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How has society changed over recent years? The widespread mass use of social media tools such as Twitter and Facebook is one huge and very visible transformation. The conversations that once occurred in the schoolyard or at work coffee breaks are now happening on-line. However, what about those conversations with deeper connotations about more serious issues, for example, about death and dying? Could conversations about these emotive topics move to the world of social media successfully as well? Could social media even promote and facilitate these conversations which are usually so difficult to commence? In their Feature piece Palliative Social Media, Taubert et al1 try to sift through the many intricacies of how social media may get us talking more about dying and death.
Tweeting from my deathbed
As a patient with a rare and incurable intra-abdominal sarcoma, I have become an avid exponent of social media, in particular of the microblogging platform Twitter. I intend to tweet for as long as I possibly can, sharing my experiences, in an attempt to open up much needed dialogue in society about the end of life. I have even planned a hashtag for my final days (#deathbedlive). There has been much interest and intrigue in this plan from many sources and even just proposing it as an idea has definitely sparked a debate.2 There are those who feel it is inappropriate to share such a personal and private time with the world. However, the vast majority of people have viewed my idea as a positive move in the right direction towards a society that is more open and accepting of dying.
Can a 140-character tweet really convey a serious message? I firmly believe it can. It is perfectly possible to share feelings, symptoms and fears within the character limit and there is always the possibility of accompanying blogs to explore more complex issues in greater depth. Tweeting takes very little physical effort and is far less intrusive than, for example, allowing a documentary maker into my life. I personally find writing an extremely therapeutic exercise, with my tweeting and blogging helping me to rationalise the difficulties and decision making I face every single day with regard to my health. Being a member of the Twitter community is also like belonging to a huge support group, which you can access any time of day or night.
Use of social media by palliative care practitioners
There has been an explosion in the number of blogs about living with cancer and many other chronic health conditions over the past few years. Sharing experiences with other patients and healthcare professionals is becoming more and more commonplace.3 As a doctor I find these sources of insight incredibly useful to help me better understand the patient journey and improve the care I give, particularly with regard to communication. We need as a profession, to recognise and value what our patients are going through not just physically, but psychologically, emotionally and spiritually in order to provide truly holistic care. Blogs allow us easy access to patients’ thought processes and fears that often would not be shared openly in a consultation room or on a ward.
The palliative healthcare community is also gradually taking to social media to debate how we conduct end of life care, network with other colleagues across the care sector, share research findings and best practice and learn from patient experience. I find the tweet chats using the hash tag #hpm extremely informative and educational. Many of the journals tweet links to their articles, including this one (@BMJ_SPCare), the Jounal of Palliative Medicine (@PalliativeMed_j) and the International Journal of Palliative Nursing (@IntJPalliatNurs). In a recent commentary, Craig Nicholson describes who to follow on Twitter in the palliative care world to get started.4
As clinicians I feel we all need to become more aware of social media as a concept and more aware that our patients may be real-time tweeting their experiences of the care we deliver. I was recently a hospital inpatient with a serious postoperative infection. I shared my observations of the care I received throughout the stay and collated my tweets into a Storify.5 This had a massive response from a very varied community of readers. Feedback of this sort about experience is hugely valuable and I believe if embraced could lead to real quality improvement in patient care.
Digital legacies and the future
So what happens to my own social media when I do die? My Twitter feed and Facebook page will exist forever as a legacy of the life I lived. I find this deeply comforting to know that my friends and family will be able to easily access my thoughts and a record of happy memories. I have also saved tweets in advance for my husband to post once I have died. More formal digital legacy tools such as http://www.deadsoci.al are also now appearing which allow a person to store messages and pictures to post on social media platforms automatically following their death.6
I believe that openness is inextricably linked to acceptance. When considering dying, acceptance is usually the most important step to allow planning for a good death to occur and striving to achieve a person's final wishes. By being open and sharing my experience using social media tools, I hope that more conversations about the end of life will reach more parts of society allowing more good deaths to happen.
Competing interests None.
Provenance and peer review Not commissioned; internally peer reviewed.
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