Dr Mark Taubert, Consultant in Palliative Medicine, Marie Curie Centre Cardiff and Vale; University Hospital Llandough; Velindre Hospital NHS Trust, Wales.
A medical colleague recently told me about a dying patient, who posted ‘Dead’ in her online blog status update in the final stages of her cancer diagnosis. She, or a relative/friend, had presumably posted this message using a smart phone device from her hospital bed. The ward where she was being treated immediately received phone calls from grieving and anxious friends and relatives. “Is she really dead? When did it happen?” The patient was very sick, but not dead. But it was, as it turned out, her last ever online status update.
‘Final words’ are not the only new phenomenon in our rapidly changing social media world that have strong relevance to palliative care. It is not uncommon to hear stories about relatives of patients publishing online photographs of their loved ones in the final hours or when they have died. Not everyone finds this appropriate, while others see no problem with this.
But we are by no means the first to reflect on the publication of individuals’ death and dying. Let us look back at Victorian Britain, to compare. Dying was widely accepted as part of everyday life in the 19th century. Deathbeds were a common topic within the literature of that time and ‘deathbed watches’ were commonplace. Charles Dickens for instance, in his novel ‘The Old Curiosity Shop’, describes Little Nell’s deathbed moments poetically and beautifully.
This period also introduced the first widespread use of photography, largely reserved for very important life events, births, marriages and deaths. Photographs of dying and deceased patients were therefore common, and started to replace deathbed paintings. The last words spoken by someone who was dying were seen as very important, and part of the deathbed watch would be to note down anything the person might say, in case it was their final utterance.
Given this historical interest in terminal words and last images, perhaps our modern phenomenon of final status updates and photographs will not be seen as all that curious by future historians, looking back at our times. Blogging final words online may well be the 21st century equivalent of a Victorian deathbed whisper.
And importantly, how many of us working in palliative care pay attention to this part of a person’s existence? Is there any role in us knowing and documenting that someone is very active online, and focus on it as we do on occupational, family and spiritual aspects of someone’s life? Should our medical notes come with a new heading, entitled ‘Social Media History’? And what would the person like to see happen with their online social media profile, once they have died?
Social media microblog site providers may need to review and adopt policies to not take ‘off-line’ those profiles that have not been used for years because the former user passed away, so that future generations can keep in touch with the former life of a relative, friend or loved one. A ‘Memorial Page’ function has been available for (dead) Facebook users for some time now.1 This will, naturally, bring with it discussions surrounding privacy and appropriateness and may cause considerable disagreement within families of people who have passed away. A ‘Rest in Peace’-App may sound like a bad joke to us now, but future generations may find this quite normal.
There will be some tough questions to ask and some matters of taste and decency to be discussed in these fast-paced, digital times, and we will not all agree, but as palliative care professionals, we should also not look away.
1. Moore M. Facebook introduces ‘memorial’ pages to prevent alerts about dead members, The Telegraph, 27 October 2009, http://www.telegraph.co.uk/technology/facebook/6445152/Facebook-introduces-memorial-pages-to-prevent-alerts-about-dead-members.html (Accessed 15 January 2013).
Let’s hear your views…
Please leave a comment below or contribute a post. Full instructions on preparing and submitting a post are in our Guidelines for Contributors.