The effects of the clinical characteristics of dying cancer patients on informal caregivers' satisfaction with palliative care

Abstract

To assess associations between informal caregivers' satisfaction with services delivered to their dying cancer patients and their perceptions of the duration of functional limitation and the duration of various symptoms experienced by these patients, a secondary analysis was conducted on a subsample of the Regional Study of Care for the Dying (RSCD). The RSCD is a retrospective interview survey of family members or others who knew about the last year of life of a random sample of people who died in 20 health districts in the UK in 1990. The subsample consisted of 1858 informal caregivers of people who died from cancer (ICD codes 140-208). More than half (52%) of informal caregivers were highly satisfied with community nurses, compared to 39% and 35% of those who reported high satisfaction with services provided by general practitioners and hospital doctors respectively. Informal caregivers of patients who died from a lymphatic or haematopoietic tissue cancer were more likely than others to report high satisfaction with hospital doctors (47%), while least satisfaction was reported by those who cared for patients who had a neoplasm of the genito-urinary or respiratory/intrathoracic organs (30%). The duration of pain was not significantly related to any of the satisfaction measures. The results suggest the need to take patient clinical characteristics into account in population-based evaluations of palliative care. They also indicate the need for more research to be carried out to assess the reasons behind the dissatisfaction of informal caregivers of patients with respiratory or genito-urinary cancers with services provided by hospital doctors and to detect whether these patients have unmet needs that should be addressed. More research is also needed into the management of symptoms by the general practitioners, especially symptoms pertaining to respiration and incontinence.