New ways of encouraging discussion and education around the topic of do not attempt cardiopulmonary resuscitation (DNACPR) decisions in healthcare can prove challenging. Cardiopulmonary resuscitation is still portrayed as an intervention that is successful even in people with multiple long-term conditions. In 2020, during the first months of the COVID-19 pandemic, a letter from a palliative care doctor to his patient was read out as part of an online campaign entitled #ReadALetter, organised by the organisation Letters Live. The letter addresses misconceptions regarding DNACPR decisions and encourages thoughtful dialogue. In particular, it promotes an individualised approach for clinicians, and investigates one patient’s journey: from initially rejecting the concept, to later on fully embracing it as part of his holistic care. A journey that took him to Barbados, amongst other places.
- clinical decisions
- education and training
- quality of life
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Cardiopulmonary resuscitation (CPR) and do not attempt cardiopulmonary resuscitation (DNACPR) decisions form an important part of health and social care, and require a holistic, individualised approach. Often, doctors, nurses, patients and their loved-ones can find this a challenging topic to broach.1
The need to find innovative new ways to commence such discussions has been identified in the literature.2 When the team from the event company 'Letters Live' approached the author (MT) during the onset of the COVID-19 pandemic in 2020, they asked him to record a video with a personal letter-reading to a patient. After contacting the deceased patient’s family and gaining their consent, the author wrote a reflective letter on past and current events. The content in part was a response to an article written by the patient in the BMJ in 2018, on how he (the patient) came round to the idea of DNACPR, after initially rejecting it.3 Both patient and doctor were involved in the Welsh #TalkCPR project, which is a campaign that promotes web content and videos, in order to provide better quality information about CPR and DNACPR.4
The video of the author reading this letter is available on YouTube and has been used in undergraduate teaching on this topic, with positive evaluations from students to help understand a topic with multiple complexities. It can be accessed here, on the Letters Live YouTube channel: https://youtu.be/JKX-hds4Bwg.
It’s been a year since you died, and I think this whole COVID-19 pandemic situation would not have impressed you very much.
I was lucky enough to be part of the last years of your life, looking after you as your palliative care doctor. Your jokes and warped sense of humour are still very much with me—I can hear your voice and your laugh as though I’d just seen you yesterday. Strange, isn’t it?
Why am I writing these words to you? Well, one of our favourite topics, something that was close to your heart, if you’ll pardon the pun, has been making headlines: do not attempt cardiopulmonary resuscitation, or “DNACPR” forms. I thought of you when I saw it talked about on the news last week, in relation to COVID-19. You were kind enough to write about our very own DNACPR and advance care planning conversations in the British Medical Journal, in an article that went viral. You became quite a strong advocate of these forms, but more importantly, the conversations around them, in light of your advanced cancer—something I think you were quite surprised about yourself.
Initially, when I brought up the topic with you in our clinic, you were a bit taken aback: you said that of course you’d want full CPR, you were living life to the full, despite your very advanced cancer. “Sign me up for full CPR,” is what you said. But the more we talked about it, and the more you learnt about the actual success rates of CPR in people with lots of underlying health conditions like cancer, the more you wanted to opt out of it, and the more you saw a need to be very clear about those views. You became a firm advocate of the TalkCPR video resources we have set up in Wales, which try to bring this topic to closer attention for people who are seriously ill.
Yes, this vexed topic has come up again, after a GP surgery in Wales sent out letters to its patients who were at highest risk, suggesting that they should consider the option of opting out of CPR, especially in light of COVID-19. Understandably, it made a lot of the people who received the letter very frightened indeed. Yet I feel that this letter, sent by a GP, who has since apologised, was really written out of concern and a deeper understanding of what these most extreme treatments in medicine can actually do to our bodies, with such limited success. I wish you had been there for some of these frightened patients, to help explain in your own, light hearted but intelligent way, that opting out of one treatment like CPR, does not mean that lots of other treatments are not still available, too. This is a topic that is deserving of individualised, personal conversations, not blanket approaches.
You had the DNACPR form with you at all times during the last year of your life: during chemo, during the research trials you took part in, and even while having radiotherapy. You joked that the form didn’t make you die any more quickly, but that it meant the people around you knew your wishes, and had them clearly set out in writing. And then you took a flight to Barbados, which you didn’t tell me about, in between chemotherapy cycles, and you say you showed the stewardess your Welsh DNACPR form (that I had signed) and asked whether it might be valid in Barbados, please? You said they nearly had a heart attack, and so did I when you told me this later!
Whether this topic is something we as people can talk about, or countenance, openly, I think really depends on the individual. Doctors and nurses sometimes feel quite guilty and anxious when they bring it up, but they do so because they have seen so many situations where CPR was given by default, and it all felt so terribly wrong. I have had relatives phone me up years later, asking why full blown CPR was given to their dying husband or wife, and whether it could not have been prevented.
COVID-19 has brought all of us closer to understanding how precious life is, but it’s also made me and other healthcare colleagues think more about our own end. I’ve actually filled in an advance decision to refuse treatment, and I’m 45. These conversations are hard and not for everyone. You thought doctors and nurses needed to bring it up more, not less, and you felt patients should bring it up with their healthcare teams and own families/friends far more. I’m grateful for all you did to raise this issue.
Keith, as you would have been at pains to point out, we all need to be better at letting those around us know what we’d want, and what we would not want, when we become too unwell to talk for ourselves.
Take care, wherever you are my friend. I can picture you in my mind, right now, and you are holding up a cold drink on a beach in Barbados. Smiling.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.
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