๐ Key Information Summary
- Palliative care can be delivered across multiple settings โ home, hospital, residential aged care, hospice/palliative care units, and via community outreach services โ and the optimal setting is guided by patient preference, symptom burden, carer capacity, and available resources.
- Approximately 54% of Australians express a preference to die at home, yet only around 14โ16% achieve this; bridging this gap requires robust community palliative care services and advance care planning.
- Home-based palliative care enables familiar surroundings and family involvement but depends on adequate carer support, 24-hour telephone advice, timely equipment delivery, and regular visiting by specialist or generalist palliative care teams.
- Hospital-based palliative care is appropriate for acute symptom crises (uncontrolled pain, bleeding, respiratory distress), complex procedures requiring inpatient facilities, or when home/residential care is unsafe or unavailable.
- Dedicated palliative care units (hospices) provide specialist interdisciplinary care for patients with complex refractory symptoms, offering higher nurse-to-patient ratios and expertise in end-of-life symptom management.
- Hospital-in-the-home programs increasingly allow palliative interventions (subcutaneous infusions, IV antibiotics, blood transfusions) to be delivered in the community, reducing unnecessary hospital admissions.
- Residential aged care facilities (RACFs) are the place of death for approximately 30% of Australians; integrating palliative care principles and specialist support into RACFs is a national priority.
- Rural and remote Australians face significant barriers to palliative care access including workforce shortages, limited specialist services, vast travel distances, and reduced availability of after-hours support and equipment.
- Telehealth has transformed rural palliative care delivery, enabling specialist consultations, family meetings, and symptom review to occur without the burden of long-distance travel.
- Aboriginal and Torres Strait Islander communities have distinct cultural needs around death, dying, and Country; culturally safe palliative care must incorporate family-centred models, community-controlled health services, and the option to return to Country.
- Advance care planning (ACP) is integral regardless of setting; the Australian Government's National Palliative Care Strategy (2018) mandates that ACP discussions are initiated early and documented accessibly.
- The Palliative Care Outcomes Collaboration (PCOC) provides national benchmarking data on palliative care outcomes across Australian settings, enabling quality improvement.
Introduction & Australian Epidemiology
Palliative care is an approach that improves the quality of life of patients and their families facing life-limiting illness, through the prevention and relief of suffering by means of early identification, impeccable assessment, and treatment of pain and other physical, psychosocial, and spiritual problems (World Health Organization, 2020). In Australia, palliative care is recognised as a core component of the healthcare system, with the National Palliative Care Strategy 2018 establishing a framework for equitable access regardless of diagnosis, age, location, or cultural background.
The setting in which palliative care is delivered profoundly influences the patient and family experience, clinical outcomes, and healthcare costs. The choice of setting depends on a complex interplay of factors including patient and family preference, symptom complexity, carer availability and capability, proximity to services, cultural considerations, and the broader healthcare infrastructure available in a given region.
Australian Mortality and Palliative Care Use
Approximately 169,300 Australians died in 2022, with an estimated 60โ70% requiring some form of palliative care in the last 12 months of life. Data from the Australian Institute of Health and Welfare (AIHW) indicate the following distribution of place of death nationally:
| Place of Death | Approximate % | Trend |
|---|---|---|
| Hospital (including emergency departments) | ~50โ54% | Gradually declining |
| Residential aged care facility | ~28โ32% | Stable |
| Home | ~14โ16% | Slowly increasing |
| Hospice / palliative care unit | ~3โ5% | Stable |
| Other (e.g. en route, community) | ~1โ3% | Variable |
Despite strong community preference for home-based death, a significant mismatch persists between preference and reality. The 2023 Grattan Institute report noted that investing in community palliative care could reduce emergency department presentations in the last year of life by up to 35% and decrease hospital bed-days by approximately 25%, representing substantial cost savings to the health system.
National Policy Context
Key national policy instruments shaping palliative care settings include:
- National Palliative Care Strategy 2018: Six pillars including access, quality, workforce, and data.
- Palliative Care Australia (PCA): Peak body advocacy for universal access.
- PCOC (Palliative Care Outcomes Collaboration): National benchmarking since 2006, now covering >95% of specialist palliative care services.
- Aged Care Quality Standards (2019): Standard 3 requires palliative care planning in RACFs.
- Medicare Benefits Schedule (MBS): Items for specialist palliative medicine (Items 98, 99 series) and GP chronic disease management plans (Items 721, 723).
- Commonwealth Home Support Programme (CHSP) & Home Care Packages: Funding mechanisms for community-based palliative support.
๐ Home Care
Home-based palliative care allows patients to remain in familiar surroundings, maintain independence, and be close to family, pets, and community. It is the preferred setting for many Australians and, when adequately supported, is associated with high patient and carer satisfaction, reduced hospital admissions, and lower healthcare costs.
Models of Home-Based Palliative Care
| Model | Description | Typical Provider |
|---|---|---|
| Generalist palliative care at home | GP-led, community nursing, allied health; suitable for patients with stable symptoms and good carer support | General practitioners, district nursing services, CHSP providers |
| Specialist community palliative care | Consultant-led multidisciplinary team; for complex symptoms, active dying, or specialist medication management | State-funded specialist palliative care teams (e.g. Silver Chain in WA, Palliative Care Victoria community teams) |
| Hospital-in-the-home (HITH) | Acute-level interventions delivered at home: subcutaneous infusions, IV antibiotics, transfusions, paracentesis | Hospital-based HITH programs (e.g. Royal Melbourne Hospital HITH, Alfred Health) |
| Volunteer-based support | Companionship, respite for carers, practical assistance; does not replace clinical care | Palliative Care Volunteer programs, St Vincent de Paul, local hospice volunteers |
| Telehealth-supported home care | Video consultations for symptom review, family meetings, and after-hours triage | MBS telehealth items (e.g. Items 99200โ99215 for specialist telehealth) |
Essential Requirements for Safe Home-Based Palliative Care
- Carer capacity: At least one willing and able primary carer, with access to respite and carer education programs (Carer Gateway: 1800 422 737).
- 24-hour telephone support: Access to a palliative care nurse or after-hours GP helpline for urgent symptom management advice (e.g. NURSE-ON-CALL 1300 60 60 24 in Victoria, Healthdirect 1800 022 222 nationally).
- Equipment: Hospital-grade bed, pressure-relieving mattress, suction (if needed), syringe driver, oxygen concentrator โ typically funded through state palliative care programs or NDIS.
- Medication access: Anticipatory medications stocked in the home (subcutaneous morphine, midazolam, hyoscine butylbromide, metoclopramide, haloperidol); emergency medication kits managed by community pharmacy or specialist palliative care team.
- Regular visiting schedule: Minimum daily visits in the terminal phase; twice-weekly visits during stable phase, adjusted to need.
- Emergency plan: Written action plan for acute deterioration, including whom to call, what medications to administer, and when to call an ambulance.
Medications Commonly Used in Home Palliative Care
Funding and Equipment Access
- State palliative care programs: Most states and territories fund equipment loans (bed, mattress, commode, syringe drivers) at no cost to the patient through the specialist palliative care service.
- NDIS: May fund palliative-related supports for people aged <65 with a disability co-existing with a life-limiting illness.
- Home Care Packages (Levels 1โ4): Can fund personal care, nursing visits, allied health, and equipment for those already on a package.
- MBS items for GPs: Chronic Disease Management Plan (Item 721), Team Care Arrangement (Item 723), and GP Mental Health Treatment Plan (Item 710) โ all applicable to palliative care patients.
๐ฅ Hospital Care
Hospitals remain the most common place of death in Australia, accounting for approximately half of all deaths. While many hospital-based deaths occur in acute wards, dedicated palliative care consultation services and hospital-based palliative care units provide specialist expertise within the hospital setting.
When Hospital-Based Palliative Care Is Appropriate
Hospital Palliative Care Consultation Services
Most Australian tertiary and secondary hospitals have specialist palliative care consultation teams (inpatient consultation-liaison). These teams provide:
- Symptom assessment and management advice to the primary treating team.
- Goals-of-care discussions and advance care planning documentation.
- Discharge planning โ facilitating timely transition home or to a palliative care unit.
- Carer support and bereavement risk assessment.
- Education for ward staff on end-of-life care, syringe driver use, and anticipatory medication prescribing.
Emergency Department Palliative Care
Patients with known palliative care needs frequently present to emergency departments, often due to acute symptom crises or carer breakdown. Best-practice ED management includes:
- Rapid identification of existing advance care directives and goals-of-care documentation (My Health Record, state-based registers, or patient-held documents).
- Early palliative care consult referral (ideally within 4 hours of presentation) rather than defaulting to full active treatment pathways.
- Symptom-driven investigations โ avoiding non-beneficial interventions (e.g. routine bloods in a patient with documented comfort care goals).
- Dedicated ED palliative care pathways exist in several Australian hospitals (e.g. Melbourne's Royal Children's Hospital Paediatric Palliative Care ED pathway).
Discharge Planning and Avoiding Unnecessary Readmission
Effective hospital palliative care includes robust discharge planning:
- Commence anticipatory medications and ensure community pharmacy stock before discharge.
- Confirm community palliative care team referral and first visit date.
- Provide written emergency action plan to patient and carer.
- Ensure equipment delivery arranged (hospital bed, syringe driver if needed).
- Telephone follow-up within 24โ48 hours of discharge by the hospital palliative care team.
๐ก Palliative Care Units
Dedicated palliative care units (PCUs), sometimes called hospices, provide specialist inpatient palliative care for patients with complex needs that cannot be managed in other settings. In Australia, PCUs may be standalone facilities, co-located within hospitals, or operated by non-government organisations (NGOs) such as HammondCare, Sacred Heart Health Service, and various state-based hospice services.
Indications for PCU Admission
- Refractory symptoms not responding to generalist or community specialist palliative care (e.g. complex pain syndromes, delirium, intractable nausea).
- Need for specialist procedures: intrathecal drug delivery, nerve blocks, complex syringe driver titration.
- Carer exhaustion or absence โ when the home environment cannot safely support the patient's care needs.
- Social isolation โ patients without family or social support who need 24-hour professional care.
- Respite admissions โ planned short stays (typically 5โ14 days) to support carers and prevent burnout.
- Active dying โ when the patient or family prefer a PCU environment over home or hospital for the terminal phase.
PCU Characteristics Compared to Acute Hospital Wards
| Feature | Palliative Care Unit | Acute Hospital Ward |
|---|---|---|
| Nurse-to-patient ratio | Typically 1:3โ4 (day), 1:5โ6 (night) | 1:6โ8 (day), 1:8โ12 (night) |
| Average length of stay | 7โ14 days (range 1โ60+) | 3โ5 days |
| Visiting hours | Often flexible / 24-hour | Restricted (typically 10amโ8pm) |
| Family accommodation | Frequently available (sleepover rooms, pull-out beds) | Rarely available |
| Multidisciplinary team | Palliative medicine specialist, palliative care nurse, social worker, chaplain, music therapist, volunteer coordinator, OT, physio | General medical team ยฑ palliative care consult |
| Focus of care | Quality of life, comfort, family support, bereavement | Diagnosis-specific, disease-modifying where appropriate |
| After-hours medical cover | On-site or on-call palliative medicine consultant | Hospital RMO / registrar cover |
Common Symptom Management in PCUs
PCUs manage complex, refractory symptoms with pharmacological and non-pharmacological approaches. Syringe driver (continuous subcutaneous infusion, CSCI) use is a hallmark of specialist palliative care:
Australian PCU Distribution and Access
As of 2023, Australia has approximately 800โ900 dedicated palliative care beds across public hospitals, private hospitals, and NGO-operated hospices. Distribution is heavily weighted to major cities, creating significant access inequity for rural and remote populations. PCOC data indicate median waiting times of 1โ3 days for PCU admission in metropolitan areas, extending to 5โ14 days or requiring interstate transfer for some regional patients.
- NSW: HammondCare (Sydney), Sacred Heart (Sydney), Calvary Mater Newcastle, Braeside Hospital, Greenwich Hospital.
- VIC: Peter MacCallum Cancer Centre, Caritas Christi (St Vincent's), Bethlehem Hospital, Mercy Palliative Care.
- QLD: Mater Palliative Care, Brisbane South Palliative Care, Gold Coast University Hospital PCU.
- WA: Bethesda Hospice, SJOG Murdoch, Silver Chain.
- SA: Mary Potter Hospice (Calvary), Flinders Medical Centre PCU.
- TAS: Holman Clinic, Hobart.
- ACT: Clare Holland House (Snowy Monaro region outreach).
- NT: Darwin palliative care unit (Royal Darwin Hospital).
๐พ Rural & Remote Care
Approximately 7 million Australians (28% of the population) live in rural and remote areas defined as MM 3โ5 (Modified Monash Model). These communities face persistent barriers to palliative care access including workforce shortages, distance from specialist services, limited after-hours support, and cultural complexities โ particularly for Aboriginal and Torres Strait Islander communities.
Modified Monash Model and Palliative Care Access
| MM Category | Description | Palliative Care Access |
|---|---|---|
| MM 1โ2 (Metropolitan / Regional) | Major cities, large regional centres | Full access to specialist palliative care, PCUs, consultative teams, community services |
| MM 3โ4 (Rural) | Small rural towns (pop. 5,000โ15,000) | GP-led palliative care with visiting specialist outreach (monthly or quarterly); telehealth support; limited or no PCU access |
| MM 5โ6 (Remote) | Remote towns and communities | Nurse-led / Aboriginal Health Practitioner-led; Royal Flying Doctor Service (RFDS) support; specialist telehealth; evacuations common for complex symptoms |
| MM 7 (Very Remote) | Very remote Aboriginal communities, islands | Significant access barriers; care often requires patient relocation to regional or metropolitan centres; cultural considerations paramount |
Strategies for Improving Rural and Remote Palliative Care
Key Rural & Remote Palliative Care Services
- Royal Flying Doctor Service (RFDS): Aeromedical retrieval and remote consultations, including palliative care support, across all states and territories.
- CareSearch / palliAGED: National online evidence-based resources for palliative care in aged care and rural settings.
- Program of Experience in the Palliative Approach (PEPA): Funded by the Australian Government, PEPA provides clinical placements for health professionals to build palliative care skills in generalist settings.
- End-of-Life Directions for Aged Care (ELDAC): Online toolkit and advisory service for aged care providers, including RACFs in rural areas.
๐ฅ Special Populations
Pregnancy
Palliative care in pregnancy is rare but critical when advanced cancer or other life-limiting illness is diagnosed during gestation.
Opioids: Morphine and oxycodone cross the placenta; use lowest effective dose. Neonatal withdrawal may occur with chronic use in the third trimester.
Midazolam: Avoid in first trimester (Category D); use with caution in late pregnancy โ neonatal respiratory depression possible.
Setting: Tertiary hospital with obstetric and neonatal services is preferred. Home-based palliative care may be considered in late pregnancy with multidisciplinary planning.
Paediatrics
Approximately 800 children die from life-limiting conditions in Australia annually. Most paediatric palliative care is delivered at home, with specialist support from children's hospital teams.
Paediatric palliative care teams: Available at all children's hospitals nationally (e.g. Bear Cottage โ Sydney, Very Special Kids โ Melbourne, Hummingbird House โ Brisbane).
Medication: Weight-based dosing essential. Syringe drivers (e.g. CADD-MS 3) with small-volume reservoirs suitable for paediatric use.
Bereavement: Sibling support and school liaison are integral components of paediatric palliative care. Bear Cottage and Very Special Kids provide ongoing family bereavement programs.
Elderly
Over 70% of deaths in Australia occur in people aged โฅ65 years. RACFs are the second most common place of death.
Opioid caution: Start at 50% of standard adult dose; increased sensitivity, reduced clearance, falls risk. Hydromorphone preferred over morphine if eGFR <30 mL/min.
Delirium: Common at end of life; haloperidol 0.5โ1 mg PO/SC (low-dose), risperidone 0.25โ0.5 mg as alternatives. Avoid benzodiazepines as first-line in delirium unless related to alcohol withdrawal.
ELDAC toolkit: Free online resource for RACF staff (eldac.com.au) with care planning templates, medication guides, and advance care planning tools.
Renal Impairment
CKD stages 4โ5 and dialysis-dependent patients have complex symptom burdens. Withdrawal from dialysis is an increasingly common pathway to palliative care (approximately 15% of dialysis deaths in Australia).
Avoid: Morphine (active metabolite M6G accumulates); NSAIDs. Prefer fentanyl, alfentanil, or hydromorphone.
Gabapentin: Requires significant renal dose reduction (100 mg after each dialysis session for neuropathic pain).
Setting: Home or RACF if stable; inpatient PCU if dialysis withdrawal is planned, to manage symptoms of uraemia (pruritus, nausea, restlessness) over 7โ14 days.
Hepatic Impairment
End-stage liver disease (ESLD) has a symptom burden comparable to advanced cancer, including ascites, encephalopathy, pruritus, and muscle cramps.
Opioids: Reduce dose by 50%; prefer fentanyl (hepatically metabolised but less affected by synthetic capacity). Avoid codeine and tramadol.
Midazolam: Prolonged half-life in cirrhosis; reduce dose by 50% and titrate cautiously.
Setting: Community care if Child-Pugh A/B; inpatient for Child-Pugh C with encephalopathy or haemodynamic instability.
Immunocompromised
Patients with HIV/AIDS (despite effective ART), organ transplant recipients, and those on immunosuppressive therapy may develop life-limiting complications requiring palliative care.
HIV: Palliative care involvement should begin early in advanced HIV; symptom management includes antiretroviral continuation where tolerated, treatment of opportunistic infections, and psychosocial support.
Infection risk: Home palliative care may need infection control precautions for neutropenic patients; discuss with infectious disease and palliative care teams.
๐ References
- 1. Australian Government Department of Health. National Palliative Care Strategy 2018. Canberra: Commonwealth of Australia; 2018.
- 2. Australian Institute of Health and Welfare. Palliative care services in Australia. AIHW; 2023. Cat. no. HWV 84.
- 3. Palliative Care Outcomes Collaboration (PCOC). National Bulletin โ 2023 results. Wollongong: University of Wollongong; 2024.
- 4. Swerissen H, Duckett S. What can we do to help Australians die the way they want? Grattan Institute Report No. 2014-8. Melbourne: Grattan Institute; 2014.
- 5. Palliative Care Australia. National Palliative Care Standards. 5th ed. Canberra: PCA; 2018.
- 6. Australian and New Zealand Society of Palliative Medicine (ANZSPM). Specialist palliative medicine physician training curriculum. ANZSPM; 2022.
- 7. Department of Health and Aged Care. Modified Monash Model โ Fact sheet. Canberra: Australian Government; 2019. Available at: www.health.gov.au.
- 8. Mitchell GK, Senior HE, Bibo MP, et al. Palliative care in rural and remote Australia: challenges and solutions. Aust J Rural Health. 2020;28(2):116โ124.
- 9. CareSearch / palliAGED. Palliative care evidence and resources for aged care. Adelaide: Flinders University; 2024. Available at: caresearch.com.au.
- 10. Royal Australian College of General Practitioners (RACGP). Palliative care in general practice โ RACGP curriculum. Melbourne: RACGP; 2023.
- 11. World Health Organization. Palliative care โ Key facts. Geneva: WHO; 2020. Available at: www.who.int.
- 12. Australian Government Department of Health. End-of-Life Directions for Aged Care (ELDAC) project. Canberra: Commonwealth of Australia; 2023. Available at: eldac.com.au.
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- 14. Croager EJ, Gray C, Eades S, et al. Aboriginal and Torres Strait Islander palliative care: a review of the literature. Aust J Prim Health. 2021;27(5):353โ361.
- 15. National Aboriginal Community Controlled Health Organisation (NACCHO). Providing culturally safe palliative care for Aboriginal and Torres Strait Islander peoples โ Position paper. Canberra: NACCHO; 2022.