Mike's Cheeky Blog: how do we get there, from here ?
I have been spending much time recently, in what I would call 'online sparring' with the team who have developed something called ReSPECT: most of this exchange has taken place on BMJ, via rapid responses.
It is 'rather strange' because I 'know' [in the sense of having exchanged e-mails with them before ReSPECT was developed] some of the ReSPECT team, and I have no doubt that they want to make things better. So do I: you could say that we agree that 'we are in a bad place' and we need to get to somewhere better. I'm not quite sure if we agree about where we are trying to get to - I am sure, that if ReSPECT is a pathway to that better place, that it is not the pathway I consider we need to take.
Many of my objections to ReSPECT were drawn together in my piece at:
http://www.bmj.com/content/356/bmj.j876/rr-7
I finished my piece with a hypothetical question, which gets to the heart of one of my issues:
To Close: (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 ?
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I had already established one point before I wrote that 'question': I had published a rapid response titled 'You cannot impart the in-depth understanding of a family carer, to a 999 paramedic by means of either the ReSPECT form or by any other means: just one reason why ReSPECT is fundamentally flawed' and the ReSPECT team came back with 'Mr Stone states that the in-depth understanding of a family carer cannot be transferred to a suddenly-involved 999 paramedic by means of any written information. We agree with him, but his implication that the ReSPECT process may attempt to do this is incorrect.'.
Well, when I read ReSPECT it DOES 'attempt to do that'.
Everything about the ReSPECT form, implies that in my scenario above, the paramedic should decide what happens next, after reading the ReSPECT form and after talking to the family carer. But this makes no sense to me: it seems to me, that the 999 paramedic should explain the clinical situation (supply the answer to 'I have called 999 to find out why my partner has collapsed') and then ask the family carer who phoned 999 'what should we do ?'. Some paramedics agree with me:
http://www.bmj.com/content/355/bmj.i5705/rr-15
A paramedic wrote to me about 5 or 6 years ago:
'We are a long way from doing this (although I would!!) But at least we are beginning to agree .. Resus in my opinion is just a clinical intervention like any other skill and should not be seen as a mandated right by health care professionals .. After all if we were not called it would not have been done!! The simple answer is to ask why were we called and how can we help!'
I want us to get to a situation where during end-of-life, family carers are regarded as full members of the patient's support team [often the most important member - by virtue of their presence 'with the patient'] and the emphasis is placed on trying to get decisions from the patient and to follow those [previously expressed] decisions. ReSPECT places an emphasis on making decisions during 'clinical emergencies', and it compounds that mistaken approach by strongly implying that 'the senior attending clinician' should be the decision-maker.
Whatever the ReSPECT team intends, ReSPECT in its current form is not going to promote a culture shift towards 'we should be doing what the patient wants' and away from 'the senior clinician is in charge'. It will reinforce 'the senior clinician makes the decisions'.
Going back to my scenario - I await answers to that question: I can't see why the relative should accept that a newly-involved 999 paramedic, who has no 'overall understanding of the situation', should be the 'decision-maker'. I would be very interested, to see justifications as to why the paramedic should be the decision-maker.
Hi Mike firstly sorry to hear about you and your partners situation ,I agree wholeheartedly with what you have said.
Please get in touch with either macmillan or Marie curie for some much needed support in end of life care ,also organisation I work for help for carers we our a respite service .Neil Purcell
Hi Neil,
I'm pleased that you agree with me - the problem, is that the professionals do not. There is a deep, entrenched resistance to 'trusting family carers' within the 999 Services.
You missed the 'To Close: (hypothetical)' clue above that scenario - it isn't personal to me, I constructed it to make the point clear.
You can find a short description of how I myself became involved in this debate/campaign, in my piece at:
http://www.bmj.com/content/356/bmj.j367/rr-4
I wrote in the piece 'I therefore made sure that my mum had died' and I should have written 'I therefore checked that my mum had died', but I think I was reasonably clear in my explanation.
Hi Mike
I am fascinated by the scenario you have described above, and whole heatedly agree with your point of view that the 99 paramedic is there to first identify what has occurred, and then apply the relevant measures once they have taken in to account ALL present and who have an interest in the person on the floor!
I am looking from this in a slightly different angle, which is that of a manger of a large mental health care home. Where many paramedics do not get to the person in dire need of their support, until they have asked myself of my staff team for information first.
Mt point is that for me I guess it is the opposite way around in your 'hypothetical' scenario. The 999 paramedic should again as you correctly identified, assess the person and then provide the medical cause or concerns. Only then ascertain who the person is and what the correct and most effective cause of action would be.
If I have miss understood your Blog then please just disregard my comments as babble!!!!
Kind Regards
Ben
Hi Ben,
We all 'babble' !
I got an e-mail from a doctor recently - the doctor who posed the question about CPR which I've just posted on DiA Facebook and more recently in this discussion forum - and as it happens he started his e-mail to me with:
'I read your email with interest, you make many fascinating points ...'
You also used the word 'fascinated' - I normally get 'thoughtful'.
I don't think we disagree - if a person has collapsed, the first concern of the paramedic should be to work out why. Then, we get to 'what should happen next'. In my limited experience of 999 paramedics, you probably get 2 - so one could work out what has happened clinically to the patient, while the other asks family carers or staff 'who is he - and what is the situation'.
My issue, is with WHO DECIDES what should happen next (and that is also the issue, in the scenario the doctor sent to me). There is a thing called ReSPECT - it was originally called Emergency Care and Treatment Plan - which has just been 'launched' and I do not like it. The reason I don't like it, is that it entrenches the idea that the senior available clinician would decide what happens next [in my scenarios, usually whether or not CPR should be attempted]. My position is that the people who called 999 - family carers or live-with 'relatives', or staff in a carehome, etc - often understand the overall situation far better than the paramedic, and therefore they should be 'deciding what happens next'.
You can find some of my online argument with the ReSPECT team in the series of BMJ rapid responses at:
http://www.bmj.com/content/356/bmj.j876/rapid-responses
They come up on my computer as 'most recent first' (Descending) - you need to read from the oldest first if you are new to the thread, so change the drop-down to 'Ascending' (and you do also need to click on the 'apply' button to get the order to change).
If you read those, you might find them interesting - perhaps even 'fascinating' !
There are actually 3 or 4 different BMJ articles, where comments have been made about 'ReSPECT' - I'll supply the links if anybody wants them, but if you put the following into a Google search they will probably all come up:
Michael H Stone BMJ ReSPECT CPR