If you haven’t seen it already can I draw your attention to an excellent new resource to help ensure carers and family are involved in best interests decisions where appropriate. It was developed by Ambitious about Autism, Mencap and the Challenging Behaviour Foundation in conjunction with solicitor Alex Rook at Irwin Mitchell Solicitors.
… take into account, if it is practicable and appropriate to consult them, the views of—(a) anyone named by the person as someone to be consulted on the matter in question or on matters of that kind,(b) anyone engaged in caring for the person or interested in his welfare,(c) any donee of a lasting power of attorney granted by the person, and(d) any deputy appointed for the person by the court, as to what would be in the person’s best interests and, in particular, as to the matters mentioned in subsection (6)
One of the remarkable and interesting things about the MCA, as opposed to other mechanisms for substituted decision making (like the Mental Health Act), is that it does open up new spaces for new forms of ‘expertise’ beyond the medical, and even beyond the professional. If we look to cases like W v M (2010), and consider the sheer breadth of individuals whose views were considered relevant to the best interests decision, it’s interesting to observe that traditional hierarchies where the views of certain classes of experts displace others, are in some respects dislodged. Even the views of nurses (who were reminded that they had no training in neurological observation ), of lowly care workers, counted alongside those of world leading experts in neurorehabilitation. Arguably in that case counted for even more (e.g. para 251). One of the key factors which distinguishes ‘expert’ from ‘caregiver’ knowledge is the duration for which they have known a person. In my research I explore this in terms of the contrast between Foucault’s concept of ‘pastoral power’ (the individualised knowledge of the shepherd) and disciplinary power (the knowledge of populations and distributional norms by disciplinary professionals).
This often becomes particularly problematic for parent carers of people with developmental disabilities, where their sons or daughters reach majority age but lack capacity. One person I interviewed in my research described the situation as the realisation that parents were no longer the ‘directors’ of their children’s lives, but ‘members of the board’. Often this issue is framed as ‘what about the rights of families?’, but I do think its important to remember that the majority of best interests decisions are taken about adults, and parental right evaporates when a person reaches majority age. It is important to emphasise that there are limits to the rights of families to be involved and consulted. Section 4 MCA requires that family are informed about and consulted on important decisions, but only where it is ‘practicable and appropriate’ – and sometimes it is not. The burden of showing that it was not appropriate or practicable to consult will rest with decision makers, but there might sometimes be such grounds. Another flashpoint between families and professionals may be if a person is said to have capacity but their family disagree, and that person wishes to make a decision which family feel is risky or not in their best interests. Such issues often emerge around leaving home, or around intimate relationships. Where a person is believed to have capacity, no such duty to consult and include family exists – and challenging on whether or not a person has capacity can be tricky if the information about the decision is withheld from families. This can feel very frustrating to families, but it is also important to recognise that sometimes it is vital that their relatives are given the space they need to develop a private and independent life away from them. Finding a balance can be tough.
“The IMCA will:
• be independent of the person making the decision
• provide support for the person who lacks capacity
• represent the person without capacity in discussions to work out whether the proposed decision is in the person’s best interests
• provide information to help work out what is in the person’s best interests (see chapter 5), and
• raise questions or challenge decisions which appear not to be in the best interests of the person.” [10.4 MCA Code of Practice]
So the information and the potential to challenge decisions relates to P’s best interests, not purely to what P wants. Contrast this with the approach to independent advocacy set out by the Scottish Independent Advocacy Alliance in their Principles and Standards:
‘Sometimes people think that advocacy is about working in the best interests of an individual. In fact, sometimes the advocate is supporting an individual to do something that is not in their own best interests. Often professionals make decisions that are in the best interests of an individual because they have a legal duty to do so. Advocates do not have such a legal duty. An effective advocate needs to challenge, question and hold professionals to account when best interests are given as a reason for decisions made about their advocacy partner.’
The function of the advocate there is not to test the case against their own view of P’s best interests, but to test the cases against what P actually wants.
REDLEY, M., PRINCE, E., BATEMAN, N., PENNINGTON, M., WOOD, N., CROUDACE, T. & RING, H. (2012) ‘The involvement of parents in healthcare decisions where adult children are at risk of lacking decision-making capacity: a qualitative study of treatment decisions in epilepsy’. Journal of Intellectual Disability Research. [online]
Background: Patients with intellectual disabilities (ID) receive health care by proxy. It is family members and/or paid support staff who must recognise health problems, communicate with clinicians, and report the benefits, if any, of a particular treatment. At the same time international and national statutes protect and promote the right of people with disabilities to access the highest attainable standards of health on the basis of free and informed consent. Methods: To consider the role of parent-proxies in the management of epilepsy in adult children with ID who are at risk of lacking capacity to make decisions about their health care we interviewed 21 mothers. Findings: These mothers are not pursuing changes in treatment that might improve their son or daughter’s epilepsy, nor are they willing to countenance changes in treatment. Clinicians concerned to build and sustain therapeutic alliances with these mothers, our evidence suggests, may well avoid going against their wishes.
Discussion: Our research highlights the interactional contingencies of a hitherto neglected three-way clinical relationship comprising parent-proxy, an adult at risk of lacking decision-making capacity, and a treating clinician. This is a relationship, our findings suggest, where little importance is attached to either patient consent, or involvement in treatment decisions.
‘Mrs Westwick was the only parent who reported contemplating a son or daughter’s involvement in a treatment decision. Explaining her reticence to pursue the delayed appointment Mrs Westwick says that she and Graham have different understandings of whether he will still need to take medication, and suggests that Graham is not entirely convinced by the merits of a Vagus nerve stimulator. Nonetheless, the effect of not chasing this assessment is that Mrs Westwick is in control: Graham is denied an oppor-tunity to exercise autonomy over his treatment, and the managing clinician cannot advocate for a change in treatment.’ p6
‘…it is our contention that were a mother (a parent-proxy) to volunteer her views on a change of treatment, or be asked her views on a proposed change of treatment, only to have those views sidelined or dismissed she may well feel that she was being ignored and that the interests of her son or daughter were being threatened. Clinicians wishing to build and sustain a therapeutic alliance with the mothers of these patients must be prepared to listen to these mothers, who hold clinically important information; they must be prepared for some degree of shared decision-making, being aware that where a mother feels her wishes are not being respected she may withdraw from the clinical service by not attending or pursuing clinical appointments, and finally clinicians must recognise, as suggested by excerpt 8, that these consultations could become emotionally charged. It is our conclusion, therefore, that clinicians may well avoid going against a mother’s wishes, by agreeing to, or at least assenting to a mother’s reluctance to change a son or daughter’s medication. Furthermore, we found no evidence to indicate that, in the interests of building a therapeutic relationship with a parent-proxy, clinicians were following the CRPD or MCA and involving these adult patients in decisions about their own treatment.’ p7
Although the s4 MCA procedure requires P to be involved in substituted decisions to the greatest possible extent, the researchers found no evidence of this. They did, however, feel that there was some ‘sharing’ of decisions with parents. This really points to the critical issue underpinning the effectiveness of the MCA in promoting autonomy: power. The reality is that if P is sidelined from decision making, he may not even be aware of this, and he will have few accessible levers to show that – contrary to the s4 MCA requirements – he was not adequately involved in decision making. By way of contrast, sidelined family members have many more means at their disposal to challenge their exclusion. Compliance of family members will often be essential to any clinical program – as a holders of necessary information for clinicians, the means through which P even comes to clinical attention, and those responsible for the day to day application of clinical decisions. The long running case of A Primary Care Trust v P shows that although disciplinary power can limit this parental power over clinical decisions, the reality is that the procedure for doing so is costly, lengthy and extremely stressful for all. A far better tactic, for clinicians, will therefore be to keep carers on side. This has the unfortunate effect of meaning that where carers’ and P’s interests and preferences diverge, P’s own voice is much more likely to be silenced. The discussion comments on Mencap’s own research into parental involvement, which has a bearing on the tools discussed above:
‘Advocacy organisations and especially Mencap (2007) have, in contrast, highlighted inequalities in health care and how clinicians regularly fail men and women with ID by not consulting with or involving parents and family members in care and treatment decisions. Be this as it may (and our research suggests the contrary) Mencap’s analysis does not begin to consider the practical dynamics of parent and family members’ actual involvement in treatment decisions. In sum, the interactional contingencies of involving a parent-proxy in a three-way relationship involving an adult at risk of lacking decision-making capacity, their proxy, and a treating clinician have not been considered. As such, our study points to an important and hitherto neglected topic: the involvement of parent-proxies in the care and treatment received by adult children at risk of lacking decision-making capacity.’