Specialist palliative care needs of whole populations: a feasibility study using a novel approach

Abstract

Background: Defining whether people with life-limiting illnesses (PLLI) who do not access specialized palliative care services (SPCS) have unmet needs is crucial in planning and evaluating palliative care. This study seeks to establish the viability of a whole-of-population method to help characterize SPCS access through proxy report.

Methods: Questions were included in a piloted annual face-to-face health survey of 3027 randomly selected South Australians on the need for, uptake rate of, and satisfaction with SPCS in 2000. The survey was representative of the cross-section of South Australians by age, gender, socioeconomic status and region.

Results: One in three people surveyed (1069) indicated that someone 'close to them' had died of a terminal illness in the preceding five years. Of those who identified that a palliative service had not been used (38%, 403), reasons cited included family/friends provided the care (34%, 136) and the service was not wanted (21%, 86). Respondents with income > AU dollars 60000 per year were more likely to report that a SPCS had been used (P = 0.01). People who had cancer as their life-limiting illness were more likely to access SPCS (P < 0.001). The results generate a model comparing SPCS utilization with client benefit. The survey was acceptable to interviewees.

Discussion: Uptake rates of SPCS in this survey are consistent with other South Australian whole population estimates of SPCS utilization. Although there are limitations in this survey approach and the questions asked, this method can be developed to improve our understanding of the characteristics and needs of PLLI and their carers.