Populations who die without specialist palliative care: does lower uptake equate with unmet need?

Background: In palliative care, the target population (all people with life-limiting illnesses and their family/caregivers) and the complexity of their needs from diagnosis to bereavement should define the subpopulation who access specialist palliative care services (SPCS). Have caregivers of patients who have not accessed SPCS had their needs met? Methods: As part of a broader state-wide randomized face-to-face population health survey over six years (18 224 interviews, 71 % response), questions were asked of people bereaved in the previous five years when someone close to them died an 'expected' death (39% of respondents). Questions included respondent demographics, the diagnosis of the deceased and, for one year, whether SPCS was of benefit (if used) or needed (if not used). Differential uptake rates were calculated for diagnosis, income, country of birth and age and 2 X 2 tables reflecting the accuracy of match of service with caregiver needs were generated for each group (accuracy = true positives + true negatives/total) *100. Results: Uptake of SPCS was significantly lower in people with a non-cancer diagnosis (40% versus 62%; P = 0.0001), lower income (56% versus 61 %; P = 0.0006) and people born where English was not the first language (52% versus 58%; P = 0.0096). The only subgroup where the accuracy of matching between palliative care service uptake and identified needs was lower than the overall average (83%) was where cancer was not the life-limiting illness (69%; cancer 86%). Discussion: SPCS under utilization has previously been described in the population subgroups explored in this study and assumed to equal unmet needs and poorer outcomes. Caregiver responses suggest that, except for people with a non-cancer diagnosis, lack of service uptake may not represent unmet needs. These results are limited to people with caregivers.