Hydration and Nutrition at End of Life

Last updated 1 Jun 2026 · Palliative care

📋 Key Information Summary

📋

Reduced oral intake and thirst are natural, expected changes in the dying process and are not a reliable indicator of distress or suffering.
Clinically assisted nutrition and hydration (CANH) in the last days of life generally does not improve survival, comfort, or quality of life and may cause harm including fluid overload, pulmonary oedema, and increased secretions.
Dry mouth is the most common symptom related to reduced intake — it results primarily from medications (opioids, anticholinergics) and mouth-breathing rather than systemic dehydration.
Meticulous oral care — regular mouth rinses, ice chips, lip moisturisers, and saliva substitutes — is the mainstay of dry mouth management at end of life.
Systemic stimulants such as pilocarpine 5 mg PO TDS or bethanechol may be trialled when topical measures fail; subcutaneous glycopyrrolate (glycopyrronium) can reduce problematic secretions.
If assisted hydration is considered, subcutaneous (hypodermoclysis) infusion of 0.9% sodium chloride or 5% dextrose at 500–1000 mL/24 h is preferred over IV access; benefits typically take 3–5 days to manifest if present at all.
Assisted enteral or parenteral nutrition near end of life does not prolong comfortable survival and carries risks of aspiration, infection, oedema, and procedural discomfort; tube feeding should generally not be commenced solely because of reduced oral intake.
Transparent, compassionate communication with patients and families — using frameworks such as SPIKES or NURSE — is essential to address fears of "starvation" and to align care with the patient's values and goals.
Cultural and religious practices around food, water, and dying vary widely; clinicians should actively explore these with families to avoid distress and moral injury.
Advance care planning and documented goals-of-care conversations should guide decisions; withholding or withdrawing CANH is ethically and legally permissible when it is no longer beneficial.
Aboriginal and Torres Strait Islander families may have particular cultural obligations around feeding, Country, and sorry business — early engagement with Indigenous health workers and liaison officers is vital.
Regular reassessment of symptoms, goals, and family concerns is required; decisions about hydration and nutrition should be reviewed at least daily in the last days of life.

Introduction & Australian Epidemiology

As death approaches, most patients experience a progressive decline in oral intake — reduced appetite (anorexia), diminished thirst, and eventual cessation of eating and drinking. This is a natural part of the dying trajectory and is not synonymous with distress, starvation, or neglect. However, it remains one of the most confronting and emotionally charged experiences for families, carers, and sometimes clinicians.

Effective end-of-life care requires the ability to distinguish between symptoms that require active management (e.g., dry mouth, nausea), normal physiological changes of the dying process, and situations where artificial nutrition or hydration might be considered. Transparent communication and shared decision-making are cornerstones of best practice.

⚠️

Clinical misconception: Thirst and hunger in the actively dying patient are not reliably assessed by oral intake volume. Studies show that dying patients who receive no artificial fluids do not report significantly more thirst than those who do, and the small amounts of fluid they receive from mouth care are usually sufficient to maintain comfort.

Australian Context

Approximately 170,000 Australians die each year (2023 data). The majority of deaths occur in hospitals (~54%), with ~20% in residential aged care and ~15% at home (AIHW, 2023).
Palliative Care Australia estimates that 70–80% of Australians would prefer to die at home, yet the proportion achieving this remains lower than desired.
Decisions around clinically assisted nutrition and hydration (CANH) arise in virtually every palliative care admission and in many aged-care settings. A 2019 Australian audit found that CANH was continued in the last 48 hours of life in approximately 30% of hospital deaths — often because families requested it rather than clinical indication.
The Australian Commission on Safety and Quality in Health Care (ACSQHC) National Consensus Statement: Essential Elements for Safe and High-Quality End-of-Life Care (2015) emphasises communication, shared decision-making, and symptom management as core standards.
Medicare Benefits Schedule (MBS) item 14220 (specialist palliative medicine consultation) and GP chronic disease management items support end-of-life care planning. Palliative medicines (e.g., subcutaneous morphine, midazolam, glycopyrronium) are available under the PBS Section 100 (Palliative Care) program.

Definitions

Term	Definition
Terminal dehydration	The progressive fluid deficit that occurs as part of the natural dying process when oral intake ceases; distinguished from pathological dehydration seen in acute illness.
CANH	Clinically assisted nutrition and hydration — encompasses subcutaneous (SC), intravenous (IV), nasogastric (NG), percutaneous endoscopic gastrostomy (PEG), and total parenteral nutrition (TPN).
Last days of life	Generally defined as the period when death is expected within hours to a few days (typically ≤ 14 days); characterised by semi-consciousness or unconsciousness, minimal oral intake, and signs of organ failure.
Terminal secretions	Pooled oropharyngeal and bronchial secretions causing a "death rattle"; occurs in 25–92% of dying patients; not distressing to the patient (who is typically unconscious) but may distress family.

Dry Mouth Care

Xerostomia (dry mouth) is reported by 30–80% of patients receiving palliative care and is consistently rated as one of the most distressing symptoms. At end of life, dry mouth is primarily caused by medications (opioids, anticholinergics, diuretics, antihistamines), mouth-breathing, and oxygen therapy — not by systemic dehydration per se. Consequently, correcting fluid balance alone rarely resolves the symptom.

Assessment

Use a validated tool such as the Visual Analogue Scale (VAS) for dry mouth or the Xerostomia Inventory (XI) in patients who can self-report.
For non-communicative patients, assess for signs: dry/cracked lips, dry furrowed tongue, thick ropy saliva, inability to chew or swallow, and the patient repeatedly touching their mouth.
Review contributing medications — consider dose reduction or substitution where safe (e.g., switch morphine to fentanyl or methadone if xerostomia is intolerable).

Non-Pharmacological Measures (First-Line)

Regular oral care protocol: Gentle brushing or swabbing of teeth, gums, tongue, and palate every 2–4 hours; use a soft toothbrush or foam swabs (Toothette®).
Moisturising mouth rinse: Sodium bicarbonate rinse (½ teaspoon in 250 mL water) or commercial preparations (e.g., Biotène® Oral Balance rinse). Avoid alcohol-based mouthwashes.
Ice chips / frozen pineapple juice pieces: Can provide temporary relief and are well-tolerated; pineapple juice has the added benefit of mild enzymatic mucolytic action.
Lip care: Regular application of aqueous cream, lanolin, or petroleum-free lip balm (e.g., Papaw ointment). Avoid petroleum-based products if oxygen is in use (fire risk).
Saliva substitutes: Products containing carboxymethylcellulose (e.g., Biotène® Oralbalance gel) or hydroxymethylcellulose applied to oral mucosa every 2–4 hours.
Humidification: A cool-mist humidifier at the bedside or placing a damp cloth near the mouth can help, particularly with oxygen therapy.

Pharmacological Measures (Second-Line)

💊

Pilocarpine

Salagen® · Parasympathomimetic / muscarinic agonist

Adult dose 5 mg PO TDS; may increase to 10 mg TDS; onset 20–30 minutes

Paediatric dose Not routinely used in paediatric palliative care; limited evidence

Route Oral

Renal adjustment Use caution in eGFR <30; dose reduction may be needed

Hepatic adjustment No specific adjustment; monitor for adverse effects

Key side effects Diaphoresis, nausea, urinary frequency, bronchospasm (caution in COPD/asthma)

PBS status ⚠ PBS Authority Required

💊

Bethanechol

Myotonine® · Parasympathomimetic / muscarinic agonist

Adult dose 10–25 mg PO TDS (off-label for xerostomia); onset 30–60 minutes

Paediatric dose Not established for xerostomia

Route Oral

Renal adjustment Reduce dose if eGFR <30

Key side effects Abdominal cramps, flushing, hypotension; avoid in asthma and GI obstruction

PBS status ✘ Not PBS listed for xerostomia

💊

Glycopyrronium (glycopyrrolate)

Sialanar® · Anticholinergic (reduces secretions)

Adult dose 200 µg SC TDS–QID for excessive/thick secretions (NOT for dry mouth — used for "death rattle")

Paediatric dose 4–10 µg/kg SC Q4–6H (max 200 µg/dose)

Route Subcutaneous, IV, or sublingual

Renal adjustment Use lower doses; excreted renally

Key side effects Constipation, urinary retention, tachycardia, dry mouth

PBS status ✔ PBS Section 100 — Palliative Care

💡

Clinical tip: Hyoscine butylbromide (Buscopan®) 20 mg SC Q4–6H is an alternative anticholinergic for reducing terminal secretions. Hyoscine hydrobromide is not recommended in palliative care due to its CNS effects (sedation, confusion, agitation). Use hyoscine butylbromide (quaternary ammonium compound — does not cross the blood–brain barrier).

Assisted Hydration

The decision to provide clinically assisted hydration (CAH) near the end of life is one of the most ethically complex and emotionally charged issues in palliative medicine. Current evidence — including systematic reviews and randomised controlled trials — does not support a routine benefit from CAH in the last days of life in terms of survival, comfort, or symptom burden. In some patients, CAH may cause harm.

🚨

Potential harms of assisted hydration near end of life: Fluid overload, peripheral and pulmonary oedema, increased bronchial and oropharyngeal secretions (worsening death rattle), worsening ascites, increased urinary output (requiring catheterisation), increased nausea, and the discomfort of IV or SC line insertion/maintenance.

When to Consider Assisted Hydration

CAH may be appropriate in specific circumstances where the patient is not in the last days of life but has reversible or modifiable causes of reduced intake:

Opioid toxicity

If drowsiness and reduced intake are caused by opioid accumulation (especially with renal impairment), hydration may be appropriate while the opioid is rotated or dose-adjusted.

Hypercalcaemia

IV 0.9% saline hydration is standard treatment for symptomatic hypercalcaemia of malignancy, combined with zoledronic acid or denosumab.

Reversible bowel obstruction

If surgical or medical management is planned, IV hydration is appropriate as a bridge.

Delirium with dehydration component

A brief trial of cautious hydration (with clear goals and time-limited plan) may be warranted if dehydration is contributing to delirium and the patient has weeks–months prognosis.

Patient/family request after shared decision-making

After thorough discussion of risks, benefits, and alternatives, a cautious time-limited trial of hydration may be reasonable for compassionate reasons if the patient is not actively dying.

Routes of Administration

Route	Details	Advantages	Disadvantages
Subcutaneous (hypodermoclysis)	24G butterfly or Teflon cannula in anterior thigh, abdomen, or upper arm. 0.9% NaCl or 5% dextrose at 500–1000 mL/24 h (may use infusion pump or gravity). Add hyaluronidase 150 units SC to site to improve absorption if needed.	Simple, can be done at home; minimal discomfort; lower infection risk than IV; no need for X-ray confirmation	Absorption may be reduced in oedematous or very cachectic patients; site reactions; limited volume delivery (typically ≤ 1500 mL/24 h per site)
Intravenous	Peripheral IV or PICC line. 0.9% NaCl or 5% dextrose at 500–1000 mL/24 h.	Reliable delivery; allows administration of IV medications simultaneously	Requires venous access; higher infection/thrombosis risk; requires line maintenance; more invasive and uncomfortable
Nasogastric / PEG	Fluids can be delivered via enteral tube (see Assisted Nutrition section).	Useful if enteral route already in situ	Tube-related discomfort; aspiration risk; not recommended to insert solely for hydration near end of life

Monitoring During a Trial of Hydration

Set clear goals: Define what "success" looks like (e.g., improved alertness, reduced agitation) and what would prompt discontinuation (e.g., worsening oedema, no benefit after 48–72 hours).
Time-limited: Review at 48–72 hours. If no discernible benefit, discontinue.
Daily fluid balance: Input/output chart; watch for fluid overload signs (peripheral oedema, increased secretions, dyspnoea).
Electrolytes: Baseline and at 48 hours if on IV fluids. Hyponatraemia and hypernatraemia can both occur.
Symptom diary: Document patient comfort, thirst perception, secretions, and any distress.

✅

Key message: Withholding or withdrawing assisted hydration when it is no longer benefiting the patient is ethically and legally appropriate. It is not euthanasia or assisted dying — it allows the natural dying process to proceed while maintaining comfort-focused care. The National Health and Medical Research Council (NHMRC) and Palliative Care Australia endorse this position.

Assisted Nutrition

Loss of appetite and progressive reduction in oral intake are universal features of advanced disease and the dying process. Multiple factors contribute: disease-related cachexia, nausea, mucositis, dysphagia, fatigue, altered taste, medication side effects, and the body's natural metabolic down-regulation. Patients who stop eating near death do not experience the suffering associated with voluntary starvation — ketosis produces mild euphoria and reduced hunger.

⚠️

Important: Involuntary weight loss and anorexia-cachexia syndrome in advanced cancer, motor neurone disease, and other progressive illnesses are driven by inflammatory cytokines, not by caloric deficit alone. Providing additional calories does not reverse the catabolic state, rebuild muscle, or improve survival in advanced disease.

Evidence Summary

Intervention	Evidence for Benefit	Harms / Risks
Oral nutritional supplements (ONS)	May improve caloric intake short-term; minimal effect on survival or lean body mass in advanced disease. Can be helpful in earlier palliative phase (weeks–months prognosis).	Nausea, early satiety, diarrhoea; financial cost; may distract from comfort-focused care.
Nasogastric (NG) tube feeding	No survival benefit in advanced cancer or end-stage dementia. May be beneficial in selected patients with non-malignant conditions and weeks–months prognosis (e.g., post-stroke dysphagia, MND).	Aspiration pneumonia (up to 50% in debilitated patients), tube dislodgement, nasal discomfort, patient distress, restraint if patient pulls at tube, sinusitis.
Percutaneous endoscopic gastrostomy (PEG)	May be appropriate in specific conditions (e.g., head and neck cancer for radiotherapy bridge, MND) where prognosis is weeks–months and the patient can tolerate the procedure.	Procedure-related morbidity/mortality (1–4% major complications); wound infection; peritonitis; tube migration; aspiration.
Parenteral nutrition (TPN)	No role in end-of-life care. Only considered in very specific oncological situations (e.g., short bowel post-surgery, intestinal failure) with specialist nutrition team input.	Line infection, metabolic complications, fluid overload, thrombosis; requires central venous access; costly; significantly restricts mobility.

Supportive Measures for Oral Intake

Offer small, frequent, favourite foods — the patient's preferences should guide choices; social eating in a comfortable setting may be more important than nutritional content.
Texture modification: Soft or pureed foods, thickened fluids if dysphagia is present (Speech Pathology Australia texture levels). Involve a speech pathologist for assessment.
Address reversible causes: Treat nausea (metoclopramide, haloperidol, ondansetron), oral candidiasis (nystatin, fluconazole), mucositis (morphine mouthwash), constipation (osmotic laxatives).
Appetite stimulants in earlier palliative phase: dexamethasone 4–8 mg PO mane (short-term — 1–2 week trial), megestrol acetate 160–320 mg PO daily (takes 1–2 weeks to work); both have significant side-effect profiles.
Avoid forcing food or fluids. Offer; do not insist. Respect the patient's declining intake as part of the natural process.

💊

Dexamethasone

Various · Corticosteroid (appetite stimulant)

Adult dose 4–8 mg PO mane (morning); trial for 1–2 weeks then taper if no benefit

Paediatric dose 0.1–0.3 mg/kg/day PO (max 8 mg)

Route Oral, IV, SC

Key side effects Hyperglycaemia, myopathy, insomnia, GI irritation, immunosuppression, proximal muscle weakness (long-term)

PBS status ✔ PBS General Benefit

💊

Megestrol acetate

Megace® · Progestogen (appetite stimulant)

Adult dose 160–320 mg PO daily in divided doses; onset 1–2 weeks

Paediatric dose Not routinely recommended

Route Oral (suspension or tablets)

Key side effects Thromboembolism (black box), fluid retention, hyperglycaemia, adrenal suppression, impotence

PBS status ⚠ PBS Authority Required

Ethical and Legal Framework (Australian)

Artificial nutrition and hydration are medical treatments, not basic care. They can be withheld or withdrawn when they are no longer in the patient's best interests (Australian Health Practitioner Regulation Agency, AHPRA; NHMRC guidelines).
Competent patients have the right to refuse nutrition and hydration, including via advance care directives.
For patients without decision-making capacity, substitute decision-makers (under state/territory guardianship legislation) should act in the patient's best interests, considering previously expressed wishes.
Withholding or withdrawing CANH is not equivalent to euthanasia or assisted dying under Australian law. It is considered a proportionate withdrawal of a treatment that is no longer beneficial.

Cultural & Family Concerns

Few topics in end-of-life care generate as much distress, conflict, and moral anguish among families (and clinicians) as the decision to reduce or forgo hydration and nutrition. In many cultures, food and water are symbols of love, care, and life itself. Stopping feeding can feel like abandonment, neglect, or even killing. Addressing these concerns proactively and compassionately is essential.

Communication Frameworks

SPIKES Protocol

Setting up, Perception, Invitation, Knowledge, Emotions, Summary/strategy. Use this structured approach for discussing prognosis and the natural dying process. (Baile et al., Lancet Oncol 2002)

NURSE Statements

Naming, Understanding, Respecting, Supporting, Exploring. Use these empathic responses to acknowledge and validate family distress. E.g., "I can see this is very distressing for you. Feeding someone is how you show love — and that love doesn't stop."

Reframing

Help families understand that: "Your loved one's body is shutting down naturally. Forcing food and fluids may actually cause discomfort — swelling, breathlessness, nausea. The best care we can give now is keeping them comfortable, peaceful, and surrounded by the people who love them."

Small Acts of Care

Redirect the family's need to "do something" into meaningful actions: lip care, gentle mouth swabbing, holding hands, playing favourite music, reading aloud, reminiscing, or simply sitting together in silence.

Common Cultural and Religious Considerations

Culture / Religion	Considerations Regarding Hydration and Nutrition at End of Life
Aboriginal and Torres Strait Islander	Food sharing is a core cultural practice. Some families may feel strongly about continuing to offer food and water. Sorry business and connection to Country are important. Decision-making may be collective (family/community rather than individual). Engagement with Indigenous liaison officers and health workers is essential.
Catholic / Christian	Ordinary care (including basic mouth care) is expected; extraordinary means (CANH) may be ethically withdrawn if burdens outweigh benefits. Pastoral care and chaplaincy support can help families navigate moral distress. The Vatican's 2007 statement notes that CANH is "morally obligatory" only if it achieves its purpose of nourishment without excessive burden.
Islam	Providing food and water to the sick is a religious duty in Islamic tradition. There may be strong resistance to withholding fluids. Discussions with an imam or Muslim bioethicist may be helpful. Withholding futile treatment is generally accepted under the principle of la darar wa la dirar (no harm, no reciprocal harm).
Hinduism	Hindu traditions emphasise duty (dharma) of family to care for the dying. Ritual water (Ganges water) may be offered. Respectful exploration of spiritual practices is important.
Judaism	Pikuach nefesh (preservation of life) is paramount. Orthodox positions may vary — some authorities consider CANH ordinary care that should not be withdrawn; others accept withdrawal when treatment is causing suffering. A rabbi or Jewish bioethicist should be consulted.
Buddhism	Generally accepting of the natural dying process. Focus on peaceful transition; meditation and chanting at bedside. Compassionate non-intervention is often consistent with Buddhist teachings on impermanence.

💡

Practical tip: Always ask: "Are there any cultural, spiritual, or religious practices that are important to you and your family around food, water, and caring for someone who is dying?" This single question can open crucial dialogue and prevent later conflict.

Managing Conflict

Seek early ethics consultation — most Australian hospitals have clinical ethics committees accessible via the hospital switchboard.
Involve the palliative care team early; specialist palliative care nurses and social workers are highly skilled in family meetings.
Hold structured family meetings with a clear agenda: introductions, update, goals, recommendations, eliciting concerns, plan.
Document all discussions, decisions, and the rationale in the medical record.
Offer a time-limited trial as a compromise when families are unable to accept withdrawal of CANH — with agreed review at 48–72 hours and clear criteria for stopping.
Consider mediation if conflict persists; state guardianship boards or the Public Advocate can be involved as a last resort if patient best interests are at risk.

Special Populations

👶

Paediatrics

Neonates and infants: Decision-making around hydration and nutrition is particularly complex and emotionally devastating. Parental involvement is essential. Neonatal palliative care teams (e.g., Bear Cottage, Very Special Kids) can provide specialist support.

Children with life-limiting conditions: Many children (e.g., severe neurological impairment, metabolic disease) may have had long-term enteral feeding via PEG. Withdrawal decisions require multidisciplinary team input, ethics review, and extensive family discussion.

Oral care in children: Use age-appropriate mouth swabs; avoid products containing benzocaine in infants (<2 years — risk of methaemoglobinaemia); apply lanolin-based lip care.

Communication: Use developmentally appropriate language with children who have decision-making capacity; involve child life therapists and play therapists.

👴

Elderly / Residential Aged Care

Dementia: Progressive loss of swallowing ability is a natural feature of end-stage dementia. Feeding tubes do not improve survival, prevent aspiration, or improve comfort in advanced dementia (AGS Position Statement 2014). Meticulous hand-feeding with favourite foods is the recommended approach.

Aged care facility considerations: Ensure facility policies align with current evidence. Staff education is essential to prevent "reflex" NGT insertion or IV line placement. The Aged Care Quality Standards require person-centred end-of-life care.

Medication review: Elderly patients on multiple anticholinergic medications (antihistamines, tricyclics, antipsychotics) are at higher risk of xerostomia; undertake a medication review using the Beers Criteria or STOPP/START criteria.

Oral care: Dentures should be cleaned regularly and removed overnight to prevent aspiration. Assess for oral candidiasis (common in elderly, denture-wearers, inhaled corticosteroid users).

🫘

Renal Impairment

Dialysis withdrawal: For patients withdrawing from maintenance dialysis, survival is typically 7–14 days. Aggressive fluid restriction is not required — allow comfortable oral intake of whatever the patient desires. Symptomatic fluid management with subcutaneous furosemide or small-volume SC fluids may be needed.

Opioid caution: Morphine-6-glucuronide accumulates in renal failure → prefer fentanyl, hydromorphone, or methadone. If assisted hydration is considered, excess fluid may worsen peripheral oedema in anuric/oliguric patients.

Electrolytes: Monitor potassium in patients with residual renal function receiving hydration; hyperkalaemia may contribute to symptoms.

🫁

Hepatic Impairment

Ascites and oedema: Patients with end-stage liver disease may already be fluid-overloaded. Adding assisted hydration can worsen ascites (requiring paracentesis), peripheral oedema, and hepatic hydrothorax.

Hyponatraemia: Dilutional hyponatraemia is common in liver failure; IV 0.9% saline may worsen this. Fluid restriction is often more appropriate than hydration.

Drug metabolism: Reduced hepatic clearance of many drugs; reduce doses of opioids metabolised hepatically (e.g., codeine, tramadol → avoid; morphine → use cautiously).

🛡️

Immunocompromised

Mucositis: Common in post-chemotherapy or post-transplant patients. Severe mucositis causes pain, reduced oral intake, and secondary infection. Treat with regular oral care, viscous lidocaine 2% (diluted), benzydamine mouthwash, and systemic analgesia. Cryotherapy (ice chips during chemotherapy infusion) can prevent mucositis in some regimens.

Infection risk: IV and SC line sites are potential infection foci in neutropenic patients; ensure aseptic technique and regular site monitoring.

Fungal infections: Oral candidiasis is prevalent; treat with nystatin suspension or fluconazole 50–100 mg PO daily for 7–14 days.

🤰

Pregnancy

Rare scenario: Palliative care during pregnancy is uncommon but requires careful consideration of both maternal comfort and fetal wellbeing.

Medications: Pilocarpine is Category B3; use only if clearly needed. Dexamethasone crosses the placenta (consider betamethasone as an alternative where possible). Standard oral care measures are safe.

Hydration: Physiological changes of pregnancy (increased blood volume, cardiac output) mean fluid overload occurs at lower volumes; use caution with assisted hydration and monitor closely.

Aboriginal and Torres Strait Islander Health Considerations

Aboriginal and Torres Strait Islander Health

Aboriginal and Torres Strait Islander Australians have a unique relationship with food, family, Country, and dying. End-of-life care must be delivered in a culturally safe manner, recognising that Western biomedical approaches to hydration and nutrition may conflict with Indigenous cultural values and practices. Indigenous Australians experience a burden of disease 2.3 times that of non-Indigenous Australians and are more likely to die from chronic conditions (AIHW, 2023).

Food as culture and connection

Sharing food is a fundamental expression of love, kinship, and cultural obligation in many Aboriginal and Torres Strait Islander communities. Stopping feeding — even when medically indicated — can be perceived as abandonment, disrespect, or culturally harmful. Clinicians must approach these discussions with deep respect, cultural humility, and patience.

Family and community decision-making

Decision-making about end-of-life care may involve extended family, Elders, and community — not just the patient and next of kin. Western concepts of individual autonomy may not align with collective decision-making models. Allow time for family consultation and involve Aboriginal and Torres Strait Islander health workers or liaison officers early.

Sorry business and dying on Country

Many Aboriginal people wish to return to Country to die. Transporting a patient who has reduced oral intake to a remote community requires planning for comfort medications and symptom management during transit. The Palliative Care NSW "Dying on Country" framework and RHDAustralia resources provide guidance.

Remote and rural access

Specialist palliative care services are limited in remote communities. Community-controlled health organisations (ACCHOs) such as Aboriginal Medical Services (AMSs) are critical providers. Telehealth palliative care consultations (MBS items 99200–99215) can support remote clinicians. Subcutaneous medications and oral care supplies should be stocked in remote clinic formularies.

Communication and health literacy

Use plain language, visual aids, and culturally appropriate resources. Avoid medical jargon. The Royal Flying Doctor Service and Palliative Care Australia have developed Indigenous-specific end-of-life care resources. Consider language barriers — interpreters may be needed for patients whose primary language is not English.

Distrust of health system

Historical and ongoing experiences of racism and systemic disadvantage contribute to distrust. Building rapport, spending time listening, and involving trusted Aboriginal health practitioners can help. Acknowledge the strength and resilience of Indigenous communities.

Spiritual practices

Traditional healing practices, smoking ceremonies, and connection to Country may be integral to the dying process. Ensure the healthcare environment supports these practices (e.g., outdoor spaces, flexibility with visiting, accommodating cultural ceremonies).

💚

Resource: RHDAustralia (www.rhdaustralia.com.au) provides culturally appropriate clinical guidelines and resources for rheumatic heart disease management in Aboriginal and Torres Strait Islander communities. Palliative Care Australia's "Palliative Care and End-of-Life Care for Aboriginal and Torres Strait Islander Australians" guide (2020) is an essential reference. The Australian Indigenous Doctors' Association (AIDA) position statements on end-of-life care are also valuable.

📚 References

1. Good P, Cavenagh J, Mather M, Ravenscroft P. Medically assisted hydration for adult palliative care patients. Cochrane Database Syst Rev. 2008;(2):CD006273. doi:10.1002/14651858.CD006273.pub2.
2. Bruera E, Hui D, Dalal S, et al. Parenteral hydration in patients with advanced cancer: a multicenter, double-blind, placebo-controlled randomized trial. J Clin Oncol. 2013;31(1):111–118.
3. Palliative Care Australia. National Palliative Care Standards. 5th ed. Canberra: Palliative Care Australia; 2018.
4. 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.
5. Australian Institute of Health and Welfare (AIHW). Deaths in Australia. Cat. no. PHE 229. Canberra: AIHW; 2023.
6. American Geriatrics Society (AGS). American Geriatrics Society feeding tubes in advanced dementia position statement. J Am Geriatr Soc. 2014;62(8):1590–1593.
7. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES — a six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5(4):302–311.
8. Dev R, Dalal S, Bruera E. Is there a role for parenteral nutrition or hydration at the end of life? Curr Opin Support Palliat Care. 2012;6(3):365–370.
9. National Health and Medical Research Council (NHMRC). End-of-Life Care Decision Making. Canberra: NHMRC; 2020.
10. Boland JW, Boland KG. Importance of dry mouth in advanced illness — assessment and management. Aust Prescr. 2020;43(6):200–203.
11. Rural and Remote Mental Health / RHDAustralia. Caring for Aboriginal and Torres Strait Islander Peoples at End of Life: A Resource for Health Workers. Darwin: RHDAustralia; 2021.
12. Morita T, Ikenaga M, Adachi I, et al. Concerns of family members of patients receiving palliative sedation therapy. J Pain Symptom Manage. 2004;27(5):435–443.
13. Pope TM. Legal briefing: voluntarily stopping eating and drinking. J Clin Ethics. 2014;25(1):61–73.
14. Raijmakers NJH, van Zuylen L, Costantini M, et al. Artificial nutrition and hydration in the last week of life in cancer patients: a systematic literature review. J Pain Symptom Manage. 2011;41(6):1088–1096.

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. 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. National Health and Medical Research Council (NHMRC). Evidence-based management of acute musculoskeletal pain. Canberra: NHMRC; 2003 (updated 2020).
3. Australian Institute of Health and Welfare (AIHW). Aboriginal and Torres Strait Islander Health Performance Framework: Summary report 2023. Canberra: AIHW; 2023.
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. 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. 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. Royal Australian College of General Practitioners (RACGP). Guidelines for preventive activities in general practice. 9th edn. Melbourne: RACGP; 2018 (updated 2023).
8. Hirsch JA, Singh V, Falco FJE, et al. Thoracic facet joint interventions. Pain Physician. 2016;19(4):E581–E593.
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. Strayer RJ, Gunnerson JM, Brown LH, et al. Aortic dissection: clinical features, diagnosis, and management. Aust Crit Care. 2019;32(2):144–153.
11. Ombregt L. A system of orthopaedic medicine. 3rd edn. Edinburgh: Churchill Livingstone Elsevier; 2013. Chapter 18: Thoracic spine.
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. Australian Institute of Health and Welfare (AIHW). Autoimmune disease in Australia. Cat. no. PHE 312. Canberra: AIHW; 2023.
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. 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. 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. 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. Australian Technical Advisory Group on Immunisation (ATAGI). Australian Immunisation Handbook. Australian Government Department of Health; 2024. Available from: immunisationhandbook.health.gov.au.
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. Pharmaceutical Benefits Scheme (PBS). PBS Schedule. Australian Government Department of Health. Available from: pbs.gov.au. Accessed 2024.
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. Pisetsky DS. Antinuclear antibody testing — misunderstood or misused? Clin Immunol. 2023;255:109717.
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. 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. 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

Medication adherence

Specific conditions

Referral pathways

📚 References

1. Australian Institute of Health and Welfare (AIHW). Autoimmune disease in Australia. Cat. no. PHE 312. Canberra: AIHW; 2023.
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. 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. 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. 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. Australian Technical Advisory Group on Immunisation (ATAGI). Australian Immunisation Handbook. Australian Government Department of Health; 2024. Available from: immunisationhandbook.health.gov.au.
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. Pharmaceutical Benefits Scheme (PBS). PBS Schedule. Australian Government Department of Health. Available from: pbs.gov.au. Accessed 2024.
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. Pisetsky DS. Antinuclear antibody testing — misunderstood or misused? Clin Immunol. 2023;255:109717.
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. 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. National Health and Medical Research Council (NHMRC). National statement on ethical conduct in human research. Canberra: NHMRC; 2023 (updated).