Authors
  • Rebecca Disler1,
  • Amy Pascoe1,
  • Helen Hickson2,
  • Julian Wright2,
  • Julian Wright3,
  • Bronwyn Phillips4,
  • Sivakumar Subramaniam2,
  • Sivakumar Subramaniam3,
  • Kristen Glenister2,
  • Jennifer Philip2,
  • Doranne Donesky5,
  • Natasha Smallwood1,
  • Natasha Smallwood6
Organisations
  • Monash University1,
  • The University of Melbourne2,
  • Goulburn Valley Health3,
  • Murray Primary Health Network4,
  • University of California, San Francisco5,
  • The Alfred Hospital6
Year

2024

Excerpt
Biography: 

Assoc/Prof Disler is an Australian Research Council Discovery DECRA Fellow from Monash University. Through her research, she leads improvement in access to care and models of care for people living with advanced chronic disease, particularly in rural settings. Rebecca is funded by a prestigious ARC Fellowship to address end-stage chronic disease in rural Australia. As Fellow of the American and ANZ Thoracic Societies, Convenor of the Symptom Support and Palliative Care group for ANZ Thoracic Society, and as a Cochrane review author, her work has been included in several international and national guidelines, including NICE UK and global GOLD strategies.


Abstract:

Background:

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.


Aim:

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 analysed descriptively, with free-text questions on barriers and facilitators in chronic disease analysed using qualitative content analysis.


Results:

42 (61.7%) rural health services were included, most were public (88.1%) and operated in acute (19, 45.2%) or community (16, 38.1%) settings. 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%); formalised referral pathways (n=18, 64.3%); professional development (16, 57.1%); and community health promotion (14, 50.0%).


Conclusions:

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.