If you are reading this, chances are that you have some kind digital identity*. How many email addresses do you have? Do you have Facebook and Twitter accounts? Flickr, LinkedIn, MySpace, Spotify…? Do you have your own blog/s, too?
If you have one or more of the above, have you considered what will happen to all this digital information about you when you die? Because, let’s face it, we will all die sooner or later. And if you do nothing about it, the little digital information dots that we leave around the Web will stay there, as long as the Web exists. Who will inherit your digital estate? How would you like them to manage and distribute it?
This might sound frivolous and irrelevant when one is faced with illness and the end of one’s life. In fact, some studies have reported that an 8% of people are not concerned about this at all. However, the vast majority of Web users have given it some thought, although only a minority (13%) have acted on it. Some people now choose to include this in their will. There are also companies that offer services such as storing all your passwords and relevant data, and passing it on to your loved ones following your instructions. In other words, they offer to manage and distribute your digital estate after you die. Needless to say, there are enormous ethical and practical issues regarding this. For instance: how can you know that the company you chose to do that will actually still be in business when you die? And what happens if the company servers get hacked?
Digital technologies have brought us joy and knowledge, but with this have come some challenges attached. This blog entry has no solutions to offer, but hopefully it will raise awareness and give you a starting point to gently start thinking about your digital legacy.
Think of the value of your digital dots. Consider including this in your will. Talk to your loved ones about it.
*Please note this post refers only to digital identity on the Web. It does not deal with digital information you may have in your computer/s or other devices.
The BMJ recently published a Personal View article by William Tosh, an anesthesiologist who shares his experience of looking after his father during his last days of life: Choosing to die at home can be tough on the family. In it, he describes the feelings of guilt that he and his close family felt whilst trying to support the best they could his father’s wishes to die at home. Tosh talks about how he struggled with feelings of guilt and resentment, having his home “invaded” with medical devices and staff. His father received excellent end of life care, however he questions if dying at home was the best option in that particular case. He explains how
feelings of panic […] began to surface: there was now nowhere for the family to escape.
The Last Will, by Nikolay Bogdanov Belsky
I think Tosh has written a very brave letter, sharing his emotional roller coaster and exposing personal feelings in a sensitive manner. More often that we would like to admit, another physician’s account of experience is much more valued than a lay person’s similar account. In this sense, Tosh’s text is a very powerful one, since it brings to the arena a topic that it is not always easy: when the dying person’s wish to die at home is not completely shared by their relatives.
In the last decade or so, there has been a shift in palliative care, acknowledging that most people prefer to die at home, and hence teams and policy makers have been advocating for it. On the other hand, some literature has highlighted an underlying issue: the dying person’s views may not be the same as their carer’s views. In other words, I may want to die at home, but my family may not be prepared for it. This can bring feelings of personal inadequacy (am I a bad person? Don’t I love my father/mother/husband…?), guilt, isolation (it is not easy to talk about this) and resentment. Tosh’s letter illustrates this very well.
I do realise that I am exposing my own reactions to Tosh’s article, and of course my opinion is biased by my own experience of helping dying people and their relatives in a Mediterranean culture. Nonetheless, I think articles like his are a valuable addition and much needed, because they bring attention to a sensitive topic and encourage us researchers and clinicians to discuss it in the open. There are probably no easy answers: each family is a different world, and each disease is different experience.
What is your view?