Rural Clinical School - Research Publications

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    Service Level Characteristics of Rural Palliative Care for with Chronic Disease
    Disler, R ; Pascoe, A ; Hickson, H ; Wright, J ; Philips, B ; Subramaniam, S ; Glenister, K ; Philip, J ; Donesky, D ; Smallwood, N (ELSEVIER SCIENCE INC, 2023-10)
    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.
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    Burden of diagnostic investigations at the end of life for people with chronic obstructive pulmonary disease
    Ross, L ; Taverner, J ; John, J ; Baisch, A ; Irving, L ; Philip, J ; Smallwood, N (WILEY, 2021-11)
    BACKGROUND: Chronic obstructive pulmonary disease (COPD) is an incurable, chronic condition that leads to significant morbidity and mortality, with most patients dying in hospital. While diagnostic tests are important for actively managing patients during hospital admissions, the balance between benefit and harm should always be considered. This is particularly important when patients reach the end of life, when the focus is to reduce burdensome interventions. AIMS: To examine the use of diagnostic testing in a cohort of people with COPD who died in hospital. METHODS: Retrospective medical record audits were completed at two Australian hospitals (Royal Melbourne Hospital and Northeast Health Wangaratta), with all patients who died from COPD over 12 years between 1 January 2004 and 31 December 2015 included. RESULTS: Three hundred and forty-three patients were included, with a median of 11 diagnostic testing episodes per patient. Undergoing higher numbers of diagnostic tests was associated with younger age, intensive care unit admission and non-invasive ventilation use. Reduced testing was associated with recent hospital admission for COPD, domiciliary oxygen use and a prior admission with documentation limiting medical treatment. Most patients underwent diagnostic tests in the last 2 days of life, and 12% of patients had ongoing diagnostic tests performed after a documented decision was made to change the goal of care to provide comfort care only. CONCLUSION: There were missed opportunities to reduce the burden of diagnostic tests and focus on comfort at the end of life. Increased physician education regarding communication and end-of-life care, including recognising active dying may address these issues.