Supporting patients with end-stage chronic disease in rural Australia: Unveiling gaps

An article written by A/Prof Rebecca Disler, Chronic Respiratory Disease, School of Translational Medicine, Monash University.

Two recent studies have explored access to palliative care in people living with chronic disease in rural Victoria and NSW borderlands. A/Prof Rebecca Disler discusses the findings of her research into access to palliative care in this population through a multi-site audit of care delivery in the final stages of life and a service-level mapping exercise across 42 health services.

Why was it important for your team to do this research?

Chronic diseases are the leading cause of death and disability globally. [1] Two of these conditions (heart and lung disease) account for one third of all deaths in Australia, [2] and cause substantial and prolonged physical, psychological, and existential symptom burden for patients and their families. [3] Palliative care is known to significantly improve quality of life and quality of death in the advanced states of these conditions, yet access to end-of-life support remains limited. [4,5] While heart and lung disease account for 49% of adults in need of palliative care worldwide, [6] these conditions make up only 4% of palliative care referrals. [7] Challenges in access are most profound in rural areas due to palliative care workforce constraints, service structures, and lack of viable alternatives. [8,9] Understanding current pathways and access patterns for palliative care will help us to inform future service development that best supports people living with end-stage chronic disease in regional and rural communities in Australia.

What have you found out? Did any of the findings surprise you?

Our research team completed a multi-site audit of the care delivered to 240 patients with lung, heart, and kidney disease, during their final admission (the admission in which they died) at five regional hospitals. [10] We also completed a service-level mapping exercise that captured the palliative care services available, and how these are structured, across 42 regional health services in Victoria and NSW borderlands. [11] These findings revealed the need for improved care co-ordination and strategies to support end-of-life care for people living with chronic disease in rural areas.

The patients included in our audit had indicators of end-stage chronic disease and were well known to acute services (e.g. average two acute admissions in the final year of life). Despite this, only 20% of patients with lung, heart or kidney disease were referred to palliative care during their terminal admission (versus 50% across all conditions). [10] Fewer still had documentation of preferred place of death (8%) or spiritual needs (8%). Those patients who did have contact with palliative care prior to their final admission were also more likely to show indicators of quality end-of-life care, including completion of advance care planning and not-for-resuscitation orders and review of unnecessary pathology and medications at end-of-life.

Our mapping exercise similarly indicated that palliative care for patients with chronic disease was sparse or largely unknown, with most services mainly providing support for people with malignant disease. Regarding overall structure of the 42 services, palliative capacity and structure varied, and relied on complex and at times ad hoc networks of external and onsite supports. [11] Forty-two percent of services reported some on-site palliative care support, primarily through nurses, while almost all reported off-site specialist palliative care access through either: established relationships with external relationships; visiting medical consultancies; or support from major centres through telehealth. [11]

Identified solutions to improve palliative access in patients with advanced chronic disease aligned with international and international data, including: increased resourcing to meet increased demand; specific referral pathways for chronic disease; specialised staff training; and health promotion and education on palliative care for the general community.
 

What do you see as the major implications of the study for the wider palliative care workforce?

Our findings revealed a lack of palliative care referrals and involvement with people living with end-stage chronic disease in regional and rural Australia in their final stages of life. This presents missed opportunities to improve patient outcomes in the final year of life and to support high quality care in this prevalent and high needs population.  

There is a need for the palliative care workforce to be equipped with the knowledge, resources, and training to increase awareness and integration of palliative care into chronic disease management.
 

Research has the potential to have a positive impact on individuals and societies. What do you hope the impact of this research will be?

We hope our research will positively transform the provision of palliative care for people living with end-stage chronic disease, as a prevalent and currently under-serviced population. Understanding current patterns of care, and potential deficits therein, allows us to inform equitable service structures that best support quality end-of-life care for people living with chronic disease in rural and regional Australia.

Authors

Rebecca Disler

Associate Professor

Chronic Respiratory Disease, School of Translational Medicine, Monash University.

Reference

1. World Health Organization. Noncommunicable diseases [Internet]. Geneva: WHO; 2023 [cited 2024 Mar 19]. Available from: https://www.who.int/news-room/fact-sheets/detail/noncommunicable-diseases
2. Australian Institute of Health and Welfare. Chronic respiratory conditions [Internet]. Canberra: AIHW; 2023 [cited 2024 Mar 19]. Available from: https://www.aihw.gov.au/getmedia/4e7245bb-fa7e-417c-b492-6d537686a655/chronic-respiratory-conditions.pdf?v=20240110133719&inline=true.

3. Disler RT, Green A, Luckett T, Newton PJ, Inglis S, Currow DC, Davidson PM. Experience of advanced chronic obstructive pulmonary disease: Metasynthesis of qualitative research. J Pain Symptom Manage. 2014 Dec;48(6):1182-99.

4. Disler RT, Currow DC, Phillips JL, Smith T, Johnson MJ, Davidson PM. Interventions to support a palliative care approach in patients with chronic obstructive pulmonary disease: An integrative review. Int J Nurs Stud. 2012 Nov;49(11):1443-58.
5. Luckett T, Spencer L, Morton RL, Pollock CA, Lam L, Silvester W, Sellars M, Detering KM, Butow PN, Tong A, Clayton JM. Advance care planning in chronic kidney disease: A survey of current practice in Australia. Nephrology (Carlton). 2017 Feb;22(2):139-149.
6. World Health Organization. Palliative care [Internet]. Geneva: WHO; 2020 [cited 2024 Mar 19]. Available: https://www.who.int/news-room/fact-sheets/detail/palliative-care.
7. Rosenwax L, Spilsbury K, McNamara BA, Semmens JB. A retrospective population based cohort study of access to specialist palliative care in the last year of life: Who is still missing out a decade on? BMC Palliat Care. 2016 May 10;15:46.
8. Australian Institute of Health and Welfare. Rural and remote health [Internet]. Canberra: AIHW; 2023 [cited 2024 Mar 19]. Available from: https://www.aihw.gov.au/reports/rural-remote-australians/rural-and-remote-health.
9. Department of Health, Victoria. Victoria’s end of life and palliative care framework: A guide for high-quality end of life care for all Victorians [Internet]. Melbourne: Department of Health, Victoria; 2016 [cited 2024 Mar 19]. Available from: https://content.health.vic.gov.au/sites/default/files/2022-11/victorias-end-of-life-palliative-care-framework.pdf.
10. Disler R, Pascoe A, Chen XE, Lawson E MD, Cahyadi M, Paalendra A, Hickson H, Wright J, Phillips B, Subramaniam S, Glenister K, Philip J, Donesky D, Smallwood N. Palliative approach remains lacking in terminal hospital admissions for chronic disease across rural settings: Multisite retrospective medical record audit. J Pain Symptom Manage. 2024 Feb 15:S0885-3924(24)00075-7.
11. Disler R, Pascoe A, Hickson H, Wright J, Philips B, Subramaniam S, Glenister K, Philip J, Donesky D, Smallwood N. Service level characteristics of rural palliative care for people with chronic disease. J Pain Symptom Manage. 2023 Oct;66(4):301-309.