My reasons are my own - it is entirely up to me, whether or not I decide to share them

mike stone 17/06/16 Dignity Champions forum

Apologies for my recent flurry of posts - I want to point the doctor I mentioned in it, at the footnote to this piece: and, I see this analysis as of enough importance, that it does warrant being online where it can be pointed at.

There is something deeply embedded within the Mental Capacity Act, and it is that people are either mentally capable, or mentally incapable, for any particular decision at any given time. SEPARATION - 'one or the other'.

There is also a separation, between 'the rules' for the decision-making in those two situations: and 'it seems a bit weird', as I will explain, when you describe, and then think about, these rules. It becomes even 'weirder', if you describe the conclusions which many clinicians draw, when 'faced with' these rules: at least, the way many professionals 'respond to' this 'weirdness', seems flawed to me.

The rules for mentally-capable patients, are simple: if the patient is mentally capable, the clinicians INFORM the patient, and then the patient MAKES AND EXPRESSES his/her decision.

Mr Justice Jackson explained this very clearly, as is described at:

http://www.telegraph.co.uk/news/uknews/law-and-order/10653650/Schizophrenic-with-a-gangrenous-leg-allowed-to-refuse-amputation.html

The judge said (selected relevant extracts from the article):

'"Anyone capable of making decisions has an absolute right to accept or refuse medical treatment, regardless of the wisdom or consequences of the decision.
The decision does not have to be justified to anyone. In the absence of consent, any invasion of the body will be a criminal assault.
The fact that the intervention is well-meaning or therapeutic makes no difference.
The right to decide whether or not to consent to medical treatment is one of the most important rights guaranteed by law.
The temptation to base a judgment of a person's capacity upon whether they seem to have made a good or bad decision, and in particular upon whether they have accepted or rejected medical advice, is absolutely to be avoided.
That would be to put the cart before the horse or, to put it another way, to allow the tail of welfare to wag the dog of capacity."'

It does logically follow, that what Mr Justice Jackson is saying about 'cart and horse' - 'The temptation to base a judgment of a person's capacity upon whether they seem to have made a good or bad decision, and in particular upon whether they have accepted or rejected medical advice, is absolutely to be avoided' - means that somehow any assessement of mental capacity must be carried out BEFORE any discussion of the actual decision is embarked on. I argued this from 'first principles' in my piece at:

http://www.bmj.com/content/352/bmj.i222/rr-0

Where I wrote: 'The MCA describes two situations: either a patient is mentally capable [with respect to the particular decision], in which case the patient considers clinical information provided by his clinicians, and then the patient makes and expresses a decision; or, the patient is not mentally-capable, and somebody else makes a best-interests decision. In both cases, as is logically obvious from that separation, the question of capacity has to be settled before the process moves on to the consideration of the decision.'

For mentally-capable patients, there is no doubt that the patient's 'individuality' is determinative in the patient's 'processing' of the decision: the patient's beliefs, whether the patient is 'analytical' or 'intuitive', religious or secular, etc, will be the reason why faced with the same decision, one patient decides differently from another.

But there is nothing in these rules - which you can call Patient Autonomy, Informed Consent or Considered Refusal - which inherently requires the patient to explain why he decided as he did: this framework, only requires that the patient expresses his decision clearly. If anyone doubts this, the easiest 'proof' is to look at the rules for Advance Decisions in the MCA - the requirement is, quoting directly from the Act (section 24(1)):

'... in such circumstances as he may specify, a specified treatment is proposed to be carried out or continued by a person providing health care for him'

It doesn't require any explanation of the reasons for the refusal of the treatment.

IT IS DIFFERENT if the patient is not mentally capable, and has not already made and expressed the decision - now, somebody has to make a 'best interests' decision. And we now 'hit the paradox' head on.

Anybody who is making a best-interests decision, is asked to base the decision on the things described in section 4(6) of the MCA:

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),
(b) the beliefs and values that would be likely to influence his decision if he had capacity, and
(c) the other factors that he would be likely to consider if he were able to do so.

That is very obviously, describing the 'patient's individuality' - it is describing those ' beliefs, whether the patient is 'analytical' or 'intuitive', religious or secular, etc' which control the patient's own decision-making, but which THE PATIENT IS UNDER NO OBLIGATION TO EXPLAIN WHEN HE IS THE DECISION-MAKER.

So, how does a best-interests decision-maker satisfy section 4(6) - and to be clear, section 4(6) is the most important part of the 'rules' for best-interests decision-making - when faced with this paradox ?

What Mr Justice Hayden did, was to ask the family and friends of the patient, in his description at:

http://www.bailii.org/ew/cases/EWCOP/2014/4.html

'I am left in no doubt at all that TH would wish to determine what remains of his life in his own way not least because that is the strategy he has always both expressed and adopted. I have no doubt that he would wish to leave the hospital and go to the home of his ex-wife and his mate's Spud and end his days quietly there and with dignity as he sees it. Privacy, personal autonomy and dignity have not only been features of TH's life, they have been the creed by which he has lived it. He may not have prepared a document that complies
with the criteria of section 24, giving advance directions to refuse treatment but he has in so many oblique and tangential ways over so many years communicated his views so uncompromisingly and indeed bluntly that none of his friends are left in any doubt what he would want in his present situation.'

Mr Justice Hayden 'got a bit stuck' at that point (a different, and more complex issue - I've written about it, and I'll shortly explain my preferred method of avoiding the problem which Mr Justice Hayden was wrestling with) but, he asked the patient's clinicians to describe the clinical situation, and he asked the patient's family and friends 'what would the patient want to happen, in this situation'.

Doctors, seem to think the solution to this issue, is to get patients while still mentally-capable to 'explain their 'wishes and preferences'' - a somewhat deluded approach, because you could instead try and get the DECISION ITSELF from the patient while the patient is still mentally capable. I won't repeat that argument in depth here, because I made myself 'forcefully clear' in my piece 'I believe that Advance Decisions should be encouraged but that 'advance statements' should be discouraged' at:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=814&forumID=45

The fundamental problem - why I don't like 'advance statements' or these recently re-named 'Emergency Care and Treatment Plans' (and the draft ECTP simply did not properly fit the MCA - I have doubts that the replacement will, either) - is this:

'Clinicians and administrators seem to be wedded to the idea that decisions about the provision of treatment eventually devolve to the clinicians, whereas judges are increasingly stressing that the individuality of the patient sits above the clinical situation of the patient. So 'the system' has gone well beyond any concept within our law which could be described as 'an advance statement' and is now creating guidance which encourages end-of-life patients, while still mentally capable, to 'express your wishes via 'advance statements''.

The implication, is that by reading a few documents, clinicians such as 999 paramedics could somehow 'come to understand a patient, in the way that the patient's close family and close friends understand the patient': this is absurd, and the guidance should instead stress 'ask the people who do know the patient as an individual, and believe what they tell you', and 'verbally explain to the clinicians and family carers who are supporting you in an ongoing way, your probable wishes for the future'.'

BY THE WAY - I reproduced section 4(6) of the MCA above: the MCA does not mention these 'advance statements' which so many senior clinicians seem keen on (written statements which the clinicians ASK the patient to write), instead it only mentions 'the person's past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity)'.

TO RECAP: we have a law, which requires best-interests decision-makers to understand something ('how the patient thinks' - more accurately 'how the patient thought') once the patient has become mentally incapable, which the patient was not under any obligation to explain while he was mentally capable: and the people who are by far the best-qualified to understand those things, are the patient's close family and friends, and definitely NOT the patient's clinicians - the idea that the clinicians are the best-qualified people to make 'best-interests decisions' is, therefore, 'a logical absurdity' !

FOOTNOTE

While discussing this general issue with a consultant doctor, he sent me a list which included these:

1. The legal test of capacity is that it is decision specific and can only be judged in relation to that decision and at that time. So my decision about whether to consent to an amputation, or to go back to my home and accept risk or to drink ordinary fluids despite a high risk of choking and pneumonia, must all be judged individually

2. That legal test (as you clearly understand) involves understanding, believing, weighing information and expressing a decision

3. So whilst you are correct to say that the law unequivocally says a decision is valid however unwise a professional or other 3rd party may think it to be, it IS important in some cases to ascertain the reasoning because this in turn tells us can the person understand, believe and weigh the information

The way the consultant expresses his list, to me implies that he doesn't grasp that while the patient is still mentally capable those factors in 2) remain as private as the patient wishes to keep them - in other words, that 3) isn't straightforward (if the patient decides to 'explain his reasoning', then his clinicians [or family carers, as it happens] might 'use the explanation to question the patient's mental capacity' - so it is probably wiser to only express your decisions to your clinicians, and to not mention 'how I decided') and is a misunderstanding of the MCA's description in section 3(1)(c) of how a mentally-capable patient reaches his decision:

3(1) For the purposes of section 2, a person is unable to make a decision for himself if he is unable-
(a) to understand the information relevant to the decision,
(b) to retain that information,
(c) to use or weigh that information as part of the process of making the decision, or
(d) to communicate his decision (whether by talking, using sign language or any other means).

Section 3(1) is a description, of 'the logical concept of informed consent combined with the logical description of a 'functioning mind'' - it ISN'T a description of how you might ASSESS mental capacity.

Does this 'make working life difficult for working doctors and nurses ?' - oh yes, it ABSOLUTELY makes things very challenging for clinicians, if you accept the MCA 'as it is written' !

There is a 'tie-breaker' (again, often very much a challenge for working clinicians) - if you are unable to 'assess capacity', then the patient IS MENTALLY CAPABLE:

1(2) A person must be assumed to have capacity unless it is established that he lacks capacity.


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Suzie Lloyd 11/01/17

I have, for a long time, been frustrated by what, in my opinion, is the misinterpretation of this Act. My experiences leave no room for confusion other than to consider that the Act is frequently misused for convenience, in ignorance or, by indifference. Specifically I have had my doubts about, firstly, the reliability of the Assessor's ability to assess 'Capacity', secondly, the nuanced political pressures within their frame-work and, thirdly, the influences of their personal persuasions. Of course this is distinct from the circumstances when the Decision-maker is part of a Best-Interests group, but, most certainly, within my sphere of practice, Assessment can appear to be an unacceptably casual process.

My further frustrations are born of the 'Unwise decision' section of the MCA to which, in principle,I fully subscribe; after all, there are unwise decisions being made constantly by people in every walk of life. However this point in the MCA should hold true if, and only if, the consequences of those unwise decisions impact solely upon the person making the unwise decision.

The unwanted, or negative, consequences of the unwise decision made by 'the person in the street', when impacting upon third parties, can be dealt with swiftly by those third parties. Unfortunately this is not necessarily the case when a person whom is in the Care system, but whom has been 'poorly' assessed as having 'Capacity', makes an unwise decision.

Along with other 'tangles in the web' this aspect of the MCA requires substantive qualification.

Suzie Lloyd

mike stone 12/01/17

Hi Suzie,

I'm not sure if you are aware of it, but Baroness Finlay's 'MCA Implementation Group' has now (it started just before Christmas - so far, about 80 people have registered) got a new web-facility which hopes to get some online discussion of the MCA up-and-running, within a 'dedicated forum'. There isn't much discussion on that forum so far, something I hope will change - to date, I find only limited debate about the MCA, for example on the BMJ:

http://www.bmj.com/content/356/bmj.j15/rapid-responses

I think you will be able to join the new MCAF discussion forum from either of the following links, if you would like to join it:

http://nmcforum.ning.com/main/invitation/new

http://nmcforum.ning.com/