Primary care services received during terminal illness.

Abstract

The World Health Organization (1990) provides guidelines on what constitutes effective palliative care. However, it remains unclear whether people with a terminal illness living in their own homes have access to the services they need. This article reports on a study carried out in the United Kingdom on the views of people with a terminal illness (n = 15), their lay carers (n = 10) and bereaved carers (n = 19). Participants were asked about the primary care services they had received and their views on both helpful and unhelpful aspects of service provision. All terminally ill people in the study (except one) had cancer, which raises questions about access to palliative care services for non-cancer populations. Participants had contact primarily with district nurses, general practitioners and Macmillan nurses (specialist nurses). Few other services were received. A number of important issues arose from the data, indicating that lay carers in particular were not always receiving the information and support they needed in order to be effective caregivers.