Community-based palliative care for people with advanced NCDs

The global surge in non-communicable diseases has reshaped how health systems think about dying. Cardiovascular conditions, chronic respiratory illnesses, diabetes complications, and cancer now account for the majority of deaths worldwide, and patients in their final stages often spend prolonged periods in complex health states. Palliative care, once associated primarily with oncology, has expanded to address the symptomatic and psychosocial needs of people living with advanced heart failure, end-stage chronic obstructive pulmonary disease, or progressive neurological disorders. Community-based models, in particular, have gained traction because they align care with where people actually live, love, and wish to remain.

Australia offers a particularly relevant setting for this conversation. The country has one of the world's oldest populations, with more than 16% of residents aged 65 and over, a share projected to climb steadily. The 2021 Royal Commission into Aged Care Quality and Safety exposed gaps when older Australians with multiple chronic conditions fall between acute hospitals and home-based services. In cities such as Melbourne, Sydney, and Brisbane, and across vast rural stretches from the Kimberley to western Queensland, families navigate a patchwork of Medicare rebates, My Aged Care packages, and local community nursing.

The 2023 APEC Conference on Promoting Community-based Non-Communicable Diseases Integrated Care Model brought these issues into sharp focus, gathering clinicians, policymakers, and community advocates to share practical solutions. Palliative care featured prominently as a thread running through discussions of cardiovascular disease management, diabetes prevention, and integrated geriatric services. Participants examined how wraparound community supports can reduce unnecessary hospital admissions and honour the preferences of patients who want to remain in familiar surroundings for as long as possible.

This article synthesises several themes raised at the conference, with a particular emphasis on the Australian experience. It explores how community-based palliative care is being defined, funded, and delivered, and why the approach matters for health systems facing the long tail of chronic disease. Readers interested in attending related sessions or accessing conference materials can begin the https://2023apecncds.org/registration process to secure their place.

The rising burden of advanced NCDs in Australia

Non-communicable diseases cause roughly 89% of deaths in Australia each year, and a substantial share follow years of living with multiple coexisting conditions. Many older adults present with congestive heart failure, type 2 diabetes, chronic kidney disease, and dementia, a pattern called multimorbidity. The trajectory of these illnesses is unpredictable, marked by gradual decline punctuated by acute crises, complicating decisions about when curative treatment should give way to comfort-focused care.

Hospital admissions near the end of life are common but often avoidable with the right community infrastructure. Data from the Australian Institute of Health and Welfare show that people with advanced chronic obstructive pulmonary disease experience frequent readmissions that are distressing and costly. Community-based palliative care aims to interrupt this cycle by providing symptom monitoring, medication adjustment, and psychosocial support without requiring an emergency department visit.

Geography adds another layer of complexity. In remote parts of the Northern Territory and western Queensland, specialist palliative care physicians are scarce, and primary care clinicians carry the full responsibility. Telehealth services funded through Medicare have helped bridge some of that distance, but the social fabric of care, including visits from nurses, volunteers, and Aboriginal Health Workers, remains essential where the nearest hospital is hours away.

Defining community-based palliative care

Community-based palliative care refers to a coordinated set of services delivered outside hospital walls, usually in the patient's home or a local residential facility, for people with life-limiting illness. It encompasses pain and symptom management, emotional and spiritual support, advance care planning, and bereavement care for families. The model draws on general practitioners, community nurses, allied health professionals, pharmacists, and trained volunteers working together with the patient and their loved ones.

The approach differs from traditional hospice care in several respects. It is offered earlier in the disease course, sometimes alongside disease-modifying treatment, and tailored to the cultural and social context of each community. In suburban Adelaide, a palliative care team might coordinate with a local Greek or Italian social club to provide culturally familiar meals. In the Torres Strait, services work alongside Indigenous health organisations to ensure care respects kinship structures and traditional practices.

Evaluation of community-based models consistently shows benefits in symptom control, family satisfaction, and reduced hospital utilisation. Patients report feeling a greater sense of autonomy and dignity, and family caregivers often experience less psychological distress when they have reliable professional backup. These outcomes align with the preferences expressed in advance care directives completed by many Australians through programs linked to My Aged Care.

Policy frameworks supporting local care

Australian policy has gradually shifted to support community-based palliative care, although funding mechanisms remain fragmented. The National Palliative Care Strategy, updated in recent years, provides a framework for state and territory governments to coordinate services. Medicare rebates cover some GP consultations and specialist visits, while the Pharmaceutical Benefits Scheme subsidises essential medications including opioids for pain control.

The introduction of voluntary assisted dying legislation in Victoria in 2019, followed by Western Australia, Tasmania, South Australia, Queensland, and New South Wales, has prompted broader conversations about end-of-life choices. While voluntary assisted dying is separate from palliative care, the legislative changes have encouraged clinicians to initiate earlier conversations about goals of care, supporting timely referrals to community services.

Funding for community-based programs often relies on a combination of state government grants, primary health network commissioning, and contributions from non-profit organisations. Groups such as Palliative Care Australia, Cancer Council, and local community nursing services fill gaps that the public system cannot always reach. The model is not without pressure, as demand grows faster than resources in many regions.

Models of care in Australian communities

Several distinct models of community-based palliative care have emerged across Australia. In Western Australia, the WA Cancer and Palliative Care Network has developed shared care protocols between hospital specialists and community general practitioners. In Victoria, Austin Health's palliative care service operates a rapid response outreach team that visits patients at home during crises, helping them avoid ambulance trips and emergency department waits.

Residential aged care facilities represent another important setting. The federal government's mandatory palliative care standards for aged care, introduced following the 2021 Royal Commission, require facilities to provide or arrange access to such services. Many have partnered with local community palliative care teams to deliver in-reach support, including after-hours phone advice and regular visits from specialist nurses.

There is also growing interest in wellness-oriented community programs that support both patients and families. Universities and health promotion bodies have piloted initiatives combining gentle exercise, nutrition advice, and peer support. One such university wellness program demonstrates how student volunteers and faculty clinicians can collaborate with local palliative care services to offer meaningful engagement, even for people whose conditions limit their mobility.

Workforce and volunteer capacity

A skilled and sustainable workforce underpins every successful community palliative care program. Australia faces shortages in specialist palliative medicine physicians, particularly outside metropolitan areas, and general practitioners report feeling underprepared to manage complex symptoms such as refractory breathlessness or neuropathic pain. Investment in postgraduate training and continuing professional development is essential to expand the pool of confident clinicians.

Community nurses, often employed by local health services or non-profit organisations, provide much of the day-to-day care. Their work includes wound management, medication administration, family education, and liaison with pharmacies. In South Australia, the Royal District Nursing Service has long been a cornerstone of community-based palliative care, and similar organisations operate across other states under various names.

Volunteers contribute in ways that professionals cannot always replicate. They offer companionship, practical help with shopping or transport, and respite for exhausted family caregivers. Programs run by local Lions and Rotary clubs, faith-based organisations, and condition-specific charities such as Heart Foundation or Diabetes Australia are quietly indispensable. Training and supervision are crucial, as volunteers encounter grief, loss, and the unpredictability of advanced illness.

Digital tools and family caregiver support

Digital health tools are reshaping how community palliative care is coordinated. Shared electronic records allow GPs, community nurses, hospital palliative care teams, and after-hours services to see the same up-to-date information about a patient's symptoms and medications. Telehealth consultations, which expanded during the COVID-19 pandemic, have become standard practice, particularly for patients in rural Western Australia or far north Queensland.

Mobile applications designed for symptom tracking help patients and family caregivers communicate changes to clinicians in real time. A daughter in Perth caring for her father in Kalgoorlie, for instance, can log his breathlessness scores and share them with the community nurse during a video call. Such tools reduce the sense of isolation that often accompanies caring for someone at a distance.

Family caregivers themselves need structured support. Respite care, counselling, and education about what to expect as an illness progresses are part of a comprehensive community response. Carer Gateway, a federally funded program, offers counselling, peer support, and emergency respite, and many local councils provide additional services. Some community organisations have explored creative funding streams, including partnerships with local entertainment venues and community fundraisers, to sustain caregiver support; readers can explore a related community post for one such example of community engagement.

If this discussion resonates with your work, consider joining the conversation at the 2023 APEC Conference sessions dedicated to community-based palliative care. Speakers from across the Asia-Pacific will share practical models, evaluation data, and policy insights that can be adapted to local contexts. The official event platform offers downloadable resources, including presentation slides, virtual backgrounds, and the program book, all accessible after registration through the conference portal.