I am trying to persuade the Royal College of General Practitioners to change what it writes about relatives when patients are dying
I'm trying to persuade the Royal College of General Practitioners to change what it writes about how family-carers, relatives and friends are involved when someone is 'end of life'.
The PDF, contains the 'nerdy arguments' - why what we family and friends are currently being told by clinical organisations is legally incorrect, and why in a wider 'logical sense' it doesn't stand up.
If I don't dig into the 'legal stuff', I can express the problem as follows. While clinicians and the BMA, etc, write all sorts of correct and sensible things about family-carers and clinicians needing to work as a team to support the dying loved-one/patient, they also assert what amounts to '... but in the end, the doctor makes and is responsible for the decisions about treatments'. That looks very like 'once we are involved, 'your loved-one has become our patient'' - it rather looks as if we relatives have 'handed over all of the important decision-making about our loved-one's care to the doctors'. I don't think, most family-carers and relatives are happy to accept that - we don't suddenly 'stop caring about how our loved-one is treated' simply because we want HELP FROM doctors and nurses.
I think, we - patients and/or family-carers - 'invite the clinicians to help' while our loved-one is dying. I don't think we 'invite the clinicians to take control'.
There are particular issues with cardiopulmonary resuscitation (CPR) and the decision-making around CPR/DNACPR, which readers who have read my pieces here on Dignity in Care about CPR will be familiar with. The PDF you can download here, is in effect an elaboration of a BMJ rapid response which I wrote in 2017:
https://www.bmj.com/content/358/bmj.j3257/rr-4
Now, 5 years after I wrote that short rapid response, I am able to elaborate on it.
As usual, comments welcomed.
Associated files and links:
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A Case for Change A letter to the RCGP
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I have noticed that I missed out a couple of words from this sentence on the first page of the PDF:
'As patients approach death, it seems to me that increasingly the interactions
between patients [and/or family-carers] will take place inside the patient’s
home – so physically GPs are already visiting ‘our world’.'
It should have said - with the words I missed out in BOLD here - and readers probably realised this anyway, but I might as well correct it:
'As patients approach death, it seems to me that increasingly the interactions
between patients [and/or family-carers] AND GPs will take place inside the patient’s home – so physically GPs are already visiting ‘our world’.'
There is a video of a conversation between Professor Mark Taubert, a palliative care doctor, and one of his patient’s, Kat (at least she is identified on the video as Kat – my ageing ears thought Mark was calling her Cas) at:
https://m.youtube.com/watch?v=SerstX6D_CU&list=PLzViUx1Kacvxj3XthM2S3VJLWbjr8uCRZ&index=10
It is a conversation about planning ahead (in ‘the jargon’ about Future Care Planning and Advance Care Planning) in the context of Kat’s health and what might happen in the future. Cardiopulmonary resuscitation (CPR) is discussed, as are various other things. This is very clearly one conversation, within a series of conversations which will take place as Kat’s clinical situation changes, or as her views and decisions change even if her clinical situation has not altered much.
Mark is not a typical doctor – he writes and broadcasts about CPR much more than most doctors, and he is very involved with the ‘advance planning’ aspect. And I am not a typical former family-carer during end-of-life. So, my views on the video.
Mark could be regarded as trying to get information and understanding from Kat, to help him if Kat arrives unconscious on his ward and Mark cannot simply talk to her and ask her questions. Mark might – this is really ‘the next step’ – also be working out how he can ‘transmit’ his understanding of Kat, to any clinicians who went to her home if she suffered something like a cardiopulmonary arrest at home.
Kat, will be trying to get information about how her illness is likely to develop, what options she will be offered, and what choices she will be able to make. Kat might think ‘Well – Mark has got a reasonable understanding of my views: but where does my partner fit in, if I collapse while I’m at home? And, what decisions can I make in advance – and how can I make sure my decisions are followed?’.
Those final two sentences above – how does someone living with, or sharing a life with, the patient fit within the decision-making process, and how do patients make sure their decisions about what should happen in the future are respected? – are what I have been writing about for something like a decade. In fact, I posted the link to the video in this thread, because my ‘letter to the RCGP’ is a piece which looks at those issues.
I think it is a good video, although its topic is a minority-interest among the general public: but presumably of somewhat greater interest to readers of Dignity in Care. I think the video has some potential as a ‘teaching tool’ as well.
If anyone watches it and wishes to provide any feedback, then please post it – I feel sure that Mark would like to see feedback about the video.