End-of-life care in residential aged care — the Australian GP approach

End-of-life care in residential aged care

Australia has approximately 200,000 permanent residential aged care facility (RACF) residents at any given time (AIHW 2024). Around 60% of residents die within two years of admission, with a median survival of approximately 2.3 years, per the Royal Commission into Aged Care Quality and Safety (2021). RACF has become the dominant place of death for older Australians — ahead of hospital for residents with dementia — and general practice is the anchor of that care.

The GP role is a longitudinal partnership with RACF nursing staff and, when needed, specialist community palliative care services. It spans the full dying trajectory: recognising the palliative phase, advance care planning, anticipatory prescribing, symptom management in the last days, family support, legal responsibilities after death, and bereavement follow-up.

A. Core clinical — the AU general-practice framework

Recognising the palliative phase

The first clinical task is identifying residents who are moving toward the end of life. CareSearch and palliAGED recommend using validated screening tools at admission and six-monthly thereafter:

• Surprise Question — “Would I be surprised if this resident died in the next twelve months?” A “no” triggers a palliative approach plan and PCOC (Palliative Care Outcomes Collaboration) referral.
• SPICT (Supportive and Palliative Care Indicators Tool) — identifies multi-morbidity and organ-failure trajectories.
• Gold Standards Framework (GSF) — classifies frailty, cancer, and organ-failure trajectories with prognostic indicator checklists.

In advanced dementia — the leading cause of death in Australian women and second in men — FAST stage 7c (non-verbal, bedbound, unable to swallow safely) reliably signals the terminal trajectory. At this stage, the dying process unfolds over months to years, not days, and proactive planning protects the resident from avoidable hospital transfers.

Four main dying trajectories operate in RACF: gradual frailty/dementia decline (most common), episodic organ failure, cancer decline (preserved function, then rapid drop), and sudden unexpected death. Recognising the trajectory guides the prognostic conversation with family.

Advance care planning

The RACGP Silver Book recommends initiating advance care planning within the first four weeks of admission, while the resident still has decision-making capacity.

Key components:

• State-specific Advance Care Directive (ACD) — legally binding in all Australian states and the ACT; templates at Advance Care Planning Australia.
• Substitute decision-maker (SDM) — nominated person empowered to make decisions when the resident loses capacity; identify and document early.
• Goals of care — hospital-transfer preferences, CPR status, ceilings of treatment, preferred place of death.
• Review cycle — revisit ACP at any significant clinical change and annually in stable residents.

The GPCCMP (MBS items 965/967) provides a Medicare-rebatable framework for structured chronic disease management including ACP discussion, allied health coordination, and palliative approach documentation.

Symptom management and anticipatory prescribing

Once a palliative approach is identified, the GP should chart anticipatory subcutaneous (SC) medicines as needed — the “just-in-case box” — so nursing staff can respond to symptoms immediately without an overnight GP call. Per eTG Palliative Care and AMH:

Pain and dyspnoea:

• Morphine 2.5 mg SC every four hours as needed in opioid-naive residents
• Step up to a continuous SC infusion if three or more PRN doses are used in 24 hours
• Transdermal fentanyl 12 mcg/h or buprenorphine 5 mcg/h for stable opioid requirements when the oral route is lost
• In renal failure (eGFR <30), rotate away from morphine — metabolites M3G and M6G accumulate causing myoclonus; switch to fentanyl, hydromorphone, or buprenorphine

Terminal secretions:

• Hyoscine butylbromide 20 mg SC every four hours as needed (first-line in Australia)
• Glycopyrrolate 0.2 mg SC — less central nervous system penetration, useful in Parkinson’s and Lewy body dementia
• Atropine 1% eye drops sublingual (one to two drops every four hours) — practical when a syringe driver is unavailable

Nausea:

• Metoclopramide 10 mg SC every six hours (gastric stasis or bowel dysmotility)
• Haloperidol 0.5–1.5 mg SC every eight hours (opioid-induced, metabolic, or refractory nausea)
• Cyclizine 25–50 mg SC every eight hours (vestibular component)

Terminal restlessness:

• Haloperidol 0.5–1 mg SC every four to six hours as needed — use with caution; the Agar JAMA Intern Med 2017 RCT found haloperidol and risperidone worsened delirium symptom scores versus placebo in palliative inpatients
• Midazolam 2.5–5 mg SC every four hours as needed for severe refractory agitation

Constipation — co-prescribe macrogol plus senna with every opioid; methylnaltrexone SC for opioid-induced refractory constipation.

Anxiety and insomnia — lorazepam 0.5 mg sublingually as needed; clonazepam 0.25–0.5 mg nightly.

B. Last days care — the actively dying phase

Clinical recognition

The transition to the actively dying phase (usually hours to a few days before death) is signalled by: sustained loss of consciousness, absent oral intake, mottling of the knees and feet (Kennedy Terminal Ulcer on the sacrum may also appear), jaw relaxation, loss of swallow and cough reflexes, Cheyne-Stokes or agonal breathing, and terminal secretions pooling in the upper airway.

When actively dying is recognised, the team should:

• Convert all essential oral medications to subcutaneous equivalents
• Cease non-essential medications and routine observations (blood pressure, temperature, BSL)
• Position the resident in the lateral position to reduce secretion pooling
• Open 24/7 family access; invite attendance
• Provide mouth care every one to two hours (saline swabs, lip balm, nystatin if oral candidiasis is present)
• Communicate clearly with family: “Your relative is dying. We will keep them comfortable. Hearing is usually the last sense to go — please talk to them.”

Dyspnoea at end of life

Low-dose subcutaneous morphine is the standard of care for refractory dyspnoea. The Abernethy Lancet 2010 trial showed room air was equivalent to supplemental oxygen for dyspnoea relief when SpO₂ was above 88%. A small bedside fan directed at the face is an evidence-supported non-pharmacological intervention.

Nutrition and hydration

Natural reduction in oral intake in the dying phase reflects physiological shutdown, not starvation. Sampson Cochrane 2009 demonstrated that percutaneous endoscopic gastrostomy (PEG) tube feeding in advanced dementia offers no survival benefit, no quality-of-life benefit, and increases pressure injuries, aspiration, agitation, and physical restraint. Comfort hand-feeding — small tastes, purées, sips — is the evidence-aligned and ethically appropriate approach.

Intravenous or subcutaneous fluid infusions in the last days increase pulmonary secretions, peripheral oedema, and discomfort without meaningfully prolonging life. Offer ice chips and regular mouth care instead.

C. Voluntary assisted dying and legal framework

VAD — GP role and obligations

Voluntary assisted dying is legal in all six Australian states and the ACT as of 2026 (Victoria 2019, Western Australia 2021, Tasmania/South Australia/Queensland 2023, New South Wales November 2023, ACT November 2024). The Northern Territory is under legislative consideration.

Per Health.gov.au VAD:

• All GPs must be willing to provide neutral, factual information about VAD, regardless of their personal position.
• Conscientious objection is legal in all jurisdictions. Victoria, Western Australia, and New South Wales require objecting GPs to refer to a VAD navigator.
• Participating GPs must complete state-mandated training and follow the jurisdiction-specific assessment and documentation process.
• Eligibility (common core): adult, resident (usually ≥12 months in the state), decision-making capacity, voluntary and informed request on multiple occasions, intolerable suffering, advanced disease with prognosis ≤6 months (≤12 months for neurodegenerative conditions). ACT has different prognosis requirements.

VAD and good palliative care are complementary, not competing — residents accessing palliative services are more likely to be informed about VAD, not less.

Post-death responsibilities

After any RACF death:

1. Verify death — document time, absent pulse/respirations/pupil reflex.
2. Medical Certificate of Cause of Death (MCCD) — completed by the GP who attended the deceased in the illness leading to death; submitted electronically via the state births, deaths, and marriages registry.
3. Coroner notification — mandatory for unexpected deaths, unnatural deaths, deaths in custody, deaths within 24 hours of a procedure, or identity-unknown deaths (state-specific variation). Most expected RACF deaths do not require coroner referral.
4. Family bereavement support — phone contact within one to two weeks; offer Griefline 1300 845 745; refer for a Mental Health Care Plan if complicated grief develops.

D. Australian operations

Medicare item numbers

Key MBS items for RACF end-of-life care:

• RACF attendance items 3005–3093 — multi-tiered GP visit items supporting in-facility care at varying complexity levels
• Palliative care case conferencing — items 735, 739, 743 (community), 747, 750, 758 (in-RACF) — facilitates MDT meetings with specialist palliative care, nursing, allied health, and family
• GPCCMP — items 965 (preparation) / 967 (review) — structured care plan incorporating ACP review, symptom audit, deprescribing, and allied health referrals
• Mental Health Care Plan — items 2715/2717 — for bereaved family members, resident depression/anxiety, or anticipatory grief in a cognitively intact resident
• Telehealth — items 91790 (video)/91891 (phone) — suitable for after-hours review, family meetings with interstate relatives; existing-relationship rule applies
• After-hours items 597–601 — for after-hours RACF callouts

PBS prescribing

All core palliative symptom medications are accessible via the PBS. Morphine, oxycodone, and transdermal fentanyl/buprenorphine are Schedule 8; higher doses may require PBS Authority (Streamlined for palliative use). Midazolam injection requires Authority for palliative SC use. Hyoscine butylbromide injection is General Schedule. Methylnaltrexone requires Authority for opioid-induced refractory constipation.

State Schedule 8 authority processes for urgent after-hours palliative prescribing vary — the specialist palliative care service can assist with telephone authority navigation.

Specialist palliative care referral

Specialist community palliative care services are available in all Australian states and territories, often with after-hours support. Refer for: refractory symptoms, complex opioid rotation (renal failure), existential or psychosocial distress, family conflict, syringe driver setup, and VAD navigation.

E. Special populations

Aboriginal and Torres Strait Islander residents. Sorry Business requires respect for family and community involvement, culturally appropriate dying ceremonies, and may involve return to Country preferences. Partner early with Aboriginal Community Controlled Health Organisations, Aboriginal Liaison Officers, and use PEPA (Program of Experience in the Palliative Approach) resources. ATSI Health Assessment (item 715) supports structured review.

CALD residents. Engage TIS National (131 450) for interpreter services. Respect religious and cultural customs around dying — washing rituals, prayer direction, dietary requirements, who may be present, post-death body preparation. Family may include chosen non-biological relationships.

LGBTIQ+ elders. Recognise chosen family alongside or instead of biological family. Respect documented gender identity and pronouns. Be aware of institutional trauma from historical treatment in aged care.

Residents with advanced dementia. Use the Abbey Pain Scale for non-verbal pain assessment. Comfort hand-feeding over tube feeding. Early anticipatory prescribing. Explicit family conversations about the naturalness of the dying process in dementia.

When to escalate

Involve specialist community palliative care when:

• Pain, dyspnoea, nausea, or terminal restlessness are refractory to first-line measures
• Syringe driver setup, drug-compatibility advice, or complex opioid rotation is needed
• Complex psychosocial, existential, or family conflict issues arise
• VAD process navigation support is needed
• The resident requires a level of specialist symptom management not available in the RACF

Hospital transfer is rarely appropriate when goals of care support comfort-focused care in the RACF. Reserve for reversible causes the resident and substitute decision-maker wish treated, which cannot be managed at the RACF level.

What this article is and is not

This is general health information drawn from Australian general practice guidelines — Palliative Care Australia, palliAGED, ELDAC, RACGP Silver Book, eTG, AMH, and Choosing Wisely Australia. It is not personal medical advice and does not create a doctor–patient relationship. Decisions about specific care plans, medications, advance directives, and voluntary assisted dying are made in partnership with the resident, substitute decision-maker, and treating team.

For consumer resources: CareSearch, Advance Care Planning Australia, Dying to Talk, HealthDirect — palliative care, Griefline 1300 845 745.

For urgent mental-health crisis: Lifeline 13 11 14, Beyond Blue 1300 22 4636.

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Sources cited

1. Palliative Care Australia
2. CareSearch — palliative care evidence
3. palliAGED — aged care palliative care evidence
4. ELDAC — End of Life Directions for Aged Care
5. RACGP Silver Book — aged care
6. Therapeutic Guidelines (eTG) — Palliative Care
7. Australian Medicines Handbook (AMH)
8. Choosing Wisely Australia
9. AIHW — Aged care in Australia 2024
10. Royal Commission into Aged Care Quality and Safety — Final Report 2021
11. Advance Care Planning Australia
12. Australian Government — Voluntary Assisted Dying
13. Sampson EL et al. — Enteral tube feeding in advanced dementia. Cochrane 2009
14. Agar MR et al. — Haloperidol vs placebo for delirium in palliative care. JAMA Intern Med 2017
15. Abernethy AP et al. — Palliative oxygen vs room air. Lancet 2010
16. Scott IA et al. — Deprescribing in the elderly. JAMA Intern Med 2015
17. HealthDirect — palliative care
18. TIS National 131 450
19. Better Health Channel — palliative care