Mike’s Cheeky Blog: the Mental Capacity Act, inevitable unknowns and ‘safeguarding’.

mike stone 21/06/18 Dignity Champions forum

I came across and read, a Welsh policy about cardiopulmonary resuscitation (CPR) a while ago, and I posted a question about the policy on Twitter:

https://twitter.com/MikeStone2_EoL/status/985135260278165504

In essence, my problem is that the Welsh CPR policy contains the concept of DNACPR Forms in Wales ‘becoming active only when a doctor signs the form’ - whereas an Advance Decision refusing CPR (ADRT) becomes ‘legally binding’ as soon as it has been signed by the patient and witnessed [witnessed by anyone – not by ‘the senior clinician’, just witnessed by someone].

So I constructed a scenario within which a terminally-diagnosed patient, has got a pre-prepared ADRT refusing CPR when he is visited by a district nurse – the patient tells the nurse ‘I’ve decided to forbid attempted CPR from now onwards – here is my written Advance Decision, I’m going to sign it, these two relatives of mine are going to witness it, and I want you to witness it as well’.

It seems to me, that the Welsh policy allows the nurse to also complete a Welsh DNACPR Form at this point – however, the nurse cannot ‘activate’ the DNACPR Form.

So, when the patient and his relatives ask the nurse ‘will my ADRT succeed in preventing the 999 services from attempting CPR?’, it seems to me that the nurse cannot honestly answer ‘yes’. If the nurse does say ‘you can’t be certain that your ADRT will stop 999 paramedics from attempting CPR’, and the patient then says ‘so – if my relatives think my heart has stopped beating, is it okay with the NHS for them to not call anyone until I’m dead, because I definitely do not want CPR to be attempted?’, then I also believe that an honest nurse would have to answer ‘no - ‘the NHS’ wouldn’t be happy, if your relatives waited until you were dead before they phoned someone, if you collapsed and they thought you had arrested’.

A doctor sent me an e-mail answering the questions I posed in my tweet (the two questions I have just described). The first thing the doctor did – which seems to be quite common, in my own experience of discussing this type of scenario with doctors – was to change it to a different clinical situation:

‘It would be appropriate to involve relatives/carers, to explain what to do in the event of sudden collapse, including how to ensure comfort while dying, and what to do if they think the person has died. This would include explaining that there is nothing sudden or urgent to be done.’

As I pointed in in my e-mail response:

‘In my tweet, I didn't say the patient was 'dying phase' - I said 'terminally diagnosed'. He just doesn't want CPR to be attempted - if it happened that he arrested because he accidentally electrocuted himself, he still wouldn't want CPR attempting, so it isn't 'no CPR because he has arrested at the very-end of life', it is 'he has refused CPR'.

The patient's relatives know that if the patient arrests for any reason at all, the patient doesn't want CPR to be attempted: but if the patient collapses, the family might not be certain that the patient's heart has stopped beating, so they would need to involve 999. He isn't refusing treatment for a non-fatal stroke which makes him collapse, for example: he is just saying 'if my heart has stopped and I'll be dead within minutes, leave me to die'.

So my issue is still - the policy implies that it is the signature of a senior clinician on the DNACPR Form that 'is authoritative' [and hence would be 'respected by 999'] rather than the ADRT forbidding CPR as being the crucial document to be respected by 999 and everyone else.’

The doctor sent back:

‘The difficulty with your proposal is that there is no way of anyone knowing whether an ADRT refusing CPR was planted on the person by another – think of the case of Victoria Cilliers. He husband certainly didn’t want her resuscitated!

If a person has a ADRT refusing CPR, then he or she can go to the GP, complete the DNACPR form at any time and keep it on his or her person.

I’m afraid not all families are loving; you only have at look at the data on elder abuse – and that is the abuse we know about.’

Now, this response – which many or most doctors seem to believe is ‘reasonable’ - raises/d my hackles: I sent back a ‘distinctly annoyed’ e-mail, but because I have not been online since I sent that, I’m writing this without knowing how the doctor responded to my e-mail, and my e-mail included:

‘Yes - but IT ISN’T POSSIBLE for a family-carer 'to prove honesty' - and this is at the heart of my objections to the way that clinicians interpret the MCA.’

The MCA starts from enshrining in law, the right of a mentally-capable person to refuse any medical intervention. There is not an issue with the mental capacity of the patient in my scenario. As I also pointed out in my e-mail:

‘Although in my scenario, the patient was considerate enough (and legally that isn't required for an ADRT) to wait to complete his ADRT when one of his supporting clinicians was available to be one of its witnesses - I made that person a nurse, because she CANNOT 'using the Welsh CPR Policy’s rules' 'activate' the DNACPR form. But, the nurse can listen - she can ask 'is this ADRT supposed to forbid CPR under all circumstances?’ - she can check that the ADRT is valid. So she 'does know' - she, and the family members who are also present [and who also witness the ADRT] know there wasn't any 'planting' going on.’

There is nothing unclear to me, about the role of relatives during this type of end-of-life situation – what relatives should be doing is in essence:

1) Trying to get clinicians to provide treatments which their terminally-diagnosed loved-one wants, and

2) Trying to prevent clinicians from intervening (applying a treatment) if they know their loved-one would have refused the intervention, but isn’t able to refuse directly (such as when their loved-one has collapsed).

The doctor was 100% LOGICALLY CORRECT with ‘there is no way of anyone knowing [what happens when you are not present]’ - but SUCH A LACK OF CERTAINTY IS INEVITABLE if patients are at home, their relatives are present but the professionals are not in the home.

GETTING FROM ‘we have no way of being sure of that’ to ‘so we are not going to believe what the relative WHO WAS PRESENT tells us’ is from my perspective OFFENSIVE and UNREASONABLE.

Some police officers take bribes – but that doesn’t result in all police officers being permanently suspended on suspicion of having taken a bribe, does it? There should be some actual evidence of wrong-doing, before accusations of dishonesty and nefariousness are made/implied against the family-carers of end-of-life patients.

This amounts to the same issue which I explored with my ‘Father and Son’ question in a survey I sent out some years ago:

https://www.dignityincare.org.uk/Discuss-and-debate/download/298/

It is legally perverse to assert that the non-legally-binding (but signed by a GP) DNACPR Form, which in this situation can only exist if the patient is forbidding CPR, is the document which will prevent attempted CPR, instead of the ADRT refusing CPR which is legally-binding and which the patient can decide to create or retract at any time of the patient’s choosing: it is PATIENT AUTONOMY which the MCA ‘is supposed to be safeguarding’, it ISN’T ‘making things easier for the professionals’ that is the purpose of the MCA.

As I also pointed out in my e-mail to the doctor:

The solution to this might be for patients to all appoint their family-carer/s as Welfare Attorneys, and for the welfare attorneys to respond to any complaints from HCPs and the 999 Services with what amounts to ‘tough if you aren’t happy with the decision I made – I made the decision in the patient’s best-interests, which is why I was appointed as an attorney: you seem to be unfamiliar with sections 6(6) and 6(7) of the MCA’ - but I don't see it as being a step forwards, if because of an attitude among HCPs of 'we will not trust your family', patients and families are forced to resort to this.

We – relatives and clinicians – should be WORKING TOGETHER to support dying patients: you CANNOT DO THAT if you start from clinicians and family-carers distrusting each other.

Which isn’t to say that I don’t want people to be keeping an eye open for ‘bad behaviour’ - as I wrote in my Core Care Team material:

‘Now, I am of course not suggesting that there are not some ‘nefarious relatives’: I am simply stating, that without adequately open communication good EoL behaviour tends to become impossible to consistently achieve, because communication and confusion are inversely correlated. Everyone should be ‘keeping an eye on everyone else’, but it is a bit rich for the professions which produced Shipman, Mid Staffs, Winterbourne View, and Hillsborough, to try and claim the moral high ground for themselves !’

On the lay side, often ‘dying patients' will be in no fit state to keep an eye on the behaviour of anyone – so it would be family-carers who were keeping their eyes open. And on the professional side, what matters the most is the level of ongoing interaction: so probably nurses [who tend to attend the home more often than the GP] are the better-placed to ‘keep an eye open’.