Home Palliative Care Overview of Palliative Care

Overview of Palliative Care

📋 Key Information Summary

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  • 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.
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Late referral: Research consistently demonstrates that earlier integration of palliative care improves quality of life, reduces hospital admissions, and in some conditions (e.g. advanced lung cancer) may even improve survival. Referral should not be delayed until all curative options are exhausted.

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:

1
Symptom Management
Prevention and relief of physical, psychological, and spiritual suffering using evidence-based interventions.
2
Person-Centred Care
Respecting individual values, preferences, cultural practices, and informed decision-making throughout the illness trajectory.
3
Communication & Planning
Open, honest, and timely communication about prognosis, goals of care, and advance care planning.
4
Equitable Access
Ensuring all Australians — regardless of diagnosis, location, age, or background — can access palliative care when needed.
5
Bereavement Support
Providing grief and bereavement support to families and carers before and after the patient's death.
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Palliative care ≠ giving up: A common misconception among patients, families, and clinicians is that palliative care equates to "no more treatment." In reality, palliative care may be delivered alongside chemotherapy, radiotherapy, dialysis, cardiac devices, and other interventions. The focus is on aligning treatment with the patient's goals and values.

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

Principle 1
Affirming Life
Palliative care affirms life and regards dying as a normal process. It neither hastens nor postpones death, but seeks to enable patients to live as fully and comfortably as possible.
Principle 2
Holistic Assessment
Care addresses the whole person — physical, psychological, social, cultural, and spiritual dimensions. Assessment tools (e.g. POS, IPOS, ESAS) guide comprehensive evaluation.
Principle 3
Patient Autonomy & Choice
Patients are supported to make informed decisions about their care, including treatment refusal, place of care, and advance care planning. Respecting autonomy is a legal and ethical imperative.

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.
Voluntary Assisted Dying (VAD): VAD legislation is now in effect in all Australian states (Victoria 2019, Western Australia 2021, Tasmania 2022, South Australia 2023, Queensland 2023, New South Wales 2023). VAD is a separate legal and clinical framework from palliative care. Palliative Care Australia supports access to quality palliative care for all, regardless of VAD decisions, and emphasises that palliative care and VAD are distinct but not mutually exclusive.

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.

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Recognising the need early: The National Consensus Statement: Essential Elements for Safe and High-Quality End-of-Life Care (ACSQHC, 2015) recommends that all healthcare organisations have systems to identify patients who may be approaching the end of life, including screening tools, clinical indicators, and escalation pathways. Clinical indicators include: declining functional status (e.g. Palliative Performance Scale ≤50%), unplanned hospitalisations, weight loss, recurrent infections, and rising symptom burden.

Levels of Palliative Care Provision

Level 1
All Clinicians
Basic palliative care competencies — communication, symptom recognition, advance care planning initiation. Provided by GPs, hospital ward teams, and RACF staff.
Setting: Any healthcare setting
Level 2
Generalist Palliative Care
GPs, general physicians, and hospital clinicians with additional palliative care training who can manage common symptoms and initiate goals-of-care discussions.
Setting: Primary care, hospital wards, RACFs
Level 3
Specialist Palliative Care
Consultant physicians and specialist nurses with FACP or equivalent training. Manage complex symptoms (refractory pain, delirium, existential distress), complex family dynamics, and medicolegal issues. Available in all states via public hospital and community palliative care services.
Setting: Specialist inpatient units, consult services, community teams

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

Trajectory 1
Cancer / Terminal Decline
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.
Trajectory 2
Organ Failure (e.g. Heart Failure, COPD, Liver Failure)
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.
Trajectory 3
Frailty & Dementia / Prolonged Dwindling
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.
Trajectory 4
Sudden Death
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.
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PCOC data collection: Over 150 Australian palliative care services participate in the PCOC national benchmarking program. PCOC data informs service planning, quality improvement, and national palliative care policy. Clinicians should be familiar with PCOC phase classification and symptom assessment tools (e.g. Australian-modified Karnofsky Performance Status, Palliative Care Problem Severity Score).

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.
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Important: The decision that a patient is dying should be made by a senior clinician and communicated sensitively to the patient (if conscious) and family. The ACSQHC Consensus Statement recommends that organisations have a recognised end-of-life care pathway (e.g. the Liverpool Care Pathway for the Dying Patient, or locally developed equivalents such as the Care of the Dying pathway used in many Australian hospitals).

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:

Essential Integrated Palliative care Outcome Scale (IPOS) Patient-reported outcome measure covering physical, psychological, and spiritual concerns. PCOC-endorsed. Validated in Australian populations.
Essential Palliative Care Problem Severity Score (PC-PSS) Clinician-rated tool measuring severity across four domains: physical, psychological, social, and spiritual. Core PCOC measure.
Essential Australian-modified Karnofsky Performance Status (AKPS) Functional status assessment; PCOC standard. Scores 0–100; helps guide prognosis and care planning.
Available Edmonton Symptom Assessment System – Revised (ESAS-r) Patient-rated 10-item symptom screen (pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being, breathlessness, "other"). Rapid completion.
Available Palliative Care Outcome Scale (POS) 10-item patient-completed measure of palliative care outcomes. Used internationally; Australian validation data available.
Available Distress Thermometer Single-item screening tool for psychological distress (0–10 scale). Quick identification of patients requiring further psychosocial assessment.
Available Abbey Pain Scale Non-verbal pain assessment tool for patients with dementia or cognitive impairment who cannot self-report. Validated in Australian RACFs.
Available Functional Assessment of Chronic Illness Therapy – Palliative (FACIT-Pal) Patient-reported quality-of-life measure specifically designed for palliative care populations.

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.
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Avoid unnecessary investigations: In the terminal phase, blood tests, imaging, and other investigations should generally be ceased unless there is a clear clinical indication that will change management. Unnecessary investigations can cause discomfort, anxiety, and distract from comfort-focused care. Always ask: "Will this test result change my management?"

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

1
Assess
Characterise pain (nociceptive vs neuropathic vs mixed), severity (NRS 0–10), site, timing, exacerbating/relieving factors, functional impact, and patient beliefs.
2
WHO Analgesic Ladder
Step 1: Non-opioids (paracetamol, NSAIDs). Step 2: Weak opioids (codeine, tramadol). Step 3: Strong opioids (morphine, oxycodone, hydromorphone, fentanyl). In palliative care, steps may be bypassed based on severity.
3
Adjuvants
Corticosteroids (bone metastases, nerve compression), gabapentin/pregabalin (neuropathic pain), bisphosphonates/denosumab (bone metastases), ketamine (refractory pain under specialist guidance).
4
Non-Pharmacological
Physiotherapy, heat/cold therapy, massage, relaxation, mindfulness, psychological support, TENS, acupuncture. Integrated with pharmacotherapy.

Commonly Used Medications in Palliative Care

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Morphine
MS Contin® · Kapanol® · Ordine® · Opioid analgesic
Adult dose (opioid-naïve) Oral: 2.5–5 mg every 4 hours (immediate release); SC: 2.5–5 mg every 4 hours or CSCI equivalent. Titrate every 24–48 hours.
Breakthrough dose 10–20% of total 24-hour dose, every 1–2 hours PRN (oral or SC)
Renal adjustment Reduce dose in renal impairment (eGFR <30 mL/min); active metabolites (M6G) accumulate. Consider hydromorphone or fentanyl as alternatives.
PBS status ✔ PBS General Benefit
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Oxycodone
OxyNorm® · Endone® · OxyContin® · Opioid analgesic
Adult dose (opioid-naïve) Oral: 2.5–5 mg every 4–6 hours (immediate release); modified release 5–10 mg every 12 hours. SC: 2.5–5 mg every 4 hours.
Renal adjustment Use with caution; reduce dose in renal impairment. Active metabolites (oxymorphone) accumulate.
PBS status ✔ PBS General Benefit
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Hydromorphone
Jurnista® · Dilaudid® · Opioid analgesic (morphine alternative)
Adult dose (opioid-naïve) Oral: 1–2 mg every 4 hours (IR); SC: 0.5–1 mg every 4 hours or CSCI. Equianalgesic ratio: hydromorphone 1.3 mg ≈ morphine 10 mg (oral).
Renal adjustment Preferred over morphine in renal impairment (fewer active metabolites). Reduce dose; extend interval if eGFR <15 mL/min.
PBS status ⚠ PBS Authority Required
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Fentanyl (transdermal)
Durogesic® · Opioid analgesic (transdermal patch)
Adult dose Transdermal: 12–25 mcg/hour patch, changed every 72 hours. Only for stable pain (not for dose titration in opioid-naïve patients). SC bolus or CSCI also available for acute/terminal care.
Renal adjustment Preferred in renal impairment — no active metabolites. Use with caution; reduce starting dose.
PBS status ✔ PBS General Benefit
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Haloperidol
Serenace® · Haldol® · Antipsychotic / antiemetic
Adult dose Nausea/vomiting: 0.5–1.5 mg PO/SC OD–BD. Delirium/agitation: 1.5–5 mg PO/SC/IM, titrate. Terminal agitation: 2.5–5 mg SC, repeat 2-hourly PRN.
Renal adjustment No specific adjustment; use lowest effective dose.
PBS status ✔ PBS General Benefit
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Dexamethasone
Dexmethsone® · Corticosteroid
Adult dose Bone pain / raised ICP: 8–16 mg PO/IV OD (morning). Nausea: 4–8 mg PO/IV OD. Spinal cord compression: 16 mg IV stat then 8 mg BD. Cerebral oedema: 8 mg IV BD. Taper when possible.
Renal adjustment No adjustment required.
PBS status ✔ PBS General Benefit
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Midazolam
Hypnovel® · Benzodiazepine (subcutaneous/SC CSCI)
Adult dose Anxiety/agitation: 2.5–5 mg SC stat, then 10–30 mg/24h SC CSCI. Terminal restlessness: 5–10 mg SC stat, repeat 2-hourly PRN, then CSCI. Seizures: 5–10 mg SC/IV stat, repeat PRN.
Renal adjustment Use lowest effective dose; active metabolites accumulate in renal/hepatic impairment.
PBS status ✔ PBS General Benefit
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Glycopyrrolate (Glycopyrronium)
Sialanar® · Anticholinergic (secretion management)
Adult dose 200–400 mcg SC every 4–6 hours or 600–1200 mcg/24h SC CSCI. For death rattle / excessive secretions. Preferred over hyoscine butylbromide (less sedation).
Renal adjustment Use with caution; no specific dose adjustment data.
PBS status ⚠ PBS Authority Required
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Opioid safety in palliative care: Opioids are essential medications for palliative care and should not be withheld due to unfounded fears of hastening death. The principle of double effect protects clinicians who prescribe opioids for legitimate symptom control. However, always follow state/territory opioid prescribing regulations, use the lowest effective dose, and monitor for adverse effects (constipation — always prescribe aperients with opioids; respiratory depression; sedation; nausea). Opioid conversion charts should be used when switching between agents.

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.
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Medicare Benefits Schedule: ACP discussions in general practice can be billed under MBS item numbers 92240, 92241, 92242 (GP Chronic Condition Management items). Dedicated ACP MBS items have been advocated by Advance Care Planning Australia (ACPA) and the RACGP.

Special Populations

🤰 Pregnancy
Cancer in pregnancy: Palliative care may be required for advanced malignancy diagnosed during pregnancy. Multidisciplinary team (MDT) input including obstetrics, neonatology, oncology, and palliative care is essential.
Analgesia: Opioids (morphine preferred) are used when indicated. Avoid NSAIDs in the third trimester (risk of premature closure of ductus arteriosus). Paracetamol is safe throughout pregnancy.
Fetal considerations: Balance maternal symptom relief with fetal wellbeing. Gestational age influences management decisions — earlier gestation limits options for fetal viability.
Careful documentation of discussions regarding termination of pregnancy for maternal health is required in jurisdictions with restrictive legislation.
👶 Paediatrics
Scope: Paediatric palliative care encompasses perinatal palliative care (life-limiting conditions diagnosed antenatally), neonatal palliative care, and care for children/adolescents with life-limiting conditions (estimated 3,000+ children in Australia at any time).
Common diagnoses: Genetic/chromosomal conditions (trisomy 13/18), neurodegenerative disorders, complex congenital heart disease, cancer, metabolic disorders, extreme prematurity.
Symptom management: Weight-based opioid dosing (morphine 0.1–0.2 mg/kg SC stat; 0.2–0.4 mg/kg/hour CSCI). Midazolam for seizures/agitation (0.05–0.1 mg/kg SC). Syringe drivers commonly used.
Paediatric palliative care is provided by specialist services (e.g. Bear Cottage NSW, Very Special Kids VIC, Hummingbird House QLD). Perinatal palliative care planning should begin antenatally when a life-limiting condition is diagnosed.
👴 Elderly / Geriatric
Frailty: The majority of deaths in Australia occur in people aged ≥65 years. Frailty is a distinct illness trajectory requiring palliative care input, particularly in residential aged care facilities (RACFs).
Polypharmacy: Deprescribing is an important palliative intervention — ceasing medications that are no longer beneficial (statins, antihypertensives, bisphosphonates) reduces pill burden and adverse effects.
Opioid sensitivity: Start at lower doses (e.g. morphine 1–2.5 mg SC every 4 hours). Monitor for constipation, delirium, and falls. Renal function decline is common — adjust accordingly.
RACF residents have a right to palliative care. The Aged Care Quality Standards require palliative care planning, advance care directives, and after-hours access to medical support. End-of-life care in RACFs should be equivalent in quality to hospital-based care.
🫘 Renal Impairment
Conservative management: Patients with end-stage kidney disease (ESKD) who choose not to commence or to withdraw from dialysis require comprehensive palliative care. Conservative kidney management (CKM) is an accepted pathway.
Opioid choice: Morphine metabolites (M6G, M3G) accumulate in renal failure → increased sedation, respiratory depression. Preferred agents: hydromorphone, fentanyl (transdermal or SC), or methadone (specialist use).
Symptom burden: Patients with ESKD have high symptom burden (pruritus, restless legs, nausea, fatigue, pain, fluid overload). Multidisciplinary management is essential.
Dialysis withdrawal is a legally and ethically accepted decision in Australia. Palliative care should be offered proactively, not only at the point of dialysis cessation. Median survival after haemodialysis withdrawal is 8–12 days.
🫁 Hepatic Impairment
End-stage liver disease: Decompensated cirrhosis (Child-Pugh C) carries a poor prognosis. Palliative care referral should be considered early, particularly after the second decompensation episode.
Opioid caution: Morphine is best avoided (impaired hepatic metabolism, increased bioavailability). Fentanyl or hydromorphone are preferred, with careful dose titration. Halve initial doses.
Key symptoms: Ascites, hepatic encephalopathy, pruritus, variceal bleeding risk, fatigue, sarcopenia, depression.
Liver transplant assessment should be considered concurrently with palliative care for eligible patients. For those who are not transplant candidates or who decline transplant, palliative care is the primary focus.
🛡️ Immunocompromised
HIV/AIDS: With antiretroviral therapy, HIV-related deaths have decreased significantly, but late diagnosis, treatment non-adherence, and comorbidities still contribute to mortality in Australia. Palliative care for people with HIV should address stigma, isolation, and complex psychosocial needs.
Haematological malignancy: Patients receiving intensive chemotherapy, stem cell transplants, or CAR-T cell therapy have unique palliative care needs. The dying phase may be complicated by graft-versus-host disease, sepsis, and multi-organ failure.
Infection risk: In the terminal phase, consider whether ongoing antimicrobial therapy is consistent with goals of care. Antimicrobial stewardship applies even in palliative settings.
Immunocompromised patients often have a "revolving door" pattern of admissions. Proactive palliative care involvement can reduce unwanted hospitalisations and support community-based care where appropriate.

Aboriginal and Torres Strait Islander Health

Aboriginal and Torres Strait Islander Health Considerations in Palliative Care
Health burden
Aboriginal and Torres Strait Islander Australians experience a burden of disease 2.3 times greater than non-Indigenous Australians. Life expectancy remains approximately 8 years lower. Higher rates of chronic disease (diabetes, cardiovascular disease, renal failure, cancer) translate to significant palliative care needs.
Cultural concepts of death & dying
Death, dying, and bereavement are understood within complex cultural and spiritual frameworks. "Sorry Business" (mourning practices) may require family and community to gather, sometimes from distant locations. Naming restrictions, avoidance of images of the deceased, and specific ceremonial practices must be respected. The use of the deceased person's name or image may be culturally inappropriate in some communities.
Country & connection to land
Many Aboriginal and Torres Strait Islander people express a strong desire to return to Country (their traditional land) to die. This may conflict with the availability of palliative care services in remote communities. Healthcare services should facilitate return to Country where safe and feasible, including provision of equipment, medications, and community support.
Access barriers
Geographic remoteness (28% of Aboriginal and Torres Strait Islander people live in remote/very remote areas), limited specialist palliative care services, shortage of Indigenous health professionals, health system mistrust due to historical and ongoing racism, and language barriers (over 100 distinct language groups). Telehealth and fly-in specialist services partially address access gaps but are not a substitute for culturally grounded local care.
Family & community involvement
Aboriginal and Torres Strait Islander approaches to health are holistic, encompassing physical, social, emotional, cultural, and spiritual dimensions. Family and community are central to decision-making — the Western model of individual patient autonomy may not align with community-based decision-making processes. Aboriginal Health Workers (AHWs) and Aboriginal Liaison Officers (ALOs) are essential for bridging cultural and clinical care.
Workforce
There is a critical shortage of Aboriginal and Torres Strait Islander palliative care specialists, nurses, and health workers. Building a culturally safe palliative care workforce requires targeted recruitment, training, and retention strategies. The Australian Indigenous Doctors' Association (AIDA) and the Congress of Aboriginal and Torres Strait Islander Nurses and Midwives (CATSINaM) are key stakeholders.
⚠️
Cultural safety is not optional: All healthcare providers must deliver culturally safe palliative care. This includes engaging with local Aboriginal Community Controlled Health Organisations (ACCHOs), respecting cultural protocols, using interpreter services where needed, and involving AHWs/ALOs in care planning. The National Aboriginal and Torres Strait Islander Palliative Care Strategy (2023, Palliative Care Australia) provides a framework for culturally responsive palliative care.

📚 References

  1. 1. Palliative Care Australia. National Palliative Care Standards. 4th ed. Canberra: PCA; 2018.
  2. 2. World Health Organization. Global Atlas of Palliative Care at the End of Life. Geneva: WHO; 2014.
  3. 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. 4. Australian Institute of Health and Welfare (AIHW). Palliative care services in Australia. Cat. no. HWI 326. Canberra: AIHW; 2023.
  5. 5. Palliative Care Outcomes Collaboration (PCOC). PCOC National Bulletin. Wollongong: University of Wollongong; 2023.
  6. 6. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005;330(7498):1007–1011.
  7. 7. Lynn J, Adamson DM. Living Well at the End of Life: Adapting Health Care to Serious Chronic Illness in Old Age. RAND Corporation; 2003.
  8. 8. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733–742.
  9. 9. Palliative Care Australia. National Aboriginal and Torres Strait Islander Palliative Care Strategy. Canberra: PCA; 2023.
  10. 10. Advance Care Planning Australia (ACPA). National Framework for Advance Care Planning. Melbourne: Austin Health; 2021.
  11. 11. Royal Australian College of General Practitioners (RACGP). Specific Interests: Palliative Care. Melbourne: RACGP; 2022.
  12. 12. CareSearch. Palliative Care Knowledge Network. Flinders University, Adelaide. Available at: https://www.caresearch.com.au. Accessed 2024.
  13. 13. Abernethy AP, Currow DC, Frith P, Fazekas BS, Bovill CJ. Randomised, double blind, placebo controlled crossover trial of sustained release morphine for the management of refractory dyspnoea. BMJ. 2003;327(7414):523–528.
  14. 14. Hui D, Bruera E. The Edmonton Symptom Assessment System 25 years later: past, present, and future developments. J Pain Symptom Manage. 2017;53(3):630–643.
  15. 15. Murtagh FEM, Burns M, Morineau T, et al. Renal palliative care. J Palliat Med. 2018;21(S1):S1–S12.
for PBS scripts. Utilise ACCHS pharmacies and Remote Area Aboriginal Health Worker programs for medication supply in remote areas. Avoid initiating benzodiazepines; support holistic pain management including community-based exercise programs.
Preventive health
Promote bone health: encourage vitamin D supplementation (1000 IU daily in deficient individuals), smoking cessation support, reduction of alcohol intake, and weight-bearing exercise. MBS Item 715 health checks provide a structured opportunity to assess bone health, screen for osteoporosis risk factors, and discuss musculoskeletal health in a culturally safe context.

Quick Reference: Differential Diagnosis at a Glance

Costovertebral dysfunction
Paracetamol ± NSAID; manual therapy
2–6 weeks
Provocable on palpation; no red flags
Thoracic compression fracture
Paracetamol; ± calcitonin; DXA + osteoporosis Rx
6–12 weeks healing
Elderly; osteoporosis; acute onset
ACS (posterior MI)
Aspirin 300 mg, GTN, heparin; urgent PCI
Time-critical
ECG, troponin; CV risk factors
Aortic dissection
IV labetalol; urgent CT aortogram; surgery (Type A)
Time-critical
Tearing pain; BP differential >20 mmHg
Vertebral osteomyelitis
IV antibiotics (vancomycin + ceftriaxone initially); ID consult
6 weeks IV antibiotics
Fever, elevated CRP, IV drug use
Biliary colic / cholecystitis
Paracetamol ± morphine; lap cholecystectomy
Surgical within 72 h (cholecystitis)
RUQ/infrascapular; post-prandial; RUQ US

📚 References

  1. 1. Briggs AM, Smith AJ, Straker LM, Bragge P. Thoracic spine pain in the general population: prevalence, incidence and associated factors in children, adolescents and adults. A systematic review. BMC Musculoskelet Disord. 2009;10:77.
  2. 2. National Health and Medical Research Council (NHMRC). Evidence-based management of acute musculoskeletal pain. Canberra: NHMRC; 2003 (updated 2020).
  3. 3. Australian Institute of Health and Welfare (AIHW). Aboriginal and Torres Strait Islander Health Performance Framework: Summary report 2023. Canberra: AIHW; 2023.
  4. 4. Deyo RA, Rainville J, Kent DL. What can the history and physical examination tell us about low back pain? JAMA. 1992;268(6):760–765.
  5. 5. Stochkendahl MJ, Kjaer P, Hartvigsen J, et al. National Clinical Guidelines for non-surgical treatment of patients with recent onset low back pain or lumbar radiculopathy. Europ Spine J. 2018;27(1):60–75.
  6. 6. Erwin WM, Jackson PC, Homonko DA. Innervation of the human costovertebral joint: implications for clinical back pain syndromes. J Manipulative Physiol Ther. 2000;23(6):395–403.
  7. 7. Royal Australian College of General Practitioners (RACGP). Guidelines for preventive activities in general practice. 9th edn. Melbourne: RACGP; 2018 (updated 2023).
  8. 8. Hirsch JA, Singh V, Falco FJE, et al. Thoracic facet joint interventions. Pain Physician. 2016;19(4):E581–E593.
  9. 9. Erwin WM, Jackson PC. The costovertebral joint: anatomy, biomechanics, and clinical significance in thoracic back pain syndromes. J Can Chiropr Assoc. 2003;47(2):112–120.
  10. 10. Strayer RJ, Gunnerson JM, Brown LH, et al. Aortic dissection: clinical features, diagnosis, and management. Aust Crit Care. 2019;32(2):144–153.
  11. 11. Ombregt L. A system of orthopaedic medicine. 3rd edn. Edinburgh: Churchill Livingstone Elsevier; 2013. Chapter 18: Thoracic spine.
  12. 12. Lin CC, Chen KH, Li DM, et al. Characteristics and outcomes of patients presenting with thoracic back pain to the emergency department. Emerg Med Australas. 2020;32(5):805–811.
for PBS-listed medicines at participating pharmacies.
Cultural safety
Engagement with Aboriginal Community Controlled Health Organisations (ACCHOs) is essential. Cultural safety training for non-Indigenous clinicians, use of Aboriginal Health Workers and Liaison Officers, and incorporation of traditional healing practices alongside Western medicine improve treatment adherence and outcomes. Avoidance of eye contact, respect for gender-sensitive examination practices, and understanding of sorry business protocols are critical elements of culturally safe care.
Medication adherence
Complex DMARD regimens with frequent monitoring requirements present adherence challenges. Long-acting depot injections (e.g., methotrexate SC) may improve adherence compared to oral regimens. Community pharmacy partnerships through the Indigenous Pharmacy Programmes improve medication management.
Specific conditions
Rheumatic heart disease (RHD) requires secondary prophylaxis with benzathine penicillin G (BPG) 1.2 MU IM every 3–4 weeks for a minimum of 10 years or until age 21 (whichever is longer). RHD registers (e.g., NT RHD Register) facilitate recall and follow-up. The Australian RHD Endgame Strategy targets elimination by 2031.
Referral pathways
Referral through ACCHOs and Aboriginal Hospital Liaison Officers (AHLOs) improves engagement. The Specialist Outreach Assistance Programme provides funded specialist visits to remote communities. NT, WA, and QLD have specific rheumatology outreach programmes targeting Indigenous communities.

📚 References

  1. 1. Australian Institute of Health and Welfare (AIHW). Autoimmune disease in Australia. Cat. no. PHE 312. Canberra: AIHW; 2023.
  2. 2. Fraenkel L, Bathon JM, England BR, et al. 2021 American College of Rheumatology guideline for the treatment of rheumatoid arthritis. Arthritis Care Res. 2021;73(7):924–939.
  3. 3. Fanouriakis A, Kostopoulou M, Alber K, et al. 2019 update of the EULAR recommendations for the management of systemic lupus erythematosus. Ann Rheum Dis. 2019;78(6):736–745.
  4. 4. Chung SA, Langford CA, Maz M, et al. 2021 American College of Rheumatology/Vasculitis Foundation guideline for the management of antineutrophil cytoplasmic antibody-associated vasculitis. Arthritis Care Res. 2021;73(11):1583–1599.
  5. 5. Smolen JS, Landewé RBM, Bijlsma JWJ, et al. EULAR recommendations for the management of rheumatoid arthritis with synthetic and biological disease-modifying antirheumatic drugs: 2022 update. Ann Rheum Dis. 2023;82(1):3–18.
  6. 6. Australian Technical Advisory Group on Immunisation (ATAGI). Australian Immunisation Handbook. Australian Government Department of Health; 2024. Available from: immunisationhandbook.health.gov.au.
  7. 7. Rheumatic Heart Disease Australia (RHDAustralia). The 2020 Australian guideline for prevention, diagnosis, and management of acute rheumatic fever and rheumatic heart disease. 3rd ed. Darwin: Menzies School of Health Research; 2020.
  8. 8. Pharmaceutical Benefits Scheme (PBS). PBS Schedule. Australian Government Department of Health. Available from: pbs.gov.au. Accessed 2024.
  9. 9. Agarwal S, Cunnington J, Nossent J. Autoimmune disease in Indigenous Australians: a systematic review. Int J Rheum Dis. 2021;24(12):1487–1498.
  10. 10. Pisetsky DS. Antinuclear antibody testing — misunderstood or misused? Clin Immunol. 2023;255:109717.
  11. 11. Bertsias GK, Tektonidou M, Amoura Z, et al. Joint European League Against Rheumatism and European Renal Association–European Dialysis and Transplant Association (EULAR/ERA-EDTA) recommendations for the management of adult and paediatric lupus nephritis. Ann Rheum Dis. 2012;71(11):1771–1782.
  12. 12. Ledingham J, Deighton C; British Society for Rheumatology Standards, Audit and Guidelines Working Group. Update on the British Society for Rheumatology guidelines for prescribing TNFα blockers in adults with rheumatoid arthritis. Rheumatology. 2005;44(2):155–158.
  13. 13. National Health and Medical Research Council (NHMRC). National statement on ethical conduct in human research. Canberra: NHMRC; 2023 (updated).
for PBS-listed medicines at participating pharmacies.
Cultural safety
Engagement with Aboriginal Community Controlled Health Organisations (ACCHOs) is essential. Cultural safety training for non-Indigenous clinicians, use of Aboriginal Health Workers and Liaison Officers, and incorporation of traditional healing practices alongside Western medicine improve treatment adherence and outcomes. Avoidance of eye contact, respect for gender-sensitive examination practices, and understanding of sorry business protocols are critical elements of culturally safe care.
Medication adherence
Complex DMARD regimens with frequent monitoring requirements present adherence challenges. Long-acting depot injections (e.g., methotrexate SC) may improve adherence compared to oral regimens. Community pharmacy partnerships through the Indigenous Pharmacy Programmes improve medication management.
Specific conditions
Rheumatic heart disease (RHD) requires secondary prophylaxis with benzathine penicillin G (BPG) 1.2 MU IM every 3–4 weeks for a minimum of 10 years or until age 21 (whichever is longer). RHD registers (e.g., NT RHD Register) facilitate recall and follow-up. The Australian RHD Endgame Strategy targets elimination by 2031.
Referral pathways
Referral through ACCHOs and Aboriginal Hospital Liaison Officers (AHLOs) improves engagement. The Specialist Outreach Assistance Programme provides funded specialist visits to remote communities. NT, WA, and QLD have specific rheumatology outreach programmes targeting Indigenous communities.

📚 References

  1. 1. Australian Institute of Health and Welfare (AIHW). Autoimmune disease in Australia. Cat. no. PHE 312. Canberra: AIHW; 2023.
  2. 2. Fraenkel L, Bathon JM, England BR, et al. 2021 American College of Rheumatology guideline for the treatment of rheumatoid arthritis. Arthritis Care Res. 2021;73(7):924–939.
  3. 3. Fanouriakis A, Kostopoulou M, Alber K, et al. 2019 update of the EULAR recommendations for the management of systemic lupus erythematosus. Ann Rheum Dis. 2019;78(6):736–745.
  4. 4. Chung SA, Langford CA, Maz M, et al. 2021 American College of Rheumatology/Vasculitis Foundation guideline for the management of antineutrophil cytoplasmic antibody-associated vasculitis. Arthritis Care Res. 2021;73(11):1583–1599.
  5. 5. Smolen JS, Landewé RBM, Bijlsma JWJ, et al. EULAR recommendations for the management of rheumatoid arthritis with synthetic and biological disease-modifying antirheumatic drugs: 2022 update. Ann Rheum Dis. 2023;82(1):3–18.
  6. 6. Australian Technical Advisory Group on Immunisation (ATAGI). Australian Immunisation Handbook. Australian Government Department of Health; 2024. Available from: immunisationhandbook.health.gov.au.
  7. 7. Rheumatic Heart Disease Australia (RHDAustralia). The 2020 Australian guideline for prevention, diagnosis, and management of acute rheumatic fever and rheumatic heart disease. 3rd ed. Darwin: Menzies School of Health Research; 2020.
  8. 8. Pharmaceutical Benefits Scheme (PBS). PBS Schedule. Australian Government Department of Health. Available from: pbs.gov.au. Accessed 2024.
  9. 9. Agarwal S, Cunnington J, Nossent J. Autoimmune disease in Indigenous Australians: a systematic review. Int J Rheum Dis. 2021;24(12):1487–1498.
  10. 10. Pisetsky DS. Antinuclear antibody testing — misunderstood or misused? Clin Immunol. 2023;255:109717.
  11. 11. Bertsias GK, Tektonidou M, Amoura Z, et al. Joint European League Against Rheumatism and European Renal Association–European Dialysis and Transplant Association (EULAR/ERA-EDTA) recommendations for the management of adult and paediatric lupus nephritis. Ann Rheum Dis. 2012;71(11):1771–1782.
  12. 12. Ledingham J, Deighton C; British Society for Rheumatology Standards, Audit and Guidelines Working Group. Update on the British Society for Rheumatology guidelines for prescribing TNFα blockers in adults with rheumatoid arthritis. Rheumatology. 2005;44(2):155–158.
  13. 13. National Health and Medical Research Council (NHMRC). National statement on ethical conduct in human research. Canberra: NHMRC; 2023 (updated).