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Deathbed tweet sent to memory cloud

12
Feb
Francois Broussais on his deathbed by Charles Blanc
Consider the following situation: a patient in a hospital ward posts ‘Dead’ in her/his online microblog status update. She/he is in the final stages of a terminal illness. She/he, or a relative/friend, posted this message using a smart phone device from her/his hospital bed. The ward receives phone calls from those who have read the status update. “Is she really dead?” The patient is very sick, but not dead. But it is, as it subsequently turns out, her/his last ever online status update. This really happened, and similar stories are likely to recur. Our digital society now captures all life moments, from gestation to death. 
And what is more, these final words are not the only phenomenon in our rapidly changing digital world that have strong relevance to healthcare and terminal illness. It is not uncommon to hear stories about relatives of patients publishing online photographs or videos of their loved ones in the final hours or when they have died. To some, this is about capturing a moment in time, to perhaps document or chronicle it, like a diary post, for future generations to see and share in the future. 
But we are by no means the first to scratch our heads at the rights or wrongs of publishing individuals’ death and dying moments. In Victorian Britain, for example, dying was widely accepted as part of everyday life. Deathbeds were a common topic within the literature of that time and ‘deathbed watches’ were commonplace. 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 health and social 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? Some patients in hospitals and hospices want help creating memory boxes, for instance for their very young children. But more and more, this information, be it in the form of photos, videos and diary entries can be created online, and work is ongoing to make available such memory clouds. [BBC article link]
Some social media microblog site providers are already reviewing and adopting policies to not take ‘off-line’ those profiles that have not been used for years because their 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. [Guardian link]This will, naturally, bring with it discussions surrounding privacy and appropriateness and may cause considerable disagreement within families of people who have gone. A 'Rest in Peace'-App may sound like a bad joke to us now, but future generations may find this quite normal. We are not yet immortal, but our memories live on in an ever more digitalized way.
References
Lee D.  Life goes online after death with ‘memory boxes’
 http://www.bbc.co.uk/news/technology-11900774
Moore M. Facebook introduces 'memorial' pages to prevent alerts about dead members, The Telegraph
http://www.telegraph.co.uk/technology/facebook/6445152/Facebook-introduces-memorial-pages-to-prevent-alerts-about-dead-members.html 
Dr Mark Taubert, Consultant in Palliative Medicine, Marie Curie Centre Cardiff and Vale; University Hospital Llandough; Velindre Hospital NHS Trust, Wales. 

Consider the following situation: a patient in a hospital ward posts ‘Dead’ in her/his online microblog status update. She/he is in the final stages of a terminal illness. She/he, or a relative/friend, posted this message using a smart phone device from her/his hospital bed. The ward receives phone calls from those who have read the status update. “Is she really dead?” The patient is very sick, but not dead. But it is, as it subsequently turns out, her/his last ever online status update. This really happened, and similar stories are likely to recur. Our digital society now captures all life moments, from gestation to death. 

And what is more, these final words are not the only phenomenon in our rapidly changing digital world that have strong relevance to healthcare and terminal illness. It is not uncommon to hear stories about relatives of patients publishing online photographs or videos of their loved ones in the final hours or when they have died. To some, this is about capturing a moment in time, to perhaps document or chronicle it, like a diary post, for future generations to see and share in the future. 

But we are by no means the first to scratch our heads at the rights or wrongs of publishing individuals’ death and dying moments. In Victorian Britain, for example, dying was widely accepted as part of everyday life. Deathbeds were a common topic within the literature of that time and ‘deathbed watches’ were commonplace. 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 health and social 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? Some patients in hospitals and hospices want help creating memory boxes, for instance for their very young children. But more and more, this information, be it in the form of photos, videos and diary entries can be created online, and work is ongoing to make available such memory clouds. (1)

Some social media microblog site providers are already reviewing and adopting policies to not take ‘off-line’ those profiles that have not been used for years because their 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. (2) This will, naturally, bring with it discussions surrounding privacy and appropriateness and may cause considerable disagreement within families of people who have gone. A 'Rest in Peace'-App may sound like a bad joke to us now, but future generations may find this quite normal. We are not yet immortal, but our memories live on in an ever more digitalized way.

Dr Mark Taubert is a Consultant in Palliative Medicine at the Marie Curie Centre Cardiff and Vale; University Hospital Llandough; Velindre Hospital NHS Trust, Wales. 

In light of this discussion of our digital immortality, you might be interested to join philosopher Stephen Cave at our next secular Sunday Sermon on the subject.  Click here for more information.

References:
1. Lee D.  Life goes online after death with ‘memory boxes’ 
http://www.bbc.co.uk/news/technology-11900774

2. Moore M. Facebook introduces 'memorial' pages to prevent alerts about dead members, The Telegraph
http://www.telegraph.co.uk/technology/facebook/6445152/Facebook-introduces-memorial-pages-to-prevent-alerts-about-dead-members.html 

Image: Francois Broussais on his deathbed - Etching by Charles Blanc (1813 - 1882)

 

Posted by Dr Mark Taubert on 12 February 2013

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