Mike Stone Retired Non Clinical Private Individual Michael H Stone
I was recently reflecting on how the UK Mental Capacity Act (MCA) has changed the way we approach decision making. I say ‘we’, as a bereaved family member, and you can read more about the events that changed my life– events that included 999 staff and my dead mother, events that I found unacceptable, events that struck me, amongst other things, as ‘at least in part a training issue’. As a ‘lay NHS campaigner’, I continue to try to prod those who work in health and social care into different ways of thinking.
In a Journal of Medical Ethics paper I contributed to,
which was about decision-making for cardiopulmonary resuscitation (CPR) but more generally about any treatment, and what the Mental Capacity Act tells us about decision making, I included the sentence ‘Put simply, the clinicians are the experts in the clinical aspects, and the family and friends are the experts in ‘the patient as an individual’.
That sentence should be a good starting point, for anyone who is involved in discussions about what would be in a patient/loved-one’s ‘MCA Best Interests’.
When I say MCA Best interests, I mean Best Interests as defined by the Mental Capacity Act. I don’t know who, legally, first came up with the idea of calling it ‘Best Interests’, a term that to the unknowing individual can mean just about anything. Doctors and nurses, typically write – to my great annoyance! – as though ‘doctors make the best-interests decision, and family and friends (‘those close to the patient’) only contribute to the decision-making of clinicians’. That isn’t true legally – the issue is the ‘only’. That ‘only’ will often be true, but it isn’t necessarily correct.
We should regard these conversations about MCA best interests, as involving TWO DIFFERENT TYPES OF EXPERT in conversation with each other: the clinicians are experts in the clinical situation, what treatments are available, and prognoses, and the family and friends are experts in ‘the patient as an individual who had views on all sorts of things in life’. The objective of the conversations is to apply section 4 of the MCA in order to arrive at properly-considered best-interests determinations. That necessarily involves a third type of ‘expertise or understanding’, which is an adequate understanding of the MCA: a LEGAL understanding, which is neither the type of expertise specific to the clinicians, nor the type of expertise specific to ‘those close to the patient’.
We have, when thought of in this way, two different groups of experts, the knowledge and understanding of both groups being necessary to properly achieve an objective which requires a third type of understanding (an understanding of the MCA) – and, that third type of understanding is not an understanding which is necessarily solely possessed by either group of experts.
Viewed in this light, those close family and friends who DO UNDERSTAND the MCA, should RIGHTLY take offence if clinicians say ‘you need to understand, that your role is only to inform our decision-making’.
In my opinion, it is high time for this to be reflected within the thinking of clinicians, and within clinically-authored guidance and protocols: that ‘those close to patients’ should be regarded as experts.
As we also suggested in the JME paper:
‘The guidance and the training should emphasise the teamwork which Mike Stone mentions above: the default assumption should be that clinicians and relatives have a shared goal of what is best for the patient, and work together as ‘us and us’ as opposed to ‘us and them’.’