Service level characteristics of rural palliative care for people with chronic disease

Context: Despite clear benefit from palliative care in end-stage chronic, non-malignant disease, access for rural patients is often limited due to workforce gaps and geographical barriers. Objectives: This study aimed to understand existing rural service structures regarding the availability and provision of palliative care for people with chronic conditions. Methods: A cross-sectional online survey was distributed by email to rural health service leaders. Nominal and categorical data were analyzed descriptively, with free-text questions on barriers and facilitators in chronic disease analyzed using qualitative content analysis. Results: Of 42 (61.7%) health services, most were public (88.1%) and operated in acute (19, 45.2%) or community (16, 38.1%) settings. A total of 17 (41.5%) reported an on-site specialist palliative care team, primarily nurses (19, 59.5%). Nearly all services (41, 95.3%) reported off-site specialist palliative care access, including: established external relationships (38, 92.7%); visiting consultancy (26, 63.4%); and telehealth (18, 43.9%). Perceived barriers in chronic disease included: lack of specific referral pathways (18; 62.1%); negative patient expectations (18; 62.1%); and availability of trained staff (17; 58.6%). Structures identified to support palliative care in chronic disease included: increased staff/funding (20, 75.0%); formalized referral pathways (n = 18, 64.3%); professional development (16, 57.1%); and community health promotion (14, 50%). Conclusion: Palliative care service structure and capacity varies across rural areas, and relies on a complex, at times ad hoc, network of onsite and external supports. Services for people with chronic, non-malignant disease are sparse and largely unknown, with a call for the development of specific referral pathways to improve patient care.