The new Respect form- Aretha Franklin and our odd relationship with forms

EAB2B298-BCFB-4937-967D-0C60CBDB51C5aDr Ollie Minton, Consultant in Palliative Medicine

Maybe I should not listen to BBC Radio 4 as much as I do, although it is always stimulating and often leads to debate. This is especially true of the Today program where the “vexed issue” of DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) was recently discussed. However the twist on the usual discussions is the introduction of a new form to allow people to have discussions about all aspects of their treatment. I have not been involved in the process but a large number of organisations have, and it’s been named the respect process.  I like the term process at the very least – it is not a one off event and implies complexity if nothing else. However, like all things paper or even IT based, the form completion is only really one aspect.

 

I ain’t gonna do you wrong, while you’re gone
Ain’t gonna do you wrong (ooh) ’cause I don’t want to (ooh)
All I’m askin’ (ooh)
 ”

 

Sorry, got a bit distracted there… All the fault of my esteemed colleague Dr Mark Taubert, who likes to draw parallels to life’s current news and Zeitgeist events, for example David Bowie’s death, or a recent story about a failing satellite.  So I am going to use Aretha Franklin’s anthem to discuss RESPECT. This is not a column about relationships per se, but about the new proposals from the resuscitation council and others.

 

The very sound aim is to move away from placing Do Not Resuscitate decisions in a special category and to more seamlessly incorporate them into routine practice and discussions, especially within the context of myriad other treatments, other than just the one procedure, CPR. The case for doing this has been made by many, including a recent BMJ column by Professor David Oliver.  I also would draw your attention to Mark Taubert’s excellent work in Wales around how to talk about CPR and DNACPR, especially towards the end of your life. Just google “Talk CPR”, or the website with patient co-directed videos can be found here. The videos aimed at educating professionals about the issue, featuring an affected patient and carer in them: https://www.youtube.com/watch?v=ImrfD4RbMDE

 

Ooh, your kisses (ooh)
Sweeter than honey (ooh)
And guess what (ooh)
So is my money (ooh)
All I want you to do (ooh) for me
Is give it to me when you get home (re, re, re ,re)

 

Oops, sorry, I was miles away there, please bear with me.

The lyrics of Aretha’s respect song are relevant not just for this new acronym  – “Find out what it means to me… I’ve got to have (just a little bit) of respect”. I think we can agree we all want that especially if time and prognosis is limited. However this is not simply a palliative medicine problem – patients are referred late to services and doctors are poor at prognostication and recognising dying. We need to get behind this as a speciality but as the saying goes “it’s everybody’s business”.

We cannot as professionals force people to have these conversations. Yet we are constantly being told that there are“inappropriate admissions” with extensive use of hospitals for frail elderly or complex patients.

That is way a public information website and campaign  like TalkCPR in Wales, with its hahtag campaign on Twitter (#TalkCPR)  is an important and bold strating point to educate everyone about the pros and cons of CPR, in particular in life-limiting and palliative illness.

 

Alongside this and far more important than cost, it is distressing and affects bereavement to be admitted as an emergency unnecessarily if “avoidable”. For example the increase in admissions we have all seen from nursing homes. I am sure hospital episode statistics will bear this out and the proposed new end of life metrics will allow for more nuance and detailed analysis in time.

 

This is a complex procedure and instilling the Respect ethos will take time, money and attention to detail. I think the medical research council framework  is a helpful guide as will the proposed Royal College of Physicians quality improvement hub. The fact that every relevant learned society and organisation is already involved should allow the right level of discourse to make it happen. When and how this filters through to the “shop floor” is as a best guess over some years. Whether this means trial by media around death lists and pathways it remains to be seen. I sincerely hope not.

 

But the Respect form must not merely become a ‘palliative’ for the distress symptoms of the medics (anxiety about having these conversations when the patient is actually still able to have them, for fear of making them frightened). And we shouldn’t just create a more benign piece of paper, with less hostile, nasty words (like death): this must also not become a ‘palliative’ or ‘sedative’ for the agitated media, hungry for yet more sinisterly worded forms, clandestinely used in hospitals, the ‘next LCP’.

 

I fundamentally believe that the form currently in its 67th version is unlikely to alter practice without significant education and training. In fact, I would rather have a really basic form without realms of information, but an extensive supporting training programme, something like a Serious Illness Conversation training project for all healthcare grades and professionals. This sort of ambitious project has already started in Wales.

 

The form itself should not be the actual training, however well it is or isn’t worded. It should not serve the purpose of assuaging those fearful of another media storm. In a sense, we should really strive for a system where the form does not matter much at all, and merely acts as an information letter from one healthcare professional to another, held by a patient or their loved-ones: “I have had a conversation about this with Mrs X. Her views are that she’d be up for any treatments doctors feel she may need, just not CPR please. Her family were there when we talked it through. Yours sincerely, Dr O M”. The qualitative text you write on a piece of paper usually trumps any tick boxes in terms of meaningfulness.

 

Yes, it’s hardly ever about the paperwork, and always about the actual ‘meat’ of these serious illness conversations. My feelings on this have not changed since August 2016.

 

Or you might walk in (respect, just a little bit)
And find out I’m gone (just a little bit)
I got to have (just a little bit)
A little respect (just a little bit)”

 

Sorry, was I singing again?