a 21 year-old woman with Down’s syndrome, who lived with a loving family and was a day student at a specialist college for people with learning disabilities. An implant, inserted under local anaesthetic, had been tried but caused distress and behavioural changes. Like Ms Darzi she was not currently sexually active nor seeking a sexual relationship, but her parents were concerned about their inability to supervise her during the day, and her vulnerability to pregnancy as she got older. So strong was their concern that they threatened to remove her overseas for sterilization if the order was refused.

Having determined that K lacked capacity regarding contraception, Cobb J proceeded to make a decision in her best interests. Because there was a low risk of pregnancy and K was well supervised at home and school, sterilization surgery would be disproportionate and not in her best interests. There were less restrictive methods of contraception available which ought to be tried first: ‘Plainly risk management is better than invasive treatment, it is less restrictive’. ¹¹⁵ Should she become sexually active, an IUD should then be attempted. While Cobb J paid significant attention to the views of K’s parents as to why they believed sterilization was the right procedure for K, regrettably he made no reference to any wishes and feelings that K might have had.

Exceptionally, sterilization may be authorized despite it not being the least restrictive intervention, where it is what the person wants. For example, in An NHS Trust v DE, the first case in which the sterilization for non-therapeutic reasons of a man lacking capacity was permitted, the COP placed greater weight on ‘the magnetic factor’ of his wishes and feelings in deciding that a vasectomy was overwhelmingly in his best interests, than on the least restrictive intervention principle. ¹¹⁶ DE already had a child and was adamant that he did not want another. After the child’s birth his life had been tipped upside down, because of the need for his and his girlfriend’s respective parents to restrict his hard-won independence and his access to his girlfriend of 10 years to ensure they did not have sex. If he was to have another child, this important and loving relationship was likely to be disrupted. The distress caused to his parents would no doubt affect him too. His use of condoms was likely to be unreliable. In addition to his strong desire to have no more children King J emphasized the importance of allowing DE to resume his long-term relationship with his girlfriend and restoring his lost skills and independence.

Convention on the Rights of Persons with Disabilities 2006 (CRPD)

The CRPD entered into force in 2008 and was ratified by NZ the same year. ¹¹⁷ It sought to catalyse a transformative shift in approach to disability. Its relevant general principles include respect for inherent dignity, individual autonomy, including freedom to make one’s own choices, independence of persons, non-discrimination, full and effective participation and inclusion in society, respect for difference and acceptance of persons with disabilities as part of human diversity, equality of opportunity, and accessibility. ¹¹⁸ It is premised on the social model of disability, which makes a fundamental distinction between ‘impairment’, being a person’s underlying condition, and ‘disability’, which results from the ways in which societal conditions can accentuate or reduce or remove the impact on an individual of their impairment. It emphasizes the need to address social barriers and to adapt environments, rather than casting mental capacity as an individual deficit which must be compensated for. ¹¹⁹

For some years, concerns have been expressed over the extent to which both the MCA and the PPPRA fail to comply with its key principles. The focus is on Article 12, described as ‘the most conceptually challenging element of the CRPD’s paradigm shift’. ¹²⁰ Its drafting was contentious and its final wording reflects compromises. ¹²¹ Its purpose is to reaffirm that persons with disabilities enjoy equal recognition before the law and that states recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life. ¹²² Article 12 distinguishes between legal capacity and mental capacity as entirely separate concepts. Legal capacity is the ability to hold rights and duties and legal agency to act on those rights and to have those actions recognized by law. It is the key to accessing meaningful participation in society, and is an inherent right accorded to all people by virtue of being human, irrespective of their individual mental impairments. Mental capacity refers to the highly variable decision-making skills of people. ¹²³ In the past the two concepts have been conflated, so that where a person is considered to have impaired decision-making skills, such that they are unable to meet statutory capacity tests, their legal capacity to make a certain decision for themselves is denied them. Article 12(3) does not permit such discriminatory denial of legal capacity, but requires that the person be provided with whatever support is necessary to enable them to make decisions that have legal effect. The approach is sometimes referred to as ‘the support paradigm’: ¹²⁴

12(3). States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.

Article 12(3) does not specify what form the support should take. The UN Committee on the Rights of Persons with Disabilities’ vision in its first General Comment 1 (GC1) on article 12 articulates a strong vision of what these ‘appropriate measures’ must amount to, the key elements of which can be summarized as: ¹²⁵

The Law Commission, in both its Consultation Paper and Final Report, was in favour of establishing a supported decision-making scheme in relation to the MCA. ¹²⁶ Though

Government responded that it was committed to supported decision-making in principle, it indicated that it wanted more time and would consider different approaches in its response to the CRPD. ¹²⁷ And so, amendment of the MCA to establish a detailed process for supported decision-making has yet to eventuate.

No exception to supported decision-making based on P’s will and preferences is offered in article 12 itself. The assumption is that everyone, no matter the extent of their impairment or how serious the consequences, can make a decision with appropriate support. But what of the ‘hard cases’, such as those in comas, in states of advanced dementia, with severe brain injury, or with profound learning disabilities who are unable to meaningfully communicate even with considerable support? Gooding cites also the ‘troubling moral dilemma’ of certain decisions that carry serious risk for individuals, such as suicidality or self-harming behaviours. On the one hand, he refers to ‘the dignity of risk’, by which he means that persons with mental impairments are often denied the freedom to take risks; on the other, he challenges the claim that support with decision-making, if appropriately pitched, is sufficient to manage such situations and argues that support must have its limits. ¹²⁸

The GC1 does countenance one exception to supported decision-making: ¹²⁹

Where, after significant efforts have been made, it is not practicable to determine the will and preferences of an individual, the ‘best interpretation of will and preferences’ must replace the ‘best interests’ determinations. . . .

Decision-makers applying a ‘best interpretation of will and preferences’ standard must strive to understand what the person wants or would have wanted and ‘to convert that into legal effect on their behalf’, ¹³⁰ whereas a best interests decision-maker may also attempt to reach this understanding, but is not bound by their best interpretation thereof, if they do not consider that course in their objective best interests. There are concerns about whether a ‘best interpretation of will and preferences’ is ethically justified or practical in situations where the person is so impaired that their present preferences simply cannot be reliably determined. Mary Donnelly argues that, where the person has given no indication of their will and preferences, the ‘best interpretation’ approach permits the ‘hidden exercise of power’ by the ‘interpreter’, and so is not an appropriate fall-back to ‘will and preferences’ and should not be adopted. ¹³¹ In its two reports the Essex Autonomy Project (EAP) frankly admits that the exercise of legal capacity may not always be possible, even when all possible supports are provided. In such circumstances, the law must provide for someone else to take the decisions that the affected individual is unable to take, while establishing a process to be employed and safeguards to protect them. ¹³²

In addition, there may be impediments which limit a person’s ability to make an autonomous decision, such as undue influence, exploitation, manipulation, conflict of interest, abuse by others. Article 12(4) requires states to create effective and appropriate safeguards relating to the exercise of legal capacity for such situations, which will protect against abuse while at the same time ‘respect’ the rights, will and preferences of the person:

12(4). States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, . . ., are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests. (Emphasis added).

The GC1 gives little substantive advice as to what these safeguarding measures might look like. The EAP, however draws these out more explicitly, suggesting a plurality of safeguards. ¹³³

Article 12 itself deliberately omitted any reference to the permissibility of substitute decision- making regimes based on best interests. Nevertheless, the GC1 asserts that ‘the “best interests” principle” is not a safeguard which complies with article 12(4), because a ‘decision made by a substitute decision-maker is based on what is believed to be in the objective “best interests” of the person concerned, as opposed to being based on the person’s own will and preferences’. ¹³⁴ Its state reports, including those on the MCA and PPPRA, have repeatedly stated that states parties must review their guardianship laws, take action to abolish substitute decision-making regimes based on best interests, and replace them with supported decision-making alternatives, which give primacy to a person’s will and preferences. ¹³⁵

This conclusion is, as can be imagined, controversial. For example, the EAP rejects it, appealing to the words of article 12 themselves ¹³⁶ and the CRPD’s travaux préparatoires. It nevertheless concluded that the MCA in its current form is non-compliant with the Convention, though remediably so, and that the current configuration of its best interests standard fails to incorporate the safeguards required by Art 12(4). ¹³⁷ As such, the EAP occupies a middle ground between mere consideration of P’s will and preferences and unqualified deference to them:

[Mere consideration of will and preferences] is a policy that would fail to satisfy the proportionality requirements that frame the safeguarding requirements of Art. 12(4). ¹³⁸ Under the proportionality requirements, the state has an obligation to consider whether there may be exceptional circumstances where limited actions contrary to the will and preferences of a person with a disability may in fact be the most proportionate way of protecting the full range of rights and freedoms reaffirmed under the CRPD.

Its principal recommendation is to amend the best interests standard through adoption of a rebuttable presumption that, when the wishes of a person lacking mental capacity can reasonably be ascertained, the decision-maker shall make the decision that accords with those wishes, subject to obvious constraints of possibility and non-criminality. That presumption should stand ‘in the vast majority of cases’, and should be rebuttable only if stringent criteria are satisfied. Action which contravenes the person’s known will and preferences should only be permissible if it is shown to be a proportional and necessary means of effectively protecting the full range of the person’s rights, freedoms and interests. ¹³⁹ This recommendation accords with the academic commentary and the Law Commission’s view, discussed in Part IV. ¹⁴⁰ For my part, I agree also that there will always be a need in some cases for substitute decision-making to operate ‘alongside’ or to ‘coexist’ with a supported decision-making framework based on will and preferences. ¹⁴¹ But the challenge remains how to find a balance which deals with the ‘hard cases’ without providing an opening for strong paternalism to creep back in as a matter of course.

Ironically, the non-inclusion of the best interests test as a primary principle in the PPRA and confining its primary objectives to the least restrictive intervention and capacity-maximizing principles makes the PPRA on its face more compliant with the CPRD than is the MCA. The least restrictive intervention principle is consistent with the art 12 requirement of proportionality between safeguarding measures and the degree to which such measures affect the person’s rights and interests, and that such measures be ‘proportional and tailored to the person’s circumstances’. ¹⁴² And the capacity-maximizing objective is consistent with supported decision-making and respect for will and preferences. But the PPPRA is currently well able to function in practice as little more than a ‘bare’ best interests model, permitting hard paternalistic intervention which ignores, downgrades, or overrules a person’s will and preferences, as illustrated by KR v MR and Darzi v Darzi. Despite repeated exhortation by the UN Committee to revise its laws to make them conform more closely with article 12, ¹⁴³ NZ’s combined second and third periodic reports in October 2019 unapologetically stated that there were no initiatives currently underway or planned to revise the PPPRA! ¹⁴⁴ Ministerial referral of the Act to the NZ Law Commission for its review and revision is indicative of a more appropriate change of heart.

It would be possible for Family Court judges to insist on supported decision-making when exercising jurisdiction under the PPPRA. But an effective regime needs governmental commitment and proper resourcing, and principles as to the limits of support need to be articulated. Supported decision-making would also need to be adapted to be culturally appropriate for use by peoples who prefer collective forms of decision-making, such NZ’s indigenous Māori people. ¹⁴⁵ It would also be possible for judges to interpret the two primary objectives and the undefined best interests principle as requiring strong respect for a person’s will and preferences, as has evolved under the MCA. But such a process leaves reform to judicial discretion and is as such too uncertain and lengthy a process. In the meantime, it would leave unaddressed the myriad of everyday interactions and decisions needing to be made by and for people with mental impairments. In addition to government funding, the issue warrants careful legislative drafting and as such is an excellent candidate for the NZ Law Commission’s attention.

Conclusion

When enacted NZ’s PPPRA was considered forward-thinking. However, it is now over thirty years old and has been overtaken by the ‘rights era’ in respect of persons with mental capacity impairments, reflected most obviously in the CRPD. As a result, it is generally agreed to be in need of major overhaul. ¹⁴⁶ This article has focused on a key deficiency viz. the recognition that many people with mental impairments retain strong autonomy interests and want to make for themselves or actively participate in important decisions affecting their lives and health. But the Act, with its judicially incorporated best interests principle, is far too open to applications which authorize coercive paternalistic intervention which disregards or overrides the person’s wishes and feelings.

The MCA’s statutory direction to require that decision-makers ascertain and take into account their past and current wishes and feelings in working out their best interests goes some of the way. Its interpretation to accord them special status and a high degree of respect as a ‘vitally important factor’ recognizes that, to repeat Peter Jackson J’s words in Wye Valley: ‘the wishes and feelings, beliefs and values of people with a mental disability are as important to them as they are to anyone else and may even be more important’. ¹⁴⁷ But NZ should also take account of a consensus that has emerged that the best way to make the MCA CRPD- compliant is to strengthen the ‘best interests checklist’ through the inclusion of presumptions that P’s wishes and feelings are to be treated as determinative unless certain strict criteria are met, or through inclusion of phrases like ‘particular weight’ or ‘special regard’, as well as placing an justificatory onus on decision-makers for departing from them.

KR v MR and Darzi v Darzi illustrate the very concerns that gave rise to the Convention, viz. that substitute decision-making systems based on ‘objective’ best interests decisions have been used in the past to deprive people with mental impairments like KR and Ms Darzi of many of their fundamental rights, including reproductive rights. On the UN Committee’s reading, the Convention involves more than just a recalibration of the weight to be attached to a person’s will and preferences, but an abolition altogether of substitute regimes based on best interests. This is an extreme position, of which some, myself included, are wary. A person’s will and preferences and more so, a ‘best interpretation’ of them cannot always be given primacy, and may occasionally have to yield for justifiable reasons to other considerations.

Nevertheless, NZ needs to move to modernize and reform its adult guardianship legislation. CRPD-compliance requires the inclusion of supported decision-making and a requirement that decision-makers pay much greater attention to the wishes and feelings of the person. This would place them at the centre of the decision to be made by or about them, where they rightfully belong.