End of life and ‘living technologies’: The role of Telemedicine in palliative care of children and young people

For many, the home environment is the embodiment of independent “living” in which technology is used to enhance and support good quality of life. Home assistive technologies were initially developed to support people with special needs and elderly people and among other things to help them remain within their homes and communities for as long as is feasible and safe. Our work focuses an the other end of the technology and design spectrum: one where Telemedicine is used to support optimal palliative care at home, for children at the end of their lives. We present preliminary results of a pilot study. We argue that remote care provision should be considered as an integral part of care, to complement and enhance current end of life care as well as providing advice and support, regardless of where patients reside. We advocate that future developments in assistive living technologies adopt an increasingly holistic “whole-of-life” approach, including the too often understudied and under-reported end-of-life phase.