End-of-life and living technologies, the role of telemedicine in palliative care of children and young people

Abstract

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 Tele-medicine 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.