📋 Key Information Summary
- Palliative care is active, holistic care for people of any age with a life-limiting illness, aimed at optimising quality of life through prevention and relief of suffering.
- It addresses physical, psychosocial, cultural, and spiritual needs of the patient, their family, and carers.
- Palliative care is not limited to the terminal phase — it should be integrated early alongside disease-modifying treatments.
- The core principles include: dignity, autonomy, informed choice, symptom management, communication, and family/carer support.
- In Australia, approximately 160,000 people die each year; the majority could benefit from palliative care, yet access remains inconsistent.
- Four illness trajectories are recognised: terminal (cancer), organ failure, frailty/dementia, and sudden death — each requiring different palliative approaches.
- The WHO defines palliative care as applicable from the time of diagnosis, not solely in the last days of life.
- Key domains of assessment include: pain, dyspnoea, nausea, fatigue, constipation, psychological distress, spiritual concerns, and caregiver burden.
- Aboriginal and Torres Strait Islander Australians experience significant barriers to palliative care access, including cultural, geographic, and systemic factors.
- Advance care planning (ACP) is a core component — involving goals-of-care discussions, advance directives, and substitute decision-maker identification under relevant state/territory legislation.
- Palliative care can be delivered in any setting: home, hospital, hospice, residential aged care facility (RACF), or via telehealth — the National Palliative Care Standards (2018) apply across all.
- Specialist palliative care referral is indicated for complex symptoms, refractory suffering, or when generalist teams require support.
Introduction & Australian Epidemiology
Palliative care is a fundamental component of the Australian healthcare system, providing active, holistic care for people living with life-limiting illnesses. It is introduced when the goals of care shift from curative intent toward optimising the quality of remaining life. Palliative care is not synonymous with end-of-life care alone — it encompasses a broad philosophy of care that may be delivered concurrently with disease-modifying therapies from the point of diagnosis.
The World Health Organization (WHO) defines palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual." In Australia, the National Palliative Care Standards (4th edition, 2018) and the Palliative Care Australia (PCA) Consensus Framework provide the guiding principles for service delivery.
Australian Epidemiology
- Approximately 160,000–170,000 Australians die each year, with the majority experiencing chronic, progressive illness in the years preceding death.
- The Australian Institute of Health and Welfare (AIHW) estimates that around 100,000–120,000 of these individuals could benefit from palliative care at some stage of their illness.
- Cancer remains the most common diagnosis triggering specialist palliative care referral (~60% of referrals), but non-cancer conditions (heart failure, COPD, dementia, renal failure, liver disease) account for a growing proportion.
- Demand for palliative care services is projected to increase by 50% by 2030 due to population ageing and increasing prevalence of chronic disease.
- In 2021–22, over 90,000 hospitalisations in Australia had a palliative care-related diagnosis; approximately 50% of Australians now die in hospital, though most express a preference to die at home.
- Aboriginal and Torres Strait Islander Australians have lower rates of access to palliative care services and are more likely to die in acute hospital settings without culturally appropriate support.
- The median time from referral to death in specialist palliative care is approximately 30–60 days, suggesting that many referrals are made late in the disease trajectory — a recognised gap in care.
Definition & Aims
What Is Palliative Care?
Palliative care is an approach to care that improves the quality of life of patients and families facing life-limiting illness. It is delivered by an interdisciplinary team and addresses physical, psychological, social, cultural, and spiritual dimensions of suffering. Key definitional features include:
- Affirms life — regards dying as a normal process, neither hastening nor postponing death.
- Provides relief from pain and other distressing symptoms — using pharmacological and non-pharmacological approaches.
- Integrates psychological and spiritual aspects of care — recognising existential suffering alongside physical symptoms.
- Offers a support system — to help patients live as actively as possible until death.
- Offers a support system to the family — during the patient's illness and in bereavement.
- Uses a team approach — including medical, nursing, allied health, spiritual care, and volunteer support.
- Will enhance quality of life — and may also positively influence the course of illness.
- Is applicable early in the course of illness — in conjunction with other therapies intended to prolong life.
Aims of Palliative Care in Australia
The National Palliative Care Standards (2018, Palliative Care Australia) articulate the following overarching aims:
Palliative Care vs End-of-Life Care
| Feature | Palliative Care | End-of-Life Care |
|---|---|---|
| Timing | From diagnosis of life-limiting illness; may last months to years | Final days to weeks of life (typically <12 months prognosis) |
| Concurrent treatment | May run alongside active disease-modifying therapy | Active treatment generally ceased or significantly de-escalated |
| Focus | Quality of life, symptom control, psychosocial support | Comfort, dignity, and symptom management in the dying phase |
| Setting | Any setting (home, hospital, RACF, hospice) | Often inpatient hospice, hospital, or home with support |
| Bereavement | Included from time of referral | Post-death focus |
Principles of Palliative Care
The principles of palliative care underpin all clinical decision-making and service delivery. In Australia, these principles are articulated in the National Palliative Care Standards, the PCA Consensus Framework, and align with the WHO Global Palliative Care Strategy.
Core Principles
Additional Guiding Principles
- Equity and access: Palliative care should be available to all Australians, regardless of diagnosis, age, location, socioeconomic status, or cultural background. Rural and remote populations face particular access barriers.
- Interdisciplinary teamwork: Effective palliative care requires collaboration between medical practitioners, nurses, allied health professionals (social workers, psychologists, physiotherapists, occupational therapists, speech pathologists, dietitians), spiritual care practitioners, and trained volunteers.
- Communication: Honest, compassionate, and culturally sensitive communication about diagnosis, prognosis, treatment options, and goals of care is fundamental. Communication skills training (e.g. SPIKES, NURSE framework) is recommended for all clinicians.
- Family and carer centredness: Families and carers are recognised as core units of care. Support includes education, respite, practical assistance, and bereavement care.
- Continuity of care: Seamless transitions between settings (home, hospital, hospice, RACF) and between care providers (generalist to specialist palliative care) reduce fragmentation and improve outcomes.
- Cultural safety: Care must be culturally responsive, particularly for Aboriginal and Torres Strait Islander Australians, people from culturally and linguistically diverse (CALD) backgrounds, and LGBTQI+ individuals.
- Evidence-based practice: Clinical decisions should be guided by the best available evidence, clinical expertise, and patient preferences. Key Australian resources include the Palliative Care Outcomes Collaboration (PCOC) data and the Australian Palliative Medicines Database.
- Quality improvement: Ongoing measurement of outcomes, patient experience, and service performance drives improvement. The PCOC national benchmarking program is central to this in Australia.
Ethical Framework
Palliative care practice in Australia is guided by several ethical principles:
| Ethical Principle | Application in Palliative Care |
|---|---|
| Beneficence | Acting in the patient's best interest by providing effective symptom relief and supportive care. |
| Non-maleficence | Avoiding treatments that cause disproportionate burden without benefit; recognising when further active treatment is harmful. |
| Autonomy | Supporting patient choice, informed consent, right to refuse treatment, and advance care planning. |
| Justice | Ensuring equitable access to palliative care across all populations, settings, and diagnoses. |
| Double effect | Administering opioids or sedatives for legitimate symptom control where a foreseeable but unintended side effect is respiratory depression — legally and ethically accepted in Australian practice. |
Who Should Receive Palliative Care
Palliative care is appropriate for anyone with a life-limiting illness, regardless of age, diagnosis, or stage of disease. The WHO position statement (2014) affirms that palliative care should be integrated from the time of diagnosis of a serious health-related suffering condition, not reserved solely for the terminal phase.
Indications for Palliative Care
- Any advanced, progressive, life-limiting illness where curative treatment is no longer possible or appropriate.
- Conditions causing significant symptom burden or suffering, regardless of prognosis (some patients receive palliative care for years).
- Patients and families with complex psychosocial or spiritual needs related to a serious illness.
- Patients requiring advance care planning, goals-of-care discussions, or end-of-life planning.
- Patients with multimorbidity and frailty where the trajectory of decline is uncertain.
- Neonates, children, and adolescents with life-limiting conditions (paediatric palliative care is a distinct subspecialty).
Common Diagnoses Requiring Palliative Care
| Disease Category | Examples | Typical Trajectory |
|---|---|---|
| Malignancy | Lung, colorectal, breast, prostate, pancreatic, head & neck, brain tumours, haematological malignancies | Terminal decline (months); relatively predictable |
| Organ failure | Heart failure (NYHA III–IV), COPD (GOLD stage IV), liver cirrhosis (Child-Pugh C), end-stage renal disease | Episodic decline with acute exacerbations; unpredictable |
| Neurodegenerative | Motor neurone disease (MND/ALS), Parkinson's disease, multiple sclerosis, Huntington's disease, dementia (advanced) | Prolonged gradual decline (years) |
| Frailty & dementia | Advanced frailty, Alzheimer's disease, vascular dementia, Lewy body dementia | Slow, prolonged decline with intermittent crises |
| Other | HIV/AIDS (advanced), drug-resistant epilepsy, severe cerebral palsy, congenital/genetic conditions, burns (non-survivable) | Variable |
Surprise Question & Trigger Tools
Clinicians can use the "Surprise Question" as an initial screening tool: "Would you be surprised if this patient died in the next 12 months?" If the answer is "No," a palliative care needs assessment should be initiated.
Levels of Palliative Care Provision
Phases & Illness Trajectories
Understanding illness trajectories is essential for prognostication, care planning, and resource allocation. While individual trajectories vary, four broad patterns are recognised in the palliative care literature (Lynn & Adamson, 2003; Murray et al., 2005). These trajectories help clinicians and families anticipate needs and plan appropriate levels of care.
The Four Illness Trajectories
Characterised by a recognisable terminal phase with relatively rapid functional decline over weeks to months. Prognosis is often more predictable. This is the trajectory most commonly associated with traditional palliative care models. Patients may maintain reasonable function until a relatively short pre-terminal phase. Median palliative care involvement: 30–90 days. Most cancer deaths in Australia follow this pattern.
Characterised by a prolonged illness course with periodic acute exacerbations, partial recovery, and gradual overall decline. The "peaks and troughs" pattern makes prognostication difficult — patients may appear to recover from acute episodes but each recovery is incomplete. Sudden death may occur. Trigger for palliative care: recurrent hospitalisations, escalating diuretic/oxygen requirements, or patient preference.
Characterised by slow, progressive functional decline over months to years with no clearly defined terminal phase. Patients experience accumulating disability, increasing dependency, and recurrent complications (aspiration pneumonia, falls, pressure injuries). Advance care planning is particularly important given the prolonged nature of decline and the risk of losing decision-making capacity.
Relatively well function until a sudden unexpected event (e.g. massive stroke, pulmonary embolism, cardiac arrest). Palliative care needs are concentrated in the acute bereavement period and for families. Advance care planning may be relevant for those with known risk factors but is often not completed.
Phases of Palliative Care (PCOC Classification)
The Palliative Care Outcomes Collaboration (PCOC) uses a standardised phase classification to describe a patient's current status within the palliative care journey. This classification is used across Australian palliative care services for benchmarking and clinical governance.
| PCOC Phase | Description | Clinical Implications |
|---|---|---|
| Stable | Symptoms and psychological well-being are adequately managed; patient is coping. Goals of care are being met. | Regular review; advance care planning discussions; maintain current management. |
| Unstable | New or worsening symptoms, or a significant change in condition requiring urgent review or intervention. | Urgent symptom management; medication adjustment; possible escalation of care; specialist palliative care review if not already involved. |
| Deteriorating | Progressive decline in function and/or increasing symptom burden; disease is progressing despite treatment. | Review goals of care; intensify symptom management; consider transition to comfort-focused care; family/carer education and support. |
| Terminal (Dying) | Death is expected within hours to days (typically ≤3 days). Patient is bedbound, semi-conscious or unconscious, with minimal oral intake. | End-of-life care pathway; cease non-essential medications; continuous subcutaneous infusion (CSCI) for symptom control; family support; cultural/spiritual care; after-death care planning. |
| Bereavement | Post-death phase; bereavement support for family, carers, and significant others. | Bereavement risk assessment; referral to bereavement services; follow-up contact (phone, letter, visit); high-risk bereavement support for vulnerable families. |
Recognising the Dying Phase
Recognising when a patient is entering the dying phase is critical for appropriate care planning. Clinical indicators include:
- Decreasing level of consciousness (drowsy, semi-comatose, comatose).
- Minimal or no oral intake; dysphagia.
- Bedbound; dependent for all activities of daily living.
- Peripheral cyanosis; mottled skin (livedo reticularis).
- Noisy, rattling breathing (death rattle) due to secretions.
- Cheyne-Stokes respiration or irregular breathing patterns.
- Reduced or absent urine output.
- Inability to take medications orally — switch to subcutaneous routes.
Assessment Tools & Investigations
Standardised Assessment Tools
Routine use of validated assessment tools improves symptom detection, guides treatment, and enables outcome measurement. The following tools are commonly used in Australian palliative care practice:
Investigations in Palliative Care
Investigations in palliative care should be guided by clinical need and the potential to change management. Routine or "monitoring" blood tests are often unnecessary and may cause distress. Indications for investigation include:
- Symptom evaluation: e.g. calcium for confusion/nausea, FBC for fatigue/bleeding, LFTs for jaundice/pruritus.
- Treatment monitoring: e.g. renal function for opioid dose adjustment (morphine metabolites), INR for warfarin.
- Reversible causes: Investigations to identify potentially reversible causes of suffering (e.g. hypercalcaemia, hypothyroidism, subdural haematoma).
- Diagnostic uncertainty: When a diagnosis is unclear and confirmation would alter the care plan.
Prognostic Tools
| Tool | Population | Description |
|---|---|---|
| Palliative Performance Scale (PPSv2) | All palliative patients | 11-point scale (0–100%) assessing ambulation, activity, self-care, intake, consciousness. PPS ≤50% associated with median survival <3 months. |
| SPICT™ | General/primary care | Supportive & Palliative Care Indicators Tool — identifies patients who may benefit from palliative care based on general indicators and disease-specific indicators. |
| Gold Standards Framework Prognostic Indicator Guidance | Primary care | Uses the "Surprise Question" plus general and disease-specific indicators to identify patients in the last year of life. |
| Prognosis in Palliative Care (PiPS) predictor | Cancer | Validated model using clinical variables to estimate survival in days/weeks/months. |
Symptom Management Overview
Symptom management is the cornerstone of palliative care. The most common symptoms in advanced illness include pain, dyspnoea, nausea and vomiting, constipation, fatigue, anorexia/cachexia, delirium, anxiety, and depression. Effective management requires a systematic, patient-centred approach using both pharmacological and non-pharmacological strategies.
The Palliative Approach to Pain
Commonly Used Medications in Palliative Care
Advance Care Planning
Advance care planning (ACP) is a process of discussion and planning for future healthcare decisions. It enables patients to articulate their values, preferences, and goals, and to appoint substitute decision-makers. ACP is recognised as a core component of palliative care and is supported by Australian law and policy.
Key Elements
- Goals-of-care discussion: Exploring what matters most to the patient — comfort, independence, being at home, attending events, spiritual goals. Uses frameworks such as the "Ask-Tell-Ask" method.
- Advance care directive (ACD): A legal document recording the patient's preferences for future treatment. Validity and terminology vary by state/territory (e.g. Advance Health Directive in WA/QLD, Refusal of Treatment Certificate in VIC, Advance Care Directive in SA/NT).
- Substitute decision-maker (SDM): The person legally authorised to make healthcare decisions when the patient lacks capacity. Appointed by the patient or determined by legislation (hierarchy varies by jurisdiction).
- Documentation and communication: ACP discussions and documents should be clearly documented in the medical record and communicated to all relevant healthcare providers, including GPs, hospital teams, RACF staff, and ambulance services.
Special Populations
Aboriginal and Torres Strait Islander Health
📚 References
- 1. Palliative Care Australia. National Palliative Care Standards. 4th ed. Canberra: PCA; 2018.
- 2. World Health Organization. Global Atlas of Palliative Care at the End of Life. Geneva: WHO; 2014.
- 3. Australian Commission on Safety and Quality in Health Care (ACSQHC). National Consensus Statement: Essential Elements for Safe and High-Quality End-of-Life Care. Sydney: ACSQHC; 2015.
- 4. Australian Institute of Health and Welfare (AIHW). Palliative care services in Australia. Cat. no. HWI 326. Canberra: AIHW; 2023.
- 5. Palliative Care Outcomes Collaboration (PCOC). PCOC National Bulletin. Wollongong: University of Wollongong; 2023.
- 6. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005;330(7498):1007–1011.
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