Bringing palliative care to the public: The impact of social media. An interview with Mark Taubert, winner of the 2019 EAPC Clinical Impact Award

Highlights of every EAPC Congress are the EAPC Researcher Awards, which recognise and support the work of scientists and clinicians who make an outstanding contribution to palliative care research. 

We talk to Dr Mark Taubert, winner of the 2019 EAPC Researcher Clinical Impact Award, about his work as palliative care consultant and senior lecturer in the Cardiff University School of Medicine, Wales, UK, and the research that has led to his award.

Who, or what, inspired you to follow a career in palliative care?

Dr Mark Taubert delivers his award-winning lecture at the 16th EAPC World Congress in Berlin.

Dr Mark Taubert: When I worked as a junior doctor, I saw what a lack of palliative care could cause, namely a heavily intervention-focused approach to patients, where care sometimes withdrew when big drugs or investigations were no longer doing the trick, or making things worse. And then medics seemed to think that there was nothing further. For me, the work and the care just continued without that artificial stoppage point, even if we were more focused on, say, pain or nausea control, or were just trying to get someone to their caravan in Cornwall for a last holiday. And I felt the care was just as ‘active’ as the overly clinical interventional approach, in fact sometimes more active. There were several ‘characters’ in palliative care that got me really wanting to make a career of it, including Ilora Finlay, Ian Back and my good buddy Simon Noble. I think with the latter, the Star Wars phrase “When I left you, I was but the learner, now I am the master,” would now most certainly apply.

How do you think social media is changing the way that people view death, dying and bereavement? Is there any evidence that it’s increasing public awareness of palliative care? 

MT: It would certainly appear so. I cannot remember a time when it has been easier to get access to widespread opinion about a matter, for instance from patient and carer representatives on social media. But also, this unlimited access to expertise via online media has perhaps led to a breakdown of previous doctor- patient or nurse-patient hierarchies. That has led to quite a change, in some situations positive, in others not so good. There is a lot of poor-quality information out there, so when we do engage via social media for research and for clinical information we must uphold the tenets of good clinical practice as much as we do in other areas of medicine and social care. And stay polite. My advance care planning work used social media extensively and answers that may have taken me months to find were, on some days, answered in seconds. It can also give clues as to whether a certain idea we have in clinical or non-clinical care is a good one or not, or whether there are sensitivities that we have not considered.

Can you tell us about specific ways that you are using social media during palliative illness?

MT: One example is that here at our Marie Curie Palliative Care Research Centre in Cardiff, we wrote a consensus guide for good ethical practices when conducting research in palliative care social media settings. So there’s plenty to think about, and I lecture on this topic quite a bit. You can miss out on a lot if, as a researcher in palliative care, you don’tlook into social media opinions on certain matters. I also use social media like ResearchGate to connect with other researchers in my field, which has led to publications with international colleagues. I’ve written an editorial on this in BMJ Supportive and Palliative Care, if anyone wants to look at some good starting points.

Mark receives his award from Prof Sheila Payne (left) and Prof Lieve Van den Block. (Photograph by Stefan Zeitz).

MT: I have used social media as a way to encourage people with advanced and serious illness to consider making their wishes clear. Thousands have watched the videos on my website on why we should consider filling in ‘Do Not Attempt Cardiopulmonary Resuscitation’ forms, and many have responded so positively. I now realise that as healthcare professionals the sensitivities we have about certain topics are much greater than those of our patient and carer groups. My initial concern that the videos might be ‘too much’ was quickly dispelled by patient/carer forums who encouraged me to publish them as soon as possible – and wondered why no one had done this already.

The videos have been promoted via social media, in particular Twitter, and you can see them, plus comments from users across the world, if you type the hashtag #TalkCPR into the Twitter search engine.

Can you tell us about your experiences in working with television and radio on palliative care? What tips would you share with others who might find themselves behind the camera?

MT: I’ve learned that people are interested in all aspects of our work in palliative care, no matter how ‘normal’ it seems to us. The things my patients and their loved ones say to me can resonate in my head for months, even years, sometimes inspiring me to write something down. While this is often not to be shared, sometimes I feel it needs to be seen further afield. I never thought I’d be brave enough to go on TV, let alone do a Ted Talk, or BBC Horizon documentary, but when I transmitted what patients, carers and colleagues had taught me over the years, I relaxed a bit. It becomes far less about you, and far more about what matters most to all of us in our lives.

I think that when we as palliative care workers go on television, on radio, online, or write, or do whatever we can to help change things, then every moment is a little victory march. We all have one thing in common: if we love, we also grieve and the two are intertwined. The joy and pain we experience are both subsumed in the knowledge that one day we’ll die. Hearing people talk about this, and becoming part of that important conversation, is why all of us should aim to put our point across to the wider world.

What does winning the EAPC Clinical Impact Award mean to you?

MT: When I learned I had won, I was elated. But without being overly humble, I was also perplexed, for when you are competing on a world stage with so many worthwhile projects you can’t quite see your own one winning. By coincidence, I had on a song by Nina Simone, ‘Mississippi goddam’. It is a strange song, and she manages to get so much rage and anger into it, yet it is liberating at the same time. Nina Simone was quite a rebel who, when writing this song, was protesting against a system that could not see that it was committing monumental wrongs on a daily basis. Music can be such a call to arms, a wake-up call, a reminder that there’s always more that can be done. The combination of the song and the news of my award strengthened my resolve to carry on my work with TalkCPR, which I feel is also a bit rebellious and not without controversy.

I’ve recently taken on a lead national role as National Strategic Lead for Wales for Advance and Future Care Planning. We created a website that showcases a lot of the great work that is going on in Wales. As palliative care slowly moves from rebel to mainstream, it is important to remember that we should not conform too quickly and fall in with the wider systems. I hope to forge links with many co-rebels across the world to work hard on how we define and frame Advance and Future Care Planning, and maybe even how we define palliative care.

There’s work to be done, so let’s use social media wisely to help us achieve this vision. To paraphrase Nina Simone: “Sometimes we have to sound like gravel, and sometimes like coffee and cream.” 

What’s the last song you want to hear before you die? Your recent article in the Washington Post  elicited a massive response from people who wished to share the songs they would most like to hear before they die. So now it’s your turn!

MT: The last song? Well, I don’t want to complicate things, but we all know in palliative care that the exact last moments of life are not so easy to predict, so timing would have to be factored in. So, with my advance care planning hat on, I would ask that The Doors’ entire debut album ‘The Doors’ is played on loop, and I’d hope to breathe my final breath to ‘Soul Kitchen’, but if not, the other songs on that album are pretty fantastic, too. What a question to ask! 🙂

Links

  • Read the abstract of Mark’s plenary lecture, Bringing palliative care to the public: The impact of social media, in the EAPC Book of Abstracts for the 16th EAPC World Congress, Palliative Medicine, May 2019. Download a copy here.
  • Follow the EAPC World Congress at #EAPC2019 and @EAPCvzw
  • View Mark’s Cardiff University profile.
  • Twitter @DrMarkTaubert
  • Mark is a member of the EAPC social media team and you can read two of the posts he has contributed to the ‘Arts and Palliative Care’ series on the blog here. (See ‘Rebel, Rebel’ and ‘Room for some art’.
  • Read more interviews on the EAPC blog with Dr Maria Heckel, winner of the EAPC Palliative Medicine Early Researcher Award, and Dr Geana Paula Kurita, winner of the EAPC Post-Doctoral Award.
  • VIEW THE EAPC 2019 WORLD CONGRESS E-POSTERS
    For the next few weeks, for a limited time, you can view the electronic posters submitted to the EAPC World Congress. You will have the option to like, view and download posters of interest including some from Mark Taubert. Click this link to learn more.
This entry was posted in 16th EAPC World Congress Berlin, EAPC Researcher Awards, SOCIAL MEDIA and tagged . Bookmark the permalink.

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