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Social media and palliative care

Author: Dr Mark Taubert, Consultant in Palliative Medicine, Velindre Cancer Centre & Cardiff and Vale University Health Board
15 April 2014

Should asking patients about social media use be part of a holistic palliative care assessment, or is it none of our business?

On a recent ward round in our cancer centre, I made a mental note of all the smart-phone and tablet devices I saw on the tables of inpatients.

All patients I saw had a mobile phone of some sort near them. A minority had a phone that was for phone calls only, most had modern smart phones. I did not see any laptops, but two patients had tablet computers. Several patients in each four-bedded unit were looking at their devices with deep concentration.

At the time I did not ask how many people were accessing social media micro blogging sites, like Facebook or Twitter, but evidence suggests that this is growing significantly in healthcare settings. In fact in 2012 an elderly lady gave me a review on her Twitter blog, from her hospital bed. She promised it would be good, but I never dared check.

Social media in all its shapes and forms has entered most parts of modern life, and is hard to escape from. Sites and apps for the likes of Twitter and Facebook are easy to access, and many people interact with each other across the globe, sharing videos, photos and life-events. It is common to see people glued to smartphone and tablet screens on trains, restaurants and in waiting rooms. Our outpatient department is filled with people gazing at large phone screens, blue light reflecting from their eyes, deep in thought. Budden and colleagues have described and defined this contemporary ‘social network generation’1.

Of course this has had an impact on palliative care. Not only can you ‘like’ your local hospice on Facebook, you can also stay in touch much more easily with relatives, friends and acquaintances who are approaching the end of their lives.

And through many microblogs the lives and thoughts of terminally ill patients are catching the attention of internet users, who otherwise may only have been confronted by death and dying within their own social circles.

Photographs and videos, now so easily made with omnipresent cameraphones, are capturing moments prior to and after death, and are being uploaded to personal and public sites. Charities are often very active within social media, and some actually openly encourage the increasing debate about palliative and end of life care. Social media apps like DeadSocial even let you prepare status updates, blogs and tweets for the time after you have dies.

Part of a holistic palliative care assessment?

I have started asking some patients I see in general hospitals, hospices and the local cancer centre whether they might need internet access or are active social media users, as part of a holistic ‘social’ palliative care assessment. The answers I get are surprising and sometimes unexpected. There are a number of people in their 90’s who have taken to Facebook, Instagram and Twitter. For some, being able to go online to see what is happening to their friends and relatives, can ease the many hours spent alone on a ward.

Patients who are neutropenic, for example, and are trying to avoid exposure to infection from visitors, have told me that this can be crucial in decreasing their loneliness.

A young patient was most distraught one Monday morning when I saw him, not because he was in pain or feeling nauseated, but because the hospital wifi-connection had been broken all weekend and the ward was in a poor reception area and did not have a 3G signal. He was very ill, but still liked to communicate with his friends and his girlfriend via social media and was online most of the time.

If we were to dig deeper into our assessments of social media use in palliative care settings, then we may also have to ask patients whether they have stopped using these sites and blogs at some point.

A female patient undergoing chemo-radiotherapy once expressed to a colleague that she had lost the confidence in updating or interacting with her blog. Deeper questioning revealed that she had been an avid poster of photos, in particular photos of herself. Now that she had lost all her hair, she no longer did this. Her self-esteem had gone, and she had not logged into her account since. The anthropologist Daniel Miller has an interest in social media use in hospices, and he writes convincingly about his experiences and conversations with patients. One of his blogs that was particularly fascinating was about the meaning of ‘Selfies’ and ‘Uglies’ within social media.

Just a fad?

If you are reading this and think this is all a fad and will blow over, think again, especially if you are a health or social care practitioner. Headlines such as 'NHS future could see you Facebook your doctor' are starting to excite the public imagination.

For example, a recent survey among patients with inflammatory bowel disorder and chronic viral hepatitis showed that a majority of these patients would welcome the use of social media as part of their illness management2.

Perhaps this seems a little while off, but it is indisputable that the social media explosion will have a huge impact on how medicine is practised, and I cannot see us getting away from a future where an clinical ‘Tweetchat’ or similar is a normality. Until then, consider dropping social media use and internet access into your conversations with patients when you assess them. You may be the only one who asks, and patients may be extremely grateful to know that there is freely accessibly internet in your organisation; additionally, it may start off a conversation about self-worth, fear, body-image or loss of confidence.

References

  1. Budden CB, Budden MC. The social network generation and implications for human resources managers. Journal of Business and Economics Research 2009;7:8-12
  2. Timms C, Forton DM, Poullis A Social media use in patients with inflammatory bowel disease and chronic viral hepatitis Clinical Medicine 2014 Vol 14, No 2: 215-216
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