The use of specialist palliative care services by patients with human immunodeficiency virus-related illness in the Yorkshire Deanery of the Northern and Yorkshire region

Abstract

To examine the use of palliative care services by patients affected by human immunodeficiency virus (HIV) in hospices which do not specialize in the care of HIV patients, a tape-recorded, semistructured interview was carried out in 12 hospices in the UK. The interview explored concerns about such provision, as well as actual issues encountered. The study revealed that all 12 hospices accepted referrals for people affected by HIV and had clear working practices on infection control. Between 1990 and 1996, 48 individuals affected by HIV had contact with the hospices. The number of referrals was not related to the size of the hospice. Thirty-nine individuals had a total of 655 days of inpatient care (range 1–35 days); mean length of stay 12.7 days. Twenty-four (62%) died during their first admission. Referrals came from disparate sources and this affected the amount and type of specialist HIV support available to the hospice. The paucity of referrals raised concerns in most of the units as to how to maintain skills. Issues about maintaining confidentiality of diagnosis in a multiprofessional team, and after death were highlighted. All units expressed concerns about the impact on fundraising of HIV-related admissions. Overall it was felt that the hospice units were failing to meet the palliative care needs of the majority of people affected by HIV or acquired immunodeficiency syndrome (AIDS) in the region. Possible reasons for this are given.