📋 Key Information Summary
- A "good death" is deeply individual but consistently includes adequate symptom control, preservation of dignity, and the opportunity to prepare practically and emotionally.
- Patient values — including cultural, spiritual, and personal preferences — must drive end-of-life decision-making, not institutional convenience or default escalation pathways.
- Whole-person care addresses physical, psychological, social, and spiritual needs simultaneously; no domain should be neglected at end of life.
- Life completion involves supporting patients to resolve unfinished business, say goodbye, and find meaning in their remaining time.
- Family presence at the time of death is valued by the majority of Australians and should be facilitated where desired, including in acute hospital settings.
- Advance care planning (ACP) documents are legally recognised across all Australian states and territories and should be completed early in the disease trajectory.
- Palliative Care Australia's National Consensus Statement identifies seven domains of a good death: preferences, pain/symptom management, emotional wellbeing, spiritual wellbeing, family involvement, treatment consistency, and death occurring in the preferred location.
- Opioids (morphine, oxycodone, fentanyl) remain the mainstay of dyspnoea and pain management at end of life; anticipatory prescribing prevents crisis-driven dosing.
- Continuous subcutaneous infusion (CSCI) via syringe driver is the preferred route when oral intake fails; commonly used agents include morphine, midazolam, haloperidol, hyoscine butylbromide, and dexamethasone.
- Aboriginal and Torres Strait Islander communities hold diverse cultural beliefs about dying and Country; culturally safe palliative care requires community-led models and flexible service delivery.
- Only about 14% of Australians who would benefit from palliative care currently receive specialist services; most end-of-life care is delivered in general practice, residential aged care, and acute hospitals.
- Clinicians must distinguish symptom management at end of life (the principle of double effect) from euthanasia; the intent is comfort, not hastening death.
Introduction & Australian Context
The concept of "dying well" — often framed as a "good death" — is a central aspiration of palliative care and a fundamental human concern. This topic explores patient-centred meanings of comfort, dignity, and completion at end of life, acknowledging that these concepts are shaped by individual values, cultural backgrounds, spiritual beliefs, and lived experience.
In Australia, approximately 160,000 people die each year, and this figure is projected to rise to over 250,000 by 2050 due to population ageing. Despite growing recognition that high-quality end-of-life care should be a universal right, significant gaps remain between what Australians say they want at end of life and what actually occurs.
The preference–reality gap: Surveys consistently show that 70–80% of Australians would prefer to die at home, yet approximately 54% die in hospital and only 14% die at home. Fewer than 15% of those who could benefit from palliative care access specialist palliative care services. Closing this gap requires earlier palliative care referral, expanded community-based services, and culturally responsive models of care.
The National Palliative Care Strategy 2018 (updated framework, Australian Government) defines palliative care as care that "improves the quality of life of people with a life-limiting illness and their families, through the prevention and relief of suffering." The Palliative Care Australia National Consensus Statement — What is a Good Death? — synthesised evidence and community consultation to identify seven key domains that contribute to dying well:
- Knowing that death is coming and having the ability to understand what to expect
- Being able to retain a sense of control during the dying process
- Having access to preferred palliative care and pain management
- Having choice and control over where death occurs
- Having access to information and expertise of any kind needed
- Having access to spiritual and emotional support as required
- Having time to say goodbye and having the ability to control who is present at death
This article examines four interrelated dimensions of dying well: Patient Values, Whole-Person Care, Life Completion, and Family Presence. Each draws on Australian evidence, policy, and clinical practice to provide a framework for clinicians across all settings — general practice, acute hospitals, residential aged care, and specialist palliative care.
Scope note: This guideline addresses the concept of dying well and the clinician's role in facilitating it. It does not cover Voluntary Assisted Dying (VAD), which is legislated separately in all Australian states (Victoria 2019, Western Australia 2021, Tasmania 2022, South Australia 2023, Queensland 2023, New South Wales 2023). VAD is a distinct legal and clinical framework with its own eligibility criteria and processes.
Patient Values
At the heart of dying well is the recognition that each person brings a unique set of values, beliefs, and life experiences that shape what a good death means to them. Patient-centred end-of-life care requires clinicians to actively explore, respect, and integrate these values into clinical decision-making — not assume that medical priorities align with the patient's priorities.
What Australians Value at End of Life
Large-scale Australian and international studies consistently identify the following as the most commonly valued elements at end of life:
| Value Domain | What Patients Say They Want | Clinical Implication |
|---|---|---|
| Pain and symptom control | Not to be in pain or breathless; to be comfortable | Proactive symptom assessment; anticipatory prescribing; regular review |
| Dignity and respect | To be treated as a person, not a diagnosis; to maintain privacy | Address the person by name; maintain personal care; protect modesty |
| Autonomy and choice | To participate in decisions; to be listened to; to have preferences honoured | Shared decision-making; advance care planning; respect refusals |
| Preparation | To know what to expect; to put affairs in order; to say goodbye | Honest, compassionate prognostic communication; referral to social work and pastoral care |
| Family and carer involvement | To be surrounded by loved ones; to have family supported | Flexible visiting; family meetings; carer support and bereavement referrals |
| Place of death | To die at home or in a familiar environment where possible | Community palliative care referral; hospital-in-the-home; residential aged care liaison |
| Spiritual and existential peace | To find meaning; to reconcile; to have spiritual needs addressed | Pastoral care referral; culturally appropriate rituals; chaplaincy |
Eliciting Patient Values — Practical Tools
Values exploration is not a one-off conversation. It is an ongoing dialogue that deepens as the illness progresses and as the patient's understanding evolves. Recommended approaches include:
- Ask-tell-ask framework: Begin by asking what the patient already knows and what matters most; share information tailored to their values; check understanding.
- Serious Illness Conversation Guide (adapted for Australia): Structured prompts including "What is your understanding of your illness?", "What are your most important goals if time is short?", "What abilities are so important that you can't imagine living without them?", and "What do you want your family to know?"
- Values-based advance care planning: Documenting not just treatment preferences but the underlying values that drive them (e.g., "Being able to recognise my grandchildren is more important to me than living as long as possible").
- MyValues, Advance Care Planning Australia, and Respecting Patient Choices resources: Australian-specific tools that help patients articulate and document their values in legally recognised formats.
Clinical pitfall — defaulting to treatment: In the absence of documented patient preferences, Australian hospitals tend to default to escalation of care (ICU admission, cardiopulmonary resuscitation, invasive interventions). This is often contrary to what the patient would have chosen. Earlier advance care planning conversations — ideally initiated by the GP during chronic disease management — prevent crisis-driven decisions that may not honour the patient's values.
Cultural and Spiritual Values
Australia is one of the most culturally diverse nations on earth. Clinicians must be aware that:
- Some patients may not want to be told their prognosis directly (e.g., certain Greek, Italian, Chinese, and Vietnamese cultural traditions may prefer that family members receive prognostic information first).
- Religious and spiritual rituals at end of life (e.g., Catholic last rites, Islamic recitation of the Shahada, Hindu rituals near death, Buddhist chanting) may require coordination and environmental accommodation.
- Some communities hold beliefs about the importance of dying on Country (particularly Aboriginal and Torres Strait Islander peoples) or in specific spiritual contexts.
- Cultural liaison officers, multicultural health workers, and accredited interpreters should be engaged — not just family members acting as interpreters.
Whole-Person Care
Whole-person care — addressing physical, psychological, social, and spiritual needs — is the foundational philosophy of palliative care. At end of life, these domains are deeply interconnected, and neglecting any single dimension compromises the overall experience of dying well. The Palliative Care Australia framework and the World Health Organization definition both emphasise that palliative care is not simply about managing symptoms but about affirming life and treating the dying process as a normal part of living.
Physical Comfort
Physical symptom management is the most visible component of end-of-life care and is the domain most directly amenable to clinical intervention. The most common symptoms at end of life, and their management, are summarised below.
| Symptom | Prevalence | First-Line Management | Second-Line / Refractory |
|---|---|---|---|
| Pain | 60–80% | Opioid initiation per WHO analgesic ladder; regular dosing; breakthrough doses | Opioid rotation (e.g., morphine → oxycodone or fentanyl); adjuvants (gabapentin for neuropathic pain); nerve blocks; subcutaneous ketamine (specialist use) |
| Dyspnoea | 50–70% | Low-dose immediate-release morphine 2.5–5 mg PO/SC; fan therapy; positioning; low-flow O₂ if hypoxaemic | Nebulised saline; midazolam 2.5–5 mg SC for refractory dyspnoea/anxiety; benzodiazepines as anxiolytic adjunct |
| Nausea & vomiting | 40–70% | Haloperidol 0.5–1 mg PO/SC BD-TDS; metoclopramide 10 mg PO/SC TDS (if not bowel obstruction) | Ondansetron 4–8 mg; cyclizine 50 mg SC; dexamethasone 4–8 mg; hyoscine butylbromide 20 mg SC for secretions |
| Respiratory secretions (death rattle) | 50–80% in final days | Hyoscine butylbromide 20 mg SC or glycopyrrolate 200 mcg SC; repositioning; reassure family | Atropine 0.6 mg SC (less commonly used due to central effects); ensure no IV fluids contributing to secretions |
| Agitation / delirium | 30–80% in final days | Haloperidol 0.5–2.5 mg SC; midazolam 2.5–5 mg SC; environmental strategies (reduce stimulation, familiar objects) | Levomepromazine 6.25–12.5 mg SC; clonazepam 0.5–1 mg SC; phenobarbitone (specialist palliative care guidance) |
| Constipation | 50–90% (opioid-related) | Prevention: commence laxative with any opioid — senna 1–2 tabs nocte + macrogol (Movicol®) 1–2 sachets daily | Bisacodyl suppository; rectal evacuation if faecal loading; methylnaltrexone 8 mg SC (authority required PBS) |
Syringe Driver (Continuous Subcutaneous Infusion)
When oral or sublingual medication is no longer feasible, a syringe driver (e.g., McKinley T34 or Graseby MS26) delivers continuous subcutaneous infusion over 24 hours. This is the standard approach in Australian palliative care for managing multiple symptoms simultaneously in the last days of life.
Morphine (syringe driver)
Ordine® · Opioid analgesic / anti-dyspnoeic
Adult dose
Convert total 24-hour oral morphine equivalent to SC dose (generally 1/2 to 1/3 of oral dose); give 1/3 as bolus SC doses PRN
Renal adjustment
Reduce dose and extend interval if eGFR <30; consider fentanyl or alfentanil in severe renal impairment (active metabolites accumulate)
PBS status
✔ PBS General Benefit
Midazolam (syringe driver)
Hypnovel® · Benzodiazepine / sedative
Adult dose
10–30 mg over 24 hours SC for agitation, myoclonus, or refractory dyspnoea; titrate to effect
Renal adjustment
Use lower end of dosing range; minimal active metabolite accumulation
PBS status
✔ PBS General Benefit
Haloperidol (syringe driver)
Serenace® · Anti-emetic / antipsychotic
Adult dose
2.5–10 mg over 24 hours SC for nausea, vomiting, or delirium-related agitation
Caution
Use with caution in Parkinson's disease and Lewy body dementia (worsens extrapyramidal symptoms); consider levomepromazine as alternative
PBS status
✔ PBS General Benefit
Hyoscine butylbromide (syringe driver)
Buscopan® · Anti-secretory
Adult dose
40–80 mg over 24 hours SC for upper airway secretions (death rattle)
Renal adjustment
No specific adjustment; caution with urinary retention and constipation
PBS status
✔ PBS General Benefit
Principle of double effect: Administering opioids and sedatives to relieve suffering at end of life — even if a foreseeable but unintended consequence is a marginally shortened life — is ethically and legally permissible in Australian clinical practice. The intent is symptom relief, not death. This is distinct from euthanasia and voluntary assisted dying. Clinicians should document symptom indication and intent clearly.
Psychological Wellbeing
Anxiety, depression, existential distress, and fear of the dying process are common at end of life and may be under-recognised when clinicians focus exclusively on physical symptoms. Psychological care includes:
- Regular screening using validated tools (e.g., Distress Thermometer, Edmonton Symptom Assessment System — ESAS)
- Pharmacological management: sertraline 50–100 mg daily (preferred SSRI with favourable side-effect profile at end of life) or mirtazapine 15–30 mg nocte (useful for insomnia, appetite, and anxiety)
- Non-pharmacological approaches: counselling, dignity therapy, life review, music therapy, art therapy (available through many Australian specialist palliative care services)
- Referral to clinical psychology or psychiatry for complex existential distress, refractory depression, or demoralisation syndrome
Social Needs
Social isolation, carer burden, financial stress, and disrupted relationships are common at end of life. Social workers play a crucial role in:
- Facilitating family meetings and mediation when there is conflict about care decisions
- Connecting patients and families with Centrelink support (Carer Payment, Carer Allowance, Mobility Allowance), My Aged Care, NDIS (for patients <65), and the National Continence Programme
- Assisting with practical matters: wills, powers of attorney, funeral planning, financial affairs
- Coordinating respite care and carer support services
Spiritual Care
Spiritual distress is distinct from psychological distress and requires specific attention. In Australian palliative care settings:
- Pastoral care and chaplaincy services should be available in all hospitals and hospices (publicly funded in most state health services)
- Spiritual care is non-denominational and includes support for those with no religious affiliation who may still experience existential distress
- The FICA Spiritual History Tool (Faith, Importance, Community, Address) or HOPE questions can guide initial spiritual assessment
- Referral to culturally specific spiritual leaders (e.g., Buddhist monks, Islamic imams, Hindu priests) should be facilitated proactively when known
Life Completion
Life completion refers to the psychological and relational work that patients engage in — or wish they could engage in — as they approach death. It encompasses the desire to find meaning, resolve unfinished business, say goodbye, and leave a legacy. Research consistently shows that patients who achieve a sense of life completion experience less psychological distress at end of life, and their bereaved families report better outcomes.
Dignity Therapy
Dignity therapy, developed by Dr Harvey Max Chochinov (Canada) and now implemented in many Australian palliative care services, is a brief psychotherapeutic intervention specifically designed to enhance a sense of meaning and purpose at end of life. The process involves:
1
Dignity-conserving interview
A trained therapist conducts a semi-structured interview exploring the patient's life story, accomplishments, hopes for loved ones, and words of wisdom. Sessions typically last 30–60 minutes.
2
Transcription and editing
The interview is transcribed, edited into a coherent narrative, and formatted as a generativity document — a tangible legacy that the patient can review, revise, and share.
3
Presentation and revision
The document is presented to the patient for final review. It becomes a lasting record — given to family members or kept by the patient — that affirms their identity beyond their illness.
Australian studies have demonstrated that dignity therapy reduces existential distress, enhances sense of dignity, and improves the bereavement experience for family members. It is available through specialist palliative care services, some hospital palliative care consult teams, and trained community palliative care nurses.
Advance Care Planning as Life Completion
Advance care planning (ACP) serves dual purposes: it is both a clinical planning tool and a life completion activity. When ACP is framed not merely as a form-filling exercise but as a values-based conversation, it can:
- Help patients articulate what matters most to them — a meaningful reflective process in itself
- Provide an opportunity to discuss fears, hopes, and the legacy they wish to leave
- Empower patients to maintain a sense of control even as their illness progresses
- Reduce family conflict and decision-making burden during the dying process
In Australia, ACP is supported nationally by Advance Care Planning Australia (ACPA, based at Austin Health, Melbourne) and is legally recognised through Substitute Decision-Maker legislation in all states and territories. Key resources include:
- Advance Care Directive: A legally binding document (terminology varies by state: ACD in Victoria and SA, Advance Health Directive in Qld and WA, etc.)
- Values directive: A statement of the person's values and preferences to guide substitute decision-makers when specific treatment decisions cannot be anticipated
- Appointment of Substitute Decision-Maker: Formal nomination of a person to make medical decisions if the patient loses capacity (varying legal frameworks by state)
MBS items for ACP: Medicare supports ACP through GP Management Plans (MBS 721, 723), chronic disease management reviews, and specific time-tiered consultation items. Dedicated ACP MBS items are not currently available, but the Australian Government has signalled support for integrating ACP into primary care funding models. Palliative care case conferences (MBS 880+) also facilitate ACP discussions.
Legacy Activities
Beyond formal therapies, clinicians can facilitate a wide range of life completion activities:
- Letter-writing: helping patients write letters to loved ones — for reading now or after death
- Memory-making: photo projects, recorded messages, recipe books, quilting, memory boxes
- Storytelling: life story projects, particularly valuable for older Australians and cultural elders
- Reconciliation: facilitating contact with estranged family members or friends; supporting forgiveness and reconciliation processes
- Practical legacy: ensuring wills are completed, digital assets are managed, and practical affairs are in order (referral to solicitors, financial counsellors)
- Volunteering and mentorship: some patients find meaning in sharing wisdom with others — peer support programmes for newly diagnosed patients
Family Presence
Family presence — both during the final days and at the moment of death — is consistently identified as one of the most important elements of a good death by Australian patients, families, and clinicians. "Family" is defined broadly to include biological relatives, chosen family, close friends, carers, and community members, reflecting the diversity of Australian family structures.
Why Family Presence Matters
For the Patient
- Reduces isolation and fear
- Provides emotional comfort and connection
- Allows completion of relational tasks (saying goodbye, expressing love)
- Supports the patient's sense of identity — being held by those who know them
For the Family
- Reduces complicated grief and regret
- Provides a sense of having fulfilled their role and honoured their loved one
- Enables participation in care (feeding, comforting, bathing) — an active role rather than helplessness
- Facilitates realistic understanding of death — important for processing grief
Facilitating Family Presence in Different Settings
| Setting | Barriers | Strategies |
|---|---|---|
| Acute hospital | Restricted visiting hours; shared rooms; clinical procedures; transfer to unfamiliar wards | Implement flexible end-of-life visiting policy; allocate single room where possible; designate a family contact person; provide sleeping arrangements (recliner chairs, family rooms); ensure staff education on the importance of family presence |
| Hospice / palliative care unit | Limited beds; geographical distance for rural families | 24-hour open visiting as standard; accommodation for family members; family kitchen facilities; bereavement follow-up |
| Residential aged care | Institutional routines; staffing limitations; COVID-era visiting restrictions | Advocate for 24-hour visiting for residents who are dying; support RACF staff in end-of-life care; ensure after-hours access arrangements are clear |
| Home | Carer exhaustion; lack of clinical support; after-hours gaps; geographical isolation | Community palliative care nursing support; hospital-in-the-home; after-hours palliative care helplines (e.g., Palliative Care Victoria 1800 360 000, NSW 1800 548 225); respite admissions; carer acknowledgement and support |
Supporting Families Through the Dying Process
Clinicians play a critical role in preparing and supporting families during the final hours and days:
- Prepare the family: Explain what dying may look like — changes in breathing patterns (Cheyne-Stokes), mottling of extremities, reduced consciousness, altered sounds. Normalise these changes to reduce fear and anxiety.
- Encourage presence: Gently encourage family members to be present if they wish; reassure them that hearing is believed to persist even when consciousness is diminished. Encourage talking to, touching, and being close to the dying person.
- Give permission: Some families may need permission to leave the room (to rest, eat, attend to children) without guilt. Others may need permission to tell their loved one it is "okay to go" — a profoundly important moment.
- Cultural and religious needs: Facilitate specific rituals: turning the bed toward Mecca (Islam), avoiding placing the body on the floor (certain Hindu traditions), silence or chanting depending on faith tradition, smoking ceremonies for Aboriginal and Torres Strait Islander peoples.
- Care after death: Allow families time with the body after death. Do not rush post-mortem care. Offer to assist with bathing, dressing, and cultural practices. Provide clear communication about next steps (medical certificate, funeral director contact).
Children and Family Presence
Children at end of life: The decision to include children in the dying process should be guided by the child's age, developmental stage, expressed wishes, and parental/carer judgement. Evidence supports that age-appropriate inclusion — with preparation and support — can reduce children's anxiety and prevent feelings of exclusion and "not being told." Play therapists, child life therapists, and paediatric palliative care teams can provide guidance. Resources include the Australian Children's Palliative Care Programme (Paediatric Palliative Care Australia and New Zealand — PPCANZ).
Bereavement Support
Facilitating a good death includes supporting the family beyond the moment of death:
- Proactive bereavement risk assessment: identify risk factors for complicated grief (sudden death, ambivalent relationship, limited social support, pre-existing mental health conditions, loss of a child)
- Routine bereavement contact within 2 weeks of death (phone call or letter from the palliative care team)
- Referral to grief counselling services (e.g., Grief Australia, National Association for Loss and Grief, state-based bereavement services)
- GP follow-up at 6 weeks and 3 months post-death — assess for complicated grief, depression, and functional impairment
- Access to Medicare-funded psychological support under Better Access (MBS 80110–80170) for bereavement-related mental health conditions
Special Populations
Paediatrics
Children's deaths are experienced differently by families and require highly specialised, family-centred care. The child's developmental stage shapes their understanding of death and their need for involvement.
Key models: Starship Children's Health (NZ model, referenced in Oz), Bear Cottage (Sydney), Very Special Kids (Melbourne), Hummingbird House (Brisbane) — all provide respite, end-of-life care, and bereavement support.
Symptom management: Paediatric doses calculated per kg; morphine SC infusion 10–40 mcg/kg/hour; midazolam 20–60 mcg/kg/hour; consult paediatric palliative care specialist for complex symptom management.
Parents should be supported as primary decision-makers; siblings should be included age-appropriately; school and social connections should be maintained as long as possible.
Older Australians
The majority of deaths in Australia occur in people aged ≥65, and most occur in residential aged care or acute hospitals. Older adults may have multimorbidity that obscures the transition to palliative care.
Frailty-based approach: Clinical Frailty Scale (CFS) scores ≥7 (severely frail) should trigger palliative care goals-of-care discussions alongside active disease management.
Medication considerations: Reduce opioid starting doses by 50% in frail elderly; avoid anticholinergic burden; manage constipation proactively; deprescribing is an act of care at end of life.
Residential aged care facilities should have End-of-Life Care Plans aligned with the Aged Care Quality Standards (Standard 3 — personal care and clinical care). The Aged Care Royal Commission (2021) recommended mandatory palliative care training for RACF staff.
Renal Impairment
Patients with end-stage kidney disease (ESKD) face a complex decision between continued dialysis and conservative kidney management (withdrawing or not starting dialysis). Withdrawing from dialysis is one of the most common pathways to death in Australian nephrology units.
Opioid choice: Morphine metabolites (M6G) accumulate in renal failure — use fentanyl or alfentanil as preferred opioids; oxycodone with caution; avoid codeine and tramadol.
Symptom burden: Patients with ESKD experience high symptom burden (pruritus, restless legs, nausea, fatigue, pain) — proactive symptom management plans should be in place before dialysis withdrawal.
Death following dialysis withdrawal typically occurs within 7–14 days with adequate symptom control. Specialist palliative care referral is recommended.
Immunocompromised
Patients with advanced HIV (though increasingly rare as a cause of death in Australia), organ transplant recipients on immunosuppression, and those on chemotherapy face unique end-of-life challenges including infection-related symptom burden and complex polypharmacy.
Medication interactions: Review drug interactions between palliative medications and ongoing immunosuppressants, antiretrovirals, or targeted therapies. Opioid metabolism may be affected by CYP450 inhibitors (e.g., azole antifungals increase opioid levels).
Goals-of-care discussions should be initiated early in the disease trajectory, ideally at the time of listing for transplant or initiation of chemotherapy.
Rural and Remote Australians
Geographical isolation presents significant barriers to dying well: limited access to specialist palliative care, opioids (particularly in remote Aboriginal communities where Schedule 8 regulations are stringent), after-hours medical care, and grief support services.
Telehealth: MBS-funded telehealth items (phone and video) enable palliative care specialist consultations for remote patients. The Australian Government's telehealth MBS items (introduced permanently in 2022) include palliative care consultations.
Flying Doctor / RFDS: The Royal Flying Doctor Service provides emergency and primary care including palliative care retrieval and remote clinical support.
Death on Country — enabling Aboriginal and Torres Strait Islander peoples to return to their community and Country to die — is a priority that requires flexible hospital discharge and medical transport coordination.
Aboriginal and Torres Strait Islander Health Considerations
Aboriginal and Torres Strait Islander Health — Dying Well
For Aboriginal and Torres Strait Islander peoples, dying well is inseparable from connection to Country, community, culture, and spiritual tradition. The concept of a "good death" in many Indigenous communities includes dying on Country, being surrounded by family and Elders, and having cultural and spiritual practices honoured. However, Aboriginal and Torres Strait Islander peoples experience significantly worse access to palliative care, higher rates of hospital death away from Country, and greater bereavement burden than non-Indigenous Australians.
Health inequity: Aboriginal and Torres Strait Islander Australians die at rates 1.6 times higher than non-Indigenous Australians, with a life expectancy gap of approximately 8 years (males) and 8.6 years (females). They are disproportionately affected by chronic diseases that require palliative care, yet access to specialist palliative care is significantly lower in Indigenous communities. The term "sorry business" encompasses the complex cultural practices surrounding death, mourning, and bereavement.
Cultural Considerations in End-of-Life Care
- Saying the name of the deceased: In many Aboriginal communities, it is culturally inappropriate to say the name of a deceased person or display their image for a period after death. Clinicians should ask families about this practice and ensure staff are informed.
- Skin and kinship obligations: Cultural obligations around who can be present, who can provide care, and who manages the body after death vary between communities. Avoid making assumptions — consult with the family, local Aboriginal Health Workers, or community Elders.
- Dying on Country: Many Aboriginal people wish to return to their traditional lands (Country) to die. This may require coordination with medical transport, remote health services, and flexible discharge planning from hospitals — sometimes over vast distances.
- Smoking ceremony: A traditional smoking ceremony may be performed at or after the time of death. Hospitals and health services should have policies to accommodate this (including outdoor areas and fire safety considerations).
- Social and collective mourning: Sorry business can involve large gatherings, extended mourning periods, and communal grief rituals. Families may require extended time off, flexibility from employers, and culturally safe bereavement support.
- Sorry camp / sorry business: Following a death, communities may establish sorry camps where family and community members gather for days or weeks. Hospital discharge planning should be flexible enough to facilitate this.
Service Models and Workforce
- Aboriginal Health Workers and Aboriginal Liaison Officers: These are essential cultural brokers in end-of-life care. They can facilitate communication between families and clinicians, ensure cultural protocols are followed, and provide grief support grounded in cultural understanding.
- Aboriginal Community Controlled Health Organisations (ACCHOs): Services such as the Aboriginal Medical Services Alliance Northern Territory (AMSANT), Winnunga Nimmityjah (ACT), and Redfern Aboriginal Medical Service (NSW) provide culturally safe primary and palliative care. They are best placed to deliver end-of-life care in Indigenous communities.
- Congregate care models: The Program of Experience in the Palliative Approach (PEPA) and the Indigenous Chronic Disease Package include training and support for palliative care delivery in Indigenous communities.
- CARPA Clinical Procedures Manual (Remote Primary Health Care Manuals): Provides clinical guidance for remote health practitioners, including palliative care protocols adapted for remote Aboriginal communities.
Bereavement and Grief
Aboriginal and Torres Strait Islander peoples experience higher rates of bereavement across the life course, with cumulative grief a significant contributor to social and emotional wellbeing burden. Culturally responsive bereavement support must:
- Recognise that grief in Indigenous communities is often collective, not solely individual
- Be delivered by or in partnership with Aboriginal and Torres Strait Islander organisations and healers
- Respect the duration and expression of mourning, which may differ from Western grief models
- Acknowledge intergenerational trauma from colonisation, the Stolen Generations, and ongoing systemic racism — all of which compound the grief experience
📚 References
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