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Introducing Palliative Care Early

Last updated 1 Jun 2026 Β· Palliative care

πŸ“‹ Key Information Summary

πŸ“‹
  • Early palliative care runs alongside disease-directed treatment β€” it is not synonymous with end-of-life care and should not be delayed until all curative options are exhausted.
  • The Surprise Question ("Would I be surprised if this patient died in the next 12 months?") is a validated screening prompt that helps generalists identify patients who may benefit from a palliative approach.
  • A "No, I would not be surprised" answer should trigger a structured needs assessment and discussion about future care planning, not an automatic hospice referral.
  • Key triggers for specialist palliative care referral include: refractory symptoms, complex psychosocial distress, prognostic uncertainty, carer burden, and patient/family request.
  • Performance status tools (ECOG, Karnofsky, PPS) are objective markers of functional decline; an ECOG β‰₯2 or Karnofsky ≀50% should prompt palliative care needs assessment.
  • Australian data show early palliative care improves quality of life, reduces emergency presentations, and β€” in some cancers β€” may extend survival (Temel et al. 2010; NSW CCC 2020).
  • Advance care planning (ACP) conversations should begin when the Surprise Question is answered "No" or when a chronic life-limiting illness is diagnosed, ideally documented via an Advance Care Directive (ACD).
  • Patient and family acceptance varies widely; readiness is influenced by cultural background, health literacy, prior experiences, and the clinician's communication skill.
  • Use the SPIKES or Ask-Tell-Ask framework for breaking bad news and introducing palliative concepts; avoid jargon and frame palliation as "adding quality to quantity."
  • Medicare items support palliative care in primary care: GP Management Plans (721/723), Team Care Arrangements, and dedicated Specialist Palliative Care MBS items (e.g., 143, 145) for consultant physicians.
  • Aboriginal and Torres Strait Islander communities may have distinct understandings of end-of-life; yarning-based approaches, local ACCHOs, and culturally safe frameworks (e.g., Palliative Care Australia's National Palliative Care Standards) are essential.
  • Special populations (elderly with multimorbidity, patients with dementia, children, those with non-cancer diagnoses such as heart failure or COPD) often have unmet palliative needs identified late in their disease trajectory.
  • Referral pathways differ by jurisdiction: most states have a statewide palliative care advisory line; in regional and remote areas, telehealth and shared-care models with specialist services are critical.

Introduction & Australian Epidemiology

Palliative care is 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, impeccable assessment, and treatment of pain and other physical, psychosocial, and spiritual problems (WHO 2020). Despite this definition emphasising early introduction, palliative care in Australia is frequently initiated late β€” often in the final weeks of life β€” when crisis management supersedes proactive, holistic planning.

This topic addresses when and how to introduce a palliative approach before crisis points occur. Early needs-focused palliative care can run alongside disease-directed treatment (including chemotherapy, immunotherapy, and disease-modifying agents) and helps with symptom management, advance care planning, and patient and family psychosocial security. It is not a binary switch from "active treatment" to "comfort care."

Australian Epidemiology of Palliative Care Need

  • Approximately 160,000 Australians die each year (ABS 2023). The Australian Institute of Health and Welfare (AIHW) estimates that 70–80% of these deaths could benefit from palliative care, yet only 30–40% of those who die receive specialist palliative care services.
  • Non-cancer conditions account for the majority of deaths in Australia β€” heart failure, COPD, dementia, chronic kidney disease, liver disease, and neurological conditions β€” yet these populations are significantly under-referred to palliative care.
  • The National Palliative Care Strategy 2018 and the Palliative Care Australia National Palliative Care Standards (5th edition, 2018) both call for palliative care to be embedded early in disease trajectories and integrated into mainstream healthcare.
  • A landmark Australian study from the NSW Cancer Registry found that early palliative care referral (within 2 months of diagnosis) was associated with fewer emergency department presentations, fewer ICU admissions, and reduced chemotherapy in the last 30 days of life (NSW CCC 2020).
  • The Productivity Commission's 2022 report on end-of-life care highlighted significant geographic, socioeconomic, and cultural inequities in access to palliative care, particularly in regional, rural, and remote areas and for Aboriginal and Torres Strait Islander peoples.
⚠️
Late referral is the norm, not the exception. The median time from specialist palliative care referral to death in Australian hospitals is approximately 3 weeks. Early referral β€” when the patient is still relatively well β€” allows for relationship building, goal-setting, and proactive symptom management rather than crisis intervention.

The Surprise Question

The Surprise Question (SQ) is a validated clinical prompt originally described by Lynn et al. (2000) and widely adopted in Australian primary care and hospital settings. It asks a single question:

❓
"Would I be surprised if this patient died in the next 12 months?"
Answer: Yes (I would be surprised) β†’ Continue routine care with periodic reassessment.
Answer: No (I would NOT be surprised) β†’ Initiate palliative care needs assessment and advance care planning.

Evidence Base

  • A systematic review and meta-analysis (Downar et al. 2017, CMAJ Open) found the SQ has a pooled positive likelihood ratio of approximately 4.1 for predicting 12-month mortality, with a sensitivity of ~67% and specificity of ~80%.
  • The SQ is more accurate in cancer diagnoses (sensitivity ~80%) compared to non-cancer conditions such as heart failure, COPD, and dementia (~60–65%), where the disease trajectory is more unpredictable.
  • In Australian general practice, the SQ has been promoted by the RACGP as part of the red book and as a quality improvement tool for chronic disease management.
  • The SQ is not a prognostic tool in itself β€” it is a screening trigger that prompts the clinician to move from a disease-focused mindset to a needs-focused approach.

How to Use the Surprise Question in Practice

1
Identify the patient population
Apply the SQ to all patients with advanced, progressive, life-limiting conditions: metastatic cancer, advanced heart failure (NYHA III–IV), severe COPD (GOLD stage IV), advanced dementia (FAST 7), end-stage renal/liver disease, progressive neurological conditions (MND, advanced Parkinson's).
2
Ask the question honestly
Gut clinical impression has value. If the answer is "No, I would not be surprised," do not dismiss this as pessimism β€” act on it.
3
Reassess periodically
The SQ should be asked at each major disease milestone: at diagnosis of advanced disease, at each disease progression, at transition to new treatment lines, and with each hospitalisation for disease-related complications.
4
Act on a "No" answer
A "No" answer does NOT mean "send to hospice." It means: assess unmet needs, introduce advance care planning, consider referral to specialist palliative care, and address symptoms proactively.
πŸ’‘
Tip: For non-cancer conditions, supplement the SQ with disease-specific tools: the ESC HF guidelines' HF risk scores, the BODE index for COPD, or the ePrognosis calculator for elderly multimorbid patients.

Triggers for Specialist Palliative Care Referral

While the Surprise Question identifies patients who may benefit from a palliative approach, specific clinical and psychosocial triggers indicate when specialist palliative care referral (inpatient consultative, community, or outpatient) is appropriate. In Australia, palliative care referral does not require the cessation of disease-directed treatment.

Clinical Triggers

Trigger Category Examples Urgency
Symptom burden Refractory pain, dyspnoea, nausea, delirium, or fatigue not responding to standard management within 48–72 hours High β€” within 24–48 hours
Functional decline ECOG β‰₯2 or rapid decline in performance status (>1 ECOG grade in 4 weeks); new dependence in ADLs Moderate β€” within 1–2 weeks
Prognostic uncertainty Clinician uncertain about trajectory; patient/family asking "How long?"; disease progressing despite treatment Moderate β€” within 1–2 weeks
Repeated hospitalisations β‰₯2 unplanned admissions in 6 months for the same condition; frequent ED presentations Moderate β€” within 1–2 weeks
Complex medication management Polypharmacy with conflicting goals; opioid rotation needs; complex symptom clusters Routine β€” within 2–4 weeks
Decision-making conflict Futility concerns; family disagreement about treatment goals; CPR/DNAR discussions High β€” within 24–48 hours

Psychosocial and Carer Triggers

  • Patient expressing existential distress, loss of meaning, or desire for hastened death
  • Carer distress, burnout, or inability to cope (measured by Zarit Burden Interview score β‰₯61)
  • Complex family dynamics: estranged family, contested guardianship, child protection concerns
  • Social isolation, homelessness, or lack of community support β€” especially relevant in regional Australia
  • Patient or family request for palliative care referral β€” this alone is sufficient grounds for referral

Non-Cancer–Specific Triggers

Condition Specific Referral Triggers
Heart failure NYHA Class III–IV despite optimal therapy; recurrent admissions for fluid overload; inotrope dependence; consideration of LVAD or transplant ineligible
COPD FEV₁ <30% predicted; β‰₯3 exacerbations/year; long-term oxygen therapy; hypercapnic respiratory failure; MRC dyspnoea grade 5
Dementia FAST stage β‰₯6c; recurrent aspiration pneumonia; weight loss despite nutritional support; inability to walk or communicate meaningfully
CKD (not on dialysis) eGFR <15 with decision to not commence dialysis; uraemic symptoms; declining conservative pathway
MND/ALS At diagnosis β€” early referral is guideline-recommended (MND Australia); respiratory decline; bulbar dysfunction
🚨
Do not wait for a "palliative performance" to refer. Specialist palliative care in Australia is a consultative service; it does not replace the treating team. Referral early allows co-management. Waiting until the patient is actively dying defeats the purpose of early integration.

Australian Referral Pathways

  • State-based palliative care advisory lines are available in all jurisdictions (e.g., Palliative Care Victoria's Advisory Line, NSW HealthPathways palliative care, Queensland's Specialist Palliative Care Services).
  • In metropolitan areas: referral to hospital-based or community palliative care teams via outpatient clinics, inpatient consults, or community nurse services.
  • In regional and remote areas: use telehealth (MBS items 99200–99215 for telehealth GP consultations), shared care with local GP, and regional palliative care nurse specialists. Contact your Local Health District or Primary Health Network (PHN) for local pathways.
  • My Health Record can facilitate shared advance care documentation across settings.

Performance Status

Performance status (PS) is a measure of a patient's functional ability and is one of the most reliable objective indicators of prognosis. It is widely used in Australian oncology, palliative care, and increasingly in non-cancer chronic disease management to guide treatment decisions, clinical trial eligibility, and the need for palliative care integration.

Key Performance Status Scales

Scale Range Description Palliative Care Implication
ECOG (Zubrod) 0–4 0 = Fully active; 4 = Completely disabled ECOG β‰₯2 β†’ initiate palliative care discussion; ECOG 3–4 β†’ strong indication for palliative care focus
Karnofsky Performance Status (KPS) 0–100% 100% = Normal; 0% = Death KPS ≀50% β†’ palliative care needs assessment; KPS ≀30% β†’ consider full palliative/hospice focus
Palliative Performance Scale (PPS) 0–100% Incorporates ambulation, activity, self-care, intake, and consciousness PPS ≀50% β†’ median survival typically weeks to low months; PPS ≀20% β†’ days to weeks

ECOG Performance Status in Detail

ECOG 0–1
Fully Active / Restricted in Strenuous Activity
Patient is ambulatory and capable of all self-care; may have mild restrictions. Can usually continue disease-directed treatment including chemotherapy.
Setting: Routine review; palliative care for advance care planning and symptom support
ECOG 2
Ambulatory >50% of Waking Hours, Capable of Self-Care
Patient cannot carry out work activities but is up and about more than half the day. Active treatment decisions should be reviewed; palliative care should be integrated.
Setting: Active palliative care integration alongside disease treatment; advance care planning essential
ECOG 3–4
Limited Self-Care / Completely Disabled
ECOG 3: Capable of only limited self-care, confined to bed or chair >50% of waking hours. ECOG 4: Totally disabled, completely confined. Disease-directed treatment rarely beneficial; focus shifts to comfort.
Setting: Specialist palliative care; hospice consideration; comfort-focused care

Serial Assessment and Trajectory

  • Performance status should be assessed at every clinical encounter in patients with life-limiting illness, not just at oncology visits.
  • A decline of β‰₯1 ECOG grade within 4 weeks that is not attributable to a reversible cause (e.g., infection, medication side effect) is a poor prognostic sign and should prompt palliative care integration.
  • In heart failure and COPD, performance status may fluctuate ("sawtooth trajectory") β€” use the worst PS in the preceding 4 weeks to inform clinical decisions.
  • The Australia-modified Karnofsky Performance Status (AKPS) is used by some Australian palliative care services and has demonstrated good inter-rater reliability.
⚠️
Performance status alone should not determine treatment decisions. It must be considered alongside comorbidities, patient preferences, disease biology, and treatment intent. A fit 80-year-old (ECOG 0) may tolerate aggressive treatment; a deconditioned 50-year-old (ECOG 2) may benefit more from palliative-focused care.

Prognostic Correlation

PPS / Karnofsky Approximate Median Survival (Cancer) Approximate Median Survival (Non-Cancer)
PPS 70–100% Months to years Highly variable
PPS 50–60% 2–6 months 3–12 months
PPS 30–40% 2–6 weeks Weeks to months
PPS 10–20% Days to weeks Days to weeks

Patient & Family Acceptance

One of the most significant barriers to early palliative care is the reluctance of patients, families, and sometimes clinicians themselves to accept or introduce the concept. Understanding the psychological, cultural, and communication dimensions of acceptance is essential for effective early integration.

Barriers to Acceptance

Fear and misconception
Many patients equate palliative care with "giving up" or impending death. The word "palliative" itself carries stigma. Reframing as "supportive care" or "comfort-focused treatment alongside active treatment" can reduce resistance.
Clinician discomfort
Australians report that their doctors rarely initiate discussions about prognosis and end-of-life preferences. Many GPs and specialists feel inadequately trained in palliative care communication (RACGP, 2020).
Cultural and religious factors
Some cultural groups (including some CALD communities and Aboriginal and Torres Strait Islander peoples) may have taboos around discussing death. In some cultures, truth-telling about prognosis is considered harmful.
Hope preservation
Patients and families may fear that accepting palliative care means losing hope. Evidence shows that early palliative care does NOT reduce hope β€” it redirects hope toward achievable goals (quality of life, meaningful events, family time).
Prior negative experiences
Family members who witnessed a "bad death" (uncontrolled symptoms, ICU-focused care) may resist palliative involvement, paradoxically seeking more aggressive treatment to avoid that scenario.
Health literacy
Patients with limited health literacy may not understand what palliative care entails. Clear, jargon-free language and written materials at an appropriate reading level are essential.

Facilitating Acceptance: Communication Frameworks

The SPIKES Protocol

S
Setting
Ensure privacy, sit at eye level, minimise interruptions. Include the patient's support person if desired. In telehealth, confirm a private location at both ends.
P
Perception
Ask what the patient already understands: "Can you tell me what you understand about your condition so far?" This reveals knowledge gaps and prevents unnecessary information delivery.
I
Invitation
Ask how much information the patient wants: "Would you like me to talk about what to expect going forward, or would you prefer I focus on what we can do right now?"
K
Knowledge
Share information in small chunks. Use the "Ask-Tell-Ask" method: Ask what they know β†’ Tell one piece of information β†’ Ask if they understood. Avoid monologues.
E
Emotions
Acknowledge and validate emotional responses: "I can see this is really difficult to hear." Allow silence. Do not rush to solutions.
S
Strategy & Summary
Outline a plan collaboratively: "Based on what you've told me, here's what I'd suggest as next steps… Does that align with what matters most to you?"

Reframing Palliative Care

Instead of saying… Consider saying…
"There's nothing more we can do." "There's still a lot we can do to help you feel better and live as well as possible."
"We need to talk about palliative care." "I'd like to introduce you to a team that specialises in helping people manage symptoms and plan ahead, alongside the treatment you're already receiving."
"We should start thinking about end-of-life care." "Let's talk about what's most important to you, so we can make sure your care reflects your wishes."
"Your cancer has progressed." "The treatment is no longer controlling the disease the way we hoped. Let's talk about what this means for you and what we can do."

The Concept of "Total Care"

In Australia, the palliative care approach is built on the concept of "total care" β€” addressing physical, psychological, social, and spiritual domains simultaneously. When introducing early palliative care, frame it as an additional layer of support, not a replacement:

  • Physical: Symptom management (pain, breathlessness, fatigue, nausea) β€” palliative care teams have specialist expertise in refractory symptoms.
  • Psychological: Anxiety, depression, adjustment disorders, existential distress β€” referral to psychology/psychiatry within palliative care where available.
  • Social: Practical needs: carer support, financial counselling (Centrelink Carer Payment/Allowance), respite care, NDIS (for eligible patients under 65), My Aged Care (for patients β‰₯65).
  • Spiritual: Chaplaincy, pastoral care, and culturally specific spiritual support β€” available through most Australian hospital and hospice services.
πŸ’‘
Practical tip: For patients resistant to the word "palliative," use "supportive care," "symptom management team," or "comfort care team." The Australian and New Zealand Society of Palliative Medicine (ANZSPM) acknowledges that terminology flexibility can improve engagement without compromising care quality.

Advance Care Planning & Documentation

Advance care planning (ACP) is a process of discussion and documentation that enables patients to define their goals and preferences for future medical care. In Australia, ACP is a key outcome of early palliative care introduction and is supported by state-based legislation.

When to Start ACP Discussions

  • At diagnosis of a life-limiting condition (cancer, heart failure, MND, advanced dementia, etc.)
  • When the Surprise Question is answered "No"
  • Before major surgery or high-risk treatment in patients with significant comorbidities
  • At transition points: hospital discharge, move to residential aged care, commencement of dialysis
  • When the patient raises it β€” always honour patient-initiated discussions

Key ACP Documents in Australia

Document Description Legal Status
Advance Care Directive (ACD) Patient-authored document expressing values, goals, and treatment preferences for future care Legally binding in all Australian states/territories (varies by state legislation)
Substitute Decision-Maker (SDM) A legally appointed person to make health decisions when the patient lacks capacity Appointment mechanisms vary by state (e.g., Enduring Power of Attorney/Guardianship)
Goals of Care (GoC) Clinician-documented summary of agreed treatment goals, often completed with the patient/family Not a legal document but should be documented in the medical record and shared via My Health Record
Resuscitation Plan (e.g., ReSPECT, POLST-equivalent) Medical order specifying CPR status and other emergency treatment limits Increasingly adopted across Australian jurisdictions; check state-specific requirements

MBS Items for ACP in Australian Primary Care

  • MBS 721 β€” GP Management Plan: For patients with chronic conditions; can incorporate ACP goals. Item 723 for review.
  • MBS 732 β€” Multidisciplinary Care Plan: Team Care Arrangements involving palliative care nurses, allied health, and specialists.
  • MBS 99200–99215 β€” Telehealth GP items: For ACP discussions conducted remotely, important for regional and remote patients.
  • Palliative care specialist MBS items: 143, 145, 147 (consultant physician attendances for patients with terminal conditions).

Special Populations

πŸ‘΄ Elderly Patients with Multimorbidity
Challenge: The "surprise question" is less specific in the elderly; most people aged >85 would have some mortality risk within 12 months. Use disease-specific prognostication and focus on goals of care rather than arbitrary time-based criteria.
Approach: Introduce ACP at My Aged Care assessment (ACAT) or when community care packages (CHSP, HCP) are initiated. Palliative care in residential aged care is an expanding area β€” the Australian Government funds palliative care training for RACFs.
Medications: Deprescribing is a key palliative intervention. Use STOPP/START criteria. Opioid initiation at lower doses (e.g., morphine 2.5 mg PO BD) with slower titration. Monitor for delirium.
πŸ§’ Paediatric Patients
Context: Paediatric palliative care in Australia serves children with life-limiting conditions (e.g., genetic/metabolic conditions, neurological disorders, cancer). Approximately 1,500 children die annually in Australia with palliative care needs.
Approach: Early referral to paediatric palliative care teams (e.g., Bear Cottage in NSW, Very Special Kids in VIC). Family-centred care is paramount. Sibling support programs are an important component.
Communication: Age-appropriate discussions with children; parents as primary decision-makers. Use tools like "Wishes" cards or "My Choices" booklets.
🫘 Chronic Kidney Disease / Dialysis Patients
Challenge: Patients choosing conservative (non-dialysis) management have clear palliative care needs. Even those on dialysis may have significant symptom burdens (fatigue, pruritus, pain, depression) often under-recognised by nephrology teams.
Approach: For patients with eGFR <20, initiate shared decision-making about dialysis vs. conservative care. If conservative pathway chosen, involve palliative care early. The "Supportive Care for Kidney Failure" model (Kidney Health Australia) is endorsed nationally.
🫁 Heart Failure and Respiratory Disease
Challenge: Non-cancer palliative care referrals remain significantly lower than cancer referrals, despite comparable or greater symptom burdens. The "sawtooth" trajectory of heart failure and COPD (repeated exacerbations with partial recovery) makes prognostication difficult.
Approach: Introduce palliative care at diagnosis of advanced disease (NYHA III–IV, GOLD stage IV). Use disease-specific tools alongside the Surprise Question. Emphasise that palliative care does NOT mean stopping heart failure medications or inhalers.
🧠 Patients with Dementia
Challenge: People with dementia have among the lowest rates of palliative care referral and the highest rates of aggressive end-of-life interventions (hospital transfers, antibiotics for aspiration, artificial nutrition). ACP should occur early β€” at diagnosis β€” while the patient can still participate.
Approach: Use the FAST staging system to guide care goals. At FAST 6c (needs assistance with toileting) or later, introduce comfort-focused care discussions. Agreed care plans should address hospital transfer, artificial nutrition, and antibiotic use for aspiration pneumonia. The Dementia Support Australia (DSA) service can assist with symptom management.
🀰 Pregnancy and Life-Limiting Illness
Context: Pregnant women diagnosed with life-limiting conditions (advanced cancer, severe cardiac disease) require specialist multidisciplinary input including maternal-fetal medicine, oncology, and palliative care.
Approach: Early palliative care involvement helps navigate complex decisions about treatment timing, fetal viability, and delivery planning. Perinatal palliative care is also relevant for expected neonatal deaths or lethal fetal diagnoses. State-based perinatal palliative care pathways exist (e.g., Mater Mothers' Hospital, Brisbane).

Aboriginal and Torres Strait Islander Health Considerations

Aboriginal and Torres Strait Islander Health

Aboriginal and Torres Strait Islander peoples experience significant disparities in access to palliative care and have distinct cultural approaches to dying, death, and bereavement that must inform all aspects of early palliative care introduction. The palliative care workforce and services must be culturally safe and responsive to the needs of First Nations peoples.

Key Disparities

  • Aboriginal and Torres Strait Islander peoples have a life expectancy approximately 8 years lower than non-Indigenous Australians and carry a higher burden of chronic disease (cardiovascular disease, diabetes, renal disease, cancer).
  • They are less likely to receive specialist palliative care β€” AIHW data show that only 15% of Aboriginal and Torres Strait Islander people who die access specialist palliative care services compared to 30% of non-Indigenous Australians.
  • Later diagnosis and later referral contribute to worse outcomes; many Aboriginal and Torres Strait Islander people are first diagnosed with advanced disease due to barriers in the healthcare system.
  • Death in community preference: A strong cultural preference exists for dying "on country" (in one's traditional lands) and being cared for by family and community, rather than in institutional settings.

Cultural Considerations for Early Palliative Care

Language and naming
The word "palliative" may not translate or may carry negative connotations. Use plain language and ask the patient/community what terms they prefer. Some communities have specific language for end-of-life care. Interpreter services (including for Aboriginal languages) should be used where needed β€” the TIS National service (131 450) covers some Aboriginal languages.
Sorry Business and cultural protocols
"Sorry Business" refers to mourning and death-related cultural obligations. When a community member is dying, Sorry Business may take precedence over medical appointments. Clinicians must be flexible and respectful. Naming restrictions (avoiding the name or image of the recently deceased) must be observed.
Role of Aboriginal Community Controlled Health Organisations (ACCHOs)
ACCHOs (e.g., VACCHO in Victoria, AMSANT in the NT, QAIHC in Queensland) are the preferred healthcare provider for many Aboriginal and Torres Strait Islander peoples. Palliative care should be delivered in partnership with ACCHOs, not imposed from external services. Many ACCHOs are developing their own palliative care models of care.
Yarning as a communication framework
"Yarning" is a culturally embedded communication style involving storytelling, listening, and shared conversation. For ACP and palliative care discussions, a yarning-based approach (e.g., Dadirri β€” deep listening, as described by Miriam-Rose Ungunmerr-Baumann) may be more culturally appropriate than formal structured tools like SPIKES.
Family and community decision-making
In many Aboriginal and Torres Strait Islander communities, healthcare decisions are made collectively β€” not by an individual patient alone. Elders, family groups, and community leaders may need to be involved in palliative care discussions. Western models of individual autonomy may not align with community-based decision-making.
Remote and very remote access
Many Aboriginal and Torres Strait Islander people live in remote or very remote communities where specialist palliative care services are limited or absent. Telehealth (MBS telehealth items for GP and specialist consultations), visiting specialist services (e.g., Remote Area Health Corps), and trained community health workers are essential. The Australian Government funds Indigenous-specific palliative care programs through PHNs.

National Resources and Frameworks

  • Palliative Care Australia β€” National Palliative Care Standards (5th edition, 2018): Standard 3 explicitly addresses cultural safety for Aboriginal and Torres Strait Islander peoples.
  • RACGP β€” National Guide to Preventive Health Assessment for Aboriginal and Torres Strait Islander People (3rd edition): Includes chronic disease management and anticipatory care planning guidance.
  • AIHW β€” Palliative care services in Australia (2023): Provides the most current data on disparities in palliative care access for First Nations peoples.
  • RHDAustralia β€” Caring for Aboriginal and Torres Strait Islander peoples at end of life: Practical clinical resources for remote clinicians.
  • Caring@Home project: Provides resources for carers to manage breakthrough symptoms at home β€” particularly relevant for patients choosing to die on country.
⚠️
Cultural safety is not optional. Non-Indigenous clinicians must engage in ongoing cultural safety training and work in genuine partnership with Aboriginal and Torres Strait Islander health workers, liaison officers, and ACCHOs. The burden of cultural education should not fall on patients or their families during a time of crisis.

πŸ“š References

  1. 1. 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.
  2. 2. Downar J, Goldman R, Pinto R, Englesakis M, Adhikari NK. The "surprise question" for predicting death in seriously ill patients: a systematic review and meta-analysis. CMAJ Open. 2017;5(1):E246–E253.
  3. 3. Palliative Care Australia. National Palliative Care Standards. 5th ed. Canberra: Palliative Care Australia; 2018.
  4. 4. Australian Government Department of Health. National Palliative Care Strategy 2018. Canberra: Commonwealth of Australia; 2018.
  5. 5. Australian Institute of Health and Welfare. Palliative care services in Australia. AIHW, Canberra; 2023.
  6. 6. Lynn J, Adamson DM. Living well at the end of life: Adapting health care to serious chronic illness in old age. RAND Corporation; 2003.
  7. 7. Royal Australian College of General Practitioners. Smarter Practice, Better Health: RACGP Standards for General Practices. 5th ed. Melbourne: RACGP; 2020.
  8. 8. NSW Cancer Council. Patterns of care and outcomes for people with cancer who die in hospital or at home: a population-based data linkage study. Intern Med J. 2020;50(10):1192–1201.
  9. 9. Australian and New Zealand Society of Palliative Medicine (ANZSPM). Standards for Specialist Palliative Care. Sydney: ANZSPM; 2020.
  10. 10. Kidney Health Australia. Chronic Kidney Disease Management in Primary Care. 4th ed. Melbourne: Kidney Health Australia; 2020.
  11. 11. Productivity Commission. End-of-life care in Australia: Productivity Commission Inquiry Report. Report No. 99. Canberra: Productivity Commission; 2022.
  12. 12. Buck K, Detering KM, Sellars M, et al. Prevalence of advance care planning documentation in Australian health and residential aged care services. BMJ Support Palliat Care. 2021;11(3):316–323.
  13. 13. Shahid S, Finn L, Bessarab D, Thompson SC. Understanding, beliefs and perspectives of Aboriginal people in Western Australia about cancer and its impact on access to cancer services. BMC Health Serv Res. 2009;9:132.
  14. 14. CareSearch. Palliative Care Evidence: Evidence Synthesis and Reviews. Adelaide: Flinders University; 2023. Available from: caresearch.com.au.
  15. 15. Abernethy AP, Currow DC, Shelby-James T, et al. Delivery strategies to optimize resource utilization and sustainability of palliative care services: a rapid review. J Pain Symptom Manage. 2013;45(6):1059–1069.
  16. 16. Ungunmerr-Baumann MR. Dadirri: Deep listening. In: Atkinson J, ed. Aboriginal spirituality: Past, present, future. Melbourne: Aboriginal Studies Press; 2005.
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 Β± NSAID; manual therapy
2–6 weeks
Provocable on palpation; no red flags
Thoracic compression fracture
Paracetamol; Β± 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 Β± morphine; lap cholecystectomy
Surgical within 72 h (cholecystitis)
RUQ/infrascapular; post-prandial; RUQ US

πŸ“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):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.

πŸ“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):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, LandewΓ© 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 β€” 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 TNFΞ± 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.

πŸ“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):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, LandewΓ© 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 β€” 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 TNFΞ± 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).