Patient-Centred Care

I've just been scanning that article (the first link in my original post here) and it includes this:

'The process by which the optimal decision may be reached for a patient at a fateful health crossroads is called shared decision making and involves, at minimum, a clinician and the patient, although other members of the health care team or friends and family members may be invited to participate. In shared decision making, both parties share information: the clinician offers options and describes their risks and benefits, and the patient expresses his or her preferences and values. Each participant is thus armed with a better understanding of the relevant factors and shares responsibility in the decision about how to proceed.'

Now, this is precisely the problem - you cannot have any resolution of a disagreement, if your 'model' is:

'In shared decision making, both parties share information: the clinician offers options and describes their risks and benefits, and the patient expresses his or her preferences and values'

Ideally, you discuss things, and then an agreement about how to move forwards emerges. But - and this is HUGELY IMPORTANT - this 'shared decision-making' concept, as expressed above, is not present in English Law either for mentally-capable patients, or for mentally-incapable adults.

For mentally-capable adults, the thing our law describes (in section 3(1) of the Mental Capacity Act) is the following:

'the clinician offers options and describes their risks and benefits, and the patient expresses his or her decision'

When patients are mentally-incapable, and have not made and expressed the necessary decision in advance, our law seems to require a lot of 'discussion between clinicians and family/friends of the patient', but it doesn't then go on to explain how disagreements can be resolved without applying for a court ruling (the law sometimes gives authority over the decisions, to suitably-empowered Welfare Attorneys or Court Deputies; and the law gives a legal defence to anybody who satisfies section 4(9) of the MCA; and it imposes a legal duty on everyone involved to comply with section 4 of the Act).

It seems obvious to me, that our law has settled on this model of 'the clinicians provide information to the patient, then the patient considers things and expresses his or her decision' precisely because it is an impossibility to describe 'shared decision-making' within a law: you need either a defined decision-maker (which in our law is the patient alone) or else a defined 'voting mechanism' for disagreements.

I would add, that the paper suggests this model of 'shared decision-making' originated in the late 1980s, when there was a very 'muddled situation' within English law, and when it might not have been possible to 'refute' shared decision-making by arguing from our law. But that isn't true, since the MCA was enacted - the situation now, is that the law is very clear, and it describes 'Informed Consent' and NOT 'shared decision-making'.

See my piece:

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

It also follows, from our law, that everything before the patient makes and expresses the decision, is simply part of the process which leads to the patient's decision. So, some 'possibly common assumptions' would be incorrect.

For example, it is wrong to assume that a patient goes to see a GP, 'so that the patient's medical problem can be treated'. The patient goes to the GP, because of a medical problem which might be treatable - the GP describes the treatment(s) on offer, and the outcomes with and without treatment, and the patient considers these things and only then (after the GP has provided that information) does the patient decide whether or not to be treated.

This would also be true of calling 999 - even though you call 999 'during an emergency', it isn't 'unequivocal' that you have 'consented to being treated at the time you called': your decision as to whether or not to consent, is made after 999 have turned up, and you can ask them questions.

It is definitely true, in my opinion, that the patient autonomy now firmly enshrined in our law, presents challenges for clinicians who are also expected to apply 'evidence-based interventions', especially in a 'target-orientated culture':

http://www.bmj.com/content/353/bmj.i2452/rr-16

Thoughtful and challenging as ever Mike (not a criticism) but I wonder how does one go about "sharing decision making" without at least starting with "the clinician offers options and describes their risks and benefits, and the patient expresses his or her decision" as you describe?

If we start from the premise that the patient knows themselves best, and the clinician knows their area of expertise best (the basis for shared decision making, one would assume) is there a better way to go about having these conversations?

This isn't a rhetorical question; you've got me thinking!

On reading Patient centred care as a Nursing Home Manager and the mother of a 13yr old child who for reasons too complicated to discuss here declined a heart transplant I had to put my two pennyworth in.
Shared decisions is all wrong it has to be the service user who makes their own decision they should not feel pressured to have to take any other persons thoughts into consideration If they are deemed to have mental capacity (a whole other discussion) (and who are the professionals who consider they have the mental capacity to decide this anyway). We as professionals should give them the benefit of what we know and then wait for them to think and make a decision or not as they choose.I have yet to think of a better phrase than person centred but there has to be one.

Hi Wendy and Kirsty,

I'm short of time at present, so I might come back to this later.

But I'll start with Wendy's comment. What you described, with 'how else could you do it ?', isn't what the people who use this phrase 'shared decision-making' mean by it - what you described, is 'informed consent' as described in section 3(1) of the MCA. Except, it isn't a case of 'by starting with' - that is the process, and the patient's expressed decision is the end (unless the clinician can provide some further information for the patient to consider).

As I wrote above: 'our law describes clinicians informing patients, and then the patients making the decisions'.

What upsets many clinicians, and probably a lot of other people, is that the patient is allowed to make 'self-destructive' decisions: it isn't relevant how many other people think the patient's decision was 'weird, inexplicable and 'stupid'', patients are legally entitled to do that (operationally, this is hugely challenging for some professionals - but, the law is a) clear on the point, and b) it isn't easy how the law could be written differently without being incredibly 'muddled' {it was muddled, for decades - now, thankfully, 'tidied up'}).

I do start from your:

'If we start from the premise that the patient knows themselves best, and the clinician knows their area of expertise best (the basis for shared decision making, one would assume) is there a better way to go about having these conversations?'

So do most current judges. But not all current clinicians.

I will need to come back to this later, as I'm running out of the time needed to hunt down the necessary links for me to keep this short by my own standards !

Quick comment to Kirsty - yes I agree 'Shared decisions is all wrong it has to be the service user who makes their own decision' although it gets much more complicated as soon as you consider children as opposed to adults (which is why I write about adults).

Thanks to both of you, for contributing - this definitely needs 'thrashing out' so that public and professionals are not 'at loggerheads' about the meaning of the law.

And, I'd be delighted if either or both of you, wanted to write something about this (or about anything else relevant) on my Facebook group page [which is about end-of-life, in theory].

I posted a 3-page PDF on my Facebook group a couple of days ago, called 'MCA as I understand it corrected'.

I wrote it, as part of some discussions I'm having with the SCIE's MCA chap, and he had suggested that my understanding of the MCA is 'quite sophisticated'. The first 2 sentences in my PDF were:

'Sometimes, when I'm discussing the Mental Capacity Act, people tell me that 'your understanding of the MCA is 'in depth'' - other people tell me I understand nothing.

But if I understand anything about the MCA, it is that 'there is hardly anything there to understand' - put another way, the Act 'tells us very little', and provided you understand that, then you in essence 'understand the Act, full stop'.'

The title of my piece, was:

'It isn't understanding the MCA that is problematic: the problem
is fitting what the MCA says, to the 'job requirements' of
professionals'

What I argued, was that the MCA - in other words, English and Welsh Law - is only 'crystal clear' about the decision-making autonomy of mentally-capable adults, and it also 'assumes that people are mentally capable'. I argued that the only thing we really know about the law when people are not mentally capable is that 'The [best-interests] decision very much involves 'the patient as an individual' in the sense that the patient's 'thinking, beliefs, world-view, etc' are a required 'input' to the decision-making' and 'It isn't explained how 'the patient's individuality' is to affect the final decision - but we know that somehow, without the 'patient's individuality being determinative', this 'individuality' can mean that a decision which would result in the patient's death can
sometimes be a legitimate one (i.e. compliant with section 4)'.

So, I then concluded:

COMMENT: that is all we know, about 'best interests' - it isn't much (to remember, or to analyse), it isn't at all clear [unlike the patient autonomy described for capable patients] but this 'act in the person's best interests' duty applies to everyone supporting an incapable person: it applies to clinicians and 'family carers'. Logically, as the legal duty
applies to family carers, and as perfectly normal 'off-the-street laymen' can be appointed as Welfare Attorneys [and once appointed 'control best-interests decision-making'], this 'best-interests' concept must be understandable by an average adult. That implies 'that it must be possible to explain the 'best interests' part of the MCA 'in simple language, which normal people would understand'' - I keep trying to do that [which is more than I can say, for many authors !] but I fear it eludes me.

I then moved on to argue that 'where it all gets complicated' is 'The issue doesn't seem to be the Act - it seems to be the way that the MCA does not easily fit with various 'professional objectives/requirements/mindsets''.

After flicking through some of those issues, I ended my piece with:

'That is pretty-much my 'understanding' of the MCA - not only is it concise, but I cannot 'understand it in more detail' because the bits I've not covered above (excepting DoLS - DoLS would need a book to itself) cannot be described in much more detail. I don't really see the above as 'sophisticated' so much as 'as clear as it is possible to be'.'

I sent my PDF to a consultant, and he came back with:

'With regard to the content, I am inclined to "there is a lot to understand - if there wasn't then we wouldn't have this controversy".'

And he ended his e-mail with:

'Anyway, I think there is plenty of nuance to understand which is why we end up with court rulings in test cases'.

But I can't find any 'nuance' in the MCA - I just see things which are virtually impossible for professionals 'to live with'.

For example, patients are either mentally-capable or else they are mentally-incapable: they cannot be, for any particular decision at any given time, 'capable-ish'. That isn't 'nuanced' it is a clear distinction between capable and incapable - and if capable, the patient makes the decision. PROVING INCAPACITY is a different thing - it can be hugely challenging, to 'prove' incapacity if it isn't very obvious: but there isn't 'nuance' there.

My consultant also wrote:

'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'

This is also challenging for clinicians - but it isn't 'what the law actually says'. The law says:

If the patient is mentally capable, the doctor provides information, and then the patient decides: the patient's 'beliefs and reasoning' are none of the doctor's concern. Those things - the 'patient's beliefs while he is mentally capable' are things a best-interests decision-maker is required to understand as a result of section 4(6) of the MCA - but I can't see where the patient WHILE CAPABLE HAS TO EXPLAIN THEM TO ANYONE ! Even the MCA's 'projection of decisions forwards into capacity' does NOT require the patient to explain 'why I decided' - it merely requires (see the rules in sections 24-26 for Advance Decisions) the patient to be clear about what intervention he is refusing.

I've written about this 'the patient need not explain his reasons' - and how awkward that is for doctors - in my piece at:

http://www.bmj.com/content/351/bmj.h6575/rr-0

The presumption of mental capacity, combined with 'patients can make unwise decisions', is 'very much a challenge' for clinicians.

Suppose a 30 yr-old man turns up at A&E, and says 'I'm committing suicide, but it turns out that the process is more painful than I anticipated - I would like some pain-relief, while I'm dying'. That of itself doesn't prove the patient lacks mental capacity, but if the doctors give the guy the requested pain relief, and let him die in A&E, 'you can imagine the possible furore when his family turn up the next day'. But Court of Protection judges have confirmed this - Justice Sir Mark Hedley explained to a newspaper that when he was the COP out-of-hours judge, he had a call from an A&E along those lines, talked to the patient, decided he seemed mentally capable, and effectively told the doctors 'you have to let him die, if he is refusing to be treated for his overdose':

http://www.bmj.com/content/350/bmj.h2883/rr-2

It isn't 'nuance' inside the MCA - it is the clash between the MCA, and the 'working lives' of professionals, which is so problematic and difficult !

The patient must be the center of care, but while considering only patients decision, it is quiet difficult to make the process.