Informal care and terminal illness

This paper is based on a study of the care and services received by people in the year before death in one Yorkshire health authority. In the spring o f 1997 in-depth interviews were carried out with bereaved relatives and car ers of a weighted sample of 33 people who had died in one Yorkshire health authority in the previous 18 months. Deaths where people were judged to hav e needed no input from palliative care services were excluded. The sample c overs a range of different caring arrangements, experiences of caring for s omeone who is dying, support from formal services, place and manner of deat h. All those interviewed were providing some form of informal care or suppo rt to those who died, in some cases 24-h care. The interviews provided a va luable insight into ordinary people's experiences of death and of caring fo r someone who is dying. Most importantly for the purposes of this study, th ey gave insight into their experiences of services to support both the dyin g person and themselves in their caring role. The paper discusses the ways in which care of the terminally ill. is distinctive. It explores the role o f informal care in relation to the wider character and history of the local community, in particular the significance of its declining industrial base , and secondly, the availability of appropriate services to support those c aring for the terminally ill. Finally, it makes recommendations about servi ce planning and delivery which challenge the current framework for providin g services to the terminally ill.