Researchers from the Louis Dundas Centre for Children’s Palliative Care and the Marie Curie Palliative Care Research Unit carried out a literature review on preference for place of death for children and young people. However, the reviewers only managed to identify nine relevant studies, highlighting the lack of research in this area.
In the UK and Europe, there is a push for more care to be provided in the home and for an increase in home deaths, with research among adults suggesting this is the prefered place of death. However, there has been very little research into the prefered place of death among children, young people and their families.
In their conclusions, the authors discuss the idea that place of death may not necessarily be a good indicator of a good death, and that place of death could be misleading as a proxy measure of quality. They highlight the lack of evidence that a death at home (or in hospice or hospital) is ‘better’, and suggest that the focus of care should be on a range of factors that make for a ‘good death’.
The authors conclude: ‘The important task ahead is, of course, to continue the search for factors more basic and general than [place of death], which allow us to reliably gauge the quality of families’ experience and of the care that has been rendered.’
‘Preferred place of death for children and young people with life-limiting and life-threatening conditions: A systematic review of the literature and recommendations for future inquiry and policy’ by Myra Bluebond-Langner, Emma Beecham, et al has been published online, ahead of print, by Palliative Medicine.