Palliating social media in palliative care

Introduction: Social media and especially microblogs are allowing society to keep a dynamic narrative of their thoughts regarding taboo topics such as death and dying. Patients and relatives in hospices and other palliative care settings are blogging about their experiences towards the end of life, at point of death and after death has occurred. Methods: The search term “End of Life Care” was employed within the Facebook and Twitter search engines to identify the ten largest groups followed by the social media using public. The top 10 Facebook groups/pages and the top 10 Twitter accounts dealing with ‘End of Life Care’ were identified and aggregated into a database. Main themes were agreed and discussed by two investigators, agreeing super-ordinate topics. Results: Numerous groups that focus on End of Life Care were identified. Themes arising included • uses of social media as a ‘therapeutic outlet’, • news, updates and information on end of life care policy and research developments • live blogs of patients and relatives receiving care • discussing treatment approaches, especially non-medical interventions like massage therapy • support of charitable organizations dealing with end of life care. Conclusion: Findings of this analysis suggest that End of Life Care communities contain a plurality of online users, including patients, family, researchers, healthcare staff and those offering allied services. For patients, blogging may serve as therapeutic outlets, and allow them to share their thoughts and fears. Social media may serve as virtual ‘memory boxes’ and help to create digital legacies for those left behind. Social media will play an ever-increasing role from birth to death. Services such as DeadSocial can provide status updates on Facebook and Twitter for future dates beyond the user’s death. Palliative care workers should be responsive to this, critically evaluate available resources, and debate their role within this context