Home Palliative Care Refractory Distress and Palliative Sedation

Refractory Distress and Palliative Sedation

๐Ÿ“‹ Key Information Summary

๐Ÿ“‹
  • Refractory symptom โ€” a symptom that cannot be adequately controlled despite aggressive, expert-guided, time-limited therapy using all feasible approaches; must be distinguished from difficult-to-treat symptoms that respond to further optimisation.
  • Palliative sedation is the monitored reduction of consciousness as a last resort to relieve intolerable refractory suffering โ€” it is not a form of euthanasia or physician-assisted dying, which remain unlawful in most Australian jurisdictions.
  • Before declaring a symptom refractory, ensure a multidisciplinary specialist review including palliative medicine, the relevant organ-specialty, psychiatry/psychology, and allied health has been completed.
  • Refractory dyspnoea, pain, delirium-agitation, and nausea/vomiting are the most common indications for palliative sedation in Australian hospice settings.
  • Two consensus frameworks guide classification: the Cherny et al. framework and the Hospice & Palliative Nurses Association (HPNA) criteria โ€” both require exhaustion of reversible causes and standard interventions.
  • Proportionate sedation titrated to symptom relief is preferred over deep continuous sedation; intermittent sedation should be trialled first where possible.
  • First-line agents: midazolam (subcutaneous infusion 1โ€“5 mg/h titrated) and phenobarbitone (for refractory delirium/agitation); second-line: propofol (ICU or specialist palliative care unit only).
  • Fluids and artificial nutrition are not routinely required during palliative sedation and may prolong dying; decisions should follow advance care planning.
  • Ethical safeguards are mandatory: documented informed consent (or surrogate consent), clearly articulated clinical rationale, proportionality assessment, and independent second-specialist opinion.
  • The principle of double effect โ€” where a foreseeable but unintended consequence (potential shortened survival) is morally permissible if the primary intention is symptom relief โ€” underpins Australian palliative sedation practice.
  • Palliative sedation practice must comply with the NSQHS Standards, be documented in the medical record, and include a clinical debrief for staff after the patient's death.
  • Aboriginal and Torres Strait Islander patients may have distinct cultural and spiritual needs around end-of-life care โ€” engage Aboriginal health workers and culturally safe palliative care pathways early.

Introduction & Australian Epidemiology

Refractory distress in the palliative care context refers to the uncommon but clinically critical scenario in which a patient's symptoms โ€” most often pain, dyspnoea, delirium-agitation, or nausea and vomiting โ€” persist at an intolerable level despite comprehensive, expert-guided management. These cases represent the extreme tail of symptom burden and demand a systematic, ethically rigorous approach.

Palliative sedation is the medical reduction of a patient's level of consciousness, administered under careful monitoring, with the sole intention of relieving refractory symptoms that have not responded to all other treatments. It is a recognised intervention within Australian palliative medicine and is distinct from euthanasia or voluntary assisted dying (VAD), which are governed by separate legislation (e.g., the Voluntary Assisted Dying Act 2017 in Victoria; similar Acts in Western Australia, Queensland, Tasmania, South Australia, and New South Wales).

Australian Epidemiology

  • Approximately 160,000 Australians die each year (2023 ABS data); an estimated 60โ€“70% could benefit from palliative care, yet fewer than 40% currently access specialist services.
  • Palliative sedation is used in an estimated 2โ€“5% of specialist palliative care admissions in Australian hospices and palliative care units, consistent with international figures (range 2โ€“14%).
  • The most common refractory symptoms prompting sedation are dyspnoea (โ‰ˆ45%), delirium/agitation (โ‰ˆ30%), pain (โ‰ˆ15%), and nausea/vomiting (โ‰ˆ5%).
  • The median duration of palliative sedation until death is 24โ€“48 hours; prolonged sedation (>7 days) is uncommon and raises additional ethical scrutiny.
  • Access to specialist palliative care is inequitable: metropolitan patients are 2โ€“3 times more likely to receive specialist input than those in rural and remote areas; Aboriginal and Torres Strait Islander peoples face compounding barriers including cultural safety gaps, geographic remoteness, and distrust of health services.
โš ๏ธ
Key distinction: Palliative sedation for refractory symptoms is legally and ethically permissible across all Australian jurisdictions. It must always be distinguished from euthanasia or VAD, which involve the intentional hastening of death and are governed by separate legislation.

Definition of Refractory Symptoms

A symptom is classified as refractory when all of the following criteria are met. Failure to satisfy every criterion means the symptom remains difficult-to-treat rather than refractory, and further therapeutic efforts should be pursued before considering palliative sedation.

Cherny et al. Framework (1994 โ€” widely adopted in Australia)

Criterion Requirement
1. Intractable despite expert management The symptom has not responded to multiple interventions delivered by clinicians with appropriate specialist expertise.
2. Reversible causes addressed All potentially reversible contributing factors (e.g., constipation causing delirium, opioid toxicity, infection, spinal cord compression) have been identified and treated or excluded.
3. Time-limited trials exhausted Adequate trials of first-line, second-line, and adjunctive therapies at appropriate doses and durations have been completed.
4. Intolerable suffering The patient (or, if unable, their substitute decision-maker) reports the symptom as intolerable and the suffering exceeds what can be managed with conscious-level interventions.
5. No further disease-modifying options All reasonable disease-modifying treatments (including radiotherapy for bone pain, bronchoscopic stenting, nerve blocks) have been considered and either attempted, declined, or are clinically inappropriate.

Common Refractory Symptoms in Australian Practice

Often responsive
Pain
Most cancer pain (โ‰ˆ90%) responds to WHO analgesic ladder + adjuvants ยฑ nerve blocks ยฑ radiotherapy. True refractory pain is uncommon (<5%).
Before declaring refractory: ensure opioid rotation, neuraxial analgesia, nerve blocks, and radiotherapy have been considered.
Sometimes refractory
Dyspnoea
Refractory breathlessness in advanced cardiopulmonary or malignant disease. Low-dose opioids, fan therapy, and oxygen (if hypoxic) often help but may not fully relieve.
Before declaring refractory: bronchodilators, diuretics, anxiolytics, opioids (low-dose morphine 2.5โ€“5 mg PO/SC 4-hourly), fan therapy, positioning, oxygen if SpOโ‚‚ <90%.
Commonly refractory
Terminal Delirium / Agitation
Hyperactive or mixed delirium in the last days of life is the symptom most likely to become refractory. Reversible causes (medications, urinary retention, constipation, infection) must be actively excluded.
Before declaring refractory: haloperidol, risperidone, olanzapine, midazolam, levomepromazine; treat reversible causes; environmental measures.
๐Ÿ’ก
Clinical pearl: In Australian palliative care, the term "refractory" should only be applied after a minimum of 24โ€“72 hours of aggressive, specialist-guided optimisation. Symptoms in the final hours of life may become refractory more quickly, and clinical judgement must account for the trajectory of dying.

Specialist Review

Before palliative sedation is initiated, a structured specialist review process is mandatory. This is both a clinical standard of care and an ethical safeguard. The purpose is to confirm that the symptom is genuinely refractory and that all reasonable alternatives have been exhausted.

Multidisciplinary Team Composition

1
Palliative Medicine Specialist
Consultation with a Fellow of the Australasian Chapter of Palliative Medicine (FAChPM) or equivalent. This is the minimum standard for initiating palliative sedation. Available through specialist palliative care services, hospital consultation teams, and community palliative care (e.g., Palliative Care Australia member organisations).
2
Relevant Organ-Specialty
Depending on the symptom: respiratory physician (dyspnoea), pain medicine specialist or anaesthetist (complex pain โ€” may discuss neuraxial techniques or nerve blocks), psychiatrist (delirium with primary psychiatric differential), or oncologist (for possible anti-cancer therapy or radiotherapy).
3
Multidisciplinary Meeting
Case discussion at a multidisciplinary team (MDT) meeting or tumour board where appropriate. Include nursing, pharmacy, social work, pastoral care/spiritual care, and occupational therapy as relevant. Document the MDT recommendation in the medical record.
4
Psychosocial & Existential Assessment
Assessment for psychological distress, existential suffering, demoralisation, and depression โ€” which may be misidentified as physical refractory symptoms. A clinical psychologist or psychiatrist experienced in palliative care should be involved where existential or psychological suffering dominates.

When Specialist Review Is Difficult to Access

In rural and remote Australia, specialist palliative care access is limited. The following resources are available:

  • Palliative Care Specialist Telehealth โ€” most state and territory palliative care services offer telehealth consultations for rural/regional clinicians (Medicare items 99200โ€“99215 for telehealth consultations).
  • CareSearch (caresearch.com.au) โ€” Australian palliative care knowledge network with clinical resources and service directories.
  • Palliative Care Australia (PCA) โ€” peak national body with jurisdiction-specific service maps.
  • Rural and Remote Palliative Care Clinical Standards โ€” outline minimum expectations for symptom management in settings without specialist access.
  • State/Territory Palliative Care Advice Lines โ€” e.g., Palliative Care Victoria Advice Line, NSW Palliative Care Helpline โ€” available to clinicians for telephone guidance.
๐Ÿšจ
Minimum standard: At least one specialist palliative medicine physician must review the patient (in person or via telehealth) and document their agreement that the symptom is refractory before palliative sedation is commenced. Initiating palliative sedation without specialist review is not considered acceptable practice in Australia.

Palliative Sedation

Palliative sedation is a medical intervention that reduces the patient's level of consciousness to relieve intolerable refractory suffering. It is distinguished from sedation for procedures, sedation for agitation in non-palliative settings, and euthanasia/VAD.

Types of Palliative Sedation

Type Description Indication Duration
Proportionate / Titration Sedation Progressive titration of sedation to the minimum level needed to relieve distress; patient may be rousable. Preferred first approach for most refractory symptoms. Variable; may be intermittent.
Intermittent Sedation Periods of sedation alternating with periods of consciousness, allowing the patient to interact with family. Refractory dyspnoea with episodic crises; refractory pain with intermittent flares. Hours to days; repeated as needed.
Continuous Deep Sedation (CDS) Continuous sedation until death, with no intended reversal. Patient remains unconscious. Last resort when intermittent/proportionate sedation has failed or is clearly inappropriate (e.g., severe terminal agitation). Typically <7 days; median 24โ€“48 h.

Pharmacological Agents

๐Ÿ’Š
Midazolam
Hypnovelยฎ ยท Generic ยท Benzodiazepine
Indication First-line agent for most refractory symptoms (dyspnoea, agitation, pain adjunct)
Adult dose โ€” subcutaneous Loading: 2.5โ€“5 mg SC stat, then 1โ€“5 mg/h SC infusion via syringe driver; titrate in 0.5โ€“1 mg/h increments every 1โ€“2 h to effect
Route Subcutaneous infusion (syringe driver, e.g., CADD-MS 3 or Graseby); intermittent SC bolus; intranasal (5 mg/spray for acute crises)
Onset SC bolus: 2โ€“5 min; SC infusion: 10โ€“20 min
Renal adjustment No significant adjustment required; active metabolites accumulate in renal impairment โ€” reduce rate and monitor
Hepatic adjustment Reduce dose by 50% in severe hepatic impairment; prolonged sedation expected
PBS status โœ” PBS General Benefit
๐Ÿ’Š
Phenobarbitone
Generic ยท Barbiturate
Indication Second-line; particularly for refractory delirium/agitation unresponsive to midazolam
Adult dose Loading: 10โ€“20 mg/kg SC over 1โ€“2 h (typically 800โ€“1600 mg), then maintenance 1โ€“3 mg/kg/h SC infusion; alternatively 200โ€“400 mg PO/SC BDโ€“TDS titrated
Route Subcutaneous infusion; oral if tolerated; intravenous if central access available
Onset SC: 30โ€“60 min; loading dose provides effect within 1โ€“2 h
Renal adjustment Use standard dose; monitor for prolonged effect
Hepatic adjustment Reduce dose in hepatic impairment; consider lower loading dose
PBS status โš  Authority Required
๐Ÿ’Š
Levomepromazine (Methotrimeprazine)
Nozinanยฎ ยท Phenothiazine neuroleptic
Indication Adjunctive for delirium with nausea; may reduce midazolam requirements; anti-emetic + sedative properties
Adult dose 6.25โ€“25 mg SC/PO every 6โ€“8 h; titrate in 6.25 mg increments; typical maintenance 25โ€“100 mg/24 h SC via syringe driver
Route Subcutaneous; oral
Onset 15โ€“30 min SC; 30โ€“60 min PO
Key adverse effects Hypotension (alpha-blockade); extrapyramidal symptoms uncommon at palliative doses
PBS status โš  Authority Required
๐Ÿ’Š
Propofol
Diprivanยฎ ยท General anaesthetic agent
Indication Third-line; for refractory symptoms unresponsive to midazolam and phenobarbitone. Requires ICU or specialist palliative care unit with continuous monitoring.
Adult dose Loading: 0.5โ€“1 mg/kg IV bolus, then 1โ€“4 mg/kg/h IV infusion; titrate to RASS โˆ’4 to โˆ’5
Route Intravenous only (not suitable for SC infusion)
Key considerations Propofol infusion syndrome risk at >4 mg/kg/h for >48 h; lipid load; requires central or large-bore IV access; continuous SpOโ‚‚/BP/ECG monitoring
PBS status โœ˜ Not PBS-listed for this indication

Practical Approach to Initiating Palliative Sedation

1
Confirm Refractoriness
Complete specialist review; document all failed interventions with doses, durations, and reasons for failure; confirm reversible causes excluded.
2
Consent Discussion
Discuss with patient (if capacity) or substitute decision-maker. Explain intention (symptom relief), foreseeable risks (impaired consciousness, potential shortened survival), alternatives, and that artificial nutrition/hydration is not routinely provided. Document in medical record.
3
Establish SC Access
Insert subcutaneous cannula; attach syringe driver (e.g., CADD-MS 3 or Graseby MS 26). If patient already has IV access, IV midazolam may be used. Prepare breakthrough doses as SC bolus.
4
Commence Midazolam
SC bolus 2.5โ€“5 mg; start infusion at 0.5โ€“1 mg/h; titrate upwards in 0.5โ€“1 mg/h increments every 1โ€“2 h based on symptom response and sedation level (Richmond Agitation-Sedation Scale, RASS). Target: RASS โˆ’2 to โˆ’4 (light to moderate sedation) for proportionate sedation.
5
Monitor and Titrate
Reassess every 2โ€“4 hours initially. Use RASS or observational distress scales. Adjust rate to minimum effective sedation. If midazolam โ‰ฅ15 mg/h without adequate effect, consider switching to or adding phenobarbitone or levomepromazine.
6
Discontinue Non-Essential Medications
Cease non-essential medications (statins, antihypertensives, vitamins, prophylactic medications not directly supporting comfort). Continue essential comfort medications: opioids for pain/dyspnoea, anti-emetics, anticholinergics for secretions. Continue or commence SC hyoscine butylbromide 20 mg or glycopyrrolate for death rattle if indicated.

Artificial Nutrition and Hydration During Palliative Sedation

๐Ÿ’ก
Routine artificial nutrition and hydration (ANH) is not recommended during palliative sedation. ANH has not been shown to improve comfort or survival in advanced terminal illness and may cause fluid overload, oedema, and increased secretions. The decision to forgo ANH should be documented and discussed with the patient/family in advance of sedation where possible. IV fluids at a maintenance rate (e.g., NaCl 0.9% 50 mL/h) may be considered for symptom management (e.g., to allow IV drug delivery) but are not obligatory.

Ethical Safeguards

Palliative sedation occupies a sensitive position at the intersection of symptom relief, end-of-life care, and ethical debate. Australian practice is guided by the principles of medical ethics (autonomy, beneficence, non-maleficence, justice) and the doctrine of double effect.

Core Ethical Principles

Principle Application to Palliative Sedation
Autonomy The patient's right to consent to or refuse treatment is paramount. If the patient has capacity, their informed consent is required. If they lack capacity, the substitute decision-maker (as per state/territory guardianship legislation) provides consent. Advance care directives may include preferences for sedation.
Beneficence The primary intention must be to relieve suffering. Palliative sedation is justified when it is the only remaining means of achieving adequate symptom relief.
Non-maleficence Sedation must be proportionate โ€” the minimum degree of sedation needed to relieve symptoms. The foreseeable (but unintended) risk of shortened survival is accepted under the principle of double effect.
Double Effect An action with both a good effect (symptom relief) and a foreseeable bad effect (potential hastening of death) is ethically permissible if: (1) the intention is the good effect, (2) the bad effect is not the means to the good effect, (3) the good effect outweighs the bad, and (4) there is sufficient reason for permitting the bad effect.
Proportionality The level of sedation must be proportionate to the symptom burden. Deep continuous sedation is a last resort; intermittent or light sedation should be trialled first.

Documentation Requirements

Thorough documentation is both a clinical standard and an ethical safeguard. The following must be recorded in the medical record:

  • Specific symptom(s) being treated and the patient's reported distress level.
  • All interventions attempted, with doses, durations, and outcomes (table format recommended).
  • Specialist review(s) undertaken, including the name and specialty of the reviewing clinician.
  • Confirmation that reversible causes have been excluded.
  • Consent discussion โ€” who was involved, what was discussed, the patient/surrogate's response.
  • Clinical rationale for the chosen sedation regimen, including the distinction between palliative sedation and euthanasia.
  • Decision regarding artificial nutrition and hydration and the rationale for that decision.
  • Monitoring plan and escalation/de-escalation criteria.
  • Second-specialist opinion (where required by institutional policy or jurisdictional law).

When to Seek an Independent Second Opinion

โš ๏ธ
An independent second-specialist opinion is recommended (and in some institutions mandatory) before initiating continuous deep sedation. At minimum, the following situations warrant a second opinion:
  • The patient is not imminently dying (life expectancy >1โ€“2 weeks).
  • There is diagnostic uncertainty regarding the cause of distress.
  • Family or team members express concern about the intent of sedation.
  • The treating team is unfamiliar with the patient.

Distinction from Euthanasia and Voluntary Assisted Dying (VAD)

The following table summarises the critical distinctions between palliative sedation and euthanasia/VAD, as understood in Australian law and medical ethics:

Feature Palliative Sedation Euthanasia / VAD
Primary intention Relieve refractory suffering Cause the patient's death
Effect on dying process May or may not hasten death; death is a foreseeable but unintended consequence Death is the intended outcome
Proportionality Minimum sedation to achieve symptom relief Dose sufficient to cause death
Legal status in Australia Legally permissible in all jurisdictions when clinically indicated Legal only in jurisdictions with VAD legislation; strict eligibility criteria apply
Patient consent Required if patient has capacity; surrogate may consent if patient lacks capacity Patient must have decision-making capacity and make the request themselves (VAD)

Staff Support and Debrief

Providing palliative sedation can be emotionally and ethically challenging for clinicians and nurses. Australian best practice recommends:

  • A clinical debrief within 1โ€“2 weeks of the patient's death, involving all team members who participated in the sedation.
  • Access to Employee Assistance Programme (EAP) or peer support for staff experiencing moral distress.
  • Routine use of reflective practice and Schwartz Rounds (available in many Australian hospitals and hospices).

Monitoring During Palliative Sedation

Monitoring during palliative sedation aims to ensure the patient remains comfortable, that adverse effects are detected early, and that sedation depth is appropriate for the clinical goal. The intensity of monitoring is tailored to the care setting and the patient's trajectory.

Parameter Tool / Method Frequency
Sedation depth Richmond Agitationโ€“Sedation Scale (RASS); observational comfort scale if patient cannot be roused Every 1โ€“2 h for first 12 h; then every 4 h once stable
Pain / symptom assessment Observational pain scales (e.g., Abbey Pain Scale for non-communicative patients); FLACC in paediatrics Every 4 h; PRN with any change
Respiratory rate Direct observation Every 2โ€“4 h; continuous if on propofol
Blood pressure Non-invasive BP Every 4 h (more frequently if on levomepromazine or propofol)
Hydration status Clinical assessment: mucous membranes, skin turgor, urine output Daily
Secretion management Audible rattling; observational assessment Continuous nursing observation
Infusion site SC site inspection for swelling, redness, leakage Every 8โ€“12 h; replace if signs of subcutaneous oedema or extravasation

Escalation and De-escalation

๐Ÿ’ก
If the patient's symptoms improve (e.g., the triggering event resolves), sedation should be de-escalated by reducing the infusion rate in a stepwise fashion. If the sedation level exceeds what is needed for symptom control (RASS โˆ’5 when โˆ’3 would suffice), reduce the rate. Sedation should be increased only if the patient shows signs of uncontrolled distress (e.g., grimacing, restlessness, autonomic signs) despite current sedation depth.

Common Adverse Effects and Management

Adverse Effect Likely Cause Management
Myoclonus Midazolam (at high doses), morphine metabolites Reduce rate; add clonazepam 0.5โ€“1 mg SC/PO BD; switch opioid if morphine-related
Hypotension Levomepromazine, phenobarbitone, dehydration Consider IV fluids if clinically appropriate; reduce dose; assess if within expected trajectory
Excessive secretions Impaired swallow reflex during sedation Hyoscine butylbromide 20 mg SC QDS or glycopyrrolate 0.2 mg SC TDS; positional measures
Paradoxical agitation Benzodiazepine-related disinhibition Switch to phenobarbitone or levomepromazine; reduce midazolam dose

Special Populations

๐Ÿคฐ

Pregnancy

Midazolam
Category C. Benzodiazepines cross the placenta. Risk of neonatal respiratory depression, hypotonia, and withdrawal. Use only when the pregnant patient's refractory suffering is intolerable and all other measures have failed. Involve obstetric and neonatal teams.
Phenobarbitone
Category D. Teratogenic risk (cleft palate, cardiac defects). Neonatal withdrawal syndrome. Avoid unless absolutely necessary and no alternatives exist.
General guidance
Palliative sedation in pregnancy is extremely rare. A multidisciplinary team including palliative medicine, obstetrics, neonatology, ethics, and legal counsel should be convened. Gestational age and fetal viability influence ethical and legal considerations.
๐Ÿ‘ถ

Paediatrics

Midazolam โ€” Paediatric
Loading: 50โ€“100 mcg/kg SC; infusion: 10โ€“60 mcg/kg/h SC (titrated). Monitor closely for respiratory depression. Use observational pain scales (FLACC, COMFORT-B) for assessment.
Phenobarbitone โ€” Paediatric
Loading: 10โ€“15 mg/kg SC/IV; maintenance: 2โ€“4 mg/kg/day in divided doses. Used when midazolam alone is insufficient.
General guidance
Paediatric palliative sedation requires involvement of a paediatric palliative care specialist. Parental consent is essential. The ethical and emotional burden on families and staff is significant; psychosocial support should be proactively offered. Australian state children's hospitals have dedicated palliative care teams (e.g., Bear Cottage, Monash Children's, RCH Melbourne).
๐Ÿ‘ด

Elderly

Midazolam
Start at lower end of dosing range (0.5 mg/h SC); elderly patients are more sensitive to benzodiazepines. Increased risk of excessive sedation, respiratory depression, and falls if patient is intermittently roused. Monitor RASS closely.
Levomepromazine
Higher risk of hypotension and extrapyramidal effects in the elderly. Start at 3.125โ€“6.25 mg SC and titrate slowly.
General guidance
Review polypharmacy โ€” cease non-essential medications before initiating sedation. Assess for pre-existing cognitive impairment and adjust substitute decision-making arrangements. Many elderly patients in residential aged care facilities can receive palliative sedation on-site with specialist telehealth support.
๐Ÿซ˜

Renal Impairment

Midazolam
Active metabolite (ฮฑ-hydroxymidazolam) accumulates in renal failure. Prolonged sedation expected. Use lower infusion rates and longer titration intervals. Consider halving the initial rate.
Phenobarbitone
Renally excreted (~25โ€“50%). Accumulation in CKD. Monitor sedation depth and reduce dose if prolonged effect. No specific dose adjustment guideline โ€” titrate to effect.
General guidance
If the patient is on haemodialysis or peritoneal dialysis, discuss with the nephrology team whether to continue, modify, or cease dialysis during palliative sedation. Most patients receiving palliative sedation will have dialysis ceased as part of the comfort-focused care plan.
๐Ÿซ

Hepatic Impairment

Midazolam
Hepatic clearance significantly reduced. Reduce dose by 50% in Child-Pugh Bโ€“C. Prolonged half-life (may double or triple). Titrate cautiously and expect slower onset-to-effect.
Levomepromazine
Hepatically metabolised. Use lower doses and monitor for excessive sedation and hypotension.
General guidance
Hepatorenal syndrome may co-exist โ€” dual renal/hepatic impairment significantly prolongs drug effects. Consider phenobarbitone as a hepatically metabolised alternative that may be more predictable than midazolam in severe hepatic disease, though evidence is limited.
๐Ÿ›ก๏ธ

Immunocompromised

General guidance
Immunocompromised patients (HIV/AIDS, transplant recipients, chemotherapy-induced immunosuppression) may develop refractory symptoms from opportunistic infections or treatment-related toxicity. Ensure infection-related causes of delirium and dyspnoea are actively treated before declaring symptoms refractory. Antimicrobial therapy for active infections should generally be continued or commenced alongside palliative sedation unless the patient/family has elected to forgo such treatment.

Aboriginal and Torres Strait Islander Health Considerations

Aboriginal and Torres Strait Islander Health

End-of-life care for Aboriginal and Torres Strait Islander peoples requires a culturally safe, strengths-based approach that respects family structures, Country, spirituality, and self-determination. The concept of "a good death" may differ significantly from Western biomedical norms, and decisions about palliative sedation must be navigated with cultural humility.

Key Considerations

Cultural understanding of death and dying
Many Aboriginal and Torres Strait Islander peoples hold strong cultural and spiritual beliefs about death, Country, and the afterlife. The dying process may be considered sacred, and there may be reluctance to use sedation that is perceived to interfere with the person's connection to family, Country, or ancestors. Engage with the patient and family (broadly defined โ€” including extended kinship networks) early and sensitively.
Sorry Business and family involvement
Sorry Business (mourning and funeral practices) is of profound cultural significance. Decisions about sedation and the timing of death affect entire communities. Families may wish for the patient to remain conscious to say goodbye to extended family members who are travelling long distances. Proportionate/intermittent sedation may be particularly valued to allow periods of wakefulness.
Language and health literacy
Ensure information about palliative sedation is communicated in plain English or the patient's preferred Aboriginal language, using interpreters where available (Aboriginal Interpreter Service in the NT, Aboriginal and Torres Strait Islander Health Workers). Avoid medical jargon; use visual aids and culturally appropriate explanatory tools.
Distrust of health services
Historical and ongoing experiences of racism and systemic inequity in health care contribute to mistrust. Aboriginal health workers and liaison officers should be involved as cultural brokers and advocates. Be transparent about the intention of sedation and explicitly distinguish it from euthanasia to address fears of harm.
Remote and very remote access
Many Aboriginal and Torres Strait Islander people live in remote and very remote communities where specialist palliative care access is extremely limited. Telehealth palliative care consultations, Royal Flying Doctor Service (RFDS) retrieval and support, and training of remote area nurses (RANs) in palliative sedation initiation and monitoring are critical. NT and WA have specific remote palliative care frameworks.
Closing the Gap and palliative care equity
The National Agreement on Closing the Gap (2020) includes Outcome 1 (longer, healthier lives) and Outcome 14 (Aboriginal and Torres Strait Islander people enjoy high levels of social and emotional wellbeing). Equitable access to culturally safe palliative care, including palliative sedation when indicated, is a component of these commitments. AIHW data consistently show that Aboriginal and Torres Strait Islander peoples have higher mortality rates from conditions where palliative care is indicated, yet lower rates of specialist palliative care access.

Recommended Actions

  • Involve an Aboriginal health worker or Torres Strait Islander health worker from the outset of palliative care planning.
  • Use culturally specific palliative care resources (e.g., Palliative Care Australia's Caring for Aboriginal and Torres Strait Islander Peoples at the End of Life guide; RHDAustralia resources).
  • Respect the patient's and family's wishes regarding the degree and timing of sedation โ€” proportionate sedation allowing intermittent wakefulness may be preferred.
  • Support Country-based dying where possible โ€” some patients wish to return to their community or Country, and palliative sedation may need to be initiated or continued in remote settings with telehealth specialist support.
  • Ensure bereavement support is available for the broader community, not just immediate family.
  • Avoid assumptions โ€” ask about cultural preferences; do not project a single cultural framework onto diverse Aboriginal and Torres Strait Islander communities.

๐Ÿ“š References

  1. 1. Cherny NI, Portenoy RK. Sedation in the management of refractory symptoms: guidelines for evaluation and treatment. J Palliat Care. 1994;10(2):31โ€“38.
  2. 2. Maltoni M, Scarpi E, Rosati M, et al. Palliative sedation in end-of-life care and survival: a systematic review. J Clin Oncol. 2012;30(12):1378โ€“1383.
  3. 3. Schildmann E, Schildmann J. Palliative sedation therapy: a systematic literature review and critical appraisal of available guidance on indication and decision making. J Palliat Med. 2014;17(6):712โ€“723.
  4. 4. Palliative Care Australia. National Palliative Care Standards. 5th ed. Canberra: Palliative Care Australia; 2018.
  5. 5. Australian Commission on Safety and Quality in Health Care (ACSQHC). National Safety and Quality Health Service Standards. 2nd ed. Sydney: ACSQHC; 2021.
  6. 6. Australian Institute of Health and Welfare (AIHW). Palliative care services in Australia. Canberra: AIHW; 2023. Available at: aihw.gov.au.
  7. 7. Royal Australian College of General Practitioners (RACGP). End-of-life care and palliative care: a guide for general practitioners. Melbourne: RACGP; 2020.
  8. 8. Quill TE, Dresser R, Brock DW. The rule of double effect โ€” a critique of its role in end-of-life decision making. N Engl J Med. 1997;337(24):1768โ€“1771.
  9. 9. CareSearch. Sedation at the end of life. Adelaide: Flinders University; 2023. Available at: caresearch.com.au.
  10. 10. Voluntary Assisted Dying Act 2017 (Vic); Voluntary Assisted Dying Act 2019 (WA); Voluntary Assisted Dying Act 2021 (Qld); End-of-Life Choices (Assisted Dying) Act 2021 (Tas); Voluntary Assisted Dying Act 2021 (SA); Voluntary Assisted Dying Act 2022 (NSW).
  11. 11. Abarshi E, Rietjens J, Robijn L, et al. International variations in clinical practice guidelines for palliative sedation: a systematic review. BMJ Support Palliat Care. 2017;7(3):223โ€“229.
  12. 12. Senior HE, Auret KA, Agnew S, et al. Addressing the interface: palliative sedation and the Australian medical profession. Intern Med J. 2019;49(10):1265โ€“1271.
  13. 13. Australian Institute of Health and Welfare (AIHW). Aboriginal and Torres Strait Islander Health Performance Framework. Canberra: AIHW; 2023.
  14. 14. Shahid S, Bessarab D, van Schaik KD, et al. Improving palliative care outcomes for Aboriginal and Torres Strait Islander Australians: a mixed-methods systematic review. BMC Palliat Care. 2020;19(1):18.
  15. 15. Cherny NI, ESMO Guidelines Working Group. ESMO Clinical Practice Guidelines: palliative sedation. Ann Oncol. 2021;32(12):1501โ€“1513.
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 ยฑ NSAID; manual therapy
2โ€“6 weeks
Provocable on palpation; no red flags
Thoracic compression fracture
Paracetamol; ยฑ calcitonin; DXA + osteoporosis Rx
6โ€“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 ยฑ morphine; lap cholecystectomy
Surgical within 72 h (cholecystitis)
RUQ/infrascapular; post-prandial; RUQ US

๐Ÿ“š 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):760โ€“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):60โ€“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):395โ€“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):E581โ€“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):112โ€“120.
  10. 10. Strayer RJ, Gunnerson JM, Brown LH, et al. Aortic dissection: clinical features, diagnosis, and management. Aust Crit Care. 2019;32(2):144โ€“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):805โ€“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 3โ€“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.

๐Ÿ“š 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):924โ€“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):736โ€“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):1583โ€“1599.
  5. 5. Smolen JS, Landewรฉ 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):3โ€“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):1487โ€“1498.
  10. 10. Pisetsky DS. Antinuclear antibody testing โ€” 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 Associationโ€“European Dialysis and Transplant Association (EULAR/ERA-EDTA) recommendations for the management of adult and paediatric lupus nephritis. Ann Rheum Dis. 2012;71(11):1771โ€“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 TNFฮฑ blockers in adults with rheumatoid arthritis. Rheumatology. 2005;44(2):155โ€“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 3โ€“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.

๐Ÿ“š 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):924โ€“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):736โ€“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):1583โ€“1599.
  5. 5. Smolen JS, Landewรฉ 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):3โ€“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):1487โ€“1498.
  10. 10. Pisetsky DS. Antinuclear antibody testing โ€” 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 Associationโ€“European Dialysis and Transplant Association (EULAR/ERA-EDTA) recommendations for the management of adult and paediatric lupus nephritis. Ann Rheum Dis. 2012;71(11):1771โ€“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 TNFฮฑ blockers in adults with rheumatoid arthritis. Rheumatology. 2005;44(2):155โ€“158.
  13. 13. National Health and Medical Research Council (NHMRC). National statement on ethical conduct in human research. Canberra: NHMRC; 2023 (updated).