An Open Letter to the Law Commission MCA/DoLS Consultation

An Open Letter to the Law Commission MCA/DoLS Consultation

I am in the process of sending some comments to the Law Commission Consultation about the Mental Capacity Act and the Deprivation of Liberty Safeguards (Consultation Paper No 222). The consultation is mainly about DoLS, but it also asks a few questions about the MCA in a wider context, and it also (as is usual for consultations) proposes specific 'solutions' and asks for views about those.

There are some issues I see with the MCA, which do not 'fit neatly' into the 'format' of the consultation, but as the Consultation 'seems to want to look at issues in the round', I have decided to post an open letter to the Consultation here, and to point the Law Commission at it in an e-mail.

The House of Lords Select Committee on the Mental Capacity Act 2005 (Report of Session 2013-14 - published 13 March 2014) did draw attention to something which I think would, if it came to pass, very rapidly 'force a change in understanding of' the MCA:

53. As with other aspects of the Mental Capacity Act, low levels of awareness have affected implementation of the provisions relating to Lasting Powers of Attorney. Awareness needs to be raised among the general public of the benefits of Lasting Powers of Attorney in order to encourage greater take-up, especially for Health and Welfare matters. We support the initiatives of the Public Guardian to improve take-up by simplifying the forms and reducing the cost of registration, as well as identifying other barriers to take-up. (paragraph 191)

54. Recommendation 25: We recommend that the Government, working with the independent oversight body recommended in chapter 4, and the Office of the Public Guardian:

address the poor levels of understanding of LPAs among
professional groups, especially in the health and social care sector,
paying specific attention to the status of Lasting Powers of
Attorney in decision-making;

(two recommendations missed out here, then)

consider how attorneys and deputies faced with non-compliance by
public bodies or private companies can be supported in the
absence of specific sanctions;

IF ALL DYING PATIENTS HAD A WELFARE ATTORNEY, the current levels of misunderstanding, and misinterpretation, of the MCA simply 'could not stand' - it is only the relative absence of attorneys, which allows professionals to misinterpret the Act.

So ULTIMATELY MORE WELFARE ATTORNEYS is the ideal solution to the 'wider issues around best-interests'.

If there were more attorneys, it seems to me that even when there was not an attorney, the professionals would understand that section 4(6) of the Act, means what it says - and if all persons who were making section 4 best-interests decisions, applied the Act properly, there would arguably be no need for IMCAs, or for the creation of 'Supporters' as proposed in chapter 12 of the Consultation.

The 'supporter' is described like this;

Provisional proposal 12-1: a new legal process should be established under which a person can appoint a supporter in order to assist them with decision-making.

To me - and I have never paid much attention to IMCAs - this looks rather similar to the role of an IMCA, except that the patient can appoint a 'Supporter'. The Act already instructs people who are making decisions, to try and help the patient to make the decision - so, presumably, this isn't happening enough at the moment.

In the absence of greatly-increased numbers of Welfare Attorneys, then provided the appointment is fast and simple, I strongly support this 'Supporter' concept: even if there were more welfare attorneys, there are still strong arguments for the supporter idea provided the appointment is quick and easy, and under the patient's control.

There are very significant 'mindset issues' which impinge on how different people interpret things such as the MCA and DoLS, and how people 'think in general'. For example, I wrote near the end of one BMJ piece:

http://www.bmj.com/content/350/bmj.h2877/rr

'At the moment, the NHS seems to be putting its faith in record-keeping for end-of-life at home, whereas I argue that the solution involves properly accepting that family carers are a full part of the patient's support team [and are potentially more up-to-date than any of the recorded information]: the 'system' also prefers decisions which come from the GP, whereas from my position [as a former relative] I prefer decisions which come from the patient.'

My preference for decisions which come from the patient, and have been expressed to anyone 'supporting the patient' (be that a live-with relative, a nurse or the GP), is I suspect a position which many of the laymen involved in end-of-life would share with me: whereas 'the system' only seems to significantly value 'whatever the GP, or a senior nurse, has formally recorded somewhere'. I value 'understanding of the situation' and 'the system/professionals' seem to be obsessed with 'records and process'. Often, in operation, Chalk and Cheese !

There are currently electronic information storing and sharing systems (EPaCCS) being developed for end-of-life, and those systems could well make this problem worse: unless EPaCCS either confines itself to things which cannot change (medical history, blood groups, etc) or it is made clear that EPaCCS can potentially be more out-of-date about patient-expressed decisions than a family carer, there is a serious potential problem.

In overall terms, I have no real problem with the part of the MCA which usually applies to my area of concern (which does not really include DoLS), but I have serious issues with the way that many or even most professionals, INTERPRET the Act. It is truly surprising, how often senior medics will tell me that 'the MCA says' and then point at an extract from the MCA's Code of Practice, and not from the Act itself - and ONLY the Act (and NOT the Code), applies to family carers [unless the family carer is either a welfare attorney or a court deputy]. Add in to this 'the professionals do not seem to read the Act, and instead seem to read either the Code or lower-level guidance', the fact that clinicians are strongly motivated 'by a desire to do good' (so they think in terms of ethics, and not in legal terms), and also I suspect that some professionals are strongly influenced by interpretations of 'safeguarding' which in practice thwart patient self-determination, and my issues are not really with the MCA itself.

Much of this, hinges on issues of 'trust' - and the professionals seem to have very asymmetric views, about 'trust':

http://www.bmj.com/content/350/bmj.h3181/rr

http://www.bmj.com/content/350/bmj.h3181/rr-2

Ultimately, I believe that decent end-of-life care and behaviour requires co-operation between the laymen supporting the patient and the professionals who are involved, and for laymen and professionals to 'thrash out their differences' and to arrive at compromises which represent a 'balanced position' when all perspectives are sensibly weighted. We are some considerable distance away from that, at the moment.

There is also a complication, quite apart from the interactions between mental capacity and mental health, which needs to be recognised. The MCA sets out to cover all types of mental incapacity: from a patient who is anaesthetised during an operation, through people who are demented to just sufficient a degree as to lack the mental capacity to autonomously make a decision, all of the way to a comatose person. In principle, the MCA sets out the 'rules' and they cover all of these situations (although stable coma cases, tend to be referred to a court for a ruling): but even setting aside 'mental disorder', the problems the MCA poses are very different.

Because of my experience when my mother died at home, I 'instinctively' tend to be thinking of dying people, who are mentally capable until they perhaps lose mental capacity as they near death. The problem here, is that because it is so difficult to talk about 'death', it is very difficult to get the decisions from the patient: and, for patients who are at home, if the patient does decide to explain a decision, there could very possibly only be a relative present to explain it to. So the problems hinge on things like 'communication and the communication chain' and 'who trusts whom'.

But THE SOLUTION is obvious - really, really, try to GET THE DECISION IN ADVANCE OF INCAPACITY FROM THE PATIENT. Then, tell everyone supporting the patient, what the patient had decided, and simply 'follow the patient's own decision'.

In other words - DO YOUR LEVEL BEST TO AVOID MCA BEST INTERESTS DECISION MAKING.

It turns out, that most of the clinicians who are 'using' the MCA in their day-to-day work, are either involved with mental illness (which I am not discussing here) or are working with dementia patients. And although dementia is now often described as a terminal illness, most dementia patients are not end-of-life (in the way that EoL is normally used - within the final year of life). So decisions which the patient had not made in advance - which will tend to be most decisions, for long-term dementia - have to be made, and that means that MCA best interests has to be 'faced'.

These clinicians, are faced with the problem of 'HOW MUCH ARE THE WISHES OF AN INCAPABLE PERSON THE DETERMINING FACTOR, DURING BEST INTERESTS DECISION MAKING ?'.

The MCA does not answer this question - and the 'use a balance sheet' suggestion is no answer either ! - and, as was always obvious to me, this is significantly more complex, than 'normal EoL'.

The Law Commission Consultation touches on this issue, by pointing at section 4(6)(a):

4(6) He must consider, so far as is reasonably ascertainable-
(a) the person's past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),

I have always tended to think of this, in terms of 'the patient has now almost totally lost capacity, but using our knowledge of how the patient 'thought' when he was mentally capable, we should 'work out what he would decide now, if somehow he could decide now''.

But if you work with dementia patients, the issue is how do the 'current wishes and feelings of the incapable patient' affect decision making ?

I asked someone who works for the Alzheimer's society this question - how do you think of section 4(6)(a) - recently, and she sent me this:

********************

Hi Mike

That's a very interesting, but difficult question to answer and I need to ponder on it a while before I can give a considered response, but here are a few preliminary thoughts:

People with very firm wishes and preferences in their lives before symptoms of dementia appear - which could be based on what they feel is expected of them by family/ society/ religion etc...- can sometimes relax or completely reject those beliefs, preferences and wishes as their dementia progresses. This can be seen, for example (though admittedly, not the same issue), in relation to people establishing new personal relationships with others in care homes and losing their attachments to their spouses.

Identity questions are central to the rights of people with dementia, and holding onto a core identity is one of the hardest things for someone as their symptoms progress. In which case, those involved in establishing their best interests should include representatives of those who have cared for them along their dementia 'journey' and who have gained some insight into their wishes past and present.

Sorry, must close here as I've got a visit.

***********************

She is talking about, something I have commented on in the past, when writing about the MCA.

There are two 'extremes' which you can imagine, if you consider how a 'mind' might lose mental capacity.

One idea, is that the person's 'mind' becomes less 'analytically capable' but in essence the person's 'personality' (which I think equates to 'core identity' in the e-mail) remains untouched: the process 'involves the creation of a diminished version of the original mind', but in essence 'the person remains the same'.

The other extreme, is that along with the mind becoming less analytically capable, the 'personality' changes: in essence, the mentally incapable person, is 'an entirely new person'.

The e-mail above, is talking about this 'creation of new people'.

I normally discuss the issue, in the context of written Advance Decisions (if a 'very grumpy and negative, but mentally capable, person', creates an advance decision refusing attempted CPR if he arrests for any reason at all, and then has a car crash which damages his brain, and he recovers to be a mentally incapable person, who is seemingly 'away with the fairies, but really enjoying life', is the ADRT invalid because 'the incapable person is not simply a diminished version of the original capable person' ?).

It is MUCH MORE DIFFICULT to work out 'what the MCA is saying', if 'mental incapacity is accompanied by personality changes' alongside a reduction in the ability to 'retain and consider information' (which is, in essence, the requirement for mental capacity).

So, it isn't just 'better and clearer law, and new things such as 'Supporters'' which is necessary, for the MCA/DoLS to 'work much better' - it also needs a LOT OF WORK on things such as aligning the mindsets and understanding of laymen and various professionals, which will require EVERYONE TO START TALKING TO EACH OTHER:

http://www.bmj.com/content/350/bmj.h1846/rr

There are also some very 'odd' - it seems - interpretations of the law, out there.

Not only is there an absurd but widely-held belief that 'a face-to-face verbal refusal of a life-sustaining treatment is not 'legally binding' EVEN DURING ONGOING CONTACT', but this appears in the Consultation:

12.46 Currently, the Mental Capacity Act does not expressly indicate whether the resent or past wishes and feelings of a person are to be given greater priority.
However, it has been held that both the previously expressed wishes of the person, as well as the hypothetical wishes and feelings that they would express if they were able, must be considered.42 This gives rise to a potentially difficult question where these diverge. Although this issue has not yet been determined by courts, other parts of the Mental Capacity Act do give a preference to present
wishes. For instance, advance decisions cannot be acted upon where the person has subsequently done anything clearly inconsistent with the advance decision (although the Act is silent on what doing something inconsistent means).43 As a result, it has been argued that a preference for present wishes should also apply when weighing preferences for the purposes of a best interest decision.44 We consider that a similar approach should be adopted for the purposes of the best interests checklist. However, we think this matter could be left to guidance.

'For instance, advance decisions cannot be acted upon where the person has subsequently done anything clearly inconsistent with the advance decision' CANNOT logically mean 'where a mentally-incapable person does something inconsistent with the advance decision', because an Advance Decision serves the purpose of replacing a contemporaneous decision from a capable person. An ADRT has no effect while the patient is still mentally capable, and can still consent to or refuse an offered treatment - if the suggestion is that after having lost mental capacity, a then mentally-incapable patient could retract the ADRT 'by doing something inconsistent with it', it would logically follow that the patient's ability to consent or refuse continues into incapacity (an obvious paradox).

The 'retraction by actions' stems from this section of the MCA:

25(2) An advance decision is not valid if P-

(a) has withdrawn the decision at a time when he had capacity to do so,

(b) has, under a lasting power of attorney created after the advance decision was made, conferred authority on the donee (or, if more than one, any of them) to give or refuse consent to the treatment to which the advance decision relates, or

(c) has done anything else clearly inconsistent with the advance decision remaining his fixed decision.

It makes no sense at all, to interpret 25(2)(c) in any way other than as referring to a retraction of an Advance Decision made during capacity, but 'by action instead of direct expression': to believe that an ADRT can be retracted in any way at all, during mental incapacity, makes the ADRT pointless.

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