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

Rebecca Disler; Amy Pascoe; Helen Hickson; Julian Wright; Bronwyn Philips; Sivakumar Subramaniam; Kristen Glenister; Jennifer Philip; Doranne Donesky; Natasha Smallwood

doi:10.1016/j.jpainsymman.2023.06.003

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

J Pain Symptom Manage. 2023 Oct;66(4):301-309. doi: 10.1016/j.jpainsymman.2023.06.003. Epub 2023 Jun 20.

Authors

Affiliations

¹ Respiratory Research@Alfred, Department of Immunology and Pathology, Central Clinical School (R.D., A.P., N.S.), Monash University, Melbourne, Australia; Department of Rural Health (R.D., H.H., J.W., S.S., K.G.), The University of Melbourne, Shepparton, VIC, Australia. Electronic address: rebecca.disler@monash.edu.
² Respiratory Research@Alfred, Department of Immunology and Pathology, Central Clinical School (R.D., A.P., N.S.), Monash University, Melbourne, Australia.
³ Department of Rural Health (R.D., H.H., J.W., S.S., K.G.), The University of Melbourne, Shepparton, VIC, Australia.
⁴ Department of Rural Health (R.D., H.H., J.W., S.S., K.G.), The University of Melbourne, Shepparton, VIC, Australia; Goulburn Valley Health (J.W., S.S.), Shepparton, VIC, Australia.
⁵ Murray Primary Health Network (B.P.), Bendigo, VIC, Australia.
⁶ The University of Melbourne (J.P.), VIC, Australia.
⁷ Department of Physiological Nursing (D.D.), University of California San Francisco.
⁸ Respiratory Research@Alfred, Department of Immunology and Pathology, Central Clinical School (R.D., A.P., N.S.), Monash University, Melbourne, Australia; Department of Respiratory and Sleep Medicine (N.S.), The Alfred Hospital, Melbourne Australia.

PMID: 37343902
DOI: 10.1016/j.jpainsymman.2023.06.003

Abstract

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.

Keywords: Chronic disease; Palliative care; Rural.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Chronic Disease
Cross-Sectional Studies
Hospice and Palliative Care Nursing*
Humans
Palliative Care*