The thing is - many, or most, of us DON'T talk about CPR.

mike stone 04/07/22 Dignity Champions forum

I'm writing this as I type - please accept any lack of coherence, and imperfections.

A few weeks ago, I was contacted by someone whose family were discussing whether their elderly parent should be subjected to attempted cardiopulmonary resuscitation (CPR) or not. The parent didn't have the mental capacity to express a view: and, the situation within the family was what I'll describe (accurately or not) as 'fraught' - some relatives thought CPR should not be attempted, and others thought CPR should be attempted.

The person who contacted me, wanted to know if there was was clearly-presented information online, to help families in such situations, about things such as:

* The likely consequences of attempted CPR on very-elderly people,

* How might relatives reach agreement,

* And similar issues.

The situation of a family disagreeing about CPR, is a deeply unhappy one in my opinion. Even if there is agreement, it is still tricky: it isn't the case, as many people might assume, that 'the family decide'. In this particular case, one of the relatives was a Welfare Attorney [and I'm assuming possessed 'MCA section 6(6) authority' over CPR decisions): even so, the situation is still 'tricky':

https://www.dignityincare.org.uk/Discuss-and-debate/Dignity-Champions-forum/Is-the-power-of-a-Welfare-Attorney-LPA-largely-an-illusion-a-response-to-39-Essex-Chambers/1103/

There is a website, which was set up to try and promote discussions of CPR:

http://talkcpr.wales/

But I'm not sure if that website actually resolves the problem put to me - is there an online website, which exists to help THE FAMILY arrive at a 'decision about' CPR, in situations when a loved-one cannot make the decision and had not made what I will here describe as 'a decision in advance'?

Typically, it looks from what laypeople will find online, as if 'doctors make the decision about CPR, and family and friends contribute information' [about 'the views of the patient']'. This is in fact a significant over-simplification: see my piece at:

https://www.dignityincare.org.uk/Discuss-and-debate/Dignity-Champions-forum/Clinicians-and-Relatives-Consensus-Uncertainty-Emergency-and-Trust-a-continuation-from-a-Journal-of-Medical-Ethics-paper/1112/

I have been prompted to remember something which I noticed in my early days of reading about DNACPR. It looked to me, 'as if DNACPR documents 'suddenly appeared' once doctors could say 'CPR couldn't be successful''. And I used to find much less about patients refusing CPR while CPR might still be successful. Which is strange when you think about it: before the patient was so ill that CPR could not (in reality, not could not but 'almost certainly would not') be successful, there should have been a preceding stage when the patient was healthier and CPR might have been successful. But, if the patient cannot tell you if she would want CPR or not, and if CPR might be successful, the conversations and decision-making are very complex - whereas if CPR definitely could not work, then doctors are not required to offer CPR. Cynically, I tended to think '... some of these doctors, don't want to discuss CPR until they can say 'CPR wouldn't work''.

Now, some years on, the guidance is very-much to get something about CPR from the patient while the patient is still capacitous (in my view ideally that 'something' would be an Advance Decision refusing CPR - not the 'preference for or against CPR' recorded on the ReSPECT form: I really do not like the ReSPECT form). I've heard of 'ACP forms' re CPR being completed by nurses, when the patient did not want that to happen and was being distressed by the process - which looks to me like 'a sensible objective being 'translated' into a requirement', which is very wrong!

There are lots of problems around CPR:

https://www.bmj.com/content/352/bmj.i1494/rr-3

During a Twitter discussion about CPR, the usual 'CPR on TV is misleading' thing came up. It is misleading: CPR usually doesn't restore life, which certainly wasn't the impression you would have got from TV dramas 'historically' - I think these days you are much more likely to see CPR not being successful than you were a decade ago. What you still don't see on TV, is 'the brutality of' CPR - as a doctor in the Twitter discussion commented, 'on TV you don't hear the crunchy sounds as ribs break'.

I would be very pleased if people would contribute to this thread: is there a website, or more than one website, which is specifically intended to help the family and friends of elderly and mentally incapable (which will I suspect usually be because of advanced dementia) navigate the issue of 'should our loved one receive CPR'?

Or have people with experience of this themselves, found that they were left without much help?

As I originally said - apologies if this isn't all that coherent, because I've been constructing the piece as I typed.