Med2Date β€” Clinical Guidelines
Home Palliative Care Ethical Challenges in Palliative Care

Ethical Challenges in Palliative Care

Last updated 1 Jun 2026 Β· Palliative care

πŸ“‹ Key Information Summary

πŸ“‹
  • Palliative care ethics requires balancing autonomy, beneficence, non-maleficence, justice, and veracity in the context of life-limiting illness and end-of-life care.
  • Australian law recognises a competent adult's right to refuse treatment, even if refusal may lead to death; advance care directives (ACDs) are legally binding in all states and territories.
  • Non-beneficial treatment β€” including futile CPR or continued disease-modifying therapy β€” is a common source of ethical conflict between clinicians, patients, and families.
  • Capacity assessment must be decision-specific, time-specific, and documented; fluctuating capacity (e.g., delirium) requires repeated evaluation.
  • Family conflict is the most frequent ethical challenge in Australian palliative care; early multidisciplinary meetings and clear communication reduce escalation.
  • The principle of double effect β€” where symptom relief (e.g., escalating opioids for dyspnoea) may inadvertently hasten death β€” is ethically and legally accepted in Australia when intent is symptom control.
  • Confidentiality obligations persist after death; disclosure to family requires either prior patient consent or a lawful exception (e.g., coronial investigation).
  • Every Australian public hospital should have access to a clinical ethics consultation service or a state-based ethics advisory framework for complex cases.
  • Palliative sedation for refractory symptoms is ethically permissible under clearly defined criteria and must not be confused with euthanasia or physician-assisted dying.
  • Aboriginal and Torres Strait Islander patients face unique ethical challenges including Sorry Business obligations, kinship decision-making models, and distrust of institutional care rooted in historical trauma.
  • Paediatric palliative care ethics requires recognition of evolving capacity in minors, parental authority limits, and the child's right to be heard under the UNCRC.
  • Voluntary assisted dying (VAD) legislation now exists in all Australian states; clinicians must understand conscientious objection provisions and referral obligations.

Introduction & Australian Context

Palliative care is a multidisciplinary approach that aims to improve quality of life for patients with life-limiting illnesses and their families. In Australia, palliative care is delivered across hospitals, hospices, residential aged care facilities, and community settings. Approximately 160,000 Australians die each year, and an estimated 80,000–100,000 could benefit from specialist palliative care at some point during their illness trajectory.

Ethical challenges pervade every stage of palliative care β€” from prognostic disclosure and treatment decisions to symptom management at the end of life. These decisions often require balancing patient preferences, clinical judgement, the law, and the concerns of family members and substitute decision-makers. Australian clinicians operate within a patchwork of state and territory legislation governing advance care planning, guardianship, consent, and β€” more recently β€” voluntary assisted dying.

The Australian Commission on Safety and Quality in Health Care (ACSQHC) has published the National Consensus Statement: Essential Elements for Safe and High-Quality End-of-Life Care, which outlines principles for open communication, shared decision-making, and ethical clinical practice. The Palliative Care Australia National Palliative Care Standards (4th edition, 2018) further embed ethical practice as a core domain of care delivery.

This article addresses the principal ethical challenges encountered in Australian palliative care practice, with emphasis on practical frameworks for resolution.

⚠️
Legal caution: This article provides general ethical and clinical guidance. Laws governing end-of-life care, guardianship, advance directives, and voluntary assisted dying vary between Australian states and territories. Always consult your institution's legal team or clinical ethics service for case-specific advice.

Ethical Principles in Palliative Care

Palliative care ethics draws on the four cardinal bioethical principles β€” autonomy, beneficence, non-maleficence, and justice β€” supplemented by additional principles of veracity (truth-telling), dignity, and proportionality. These principles are not hierarchical; they frequently conflict with one another, requiring careful contextual analysis.

Core Ethical Principles

Principle Definition Palliative Care Application
Autonomy Respect for the patient's right to make informed decisions about their own care Honouring ACDs, respecting treatment refusals, supporting culturally appropriate decision-making models
Beneficence Duty to act in the patient's best interest Providing effective symptom relief, advocating for comfort-focused care when appropriate
Non-maleficence Duty to avoid causing harm Avoiding burdensome interventions with no realistic benefit; preventing prolonged dying
Justice Fair distribution of resources and equitable treatment Ensuring access to palliative care for rural, Indigenous, CALD, and socioeconomically disadvantaged populations
Veracity Duty to be truthful Honest prognostic disclosure; avoiding collusion with families who request information be withheld
Dignity Preserving the patient's sense of worth and self-respect Maintaining privacy, respecting cultural death practices, person-centred care planning

The Principle of Double Effect

The doctrine of double effect is a foundational ethical concept in palliative care. It holds that an action with both a good effect (symptom relief) and a bad effect (potential hastening of death) is ethically permissible provided that:

  1. The action itself is not intrinsically wrong (e.g., administering opioids for dyspnoea).
  2. The good effect is intended, and the bad effect is foreseen but not intended.
  3. The bad effect is not the means to the good effect.
  4. There is proportionate reason (the symptom is severe and refractory).
βœ…
Australian legal standing: In R v. Wookey and subsequent case law, Australian courts have recognised that clinicians may titrate opioids and sedatives to achieve adequate symptom control, even if there is a foreseeable risk of respiratory depression and death, provided clinical intent is symptom management. This aligns with guidance from the Australian and New Zealand Society of Palliative Medicine (ANZSPM).

Capacity Assessment

A patient's capacity to consent to or refuse treatment is a prerequisite for respecting autonomy. In palliative care, capacity may be compromised by delirium, pain, medication effects, fatigue, or disease progression. Key principles include:

  • Capacity is decision-specific (a patient may consent to analgesia but lack capacity to refuse a blood transfusion) and time-specific (capacity may fluctuate).
  • The assessment must evaluate four domains: (1) ability to understand information, (2) ability to appreciate its relevance, (3) ability to reason with that information, and (4) ability to communicate a choice.
  • The treating clinician makes the capacity assessment; specialist psychiatry or neuropsychology input is sought when capacity is contested or unclear.
  • Presumption of capacity β€” all adults are presumed to have capacity unless demonstrated otherwise.
  • Supported decision-making should be attempted before resorting to substitute decision-making.

Advance Care Planning and Advance Care Directives

Advance care planning (ACP) is the process of discussing and documenting future health care preferences. In Australia, ACP is promoted by the ACSQHC National Framework for Advance Care Directives (2011). Key points:

  • ACDs are legally binding in all Australian jurisdictions, though legislation varies by state and territory (e.g., Medical Treatment Planning and Decisions Act 2016 (Vic), Powers of Attorney Act 1998 (Qld)).
  • Common ACD refusals in palliative care include: cardiopulmonary resuscitation (Not-for-Resuscitation / NFR order), artificial nutrition and hydration, ICU admission, and mechanical ventilation.
  • Clinicians should proactively initiate ACP discussions at appropriate disease milestones (e.g., at diagnosis of advanced cancer, after a second hospitalisation for heart failure exacerbation, upon entry to residential aged care).

Non-Beneficial and Potentially Futile Treatment

Requests for treatment that clinicians judge to be non-beneficial or futile represent one of the most ethically distressing scenarios in palliative care. Australian guidance includes:

  • The term "futile" should be avoided in patient/family communication; instead, use "not expected to achieve the goals of care" or "not in the patient's best interest."
  • The ANZICS Statement on Care and Decision-Making at the End of Life (2020) supports a structured process for managing requests for treatment deemed non-beneficial, including medical review, ethics consultation, and β€” as a last resort β€” institutional review.
  • CPR in a patient with advanced irreversible illness and no realistic prospect of meaningful survival is generally considered non-beneficial; a Not-for-Resuscitation order can be issued by the treating team without requiring patient/family consent (though discussion is ethically expected).
🚨
Safety-critical: Clinicians are not obliged to provide treatment they judge to be harmful or non-beneficial. However, withdrawing or withholding treatment must follow a transparent process including clinical review, documentation, and β€” ideally β€” ethics consultation. Unilateral decisions should be a last resort after all avenues of communication have been exhausted.

Conflict Resolution

Ethical conflict in palliative care most commonly arises between the treating team and the patient, between the treating team and family members, or among family members themselves. Sources of conflict include disagreements about treatment goals, prognostic understanding, cultural and religious expectations, and the timing or location of death.

Common Sources of Conflict

Source Examples Typical Stakeholders
Treatment goals Family requests continued chemotherapy; clinician recommends comfort care Oncologist, patient, family
CPR and resuscitation Family insists on full resuscitation despite terminal prognosis ICU/palliative care team, family
Artificial nutrition/hydration Family perceives withdrawal of fluids as "starving" the patient Palliative care team, family
Prognostic disclosure Family requests information be withheld from patient Treating team, patient, family
Pain management Family fears opioids will "kill" the patient; clinician undertreats pain Palliative care team, family, GP
Location of death Patient wishes to die at home; family unable to provide care Community palliative care, family, GP
Substitute decision-maker disputes Multiple family members claim decision-making authority Legal guardians, family, ethics team
Voluntary assisted dying Patient requests VAD; family or clinician objects on moral/religious grounds Patient, family, palliative care physician

Structured Conflict Resolution Approach

1
Recognise the Conflict Early
Identify divergent expectations between clinicians, patients, and families. Document disagreements. Escalate to the multidisciplinary team (MDT) lead or palliative care consultant promptly.
2
Facilitate a Family Meeting
Convene a structured multidisciplinary family meeting (MDT physician, nurse, social worker, chaplain/spiritual care if requested). Use a private setting. Allow adequate time. Employ active listening and empathy skills.
3
Clarify Understanding
Elicit each party's understanding of the diagnosis, prognosis, and treatment options using the "ask-tell-ask" technique. Correct misconceptions gently. Use plain language and avoid jargon.
4
Identify Shared Goals
Explore what matters most to the patient (comfort, time at home, dignity, spiritual peace). Reframe discussions around shared goals rather than specific interventions.
5
Offer a Recommendation
The treating team provides a clear clinical recommendation, explaining the reasoning. Involve the patient (if capacitated) in the decision. Document the recommendation and the response.
6
Escalate if Unresolved
If conflict persists: request a second medical opinion, refer to the institutional clinical ethics committee or ethics consultation service, contact the Office of the Public Advocate/Guardian, or β€” in extreme cases β€” seek legal advice.

Communication Skills for Ethical Discussions

Effective communication is the primary tool for preventing and resolving ethical conflict. Evidence-based frameworks include:

  • SPIKES protocol (Setting, Perception, Invitation, Knowledge, Emotions, Summary/Strategy) β€” for breaking bad news and prognostic disclosure.
  • REMAP framework (Reframe, Expect emotion, Map goals, Align with goals, Propose plan) β€” for goals-of-care conversations in serious illness.
  • NURSE statements (Name, Understand, Respect, Support, Explore) β€” for responding to emotional distress during ethical discussions.
  • Teach-back β€” confirming understanding by asking the patient/family to repeat information in their own words.
ℹ️
Australian resource: The Centre for Palliative Care (Melbourne) and Palliative Care Australia offer communication skills workshops for clinicians, including the "Difficult Conversations" program. The End-of-Life Law for Clinicians (ELLC) project at QUT provides free legal guidance for Australian health professionals.

When Families Request Non-Disclosure

In some cultural contexts β€” particularly among some Aboriginal and Torres Strait Islander communities, some Asian and Middle Eastern cultural groups, and some Mediterranean communities β€” family members may request that the patient not be told their diagnosis or prognosis. Australian ethical and legal practice holds that:

  • The patient's right to information about their own health is paramount (autonomy and veracity).
  • Clinicians should gently explore the family's concerns and negotiate a culturally sensitive approach to disclosure, rather than simply refusing the request.
  • It is ethically and legally inappropriate to permanently withhold information at the family's request if the patient is asking questions or has capacity.
  • A graduated, patient-led approach β€” allowing the patient to control the pace of information β€” may reconcile cultural sensitivity with ethical obligations.

Confidentiality

Confidentiality is a cornerstone of the therapeutic relationship and is protected by Australian common law, the Privacy Act 1988 (Cth), state and territory health records legislation, and professional codes of conduct (AHPRA, Medical Board of Australia). In palliative care, confidentiality presents unique challenges due to family involvement, carer burden, and the patient's declining capacity.

Key Principles

  • Consent to share: Patients should be asked explicitly about what information may be shared, with whom, and in what circumstances. This should be documented (ideally in the ACP or care plan).
  • Implied consent: In the context of a family closely involved in care, some degree of information-sharing may be implied (e.g., discussing medication schedules with a primary carer). However, clinical details, prognosis, and diagnosis require explicit consent.
  • Mandatory reporting: Confidentiality may be overridden by mandatory reporting obligations (e.g., notifiable diseases, suspected child abuse, elder abuse, reporting to the Coroner).
  • After death: The duty of confidentiality continues after the patient's death. Disclosure of medical information to family members post-mortem requires either prior patient consent or a lawful exception (e.g., coronial investigation, public health).

Common Confidentiality Scenarios in Palliative Care

Scenario Ethical/Legal Approach
Family asks about diagnosis/prognosis without patient's knowledge Discuss with patient first. If patient consents to family being informed, proceed. If not, explain to the family that confidentiality must be respected, while offering general support and acknowledging their distress.
Patient has lost capacity and no ACD exists Information may be shared with the legally appointed substitute decision-maker (SDM) or next of kin as necessary for care decisions. Share only what is relevant to decision-making.
Family disputes and multiple relatives requesting information Identify the patient's nominated contact person or SDM. Limit information-sharing to this person. Document the decision. Referring to guardianship legislation if SDM is contested.
Coroner investigation after death Disclosure to the Coroner is a lawful exception to confidentiality. Under each state's Coroners Act, medical records and clinical information may be provided to assist the investigation.
Clinician handover (e.g., transition from hospital to community palliative care) Information sharing for continuity of care is generally considered part of the implied consent for treatment. Minimise to relevant clinical information. Confirm with patient where possible.
Patient discloses harm to others (e.g., driving against medical advice) Duty to warn may apply in specific circumstances (e.g., Watt v. Rama principles). Seek legal advice. Document the discussion and your assessment of risk.
⚠️
Practical tip: At the first palliative care consultation, ask the patient: "Is there anyone you would like me to share your medical information with? Are there things you would prefer to keep private?" Document the response in the clinical record. This simple step prevents the majority of confidentiality disputes.

Digital Confidentiality Considerations

With the increasing use of My Health Record, telehealth, and electronic clinical messaging (e.g., secure messaging between GPs and specialists), additional confidentiality considerations arise:

  • My Health Record allows patients to set access controls; clinicians should respect restricted documents.
  • Telehealth consultations for palliative care require the same privacy standards as in-person consultations; ensure the patient is in a private setting and not overheard by unintended parties.
  • Electronic clinical handover summaries should include only information necessary for the receiving clinician's role.

Clinical Ethics Support

Clinical ethics support services provide structured assistance to clinicians, patients, and families facing complex ethical decisions. In Australia, clinical ethics infrastructure varies between jurisdictions and institutions, but the expectation is that all health services have some mechanism for ethics consultation.

Models of Clinical Ethics Support

Model Description Availability in Australia
Clinical ethics consultation Individual case consultation by a trained ethicist or ethics-trained clinician. May involve a structured meeting with all stakeholders. Available in most major tertiary hospitals. May be ad hoc in regional/rural settings.
Clinical ethics committee (CEC) A standing multidisciplinary committee (clinicians, ethicists, lawyers, consumer representatives) that provides case consultation and policy advice. Common in large metropolitan hospitals. Some health services share committees across multiple sites.
Ethics advisory telephone service Telephone-based ethics advice, often state-funded, for clinicians needing urgent or after-hours guidance. Available in some states (e.g., NSW Health Clinical Ethics Advisory Service, Victorian Office of the Public Advocate).
Moral distress debriefing Structured reflective sessions for clinical teams experiencing moral distress following ethically challenging cases. Increasingly offered through wellbeing programs in larger health services.

When to Refer for Ethics Consultation

Clinicians should consider requesting ethics consultation when:

  • There is genuine ethical uncertainty β€” reasonable people could disagree about the right course of action.
  • There is conflict between the clinical team and the patient/family that has not been resolved through standard communication.
  • There is conflict within the clinical team about treatment decisions.
  • There is a request for treatment the team considers non-beneficial or harmful.
  • Capacity is disputed and the stakes of the decision are high.
  • There is a question about the applicability or interpretation of an advance care directive.
  • Issues of justice arise β€” resource allocation, inequitable access to care.
  • The team experiences moral distress that affects clinical care or staff wellbeing.

The Ethics Consultation Process

A typical clinical ethics consultation follows a structured approach:

  1. Referral and intake: Clinician or team contacts the ethics service with a description of the ethical question. The urgency is triaged.
  2. Fact-finding: The ethics consultant reviews the medical record, speaks with the treating team, and may interview the patient (if appropriate) and family.
  3. Ethical analysis: The consultant identifies the relevant ethical principles, legal frameworks, and institutional policies. They may use structured ethical frameworks (e.g., the four-principles approach, Jonsen's four-box method, or Beauchamp and Childress).
  4. Facilitated meeting: A structured meeting is convened with relevant stakeholders. The ethics consultant facilitates discussion, not imposes a decision.
  5. Recommendation: The ethics consultant provides a written recommendation (non-binding) that the treating team may accept, modify, or reject.
  6. Follow-up: The ethics service follows up to assess the outcome and provide further support if needed.
ℹ️
Key principle: Ethics consultation is advisory, not directive. The treating clinician and the patient (or their SDM) remain the decision-makers. The ethics consultant's role is to clarify values, identify options, and facilitate resolution β€” not to override clinical or patient autonomy.

Moral Distress in Palliative Care Clinicians

Moral distress β€” the psychological distress that arises when a clinician knows the ethically right action but is constrained from taking it β€” is prevalent in palliative care. Contributing factors include:

  • Providing treatment perceived as futile or harmful at the request of families or due to institutional pressure.
  • Inadequate pain management due to fears of hastening death or regulatory scrutiny.
  • Caring for patients whose suffering could be alleviated by voluntary assisted dying legislation, but who do not meet eligibility criteria or whose clinician has a conscientious objection.
  • Organisational barriers (e.g., insufficient staffing, lack of specialist palliative care support in rural areas).

Institutional responses should include ethics debriefing, Schwartz Center Rounds, peer support programs, and access to employee assistance programs (EAPs). Individual clinicians are encouraged to seek reflective practice opportunities and professional supervision.

Special Populations

πŸ‘Ά

Paediatric Palliative Care

Evolving capacity Children and adolescents have evolving decision-making capacity. The UNCRC (Article 12) and Australian family law recognise the right of children to be heard in accordance with their age and maturity. Gillick/Fraser competence principles apply.
Parental authority Parents generally make decisions for their child, but their authority is not absolute. If parental decisions are contrary to the child's best interest (e.g., refusing effective palliative sedation), clinicians may seek court authorisation or involvement from child protection services.
Ethical complexity Paediatric palliative care involves uniquely high-stakes ethical decisions including withdrawal of life-sustaining treatment in neonates, transition from curative to palliative intent in childhood cancer, and perinatal palliative care for life-limiting congenital conditions.
Siblings and family Ethical obligations extend to supporting siblings and the broader family unit. Bereavement support for siblings is an ethical imperative, not a convenience.
🀰

Pregnancy and Perinatal Palliative Care

Dual patient consideration When a pregnant woman has a life-limiting illness, ethical decisions must consider both the maternal and fetal interests. Maternal autonomy remains paramount β€” the pregnant woman cannot be compelled to undergo treatment for the benefit of the fetus.
Perinatal palliative care When a fetus is diagnosed with a life-limiting condition, parents should be offered the option of perinatal palliative care β€” a plan that supports comfort care, bonding, memory-making, and spiritual support from the time of birth.
Pain management in pregnancy Opioid use in pregnancy requires careful consideration of neonatal abstinence syndrome. Methadone or buprenorphine may be preferred for chronic pain management. Multidisciplinary input from obstetric and palliative care teams is essential.
πŸ‘΄

Elderly Patients and Residential Aged Care

Capacity and dementia Dementia is a leading cause of death in Australia and raises complex ethical issues around capacity, consent, and the use of restraint. The National Framework for the Use of Restrictive Practices with Older People guides practice. ACDs should be completed early in the disease trajectory.
Goals-of-care conversations Goals-of-care conversations are frequently delayed or not conducted in residential aged care. The ACSQHC encourages all RACF residents to have an individualised goals-of-care plan reviewed at minimum annually and after significant health events.
Polypharmacy and deprescribing Ethical deprescribing β€” ceasing medications unlikely to provide benefit in the palliative phase β€” requires clinician initiative and sensitive communication with patients and families. The Australian Deprescribing Network provides guidance.
🫘

Patients with Renal Disease

Dialysis withdrawal Withdrawal of dialysis is one of the most common causes of death in patients with end-stage kidney disease. It is ethically permissible when continued dialysis is no longer consistent with the patient's goals or quality of life. ANZSN guidelines support structured communication and symptom management during the dying phase.
Conservative kidney management For elderly patients with significant comorbidities, conservative kidney management (without dialysis) is an ethical and increasingly recommended option. It should be discussed as a genuine alternative to dialysis, not presented as "doing nothing."
πŸ›‘οΈ

Immunocompromised Patients

Transplant patients Patients with organ transplants who develop graft failure or post-transplant malignancy face unique ethical challenges around re-transplantation vs. palliative care, immunosuppression withdrawal, and donor organ stewardship.
HIV/AIDS Although HIV is now a chronic manageable condition in Australia, patients with advanced AIDS or treatment-resistant disease may require palliative care. Confidentiality is especially important due to persistent stigma.
🫁

Culturally and Linguistically Diverse (CALD) Populations

Cultural dimensions CALD patients may hold different views on autonomy (family-centred vs. individual autonomy), truth-telling, pain expression, and the role of faith in dying. Clinicians should use professional interpreters (not family members) and explore cultural values with curiosity and respect.
Interpreter use The use of professional interpreters is an ethical and legal obligation when language barriers exist. The National Accreditation Authority for Translators and Interpreters (NAATI) maintains a register of accredited health interpreters. Federally funded interpreting is available through TIS National (131 450).

Voluntary Assisted Dying β€” Australian Context

Voluntary assisted dying (VAD) is now legal in all Australian states under respective legislation (Victoria: Voluntary Assisted Dying Act 2017; Western Australia: 2019; Tasmania: 2021; South Australia: 2021; Queensland: 2021; New South Wales: 2022). The Northern Territory and the Australian Capital Territory do not yet have VAD legislation as of 2024, though legislative processes are underway.

Key ethical considerations for palliative care clinicians include:

  • Conscientious objection: All VAD legislation includes provisions for clinicians to conscientiously object to participating in VAD. However, objecting clinicians are generally required to inform the patient of their objection and β€” in most jurisdictions β€” to refer the patient to a willing provider or the relevant state VAD care navigator service.
  • Palliative care and VAD are not mutually exclusive: Patients accessing VAD remain eligible for and should receive best-practice palliative care. VAD eligibility criteria typically include the requirement that the patient has been offered palliative care.
  • Distinction from palliative sedation: VAD (where the patient self-administers or is administered a lethal medication with the explicit intent of causing death) is ethically and legally distinct from palliative sedation (where sedation is administered for refractory symptoms with no intent to hasten death, though death may be foreseen).
  • Clinical governance: Health services should have clear policies governing VAD, including staff training, medication management, and reporting obligations to the relevant state health department.
⚠️
Important: VAD legislation eligibility criteria, processes, and clinician obligations differ between states. Clinicians involved in VAD assessment or administration must be familiar with the specific legislation in their jurisdiction. Refer to the relevant state health department VAD guidelines for detailed procedural requirements.

Aboriginal and Torres Strait Islander Health Considerations

Aboriginal and Torres Strait Islander Health

Aboriginal and Torres Strait Islander Australians experience a disproportionate burden of chronic disease, lower life expectancy (8.8 years less than non-Indigenous Australians for males, 8.1 years for females), and higher rates of potentially preventable hospitalisation. Palliative care access and outcomes for Indigenous Australians are significantly poorer than for the general population, and ethical considerations are deeply interwoven with cultural safety, historical trauma, and systemic inequity.

Cultural Considerations in Palliative Care Ethics

  • Holistic health model: Aboriginal and Torres Strait Islander concepts of health and wellbeing encompass physical, social, emotional, cultural, and spiritual dimensions (as articulated in the National Aboriginal Health Strategy). Palliative care must address all these domains β€” not only physical symptom management.
  • Sorry Business: Death and dying are deeply embedded in cultural practice. "Sorry Business" (mourning and funeral customs) may involve extended family, community obligations, and traditional practices. Clinicians must be aware that Sorry Business may influence treatment decisions, location of care, and timing of death-related discussions.
  • Country and connection to land: Many Indigenous patients have a profound spiritual connection to their Country. Dying on Country (returning to traditional lands) is an important aspiration for many patients and should be supported where possible. Community palliative care and the Patient Assisted Travel Scheme (PATS) may facilitate this.
  • Language and naming: In some Aboriginal communities, it is culturally inappropriate to speak the name of a deceased person or to display their image. Clinicians should ask about and respect these practices during bereavement and in clinical documentation.
  • Kinship and decision-making: Decision-making in many Indigenous communities is collective, involving Elders, extended family, and community. The Western bioethical model of individual autonomy may not align with Indigenous decision-making frameworks. Clinicians should identify and engage with the appropriate decision-making network, while still ensuring the patient's voice is centred.
  • Trust and historical trauma: Generations of forced removal, institutionalisation, and racism have created deep distrust of government institutions, including health services. Building trust requires cultural humility, relationship-based care, and β€” where possible β€” continuity of clinicians and Aboriginal Health Workers/Practitioners (AHWPs).

Practical Ethical Guidance

Cultural consultation
Involve Aboriginal Health Workers/Practitioners (AHWPs) and Aboriginal Liaison Officers (ALOs) in all palliative care planning. These staff provide cultural brokerage, advocacy, and patient education. In remote areas, AHWPs are essential for culturally safe care delivery.
Yarning as communication
"Yarning" is a culturally embedded communication style that is relational, narrative, and non-linear. Ethical discussions about end-of-life care may be more effectively conducted through yarning than through structured Western clinical encounters. Allow time for silences and non-verbal communication.
Avoiding "double jeopardy"
Indigenous Australians already face systemic health disadvantage. Ethically, palliative care clinicians must ensure that Indigenous patients are not further disadvantaged by implicit bias, assumptions about treatment preferences, or failure to offer equivalent treatment options.
Telehealth and remote access
For patients in remote communities, telehealth palliative care consultations (MBS items 99200–99215) may improve access but require reliable internet, culturally safe communication, and AHWHP support. Ethical challenges include ensuring informed consent in the telehealth context and managing confidentiality in shared living environments.
Traditional healing
Some patients may wish to incorporate traditional healing practices alongside or instead of Western palliative care. Ethical practice requires respectful engagement with these wishes, avoidance of dismissiveness, and negotiation of a care plan that integrates both approaches where safe.
Grief and bereavement
Aboriginal and Torres Strait Islander communities experience grief and loss at significantly higher rates due to younger age of death, multiple simultaneous losses, and the compounding effects of intergenerational trauma. Bereavement support must be culturally informed, community-based, and long-term.
βœ…
Key resource: The National Palliative Care Strategy 2018 includes specific actions to improve palliative care for Aboriginal and Torres Strait Islander Australians. The Australian Indigenous HealthInfoNet provides an evidence base for practice. The Caring for Aboriginal and Torres Strait Islander Peoples at the End of Life (Palliative Care Australia, 2020) offers detailed practical guidance.

Quick Reference β€” Ethical Decision-Making Framework

Step
Action
Key Question
Tools / Resources
1. Gather facts
Review diagnosis, prognosis, treatment history, current status
What is the medical situation?
Medical records, investigations, specialist opinions
2. Identify the ethical issue
Name the specific ethical tension (e.g., autonomy vs. beneficence)
What makes this case ethically difficult?
Jonsen's four-box method, four-principles framework
3. Clarify values
Elicit patient, family, and clinician values and preferences
What matters most to the patient?
Goals-of-care conversation, values history, ACP documentation
4. Identify options
List all ethically defensible courses of action
What are the alternatives?
MDT input, specialist consultation, literature review
5. Apply ethical analysis
Evaluate options against ethical principles, legal frameworks, and clinical evidence
Which option best aligns with ethical obligations?
Ethics consultation, legal advice, institutional policy
6. Decide and document
Make a decision, communicate it to all stakeholders, and document thoroughly
What was decided, and why?
Clinical record, ACP documentation, NFR order if applicable
7. Review
Revisit the decision as the clinical situation evolves
Is the decision still appropriate?
Regular MDT review, family updates, goals-of-care plan revision

πŸ“š References

  1. 1. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 8th ed. New York: Oxford University Press; 2019.
  2. 2. Palliative Care Australia. National Palliative Care Standards. 4th ed. Canberra: PCA; 2018.
  3. 3. Australian Commission on Safety and Quality in Health Care (ACSQHC). National Consensus Statement: Essential Elements for Safe and High-Quality End-of-Life Care. Sydney: ACSQHC; 2015.
  4. 4. Australian and New Zealand Intensive Care Society (ANZICS). ANZICS Statement on Care and Decision-Making at the End of Life in Intensive Care. 3rd ed. Melbourne: ANZICS; 2020.
  5. 5. Jonsen AR, Siegler M, Winslade WJ. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. 8th ed. New York: McGraw-Hill; 2015.
  6. 6. Australian Indigenous HealthInfoNet. Overview of Aboriginal and Torres Strait Islander Health Status 2023. Perth: Edith Cowan University; 2024.
  7. 7. Palliative Care Australia. Caring for Aboriginal and Torres Strait Islander Peoples at the End of Life: A Guide for Palliative Care Providers. Canberra: PCA; 2020.
  8. 8. Victorian Law Reform Commission. Law of Succession: Final Report. Melbourne: VLRC; 2013. [Advance care directives and guardianship legislation].
  9. 9. Douglas CD, Kerridge IH. An uncertain present: the ethics of providing care at the end of life. Med J Aust. 2014;200(5):271–273.
  10. 10. Bloomer MJ, Botti M, Runacres F, Poon P, King J. The ethics of palliative sedation: a systematic review and meta-synthesis. J Pain Symptom Manage. 2018;55(2):521–531.
  11. 11. White BP, Willmott L, Close E, et al. Voluntary assisted dying in Australia: a comparative analysis of state legislation. UNSW Law J. 2022;45(3):832–870.
  12. 12. Morrison RS, Meier DE, Arnold RM. What's wrong with advance care planning? JAMA. 2021;326(16):1575–1576.
  13. 13. Australian Institute of Health and Welfare (AIHW). Palliative Care Services in Australia. Cat. No. HWI 320. Canberra: AIHW; 2023.
  14. 14. Forbat L, McManus E, Haraldsdottir E. Clinical ethics support in palliative care: a survey of practice in the UK and Ireland. Palliat Med. 2021;35(3):555–563.
  15. 15. Sellars M, Chung O, Nolte L, et al. Perspectives of people with dementia and carers on advance care planning and end-of-life care: a systematic review and thematic synthesis of qualitative studies. Palliat Med. 2019;33(3):274–290.
  16. 16. National Health and Medical Research Council (NHMRC). National Statement on Ethical Conduct in Human Research. Updated 2023. Canberra: NHMRC.
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).