Clinicians and Relatives, Consensus, Uncertainty, Emergency and Trust: a continuation from a Journal of Medical Ethics paper

I have attached a PDF which contains an e-mail I sent to some coroners, and some of their more helpful replies, after I had been talking to a Paramedic at a Coventry University Open Day - as I stated in my e-mail:

'I was recently talking to a Paramedic at a Coventry University open day. It was a brief conversation, during which he said what amounts to 'I would never accept a relative's word that the patient wouldn't want CPR - I would always [if it appeared that CPR might be clinically successful] attempt CPR unless there was documentation'. He also said, that he believed he would be in trouble with the Coventry Coroner, if he did believe the word of a relative.'

So, I asked the coroners 'are coroners effectively telling 999 paramedics, that paramedics should not believe what relatives say to them?'.

To quote the clearest reply from a coroner - and this was fairly-obviously true, but I wasn't confident that a coroner would state it for me:

'It is not within the coroner’s remit to advise paramedics how they should approach their professional practice'.

Put simply, it isn't within the remit or authority of a coroner to 'order 999 paramedics to distrust family-carers and relatives'.

In the Journal of Medical Ethics paper I contributed to,

https://jme.bmj.com/content/early/2020/12/02/medethics-2020-106490

which was narrowly about the 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.

Doctors and nurses, typically write - to my great annoyance! - as if '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 true.

We should regard these conversations about 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'. 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: that 'those close to the 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’.'

PS In fact there is a typo in the paper - it says 'teawork' instead of 'teamwork'. I quite like that typo - perhaps there should be 'teawork' involved during the teamwork!

The above post in this thread, has now - slightly modified - also appeared as a blog in BMJ SPC at:

https://blogs.bmj.com/spcare/2024/02/01/best-interests-a-term-that-covers-many-concepts/

I was listening to Martha's [Rule] mum on Radio 4 (ca 2:10 into the Today programme) this morning. And guess what - she also used 'expert'.

I've just transcribed what she said at ca 2:12 into the programme:

'Safe healthcare is threefold, it's the clinician's view, the doctor's view, the expert view, it's the data what the numbers are telling you, the blood tests, the temperature and blood pressure that kind of thing, and it's the patient or family voice, they are another expert in the room ...'.

This - part of an e-mail I've recently sent to a 999 Paramedic and a Consultant Palliative Care Doctor - is why I'm keen for relatives and family-carers to be thought of, and treated like, experts during End-of-Life-at-Home in particular.

If you are talking to an expert, in a situation [such as during a cardiac arrest] when ‘there is no time’, you might ask a question (here, the question would be ‘Do you know if your dad would want CPR?’) but you DO NOT then ask the expert ‘Why do you believe that?’.

So, going looking at the start of MCA section 4, we read:

'He must consider, so far as is reasonably ascertainable-'

The question is: is something ‘ascertained’ if you’ve got an answer from an expert?

I’m DEEPLY unhappy, that while I would have been told by a parent ‘I don’t want CPR’ and that clearly DOESN'T mean ‘I don’t want CPR, but I’m happy for 999 paramedics to start CPR while you try to persuade them to stop’ – it means ‘I don’t want CPR to be started’ – 999 Paramedics start from the ‘attempt CPR until persuaded that CPR is wrong’ position.

I hate currently being forced into telling family-carers, that ‘you might not be able to trust 999’, and if it were accepted that ‘family-carers/relatives’ are experts, then that might offer a way out of this impasse: but I would need to see this 'within guidance and protocols' - it isn't enough for some individual paramedics to say 'I would usually believe relatives'.

The alternative is the impasse which I've been writing about for a while now - which amounts to 'If 999 Paramedics are unwilling to accept the word of family-carers, then family-carers need to be aware that 'you can't necessarily trust 999 - so in some situations (such as my Father & Son scenario) you need to think hard before you call 999' - and as I've said before, I HATE having to tell relatives that 999 Paramedics are likely to distrust them.

My social worker friend, said that she tells social workers that if they arrive at a best-interests conclusion which the family all subsequently disagree with, the social workers should think ‘Have I missed something?’ and have another look at the issue. There isn’t time to ‘have another look’ during a cardiopulmonary arrest, but if a 999 paramedic starts CPR and a family-carer forcefully says ‘Stop – he wouldn’t want that!’ then if we regard the family-carer as an expert, we can argue that ‘it has been ‘reasonably ascertained’ that the patient didn’t want CPR’. The family-carer shouting at you to not attempt CPR, surely must raise in the paramedic’s mind that ‘Have I missed something?’ (although perhaps better expressed as ‘Does the relative know more than I do?’). ‘Not PROVEN: but surely it is, without clear evidence to the contrary, REASONABLE to believe what family-carers are telling you.