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'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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Thursday 25 July 2013

The Assisted Decision-Making (Capacity) Bill in Ireland - a bit of a mixed bag

Readers from the Republic of Ireland will almost certainly know that the Oireachtas has now published the long-awaited (and newly titled) Assisted Decision-Making and Capacity Bill. This is a very exciting development, not just for Ireland but for states around the world who are grappling with the implications of the UN Convention on the Rights of Persons with Disabilities (CRPD) for legal capacity matters. Ireland has been operating with a 19th century ward of court system in relation to legal capacity (amongst other statutory and common law provisions), and had committed itself to reforming this system before it ratified the UN CRPD. Onlookers (like myself) watched with interest as constructing legal capacity legislation which complies with the CRPD is no mean feat - it is doubtful that any state has managed it and many states (such as the UK and Australia) are actively contemplating its implications.

Under the CRPD, legal capacity is primarily governed by Article 12 on equal recognition before the law. The drafting of this article was very controversial, and it retained a degree of ambiguity as to whether or not it permitted what are called, in the parlance of the CRPD, ‘substituted decisions’. Substituted decisions are decisions made by a third party on behalf of another on the grounds that they ‘lack capacity’. Although the text of the Article is ambiguous, however, its interpretation by the UN Committee for the Rights of Persons with Disabilities has not been – they have repeatedly stated that regimes of substituted decision making must be replaced by regimes of ‘supported decision making’. I have gathered together the various comments of the CRPD Committee relating to legal capacity in this document if you would like to see for yourself what they are saying. There are also implications for this Bill from Article 13 (access to justice), Article 14 (liberty), Article 15 (on torture, but especially in relation to non-consensual medical experimentation), Article 17 (bodily integrity) and Article 19 (independent living – specifically the right to choose one’s living arrangements). Article 16 CRPD is also relevant as it relates to protection, and historically deprivation of legal capacity and guardianship regimes have been thought of as protective regimes (see, e.g. the Hague Convention on the International Protection of Adults).  The CRPD challenges us to think about protection in a very different way, although (frustratingly) I can find very little (published) work being done on this at present.



Way back in 2008 the Irish government published a heads of bill called the Draft Mental Capacity Bill 2008. To all intents and purposes it looked a lot like the Mental Capacity Act 2005 (MCA) of England and Wales (less the deprivation of liberty safeguards). Unlike the MCA, which was broadly welcomed in England and Wales,  the Irish Bill met with a lot of opposition from (interestingly enough) the analogous groups to those who were calling for the MCA only a few years beforehand in England. The basis for their objections was the CRPD... You can read their Essential Principles for legal capacity law reform here. The Oireachas then heard evidence on the draft Bill and produced a report in which it broadly endorsed the principles of the CRPD (albeit it hedged its bets somewhat around the position taken by the CRPD Committee) and described the ‘best interests’ approach adopted in the draft bill (and the MCA) as ‘paternalistic’ and outdated.

That was last year, and since that time we’ve all been wondering what the government would come up with. Questions abounded – would it retain a best interests standard? A functional approach to capacity (with a diagnostic threshold)? Would it include deprivation of liberty safeguards? Would it reform the Irish Criminal Law (Sexual Offences) Act 1993 in relation to sex ‘with a person who is mentally impaired’? What provision would it make for supported decision making? Would it still retain something that looked like guardianship? Will it provide for advance decisions refusing medical treatment? Will it retain the old ward of court system?  Does it have any snazzy new court procedures?

After having read all 109 pages of the new Bill I can tell you that the answer to those questions are (in order): not in name; yes (and no); no (if you want to read my initial thoughts on detention under the Bill, they’re here); no; it’s complicated; yes; it will do when the Department of Health insert them at the Committee stage later on; it’s being gradually phased out; and yes - but I'm not going to talk about them today.

First impressions

First impressions? The Bill is very, very interesting. It is also drafted in some of the most convoluted legal language I have ever encountered (if you want a giggle, check out s33 which defines a ‘wardship court’), which makes it hard to extract from it what is going on in certain places.  The continued retention of the functional approach as a gateway to what are termed, under the Bill, ‘interventions’, will no doubt raise suspicions that these are substituted decisions by another name.  You can read my colleague Eilionóir Flynn’s commentary on the retention of a functional approach here.*   Section 3 contains the functional test of capacity which looks like it was lifted from the MCA verbatim, only taking out the anti-discrimination provisions of s2 MCA and the diagnostic threshold (s2(1) MCA). At first sight, the removal of the diagnostic threshold looks like the removal of an explicitly discriminatory element of ‘functional’ approaches, but I’m not sure campaigners should celebrate too readily...  Firstly, the functional test will still indirectly pick out more people with mental impairments than without, and secondly if what the CRPD Committee is worried about is ‘substituted decisions’ then shouldn’t they be worried about them applying to potentially even more people? Quite possibly more people with physical impairments or frailty...  

Section 8 of the Bill sets out the ‘guiding principles’ and it looks a lot like a mash up of the principles of s1 of the MCA and s4 MCA (the best interests standard). However, there are some important differences from the MCA. In particular, even where a person ‘lacks capacity’ under s3 ADM, the principles guiding interventions put much greater emphasis on a person’s will and preferences than the ‘objective standard’ of s4 MCA:
The intervener, in making an intervention in respect of a relevant person, shall—
(a) permit, encourage and facilitate, in so far as is practicable, the relevant person to participate, or to improve his or her ability to participate, as fully as possible, in the intervention,
(b) give effect, in so far as is practicable, to the past and present will and preferences of the relevant person, in so far as that will and those preferences are reasonably ascertainable
Contrast this with the interpretation of the role of a person’s will and preferences under the MCA’s ‘best interests’ standard in ITW v Z & Ors (2009), amongst other cases, which emphasises that they are only one factor amongst many. The eagle eyed among you may also notice that whereas the MCA’s guiding principles only require the least restrictive option to be considered, under the Irish Bill ‘there shall be no intervention... unless it is necessary to do so’ and ‘An intervention... shall... be made in a manner that minimises ...the restriction of the relevant person’s rights, and ... the restriction of the relevant person’s freedom of action, and... have due regard to the need to respect the right of the relevant person to his or her dignity, bodily integrity, privacy and autonomy’ (my emphases). Ha – take that MCA! But, still, interveners must only give effect to a person’s will and preferences ‘in so far as is practicable’ – everything will turn on how this is cashed out in the code of practice and subsequent case law. We will watch and wait with interest.

[Quick aside: Oddly, the language of acting in a person’s ‘interests’ seems to have been retained (accidentally?) in the duties of an Attorney acting under an Enduring Power of Attorney (s40(4)(d)) and grounds to remove a ‘Decision-Making Representative’ (s23(10), I’ll explain that role in a minute). It is unclear how the inclusion of 'interests' in this list of duties and obligations alters, or adds to, the obligation to act in accordance with the guiding principles of the Act.]

But it is the Bill’s new mechanisms to support people whose capacity is, or will shortly be, in question that are particularly interesting (and which people in England and Wales who think the MCA does provide for supported decision making should pay attention to). I say ‘interesting’ in the most qualified of terms, because there are question marks over some elements of these provisions, but I still think these mechanisms have potential. The devil, as always, will lurk in the detail. To help you get your head around this section I’ve prepared a nerdy spreadsheet which has the different roles set against various issues relating to how they are created, the safeguards and restrictions they operate under and the relevant sections of statute. This spreadsheet is my excuse for not citing reams of statute in the discussion that follows...

New mechanisms for supported and substituted decision making

So, the Bill basically creates six mechanisms for assisting a person to make a decision or making one on their behalf:
1. Assisted Decision Making (ADM)
2. Co-Decision Making (CDM)
3. Decision Making Representatives (DMRs)
4. Enduring Powers of Attorney (EPA)
5. Decision Making Orders by the High Court or the Circuit Court
6. Informal Decision Makers (IDMs).
I’m not going to talk in much detail about EPAs, because they aren’t that newfangled (although there are some differences in registration and supervision between the Irish approach and the MCA approach which people might like to take a look at). Neither am I going to talk about the Court’s powers to make decisions. Instead, I want to talk about two mechanisms which could more or less be construed as supported decision making – ADMs and CDMs, and two mechanisms which really cannot be – DMRs and IDMs.

'Supportive' mechanisms

A person whose capacity is, or shortly will be, called into question, can made an ‘Assisted Decision Making Agreement’ to appoint an assistant to help them make decisions. Now, the Bill doesn’t explicitly state this, but I think that you can only make one of these agreements if you have ‘mental capacity’ – which means it sets a much higher bar for use than comparable frameworks like Representation Agreements in British Columbia.  It will be interesting to see if the code (or case law) provides any guidance on what the capacity to make an agreement like this looks like. Anyway, the role of an assistant is pretty cool, they must: a) advise the RP by explaining relevant information and considerations for a decision; b) ascertain the will and preferences of RP on matters related to the DMAA; c) assist RP to obtain relevant information to decision; d) assist the RP to make and express a relevant decision; e) endeavour to ensure RP's decisions are implemented. The attractions of this approach over the MCA’s measly ‘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’ (s1(3) MCA) are manifold. Firstly, the MCA’s ‘support’ provisions are in the passive voice – who is supposed to help ‘P’ make the decision? Does it have to be the person staging the intervention? What if that person doesn’t have a great relationship with ‘P’, or doesn’t have the skills to help ‘P’ to understand or to communicate? Here, a person can choose somebody they like and trust, who they feel can help them to understand information and help them to communicate, to support them in decisions. And that person, moreover, is bound to see that those decisions are implemented.  Furthermore, I could see ADM offering the friends and family of people with disabilities a major advantage over what can happen under the MCA: they have a right to access to the relevant information to support a person to make a decision.  In England and Wales (as the House of Lords has been hearing, blog post to follow shortly), patient confidentiality can prove to be a major difficulty for friends and family seeking to support a person in making decisions, as they may not be able to access the relevant records.

Some interesting questions arise about the validity of the outcome of these assisted decisions. Does the relevant person still need to demonstrate ‘mental capacity’ (only with support) to make the relevant decision?  Would banks, for example, accept an assisted decision if it is the assistant communicating its outcome not the person themselves?  If the answer to that is ‘yes’, then some really interesting questions arise about what the assessment of capacity would look like if it is recognised that a person needs assistance from a specified individual to understand information and to communicate their decision. Are we looking at capacity assessments where assessors are essentially assessing a person’s understanding and communication as it is distributed across a relationship? I have many, many, concerns about functional capacity,* but I have to say, if I was having my capacity be assessed, I’d much rather this took place where the people who ordinarily help me to make difficult decisions are in the room with me. If you look at the kinds of critiques of capacity assessment by Mark Neary on his blog (here and here), you can imagine that an approach which recognises personal knowledge of how a person understands and communicates (as opposed to 'professional' knowledge) is more desirable than one which does not.

Moving on, the bill also provides for ‘co decision making’, which I believe is an idea which comes from the Canadian provinces of Alberta and Saskatchewan. CDM is also a measure which can only be entered into with the consent of the relevant person. They can choose a friend or family member to be the co decision-maker, and make a co-decision making agreement. This agreement is only valid if it is subject to a court order, and it can only be terminated with a court order. Co decision making works by requiring that both parties agree to any decision specified by the agreement, and any relevant document requiring a signature is signed by both the relevant person and the CDM. The CDM can’t make any decision about the relevant person which they object to (unlike a DMR, which I’ll talk about below), but likewise, the relevant person needs the CDM’s agreement to make a decision. In effect, they both have a power of veto over decisions concerning the relevant person’s life. However, CDM’s can’t exercise their power of veto however they like, they must acquiesce to the relevant person’s decision wherever the following conditions are met:
(a) a reasonable person could have made that relevant decision; and
(b) no harm to the appointer or any other person is likely to result from that relevant decision.
So with CDM the Bill has basically snuck in a ‘reasonable person’ and ‘no harm’ criterion for interventions by the back door, not as a gateway to a substituted decision, but as a gateway to a substituted refusal.

Why would anybody make an agreement like this, you may ask. Well, I can imagine some people who might, for a number of reasons. Firstly, people who need quite a bit of support with managing their affairs, but who want to exercise some control over what their supporters do through.  This mechanism requires the CDM to consult with the person and seek their consent on any measure.  Secondly, people who consider that their ability to make good decisions fluctuates, or they are prone to impulsive decisions which they later regret, may think that requiring a person whose judgment they trust to sign off on any decisions, would be desirable. Or, alternatively, they might think it is more desirable than having the court appoint a DMR who have full substituted decision making powers... So this is consent, and this could be a form of consent that a person positively welcomes, but like many forms of consent in the shadow of more coercive measures it might be offered simply in preference over the alternatives.

Where there is disagreement between a person and their CDM, an application to the court can be made to terminate the agreement. At first sight I thought this was merely to provide a ‘brake’, a cooling off period, to prevent a person from dismantling a CDM wherever they wished to make the kind of decision which they might later regret (which could be why they made the agreement in the first place). However, having read the Bill closely, I don’t think the court is obliged to dismantle the CDM agreement if the person asks them to, except where they have ‘capacity’. Having said that, the Court is required to have regard to whether the relationship has broken down in deciding whether to terminate the agreement, but that still suggests to me that a person could end up in one of these agreements long term when they would prefer not to be.

Another potential concern with both ADM and CDM is that they restrict the number of people who can be appointed as an assistant or co decision maker for a particular kind of decision to one. I’m not quite sure what the point of these restriction are. For ADM, it strikes me that it places a heavy burden on that relationship if only one person is supposed to assist you in making a decision – what if they are unavailable and a decision needs to be made? And what of the status of decisions made without that person, but where another has offered support? For CDM, I think there are also attractions of having more than one person authorised as a co decision maker. In the first place, again, problems could arise where a co decision maker simply isn’t available but a decision needs to be made. Secondly, ‘reasonableness’ is a fairly subjective standard, and if one co-decision maker does not consider a decision ‘reasonable’ and does not acquiesce, another person might. In those circumstances, we can either leave a person open to the (perhaps idiosyncratic) judgment of a single CDM, or we can temper it by offering an alternative CDM who may take a different view as to ‘reasonableness’. I can see why there might be issues if the assistants or CDMs disagree, but likewise so might attorneys under EPAs or DMRs, who can make substituted decisions, and you can appoint multiples (singly or jointly) for any given decision.

One last issue for ADM and CDM is what happens when a person has no naturally occurring support networks. There does not appear to be much in the Bill to help people in such circumstances to develop such supports. The Bill does not provide, for example, for independent advocates, who might also be well placed to offer the kinds of support envisioned under ADM (and perhaps also CDM, if the relationship worked well). It seems, the only option for these people may be DMRs...

'Substituted' decision makers

The Bill also provides, as I mentioned, for something called a ‘Decision Making Representative’ (DMR). I’ll make no bones about this – these are, to all intents and purposes, guardians. They are analogous to deputies under the MCA. They are bound, as ‘intervenors’, to follow the guiding principles of the Bill, but at the end of the day they can be appointed (by a court) to a person without their consent. The relevant person exercises no explicit statutory control over who is selected as a DMR (unlike ADM or CDM), and unlike CDM’s a DMR can be a person who is effectively a stranger to the person (from a panel, appointed by the Public Guardian). There is nothing to place limits on how many people the DMR may represent, nor how often they must meet with the person. There is nothing in the Bill which is as attentive to the quality of the relationship between a DMR and the person they represent as there is for ADM and CDM. This stands in contrast with regimes in countries including France, Greece and Hungary where people can choose their own guardian.  A report published this month by the European Union Agency for Fundamental Rights stressed how important the quality of the relationship between a person their guardian is - but this Bill doesn't appear to be attentive to this issue.   They (like CDMs) do have to report to the Public Guardian on their activities. And their appointment is subject to much more frequent period reviews by a court than guardians in other jurisdictions (including England and Wales) often are. So there are more stringent safeguards than in many other guardianship regimes. But, still, this is likely to be a major sticking point for the CRPD Committee and disability activists.

More alarming, in my view, is the role of Informal Decision Makers (IDMs). This provision is buried at the back of the Bill (ss53-54), and it more or less mirrors the ‘general defence’ under ss5-6 MCA. In effect, a person can make an ‘intervention’ (substituted decisions) relating to personal welfare without any formal agreements, any authority being vested in them by the court, without any monitoring arrangements or formal findings of incapacity. It is precisely this kind of informal decision making which constitutes the vast majority of acts under the MCA in England and Wales, and doubtless these acts are already happening on a de facto basis in Ireland at present. There are some statutory restrictions on this authority (which roughly mirror the common law situation in England and Wales) – IDMs cannot make decisions about non-therapeutic sterilisation, about withdrawal of life sustaining treatment or organ donation (I suspect the powers that be felt it wasn’t worth even mentioning abortion in this Bill if they wanted it to get through the Oireachtas). But included in the powers of IDMs, presumably, are other decisions about serious medical treatments (including those the person objects to), decisions about admissions to residential care services (including, again, where the person or their family objects to this), and the kinds of decisions that are increasingly arising in England and Wales around contact with third parties, sexual relationships, the use of restraint and seclusion and so on. Moreover (as I’ve argued in my commentary on detention), I suspect that given the rulings in cases like Stanev v Bulgaria, in many cases the decisions made by IDMs (and DMRs) will result in de facto detention, even if they are explicitly precluded from making decisions which result in a deprivation of liberty.

In England and Wales, the scarily broad and intrusive powers of informal decision makers were supposed to be held in check by Independent Mental Capacity Advocates (IMCAs).  As a House of Lords Select Committee has been hearing, IMCAs are very popular in England and Wales (although I’ve written elsewhere about why I have some concerns about how effectively they are helping people to challenge decisions which they oppose). However, in this Bill there is no provision for advocacy. There is no provision for scrutiny of any kind over the decisions made by IDMs. It is not clear how easily people affected by these decisions, or their families, will be able to challenge the authority this vests in health and social care professionals.  The duty to consult with families or named persons by ‘interveners’ is much weaker under s8 of the Irish Bill than s4 MCA – it simply says that they ‘may’, not that they must.  Why, from a disability rights perspective, is it concerning that family and friends might not be consulted?  Well, the reality is that in the absence of provision for advocacy, and in a context where 'incapacity' may strike unexpectedly in emergency situations, this really gives practitioners carte blanche to make decisions without including the only people who realistically might stand up for what the person themselves would want.  By sidelining families and friends, the Bill will make it very hard for them to challenge decision makers on behalf of those subject to interventions.  We already see this under the MCA in England and Wales, and I suspect the problems will be worse under this Bill because the duty to consult others is so weak.  It strikes me that this little section buried at the back of the Bill should be the one giving the most cause for concern. Not only from the CRPD perspective of it permitting substituted decisions, but also because it seems to me to contain a real paucity of safeguards which would be required not only by Article 12(4) CRPD but also Articles 5, 6, 8 of the European Convention on Human Rights.

So, the Assisted Decision-Making (Capacity) Bill, a bit of a mixed bag. I recently compared it to going to a jumble sale. Things aren’t necessarily laid out in the easiest and clearest way. There are some objects which evoke a real sense of nostalgia – not necessarily positive. There are other objects that look shiny and new. Some older items have been polished up for resale.  And there are some, like an obscure kitchen appliance, which we are not quite sure what to do with. A lot will turn on what amendments can be pushed through at the Committee stages (let’s hope they don’t get bogged down in Advance Care Directives, like the MCA did), who is appointed as the Public Guardian, the drafting of the Code, its interpretation by the courts, and – of course – its implementation on the ground. Interesting times.

*My thoughts on the functional approach, for what it's worth, is that it's a discursive device which we use to secure some outcomes which we might want to hang on to (like protecting people from exploitation or acting in emergencies) and a lot of things which scare the pants off me.  As discursive devices go, it's one which hands a whole load of power to what Foucault called 'disciplinary professionals' (and creates a nice lucrative industry around capacity assessment).  As a gatekeeper to interventions, it doesn't come free - the assessment of capacity involves prying into very personal matters, often by strangers or assessors a person may not trust or like.  It tends to place the burden of understanding and communicating on the assessed, not the assessor.  It is based on the (false) premise that most decisions are rational and that we can give adequate explanations for why we made decisions in a particular way.  I agree with the many clever commentators who point out that 'mental capacity' is not value neutral at all, nor can it be, and it obfuscates what is essentially a value judgment about what outcomes we are prepared to tolerate.  Some people manage to escape from its clutches by demonstrating that they can present a convincing case for decision that others don't like - but this will tend only to benefit the articulate, and will place people who are less articulate in the position of struggling to justify choices that anybody else could make.  That is to say, it is almost impossible to avoid indirect discriminatory effects for people with impairments which affect their communication and discursive skills.

I'm not saying I have an alternative framework all worked out for the hard cases. But hard cases don't prove that 'functional capacity' can overcome these concerns, they just mean that we've got a lot of deep (and sometimes painful) thinking to do.

1 comment:

  1. Ireland has been operating with a 19th century ward of court system in relation to legal capacity (amongst other statutory and common law provisions), and had committed itself to reforming this system before it ratified the UN CRPD. Employment Law Onlookers (like myself) watched with interest as constructing legal capacity legislation which complies with the CRPD is no mean feat - it is doubtful that any state has managed it and many states (such as the UK and Australia) are actively contemplating its implications.

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