Service Level Characteristics of Rural Palliative Care for People with Chronic Disease

• Published in: Journal of pain and symptom management Vol. 66; no. 4; pp. 301 - 309
• Main Authors: Disler, Rebecca, Pascoe, Amy, Hickson, Helen, Wright, Julian, Philips, Bronwyn, Subramaniam, Sivakumar, Glenister, Kristen, Philip, Jennifer, Donesky, Doranne, Smallwood, Natasha
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.10.2023
• Subjects: Chronic disease; Palliative care; Rural; Rural; Palliative care; Chronic disease
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2023.06.003

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. This study aimed to understand existing rural service structures regarding the availability and provision of palliative care for people with chronic conditions. 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. 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%). 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.