The last thing you want to talk about? CPR in palliative illness and the #TalkCPR project

EPCA2019 quality improvement winner’s story by Dr Mark Taubert, clinical director/consultant in palliative medicine, #TalkCPR team.

When you are faced with a serious palliative illness, then sometimes planning ahead for the inevitable sounds like a good idea. But in reality it is not always an easy conversation to initiate.

Many doctors and nurses know this, but even patients tell me that at times they struggle to ask the questions they really want addressing. So having resources to look at before or during such conversations can be helpful. Our project explored whether videos and social media campaigning could have an impact on these conversations.

My interest in the topic of open conversations about patients’ views on resuscitation and DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) started many years ago, but gained momentum in 2015. As part of a Welsh NHS initiative (Sharing and Involving: A Clinical Policy for Do Not Attempt Cardio Pulmonary Resuscitation (DNACPR) for Adults in Wales) we started work on a project to improve communication resources for individuals with palliative illness.

The result was the ‘TalkCPR’ project, co-designed by patients and carers. It aims to improve communication and dialogue between patients and their healthcare professionals with regard to DNACPR decisions.

When first confronted with these issues, many people are understandably perplexed, Why on earth would I want to opt out of future resuscitation attempts, if they became an option in an emergency?  Will this sort of opt out reduce the quality of all my other care?

Keith Cass, one of the patients who took part in the TalkCPR project, was just the same. However, when he looked at the TalkCPR videos and at the different views on Twitter, he made a complete U-turn. So much so, that he was determined no one would give him ‘accidental’ CPR in his dying moments.

Keith wrote about this very candidly in the BMJ. He was particularly struck by the low success rates of CPR in palliative care situations, and the trauma it could cause. 'It's not like Holby City' is something he would say to the medical teams who saw him. Keith died earlier this year, at home in his own bed, as per his wishes.

The venture represents a collaborative effort between a patient/carer group, plus all NHS Wales health boards and trusts, as well as the Welsh government Byw Nawr initiative, with support from the Bevan Commission as a Bevan Exemplar project.

Dr Mark Taubert, clinical director/consultant in palliative medicine, #TalkCPR team

The venture represents a collaborative effort between a patient/carer group, plus all NHS Wales health boards and trusts, as well as the Welsh government Byw Nawr initiative, with support from the Bevan Commission as a Bevan Exemplar project. Initially, two videos were produced for patients and carers who wanted to know more about this topic and required a resource to help shared decision-making with their clinical team.

Two further videos were developed to provide healthcare professionals with tips and approaches to start this difficult conversation. Provisions have also been made for blind, partially sighted and deaf patients. The website was designed together with patients and put together by James Norris of the TalkCPR project team. James heads the Digital Legacy Association and the MyWishes initiative, and also holds an honorary contract with Velindre NHS Trust.

The impact of these videos on patients, nurses and doctors was measured through pre- and post-video surveys and a focus group session. Results showed a significant increase in the confidence of staff with regards to openly discussing DNACPR after watching the videos.

Dr Mark Taubert, clinical director/consultant in palliative medicine, #TalkCPR team

The impact of these videos on patients, nurses and doctors was measured through pre- and post-video surveys and a focus group session. Results showed a significant increase in the confidence of staff with regards to openly discussing DNACPR after watching the videos. The evaluation and some of the improving quality together (IQT) methodology used can be viewed in this Biomed Central article. We also wrote about this project in the BMJ’s quality improvement series. The RCP listed TalkCPR as a resource in its report Talking about dying

These short films have been made available in each health board and trust in Wales, and several English trusts have come forward and are using the videos in their own settings. We have not copyrighted them, so if you want to suggest them to patients and families then please go ahead. 

Am I a big supporter of DNACPR forms? The truth is, not really. They are an awful but necessary by-product of our time. Ideally you’d get informed patients or their proxy coming in and perhaps help them fill in their own Advance Statements of Wishes and Preferences or, if they prefer legally binding forms, an Advance Decision to Refuse Treatment (ADRT). Or both. Hopefully we can slowly work towards a vision where these DNACPR forms start becoming a bit obsolete. 

I’m sure digital records can help, but we also have to be cautious – it’s not an area that allows for any margin of error. I often suggest to my patients that they should appoint a Lasting Power of Attorney for Health and Welfare, so they retain a voice when less able to communicate.

We organised a Welsh conference in June 2019 to get stakeholders, including patients, to agree to a clearer strategic vision for Wales in years to come on the topic of advance and future care planning. Perhaps the first step of many, but until such times, I feel the TalkCPR videos can really help further understanding on this topic.

We decided to submit this project for an RCP Excellence in Patient Care Award, because of our belief that it delivers just that: excellent resources for a topic that needs some prior knowledge and understanding, especially regarding the low success of CPR in advanced palliative illness.