Are 999 Paramedics or Family Carers the better-placed to make best-interests decisions during end-of-life?
Twitter decided that I was a robot yesterday, and ‘blocked my account’. It asked me to give it a mobile phone number – can’t do that, because I don’t have a mobile phone. I joined Twitter by giving it an e-mail address. To be fair, Twitter sent an e-mail to the e-mail address – however the e-mail ‘was crackers’ because the e-mail asked me for a mobile phone number!
So I’m not very happy with Twitter, at the moment.
But, since Saturday a ‘Twitter conversation about decision-making and the Mental Capacity Act’ has been going on, and one person told me that my views are not in line with the consensus medical-ethical or medical-legal positions.
Now, I know my views are not in line with currently prevailing ‘medical-ethical’ opinion. What I’m not at all sure, is whether the prevailing lay opinion – of end-of-life patients and their relatives and family carers – is in line with my views. I'm not even sure how you could determine 'the consensus lay position' – we patients and family carers 'are in a state of comparative isolation compared to the clinicians'.
As for ‘the legal consensus’ - well, there was a recent launch of something called ReSPECT. It purports to be an attempt to improve ‘decision-making during ‘clinical emergencies’’ and I dislike it: I object to it because it has, to my eyes, and in-built ‘the clinicians make the decisions’ assumption. I read the law, and I see a different assumption – loosely ‘do what the patient would have wanted you to do’.
There are a series of ‘rapid responses’ to the article promoting ReSPECT in the BMJ, at:
http://www.bmj.com/content/356/bmj.j876/rapid-responses
Rapid responses are comments to either the article, or else comments to other responses: and you can 'like' responses. I analysed the number of likes some time ago, and it turns out that you can't really deduce much from the number of 'likes' a response attracts. However, if we make the dubious assumption that 'the number of likes indicates to an extent if BMJ readers agree with the response's position', it is interesting to see whether it appears that 'my legal position' is being questioned by BMJ readers. These are the numbers of 'likes' at ca 9-15 am 2nd June:
RESPONSE No of 'LIKES'
Me 10 March 180
Me (apology for getting David 182
Pitchers name wrong in previous
response) also 10 March
Toni Wolff (Consultant Neurodisability 148
Paediatrician) 12 March
Me 13 March 180
Me 15 March 155
Alex Ruck Keene (Barrister who 146
gave legal advice to the ReSPECT
team)
15 March
Me 16 March 155
David Pitcher and Juliet Spiller 132
(the leaders for ReSPECT)
19 March
Me 22 March 165
Most of those are in fact argument and counter-argument, about whether or not 'ReSPECT' correctly addresses English [and Welsh] law (the MCA) and fits with 'logic': my position is that it doesn't, obviously the authors of ReSPECT claim that it does. But it isn't clear that my position is 'disliked' any more than that of the ReSPECT team, going by the numbers of likes.
I would add, that Mr Justice Charles has recently ruled in the Briggs case by using an argument identical to one I published here on Dignity in Care several years ago – the reasoning of Mr Justice Charles seems to have 'shocked' some clinicians and lawyers, but I had already published exactly that reasoning. See my comments about the case at:
http://www.bmj.com/content/355/bmj.i6829/rr
http://www.bmj.com/content/355/bmj.i6829/rr-0
Moving on from the question of where my analysis of the law stands in comparison to the recent decisions of Judges, we were discussing on Twitter a question that amounts to 'who is best-placed to decide what should happen in the patient's best-interests, if a family carer phones 999 because a known terminally-diagnosed patient has collapsed: is the 999 paramedic or the family carer, the person who can best consider 'what should happen next'?'
I'll simplify this to start with: I'm going to restrict this, to the paramedic determines that the patient is in cardiopulmonary arrest, as opposed to 'simply collapsed'.
I'm doing that, because the outcomes are clear for a patient in CPA: no CPR and the patient will die, compared to 'CPR might restore life, but nobody can really say how clinically healthy the patient will be post 'successful' CPR – all you can say is 'the best possible outcome is no worse than the patient was before the CPA''.
Traditionally – and to a significant degree currently – the 999 approach has amounted to 'attempting CPR by default'. That is in fact, 'behaviour based on ignorance – ignorance of any understanding of 'how the patient would have decided, if he could decide and tell us his decision while he is in cardiac arrest (in CPA)'. ReSPECT is by its very existence, an acceptance that this 'default behaviour' is less satisfactory than some sort of decision-making during the CPA, which does involve 'patient individuality'. What the law implies for the family carer who called, is that because the family carer has been involved with the terminal patient in an on-going way, the family carer should be making a section-4 MCA best-interests decision during the CPA – and best-interests decisions are based on UNDERSTANDING.
So it seems unquestionable that best-interests decision-making during the arrest, is superior in both legal and logical terms to 'default CPR based on 'ignorance''. It is also clear, that the 999 paramedic is the person who cannot defensibly consider the complexity of section 4 of the MCA, whereas the family carer who called 999 probably could.
It was put to me on Twitter just before Twitter decided I'm a robot 'are you suggesting that the paramedic should not be in the decision-making loop at all ?' and that takes a while to answer. I'll answer it in a further addition to this piece, but all I'm saying is that 'paramedics cannot 'defensibly make best-interests decisions' but family carers probably can – AND CRUCIALLY that best-interests decision-making is better than 'uninformed default CPR'. Developing 'where that conclusion leads to' involves a consideration of section 4 of the MCA, which is best done in my further addition.
I see that DiC removed my formatting on posting - in the first piece, those numbers above 100 are the number of likes to the response(s).
The question, is the one at the end of my piece at:
http://www.bmj.com/content/356/bmj.j876/rr-7
(hypothetical)
I have been sharing a home with my now ‘dying partner’ for 20 years, although my partner has only been ‘dying’ for about six months. I have talked to my partner a lot during this six months, and during those 20 years. The GP has talked to my partner a little, especially recently. We both talk to the district nurses who have visited a couple of times a week for the last 6 weeks – but they are often different nurses each visit.
My partner has just collapsed. I have called 999 to find out why my partner has collapsed. I am now standing over a 999 paramedic, who is doing something to my unconscious partner. Why on earth, should I accept that this paramedic decides what happens next ?
QUESTION ENDS
Our law - so far as I can see - starts with patient autonomy: in this situation, it would be patient autonomy 'projected into incapacity' [because 'collapsed' means 'can't tell us' in my scenario - definitely true if the paramedic concludes that the collapsed person is in CPA].
Put simply, 'if you are as certain as it is possible to be in real-world terms, that the patient would refuse treatment in this situation, then you should not apply the treatment'. Here, the collapsed patient might have made it expressly clear that 'I never want CPR to be attempted'. He might have done that months ago, and never expressed a change of mind - or he might have done that just a few hours before he actually did collapse. The point is:
'I have talked to my partner a lot during this six months, and during those 20 years. The GP has talked to my partner a little, especially recently. We both talk to the district nurses who have visited a couple of times a week for the last 6 weeks – but they are often different nurses each visit.'
The person most available to listen to and understand the patient's decisions, is the family carer - 999 paramedics are not even on the list.
Following a decision as I've just described, is not making a best-interests decision. However, if the family carer 'feels acceptably certain that the patient would not want CPR in the situation', an opinion formed from those ongoing if 'somewhat tangential' conversations, and the patient's overall behaviour, then the family carer could defensibly consider that CPR would not be in the patient's best interests. See the reference to the Mr Justice Hayden ruling in my piece at:
'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.'
Again, the family carer can make a claim to have an understanding of those things - but a 999 paramedic cannot.
We know that normal lay people are perfectly capable of making satisfactory best-interests decisions: otherwise they could not be appointed as Welfare Attorneys with the powers over best-interests decision-making given by section 6(6) of the MCA.
However, if nobody has 'control of best-interests' as given by 6(6), the MCA itself only seems to require that a best-interests decision-maker can 'defensibly make the decision - which amounts to claiming to have complied with section 4'. Almost all healthcare professionals seem to think that best-interests involves 'identifying a specific decision-maker' but the Act only ever gives authority to certain decision-makers (via 6(6) and 6(7)) and imposes a general duty on all decision-makers (compliance with 4(9)). There is NOT a decision-maker with 'legal authority' in my scenario of a family carer and a 999 paramedic - ONLY 'can you reasonably claim to have complied with section 4?' applies.
As I've tried to explain above, the family carer can very probably claim to have complied with section 4, but the 999 paramedic cannot (reading a few documents during a CPA, is definitely not enough to claim to have 'properly considered section 4(6) of the MCA) because section 4(6) of the MCA is complex:
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.
I see this as a question of logic and attitude - the logic is that the family carer should be 'up-to-date' on those factors in 4(6) [in particular, up-to-date in terms of listening to the patient's expressed decisions] and that IF WE REMOVE a prevailing 'attitude' that 'family carers can be 'distrusted by default', then it looks as if 'the best-available best-interests decision would be achieved by the paramedic informing the family carer of the clinical situation and prognosis, and then asking the family carer 'do you feel sure you know what he would want us to do?'.
However, this requires an acceptance that the 999 paramedic cannot make best-interests decisions. The paramedic must be guided. And my position is that:
If there is only a single family carer, and the family carer says 'don't try CPR', then CPR should not be attempted;
If there are several family carers, and they all say 'don't try CPR', then CPR should not be attempted;
If there are several family carers, then if even a single one of them says 'I'm sure he would want you to try CPR' I believe that the paramedic should attempt CPR, even if several other family carers say 'don't try CPR'.
I've explained this rather better, in the PDF you can download from my piece at:
As I pointed out in one of my many BMJ rapid responses on MCA/CPR/EoL:
http://www.bmj.com/content/352/bmj.i222/rr-0
'If we adopt my position, that unless somebody is empowered by section 6(6) everyone should be contributing whatever they can to the formation of the best possible best-interests decision (clinicians contribute clinical prognoses, family and friends individually answer the crucial question of 'what would the patient have decided ?'), and with luck a unanimous decision emerges, then that unanimous decision is the one to be adopted by everyone. But, if there isn't unanimity, where does 'mediation' fit in ?
An honest consideration of section 4 of the Act, first requires a person to answer the question 'Am I sufficiently well-informed to properly consider section 4, and thereby to defensibly claim compliance with section 4(9) ?'. If the answer is no, you would not be involved in 'mediation' [about 'what is the best best-interests decision']. If the answer is 'yes', then your own best-interests decision is the one you must follow: that is obvious, from the wording of 4(9).'
CONCLUSION: I keep 'banging on about' this stuff - I can't see where I'm getting law and logic wrong, and neither can I detect much progress in terms of 'the clinical establishment' accepting my position!
PPS The new DiC website seems very pink, at least on the computers I've been using [and I'm pleased it is now supporting many more 'champions' than its original 'aspiration' - I'm possibly less pleased by the pink, but I'll put up with it!].
Just seen that 'attach files is back' - HOORAY!!!!
I cobbled together the attached PDF yesterday, in an attempt to present the arguments in an 'easier to link together' way.
I hope I have not made any proof-reading or other mistakes - but given my previous track-record, no promises!
Associated files and links:
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Paramedic or Family Carer who decides
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