Abstract

One implication of social media is that when we die, we live on to an extent through our online presence and digital footprint or legacy. By 2098, for instance, dead Facebook users will outnumber living ones (Newsweek, 2016), effectively making the website into the largest graveyard in the world, albeit in digital form. The terminally ill, as well as their families and friends, can use these internet pages in various ways, as a legacy, tribute and memorial for addressing loss and bereavement.

In recent years, various enterprises, services, and associations have sprung up (e.g. Dead Social, the Digital Beyond, Final Road Map, and the Digital Legacy Association) with powerful implications for linking interactive digital tools like social media and blogging to the work of palliative healthcare professionals. Longer lifespans combined with widespread technological trends are inevitably reshaping experiences and perceptions of death and grief – with compelling questions for how palliative care can use such trends to improve its practices. Depending on how they are used, digital assets and legacies may help support people’s coping and grieving processes, or they may have more negative effects, inhibiting acceptance and prolonging more dysfunctional responses to grief and loss.

Through research into the development of the Digital Legacy movement, and an ongoing programme of semi-structured interviews with hospice staff, technological innovators, patients and bereaved parties, this paper is aimed at critically assessing how effective palliative care might be delivered through various digital legacy services. Implications and conclusions are drawn for finding out and addressing the needs of patients and grieving relatives through online media, integrating digital legacies with existing palliative frameworks to improve care, and the ethical challenges of using new technologies to engage the highly sensitive, taboo subjects of dying and death.