I have a suggestion for how family-carers and 999 paramedics 'could be reconciled' for CPR decision-making - feedback from family-carers welcomed.
The PDF contains some analysis, and also a suggestion about how decision-making should proceed if paramedics and family-carers are interacting, with an emphasis on known 'end-of-life' situations. I have asked for comments from 999 paramedics on Twitter, in a series of tweets which start at:
If I get any replies on Twitter, I will 'move then over' to this thread.
If any 999 paramedics, or any family-carers are reading this (as it is family-carers and 999 paramedics WHO ARE PRESENT, it is the views of those two categories of people I am most interested in) would care to post opinions here, please do so.
In essence [the PDF contains 'the argument'] I am proposing that the 'rules for' whether or not cardiopulmonary resuscitation should be attempted by 999 paramedics, are these:
Now, unfortunately, even if we trust everyone, and accept that all family-carers are acting 100% honestly, it doesn't follow that all family carers will agree about what the patient would have wanted to happen: often, the family-carers will all agree, but 'honest disagreements' are possible even within 'well-informed family-carers' and must be accepted. What I cannot accept, is the idea that a 999 paramedic can understand what is in the patient's best interests, better than the patient's close family and close friends.
How might this be joined together, applying my 'first do not insult' principle, but also respecting the situation of the 999 paramedics and the law's 'preservation of life' fall-back position? This is what I would suggest - I started to describe this sometime around 2014.
THESE ARE 'THE RULES' I am suggesting:
The paramedic, after describing the clinical situation, treatment options and prognoses, asks all of the carers present 'are you sure of what the patient would want us to do?' - so, for CPR that simplifies to 'do you know if he would want us to attempt CPR?'.
Then, the paramedic believes the answers [by default] assuming the carers are reasonably 'calm and composed', and:
If all of the carers say 'I know she wouldn't want CPR' then the paramedics DO NOT attempt CPR;
If some of the carers say 'I don't know' but one or more firmly say 'I know she wouldn't want CPR' then the paramedics do NOT attempt CPR (this one is perhaps contentious - it requires debating: see the footnote);
If all of the carers say 'I don't know' then the paramedics DO attempt CPR;
However many carers say 'I'm sure he wouldn't want CPR', if even one carer says 'I'm sure he would want CPR' then the paramedics DO attempt CPR.
Footnote: the premise, is that any family-carer who promptly and 'forcefully' says 'I'm sure my dad wouldn't want CPR' will have a good reason to say that – but not reasons which could be elaborated during an arrest beyond 'because he's made it clear to me!' - so, presented with such 'certainty' from one or more relatives, any other relatives who are only willing to say 'erm … I'm not sure' are not refuting the assertion strongly enough.
The first of those respects the family-carers 'by not insulting them' - and the final one respects the 'fall-back of preservation of life when things are uncertain' principle.
Associated files and links:
Good point mike, but surely that is why we have D.N.R. Form. to give the person at at end of life a choice. and to protect the family and family-carers. How does anyone really know if a person wants to be revived or not.. It is surely that persons decision. Another way around it might be When you are perhaps diagnosed with Cancer or something incurable the perhaps that would then be the time to discuss end of life care after a few days or a couple of weeks to give that person a chance to get their head around their situation and their fears and emotions out the way, before discussing End of life and CPR or DNRs. obviously this would depend on how near the end of life is as to when this discussion takes place.
In the case of no D.N.R. perhaps the person and their family could discuss this with a solicitor and have something in writing as to which family member makes the final call.
A paramedic replied to something I had posted on Twitter, with a 'really interesting' phrase - this is the PDF I've quickly cobbled-together, in response to that phrase.
Associated files and links:
An advance statement in my mind
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I still see EoL-at-Home as being unsatisfactory if you are a family-carer.
After a decade of involvement, I still see little progress - and much professional reluctance and resistance - towards relatives and family-carers being regarded as 'full partners' during end-of-life at home. And I regard this as being unacceptable now, exactly as I regarded it as unacceptable a decade ago. What has changed, is that over the last decade I have come to understand the impediments to progress rather better: also, various court rulings have been useful, especially since about 2015, in 'better explaining' [and in some instances, such as the Tracey ruling, 'adding to'] the Mental Capacity Act.
I was recently exchanging tweets with someone who works for an Ambulance Service, when I pointed out that current protocols for 999 Paramedics do not stress 'believe what family-carers/relatives tell you': he said 'the protocols do no tell paramedics to not believe the relatives'. Which, for CPR (and it is for CPR that conflicts and complications most-often come to a head), is not sufficient: and I will explain why.
There is an argument - which I consider to be somewhere between deeply unhelpful and legally-flawed - that paramedics have 'a duty of care' while family-carers do not, and therefore that once involved paramedics and family-carers are in fundamentally different positions. This is one of several 'legal arguments" which while 'technically correct' are deeply unhelpful. So far as I can see, the idea that clinicians have 'a duty of care' is no longer true after the enactment of the MCA and the Montgomery ruling: now, clinicians must be 'clinically competent' and also, because of their jobs (see MCA section 42), they must apply the MCA (two quite separate concepts: 'Bolam' applying to the former, but crucially not to the latter). In theory, many family-carers are not obliged to apply the MCA (in England we do not have a 'Good Samaritan law') but in practice any family-carer can 'opt-in' to the MCA: a relative can say 'I acted in accordance with the MCA'. And, my feeling is that very few relatives behave like 'passive observers' while a loved-one is dying: we want to be involved, and 'to do the right thing'. So, especially if more relatives become aware of the MCA, we will have many situations when BOTH relatives and 999 paramedics are trying to honestly apply the MCA.
At the heart of the problem, is the situation of a cardiopulmonary arrest (a CPA - when the person's heart stops beating, and breathing also ceases) or a suspected CPA. Two strong legal principles are invoked when a person's heart stops beating: one principle is that if it is understood that the person would have refused attempts to restart the heart, that should be respected (put simply, if the person wants to be allowed to die, the person was capacitous to make that decision, and the person had considered the situation, then the person should be allowed to die); the other principle is 'preservation of life'. This was elaborated, in terms of the application of the Mental Capacity Act's best-interests concept, by Mr Justice Charles in his Briggs ruling (the ruling was about the withdrawal of CANH, but its logic also applies to CPR if CPR might be clinically-successful).
In the real world, there is a clear distinction between what family-carers often understand, and what attending 999 paramedics know. As I recently pointed out in a short Journal of Medical Ethics blog
family-carers will sometimes be as sure as it is possible to be, that their loved -one does not want CPR - but family-carers will not necesarily be certain that their loved-one's heart has actually stopped (you would be sure of 'a collapse', but certainty the heart and breathing have stopped is harder). If a 999 paramedic is called and arrives, the paramedic should be certain within seconds that the heart has stopped, if it has - but the paramedic has never met the collapsed loved-one before. AND WE HAVE THIS PROBLEM:
The family-carer is sure the loved-one/patient would not want CPR - so the family-carer should not do anything which might lead to CPR being attempted,
The 999 paramedic starts from 'preservation of life' until persuaded otherwise: so paramedics tend to argue 'we should start CPR until we are persuaded the patient would have refused CPR'.
Think about this: the family-carer might want to call 999 to be sure the loved-one has not collapsed because of, for example, a stroke which would probably not be fatal (in which case the person would want treatment to minimise the clinical damage he/she would subsequently have to live with), but the family-carer knows that CPR should not be attempted if it is a cardiopulmonary arrest. Even STARTING CPR will 'upset and/or annoy' the family-carer. But the paramedic who arrives, and confirms that it is a CPA, STARTS FROM 'I should attempt CPR until I am persuaded that CPR is the wrong thing to do'. And this situation is incredibly 'rushed': in reality all a relative can say amounts to 'Don't perform CPR - he wouldn't want CPR!'.
During a cardiopulmonary arrest, a family-carer cannot 'prove why he knows CPR is wrong' any more than the attending paramedic could 'prove' that he is performing CPR competently.
Both the relative who is trying to prevent CPR, and the paramedic whose initial position is pro-CPR, are 'correct'. However, and I see this as being significant, their positions are not logically comparable. In the Briggs ruling, Mr Justice Charles started from an existing 'life being preserved position' of ongoing life-sustaining CANH: but when he became persuaded during the case that the patient 'would have refused CANH' then Mr Justice Charles ruled that CANH should be withdrawn [which effectively meant the patient should be allowed to die]. When you apply the same principles to CPR, it is obvious that the relative STARTS where Mr Justice Charles ENDED: with an understanding that 'this patient, in this situation, would not have wanted to be kept alive'. Whereas the attending 999 paramedic, arrives in the position of Mr Justice Charles at the start of the case: not understanding what the patient would want, hence what I term 'default preservation of life'. Basically - and at least one lawyer who I know, dislikes this 'argument' - the relative is saying 'Don't attempt CPR' because the relative understands the patient: and for me, the relative's decision, based on a deeper understanding than the 999 paramedic posesses, must 'in a sense be superior to the paramedic's decision'.
The traditional NHS approach to this type of problem, stresses Advance Care Planning and record-keeping: however, often neither will successfully resolve the problem. In the JME paper referenced above, the patient was not sufficiently ill for there to be an expectation that NHS ACP would be in place. And, any system of record-keeping which 'goes through the GP' is potentially out-of-date compared to the understanding of very recent developments which a family-carer might be aware of.
To close, I will restate the quandry which a relative can be faced with: the relative can be certain that CPR should not be attempted, but not sure if the loved-one is actually in cardiopulmonary arrest - so does the relative phone 999 to get confirmation of a CPA and risk the attending paramedic then attempting CPR, or does the relative not phone anyone and risk the situation becoming worse if it is not a CPA but something like a stroke?
I sent an e-mail, to some university lecturers who teach on paramedic degree courses, yesterday. What follows, is an extract from the e-mail I sent:
If we start from the Briggs ruling, and apply it to CPR, then knowing whether the patient would have wanted CPR or refused it, is the objective of best-interests. Arguing 'we [paramedics] will not believe you [relatives] because we were not there - even though we couldn't have been there' seems ethically questionable to me [and is deeply insulting to honest family-carers - caring for a loved-one during EoL-at-Home is often stressful and confusing, and IF all relatives knew that '999 will distrust you by default' then I think people would be up-in-arms about that]. And, for CPR, we can ask a question. If we assume a family-carer is 'evil' for want of a better word, then presumably the 'nefarious intent' of an evil relative forcefully saying 'stop - I know he wouldn't want CPR!' is DNACPR. So why would an evil family-carer, whose objective was DNACPR, call 999 before the patient was definitely dead? It seems to me, that if someone who called 999 is then saying '... I know she doesn't want CPR', then the relative is very-likely to be an honest relative. I'm tempted to write about 'the unreasonableness of requiring anyone to prove the unprovable' at this point - but I'm resisting the temptation! I will yield to the temptation to point out something else, though: IN REALITY, and despite it being theoretically-correct that best-interests decision-making must take place, nobody can form a deeply-considered best-interests determination (which would require an understanding of the things in MCA 4(6)) about CPR at the time - the relative would, in reality, 'ALREADY 'KNOW'' that DNACPR is the right decision. And 'DNACPR forms' are not 'orders': legally, they cannot be.
And, as I've pointed out: what a family-carer might know, is that their loved-one did not want CPR to be started in the first place. I can't believe many people say to a family-carer 'I want 999 to start CPR while you persuade them to stop' - I feel sure that we family-carers hear 'If my heart stops, I want to be left to die in peace'. You can't take back having started CPR, in exactly the same way that you can't take back not starting CPR. That is extremely tricky: as I've pointed out, it is correct for the family-carer to be trying to prevent CPR, and it is also correct that the paramedic 'needs to be convinced that DNACPR is correct'. If there was always a Welfare Attorney whose authority extended over CPR present (which would probably be the family-carer), then the paramedic can be 'ordered to' not attempt CPR (section 6(7) of the MCA says '... WHILE applying to the court'). But at the moment, I can't see a compromise on that problematic issue, unless both relatives and 999 paramedics think 'the family-carer is the expert on whether the patient would want CPR, the paramedic is the clinical expert [so the paramedic does 'this is indeed a cardiopulmonary arrest, not a collapse-with-a-heartbeat', or perhaps 'the person is definitely beyond CPR', etc]', and then a sort of [instant!] joint-application of the logic of the Briggs ruling follows. In essence, first use Briggs to deduce why CPR should be attempted or withheld: then, think of paramedics and family-carers as co-contributors, and each experts but in different things which we need to know, in order to arrive at 'the best application of the MCA's principles/concepts/objectives'.
University Lecturers teach syllabus monitored by the College of Paramedics. The Health Care And Profession's Council police Registered Paramedics standards of Practice and behaviour. Ultimately His Majesty's Coroners (The Highest Court in the land) are the ultimate adjudicators on correct or incorrect actions relating to a death.
Coroners decide WHY someone died. They aren't involved - except when Expected Death Policies are created - before someone has died.
And, I've asked them:
Some coroners have confirmed to me, that it is outside of their remit to guide how 999 paramedics behave in the context of my own issues/concerns.
When I was taken to A & E with an accidental head injury, I was bleeding a lot because of being on blood thinners. In A & E I was as lucid as the staff were. There was no skull fracture or any apparent clinical insult. I was returned home once the wound was stitched, and the bleeding stopped. On my discharge paper I saw the letters DNR, which I assumed to be because of my age, 77. If this is happening to other people for no reason other than numerical age, it is a very serious matter.
Hi Rwth, I don't think that should happen.
I'm not aware of any other meaning of DNR (although it should be DNACPR these days) although about 15 years ago, Coventry's District Nurses used to use DNR for 'the district nurses request'.
This is a response I got on Twitter - is this a possibility, Ruth?:
Definitely worth asking about, and, as already said, are we sure it didn’t just mean District Nurse Review (for the stitches)?
One of many reasons why out of context abbreviations are a bad thing.