Palliating Social Media – a seminar workshop at the Macmillan Professionals Conference in London

Dr Clifford Jones a Macmillan GP Facilitator in Aneurin Bevan Healthboard summarises a workshop seminar he attended at a Macmillan GP conference in London.



Conference Twitter hashtag: #Macmillanpros

What happens to our presence on social media when we die? And how do palliative care patients and professionals use social media?  These were some of the questions posed to a group of (mainly) GPs at the Macmillan Professionals  primary care conference workshop titled ‘Can we palliate social media?’. For example, take a step back and think to yourself where all your digital photos are stored? How many different social media and email accounts do you have? What will happen to your online presence when you die or while you are dying and unwell? The speakers at our workshop were experts in this field, James Norris, a social media strategist and founder of internet start-up Dead Social and Dr Mark Taubert, a Palliative Care Consultant with an interest in social media developments in healthcare.

The discussion moved, as you would expect in a room full of healthcare professionals, to how social media effect the way we interact with our patients. There was a great deal of variation of experience of using social media, from the semi-experienced to novices and reluctant participants. A collective shiver went up the spine of the audience when we were asked ‘do you know what people are saying about you and your surgery online?’ Because the truth is most of us don’t know. Should we find out, should we try to manage what is being said or at least contribute to whatever story is being told about us?

Whatever your opinion is on social media, and their uses in healthcare interactions, you can’t completely put your head in the sand, even if you choose not to take part. As an example of one of our discussions on the day, should the doctor working on a Cystic Fibrosis ward agree to be in that ‘Selfie’, that a patient there may casually suggest to take, perhaps perfectly innocently, as part of their microblog diary of their treatment course? For many people it is perfectly natural to say hello to the world via Facebook at the beginning of the day, before verbalising the same sentiment to those they live with.

And if your social media ‘diary’ is such an integral part of your life, then naturally it will be an integral part of any illness you suffer. Be it by communicating your experience to others via Twitter or Youtube, or even causing concern to your friends by your uncharacteristic absence from Facebook, for instance when you are very ill/ receiving chemotherapy, as an example. Recent high profile social media campaigns by individuals sharing their experience of illness with the world has shown how this can have a positive effect on society as a whole, not just the individual’s own patient experience. (For example the #hellomynameis campaign)

But we also heard from Dr Taubert that there are those for whom a withdrawal from a very active social media life means that they may be in quite a dark place mentally, and his own clinical interactions with patients reflected this. In fact, asking patients about their social media use (or disuse) during their advanced illness, could often be a starting point for significant discussions about how they felt about their image, and sometimes even provided a starting point to talking about death, dying and legacy creation.

Many people live their lives partially through social media. And to some extent, it is postulated, these forms of self-expression can act as palliative social media (article by Taubert et al); the natural evolution of this is that we will begin to tell the stories of our dying, our deaths and how we lived in the same way. Patients and their relatives will now routinely ask about accessing free Wifi services in healthcare settings, and not being able to offer these is becoming somewhat unacceptable, not just to younger people but also older patients with high internet use. Social media for some of us will provide the opportunity to leave a lasting message and legacy to our loved ones. Platforms like Dead Social can even provide a way to communicate important messages after we have died, and have executors who manage passwords, pages and planned postings after our demise. Perhaps a form of advance planning on social media. For those of us who work in healthcare, and in particular palliative care, it is high time to decide on whether we are willing to be part of this communication revolution in as much as we are already part of the lives and deaths of those we treat, or do we just ‘log out’ at this point?

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