Living beyond death; who cares?
Dr Erica Witkamp , Rotterdam University, Rob Bruntink, Journalist, Owner of Bureau MORBidee and Judith Rietjens, Associate professor, Dept. of Public Health, Erasmus University Medical Center
People increasingly do not only live their physical life but also have a digital life. They store parts of their life on electronic devices, like photos and documents, and expand their life to the internet and social media. Besides, more and more people create one of more new digital personalities, like an avatar in games. What will happen to these digital aspects of human lives when physical lives come to an end? And how will either the loss or the use of valuable digital data affect the bereaved relatives?
Talking about digital legacy and digital death is still in its infancy. In the Netherlands we started our research on this topic in 2019. We are involved in several projects:
1. “The Death Lab” (In Dutch: “De Dooie Hoek”) at Lowlands Festival, a yearly three-days music and art festival with about 60.000 visitors. We asked more than 500 visitors to complete a questionnaire on their attitudes towards and preferences for their digital legacy.
2. Subsequently some students studied attitudes and preferences of healthy people for their digital legacy.
3. On a small scale we investigated among nurses and nurse students their attitudes towards the role of nurses to support patients at the end of life to prepare for their digital legacy.
4. Together with a filmmaker and medical students, we developed series of short films where older participants with a limited life expectancy look back at their lives and share valuable lessons and insights with their family members.
In all projects one theme really emerged: the lack of awareness. The various participants indicated that they had hardly ever thought about what will happen to their traces on the internet once they died. In healthcare the participants believed the arrangement of digital legacy is one’s own responsibility. Therefore we developed three short videos to evoke awareness, both in the general public and among professionals. The videos turned out to support the discussion about the topic with citizens as well as with nurse students in focus groups.
But we have to speed up! Concomitant with rapidly growing opportunities to (infinitely?) continue life after death the concerns are growing too; concerns over dealing with this new dimension of palliative care, it’s value for bereaved relatives and the many ethical and practical challenges; concerns for our societies, for patients and families, for healthcare professionals and for researchers. Who cares?
Dr. , Professor Care for Family Caregiving, Faculty of Nursing and Research Center Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, The Netherlands.
Rob Bruntink, Journalist, Owner of Bureau MORBidee, The Netherlands.
Judith Rietjens, Associate professor, Dept. of Public Health, Erasmus University Medical Center, The Netherlands Judith Rietjens.
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