DNACPR at Home and a Twitter thread: what is the [legal] situation for relatives?
During a recent Twitter thread, Dr Kathryn Mannix posted some tweets, and I want to analyse one of them. It will be much easier to do that here, than on Twitter. Two of Kathryn's tweets, joined together here, were:
'if in the same emergency, a family that knows a person doesn't want CPR should be able to access HCP help (eg for symptom management) & have their knowledge of the patient's wishes respected, with or without that guidance document*. Also if family understand either that a person is dying (CPR won't work) or that person declines CPR, they should not feel obliged to start CPR or to send for emergency services if the person dies. The person's decision should be respected. HCPs should respect that too.'
* Earlier in the Twitter thread we had been discussing documentation - things such as the ReSPECT form and DNACPR documents - which relate to CPR/DNACPR.
I am going to briefly analyse:
'... if [the] family understand either that a person is dying (CPR won't work) or that person declines CPR, they should not feel obliged to start CPR or to send for emergency services if the person dies. The person's decision should be respected. HCPs should respect that too.'
I will start with a general observation: some relatives, however 'prepared', will I suspect 'panic'. And in the situation of a loved-one dying, nobody should be overly-critical of 'how relatives react or behave'. So, I can now do 'should the relative/s feel obliged to attempt CPR and/or to call 999'?
1 THE PATIENT WAS CAPACITOUS PRIOR TO THE ARREST
In theory - and I have discussed this with a lawyer - because England does not have 'a Good Samaritan Law' it seems that a relative is not legally obliged to do anything: you can just 'watch your loved-one die'. You are obliged to report your loved-one's death, once the person is definitely dead. But 'you are under no legal obligation to help'.
I HATE this 'defence' for letting your loved-one die without intervention. One reason, is the Samaritan was a stranger, passing by: we [relatives and family-carers] are not "strangers'. We are INVOLVED. We are instinctively 'active'. My second reason, is that irrespective of not being legally-required to 'be involved', I feel sure 'I decided to just watch' would go down very badly with the emergency services, who probably would be involved post-mortem.
So, I prefer 'a defence' based on following the Mental Capacity Act (MCA). Once your loved-one has lost consciousness, there is nothing to prevent a relative from 'opting in to the MCA' - from saying 'I followed the MCA'. And if your loved-one was lacking in mental capacity before the arrest, then a relative is probably already 'engaged with' the MCA - so I will now discuss that situation.
2 THE PATIENT WAS NOT CAPACITOUS PRIOR TO THE ARREST
If your loved-one is already living with severe dementia, as an example, then family-carers are legally required to apply the MCA (technically, properly applying the MCA provides a legal defence - here a defence for not attempting CPR and not summoning 999). We know that lay folk are capable of applying the MCA: because suitably-empowered Welfare Attorneys can be given authority over best-interests CPR decision-making. And there is no reason to believe that being appointed as a welfare attorney magically improves your understanding of the MCA: it is reading the MCA, etc, that allows a relative to understand its best-interests concept. Being appointed as an attorney, gives you AUTHORITY - it doesn't magically impart a better understanding of the MCA.
I will point out - if a clinician becomes involved before your loved-one is definitely dead, the clinician is also required to apply the same MCA: so, we have relatives and clinicians both trying to apply the MCA, but usually with each being sure of very different things. Ideally, we would have only 'a single mind' which understood what the relatives know, and also what the clinicians know: a mind that knew the patient as an individual and which had been 'listening to' the patient, and which also understood the clinical situation.
This situation of incapacity before the arrest, is also one in which 'advance planning' is much more likely to have already taken place - the family and the GP may well have discussed things, with 'supporting documentation'.
But - if a relative involves 999 before the loved one is definitely dead - then we have relatives and paramedics, who each usually know different things, interacting 'in a fraught situation and when nobody involved has much 'thinking time''.
3 SOME FURTHER COMPICATIONS
A lawyer, insists that a verbal refusal of CPR is not legally binding, so however-clearly my dad has told me 'I would NEVER want CPR', if he arrests without having created a written Advance Decision refusing CPR, then I have to make a best-interests decision about CPR. From my family-carer and 'present much of the time' position, I can't 'swallow that' - I know my dad has refused CPR, and I am 'just going to respect his decision'. For me, I am respecting my dad's autonomy - which is not part of the MCA's best-interests framework. I think, that looks different at 1pm in a court on a Tuesday, compared to 1am in a bedroom on a Tuesday. And, there is also a complication in that relatives talk and listen to become informed, while HCPs spend a lot of time reading written notes.
For further reading, try my pieces here;
Reading and Listening - is 'being in the now' sometimes a problem?
Dr Kathryn Mannix's new book, 'Listen', has got me thinking. I've not yet read the book, which has only just been published, but it is about 'difficult conversations' (such as conversations with 'dying' patients). So, I'm assuming Kathryn's book is about verbal conversations. Kathryn's first book, 'With the End in Mind', was widely-praised, and that book was more about 'how people die' (the physical changes, etc).
I am endlessly annoyed that I'm hopeless at proof-reading my own stuff - because my brain 'sees what I intended to write'. And, sometimes when I return days or weeks later to an e-mail or tweet someone has sent to me, I'll think 'Oh - I misunderstood what they meant!'. With e-mails, I think misunderstanding happens more often, if I am reading an e-mail 'in the context of an e-mail chain': if I am 'already making an assumption' about what the e-mail is likely to be telling me. Twitter is a little different, because the nature of Twitter means that tweets can often be misinterpreted. I could describe this, as 'reading something 'while I'm IN A 'NOW''. That 'now' (or if you prefer 'moment') is the now-of-my-mind: with its loose pre-existing expectations about what I will be reading, because 'we are discussing 'whatever' at the moment'.
I can sometimes subsequently spot that I misunderstood an e-mail or a tweet, because the original is WRITTEN (and what I 'remember' is not the original wording of an e-mail or tweet - it is 'my own wording 'describing the meaning of'' the e-mail or tweet) and I can read it again.
How could you do this for a conversation - if you misunderstood, perhaps because your idea of what was being discussed differed from the other person's understanding of what was being discussed (which might be because the other person had 'changed theme' without you spotting that) - then how can you 'go back afterwards, and 'see your mistake''? You only have your own 'memory of' the conversation, to work with a few days later (and presumably, your memory will reflect your understanding of a conversation as it was happening): no 'written original' to read again. It is well-understood, that doctors and patients [or relatives] will sometimes significantly disagree about what was being discussed during a past conversation.
I believe, that Kathryn suggests 'talking less and listening more' is a good approach for the difficult conversations palliative-care doctors are often involved in (that seems sound to me - but, it isn't an approach which anyone-involved could adopt in the scenario I most often write about, which involves relatives, 999 paramedics and a loved-one/patient who is in cardiopulmonary arrest). Kathryn's advice of 'listen more' could be seen, framed in terms of what I have written above, as 'stand aside from your 'now' and check what you actually are being told'. But my point stands - you can only return to your own, possibly distorted, recollection of what was said during a conversation: there is no 'original text' to look at and to think about.
Kathryn Mannix has tweeted about my previous post, and in her tweet Kathryn wrote ''Listen' (Kathryn's new book) mentions the invisibilty of our own assumptions'. The phrase 'the invisibility of our own assumptions' is worth pondering.
One 'invisibility', might be that during a conversation, MY 'assumptions' might not be visible to YOU. Another 'invisibility' of a sort, might be that my own 'assumptions' are so embedded within 'the way I think' that I have largely forgotten that those assumptions exist: or, probably more correctly as a description, that I no longer question the validity of my deeply-held assumptions.
This second type of 'invisible assumption', is something I have a great deal of trouble addressing. There are widely-held 'assumptions' within professions, which are often not explictly stated but which will definitely affect how things such as guidance and protocols are applied by professionals. I once exchanged tweets with a paramedic, which went along these lines:
Me: It isn't satisfactory that EoL writing almost always tells patients to share their plans, decisions and wishes with their family and with the clinicians involved with their care, but the guidance for 999 does not say 'believe what relatives are telling you, as your starting point'.
Paramedic: But the guidance doesn't tell 999 paramedics to disbelieve the family, either.
It doesn't matter that 'the guidance doesn't tell 999 paramedics to disbelieve relatives by default' IF most paramedics 'have that attitude 'as an invisible assumption''.
To properly discuss and debate many of the issues around EoL/MCA/CPR, not only do we need to agree about various legal issues, but we also need to 'surface' the 'invisible assumptions' held by both professionals and by patients, relatives and friends. Not an easy thing to do: but an invisible bear, could still give you a terrible mauling - and you wouldn't be able to see what was attacking you. We patients and family-carers, can find ourselves entangled within a web of [professionally-held] invisible assumptions - something which is not easy to write about, let alone to address!
I will add a further post, giving a personal example of how this 'assumptions and in-the-moment' issue played-out when I phoned a GP Surgery after my mum died.
The problems created by a combination of 'being in MY OWN NOW' and also 'INVISIBLE ASSUMPTIONS' can be seen within my description of events after my mum died:
I, who had been watching my comatose mum dying for several days, phoned the GP Surgery 'in my now of 'it's time to call the GP out to certify mum"s death'' - the GP"s receptionist, was in a very different 'now' at her end of my phone call.
Then I was faced with a 999 Paramedic, and we each clearly had very different 'nows' and very different 'assumptions'.
From personal experience, I can state that 'in the now' and 'invisible assumptions' can combine to become very problematic. In passing, I will point out that 'invisible assumptions' can include what I describe as 'ordering the caveats': how do you assign an order of priority, to competing and conflicting objectives.