Eleanor Roosevelt, 1958

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

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Monday, 30 April 2012

Improving family and carers' involvement in best interests decisions

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.

The role of family in best interests decisions

Under s4(7) MCA, if a person lacks the mental capacity to make a decision for themselves, then best interests decision makers must (amongst other things):
... 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)
The tools developed by the above organisations include template letters for situations where families feel excluded from decision processes or from decisions which have been taken, which will be very useful for a range of situations.  The information and resources are certainly very much needed.  One of the questions I am asked most frequently by carers, and in particular parent carers, is 'what about my views?', and this is often conjoined with an expression that they - not 'experts' - know the person best.  I respond by pointing them to s4(7) MCA, and the duty of best interests decision makers to consult those involved in caring for a person.  
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 [133]), 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).

In the case W v M the views of family did not prevail, but in other cases you could argue that families' testimony offered a powerful alternative perspective to those of professionals (e.g. Neary v Hillingdon (2011)A London Local Authority v JH & Anor [2011] etc).  This is happening because the 'best interests' procedure was deliberately designed not to be skewed towards medical, or even professional, worldviews, and to be open and indeterminate in the range of considerations it covered.  One might conjecture that this 'openness' and indeterminacy to different sources of evidence and normative claims is precisely what makes Court of Protection proceedings potentially so time consuming (and so interesting), because such a wide range of views and issues must potentially be canvassed.  And it is precisely why the courts can't just defer to professional opinion with only some cursory scrutiny of their best interests decisions (however much some professionals might think that they, not the court, are better placed to make such judgments).  Best interests is not (yet) a purely professional zone, although as pressure to slim down court cases increases, it may be that the pressure grows to take the shortcut of regarding some types of professionals as 'naturally' placed to make unscrutinised and uncontested best interests decisions than this complex and time consuming balancing of views and considerations.

Family are often surprised to find that they are not decision makers

In reality it doesn't always happen that family are always consulted.  I'm often contacted by people who feel excluded from best interests decisions, and it's good to have materials like this to direct people to.  The converse misunderstanding is also sometimes true.  Despite the relatively clear provisions of the MCA, there does seem to be some ongoing real-world confusion about who the decision maker is in situations where a person lacks capacity.  Only last week a relative of mine who lacked capacity was seriously ill; interestingly the prevailing view seemed to be that 'next of kin' were to make decisions, when the legal situation was that the doctor was the decision maker and we were merely consultees.  In this situation it didn't really matter, we were all of one mind, and our respective sources of knowledge of the situation - medical, and personal - were complementary parts of the puzzle of what should be done.  In other situations, where family and professional decision makers' views come into conflict, the issues of where the power lies will need to be more clear.  At this point, family are often surprised to learn that - contrary to the received wisdom - 'next of kin' or parents are not decision makers unless they have authority under an LPA or deputyship.

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.

Dispute resolution mechanisms accessible to all are of central importance

At the heart of many MCA disputes is the fact that although the views of family carers should feed into the best interests decision, the final power to make the decision often does not rest with them.  Some would have preferred these decisions to default to next of kin (to be challenged by professionals where appropriate), but there seems to me to be as much scope for family to make poor decisions as any class of professional.  The crucial question has to be: what happens when disputes about what is in a person's best interests emerge?  Mechanisms to challenge contested best interests decisions can be time consuming (think: local authority and NHS complaints procedures, or the Local Government Ombudsman), or else prohibitively expensive and stressful proceedings in the Court of Protection.  I hear on the grapevine of interesting local level systems for dealing with these types of disputes, and I hope in the future to conduct research into some of these myself.  

Sometimes there may be no dispute between carers and professionals, but P himself might object to the decision - in those circumstances, I wonder, how accessible are these dispute resolution mechanisms for P to use to challenge decisions made under s4 MCA which he disagrees with?  The central concern of my current research is whether 'P' - the person the decision concerns - is himself able to challenge decisions made about him under s4 MCA.  At present, the reality is that unless P has family  who are both willing and able to challenge best interests decisions made by professionals on his behalf, on the issues he objects to, he will struggle to contest them.  There seems to me to be an obvious role for advocacy, and not just of the short term 'best interests' variety which merely advocates for the 'best interests' view of yet another professional, and then only where family are not already involved*. In order to really come of age and be the 'empowering' and 'autonomy-promoting' act the MCA has always claimed to be, and not a proprietary battleground between carers and professionals, we need to look beyond the 'rights of carers' in best interests decisions.  Better practices and tools to ensure the views of family and carers are heard are important, but only in the sense that they are instrumental to securing the rights and voice of P.  What we really need to look at are ways to empower P himself to ensure his voice is heard, the strongest possible case for his wishes and preferences is made, and his challenges to determinations of what are in his best interests are answered.  Otherwise his only hope for empowerment will be contingent upon his finding openings or opportunities to exploit in the wars of others.

*I am, of course, referring to IMCA's here - although I realise that some IMCA's do not interpret their role in terms of advocating for 'best interests' but for what P actually wants.  I think this is great where it happens, but it is not mandated by the MCA, and there are few effective pressures to ensure IMCA's challenge on P's behalf where P objects to decisions made about him.  Neither, speaking to IMCA's, are they adequately resourced to be able to do so on a reliable basis.  The approach to IMCA advocacy in the MCA code of practice:

"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.

Postscript - research on parental involvement in decision making
By coincidence, a research paper on involvement of parents in healthcare decisions about adult 'children' with learning disabilities came to my inbox yesterday.  The reference is:
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]
I'll reproduce the abstract for your interest:
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.
A few interesting passages from the study:
'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's interesting to observe that although ostensibly s4 MCA requires inclusion of 'P' in substituted decisions, by exercising control over access to the 'decision space' (ie. the appointment with a clinician where a decision over possible changes to treatment comes up), involvement of P in decisions about his treatment can nevertheless be very limited.  However, once the decision space has been entered, at law the responsibility to involve P in the treatment decision lies with the clinician.  However, as the next passage suggests, clinicians may be heavily influenced by carers, and that may lead to exclusion of P from the decision process:
' 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.'

1 comment:

  1. Very interesting article Lucy - thanks for the link.

    By coincidence as I was searching for it on Wiley I found another study (this time in Child: Care, Health and Development): What parents find important in the support of a child with profound intellectual and multiple disabilities (S. L. G. Jansen, A. A. J. van der Putten, C. Vlaskamp).

    The background and aim of the study was to explore "the importance of a partnership between parents and professionals in the support of children with disabilities ... [which] is one of the key elements of ‘family-centred care’.

    Aim The purpose of this exploratory study was to examine what parents with a child with PIMD find important in the support of their child."

    What I found interesting about this study was the fact that it was actually parents of 'children' aged 17 and over which represented the largest group of respondents, and that implicit within the questions which were being put was the assumption that family involvement was necessarily benign. In particular I was interested by one of the propositions being put to the participants was asking them to rate the services depending on the extent to which they "recognize that your family has the final say regarding the individualized support programme for your child".

    To be fair, given that the participants were drawn from a range of people who claimed that the "child" has a developmental age of up to 24 months, it is perhaps unsurprising that notions about the "child's" autonomy weren't better explored. However I thought it was an interesting article to read from a capacity and autonomy perspective...