Bereavement Follow-Up: What do Palliative Support Teams Actually Do?

Abstract

Care for the family and bereavement follow-up is considered part of good palliative practice. Risk assessment schedules and recommended methods of follow-up are available but the extent to which these are used in practice is not known. This study examines the bereavement follow-up to families and carers by five palliative support teams in England, UK. We report the bereavement follow-up provided and compare the responses of different teams. Data were collected on all patients using standardized records. This included patient and family details and the initial bereavement follow-up after the death. A total of 320 patients were cared for until death: 55% men, 45% women, mean age 64 years. All patients had cancer except one who had AIDS. Civil status was 64% married, 20% widowed, 5% divorced or separated, 9% single, and 2% other. 49% lived with one other person, 19% alone, and the remainder with two or more people. Spouses were the most significant carers at 62%. Bereavement follow-up was offered to 215 or 67% of families, but this varied greatly between the teams (10%-94%). Initial follow-up was made mainly by the nurses (78%). 50% of follow-ups were by visits, 45% by telephone contact, 3% by letter, and 1% other. Reasons for no follow-up included (a) no relatives 12%, (b) staff did not know the family well enough 29%, (c) carers lived outside the visiting area of the team 25%, (d) carers were judged as having no need 23%, (e) carers refused 1%, (e) other 4%, and (f) not recorded 5%. The results indicate the diversity of bereavement follow-up and suggest a need for training, clear protocols, and further research into the needs of families.