📋 Key Information Summary
- Families benefit from honest, compassionate updates that describe what dying looks like — changes in breathing, circulation, consciousness, and skin — so they are not frightened by normal physiological events.
- Use plain language: avoid euphemisms that create confusion. "Your mother is dying" is kinder than vague phrases that leave families uncertain and unable to prepare.
- Hearing is considered the last sense to fade — encourage families to speak, play music, or simply sit quietly with the patient even when the patient appears deeply unconscious.
- Touch (hand-holding, gentle massage, familiar textures) provides comfort to both patient and family; reassure families that their presence matters.
- Opioids (morphine, oxycodone) and benzodiazepines (midazolam) are used to manage pain, dyspnoea, and terminal restlessness — when titrated correctly, they do not hasten death.
- Anticholinergics (hyoscine butylbromide, glycopyrrolate) reduce noisy respiratory secretions in the dying phase and provide comfort for families at the bedside.
- Anticipatory prescribing of subcutaneous syringe drivers and PRN medications ensures rapid symptom control without delays in the last hours of life.
- Family distress — anxiety, guilt, anticipatory grief, and conflict — is normal; validate emotions, offer counselling, and involve social work or pastoral care early.
- Give families explicit permission to rest, eat, leave the room, and sleep; reassure them they do not need a constant bedside vigil unless they choose it.
- After death, provide a clear, unhurried explanation; allow time for farewell rituals; offer bereavement follow-up including referral to palliative care bereavement services and Grief Australia.
- Aboriginal and Torres Strait Islander families may require culturally specific dying practices — sorry business protocols, Country, family decision-making structures — engage Aboriginal Health Workers and Liaison Officers (AHWLOs) early.
- Document family conversations, goals-of-care decisions, and advance care plans in the medical record; ensure after-hours staff are briefed on the care plan.
Introduction & Australian Epidemiology
The final days and hours of life represent a profound experience for patients and their families. In Australia, approximately 170,000 people die each year, and the majority of these deaths occur in hospitals (54%), with a significant proportion in residential aged care (32%) and a smaller but growing number at home (14%). Regardless of setting, families — broadly defined to include biological relatives, chosen family, friends, and carers — are central to the dying experience and require active, compassionate support from the healthcare team.
Supporting families in the last days of life is not ancillary care; it is a core clinical skill. Poor communication, unmanaged symptoms, and unaddressed family distress are the most common sources of complaints to health complaints commissions and coroners. Conversely, when families feel informed, included, and emotionally supported, they report higher satisfaction with end-of-life care and experience better bereavement outcomes.
This guideline addresses four practical domains: explaining the dying process in plain language, facilitating meaningful contact through hearing and touch, using medications to manage distressing symptoms for both patient and family comfort, and recognising and responding to family distress including anticipatory grief, guilt, and conflict. Recommendations align with the National Palliative Care Standards (4th edition, 2018), the National Consensus Statement: Essential Elements for Safe and High-Quality End-of-Life Care (ACSQHC, 2015), and Palliative Care Australia's National Palliative Care Strategy 2018.
The principles in this guideline apply across all settings — acute hospitals, palliative care units, residential aged care, and community-based care — and are relevant to all clinicians who may be present in the last days of life, including general practitioners, nurses, hospital medical officers, and allied health professionals.
Explaining Dying
One of the most important roles of clinicians in the last days of life is to prepare families for what they will see, hear, and experience. Most families have never witnessed a death; without explanation, normal physiological changes can cause alarm, guilt, and distress.
Communication Principles
- Be honest and direct: Use the words "dying" and "death." Avoid ambiguous phrases such as "we're doing everything we can" or "let's just see how things go" when the clinical trajectory is clear. Families consistently report that honest communication, even when the news is difficult, is preferable to uncertainty.
- Use plain language: Explain medical findings in everyday terms. "Her kidneys are shutting down" is clearer than "she is in multi-organ dysfunction."
- Normalise the dying process: Describe physical changes as a natural part of dying, not as signs of suffering or medical failure.
- Check understanding: Use the ask-tell-ask framework. Ask what the family already understands, share information in small chunks, then ask if they have questions.
- Offer a private, unhurried space: Even in busy wards, find a quiet room. Sit down. Make eye contact. Silence is acceptable — allow time for tears and questions.
What Families Can Expect — Physical Changes in Dying
| Change | What Families See | Explanation to Give |
|---|---|---|
| Breathing changes | Irregular breathing, long pauses (apnoea), Cheyne–Stokes pattern, noisy "rattle" | "The breathing is changing — it may speed up, slow down, or pause. This is the body's natural way of winding down. It is not painful." |
| Consciousness | Deep unresponsiveness, semi-coma, occasional eye-opening or murmuring | "He may not respond, but hearing is likely still present. Keep talking and holding his hand — it matters." |
| Skin changes | Mottling (livedo reticularis), cyanosis of extremities, cool peripheries, pallor | "The circulation is slowing. The feet and hands may look blue or feel cool. This is expected." |
| Reduced intake | Refusal of food and fluids, dry mouth | "The body is shutting down and doesn't need food or water. Forcing fluids can cause discomfort. We can keep the mouth comfortable with ice chips and lip balm." |
| Restlessness | Agitation, plucking at bedclothes, myoclonus | "Sometimes there is restlessness as the brain changes. We have medications that can settle this quickly and gently." |
| Urinary changes | Oliguria, dark concentrated urine, urinary incontinence | "The kidneys are slowing down. Urine will become less frequent and darker. This is normal." |
Important: Families often interpret the death rattle (terminal secretions) as choking or suffocation. Explain proactively that this sound is caused by pooled secretions in the upper airway — the patient is not aware of it and is not distressed by it. Pharmacological treatment with anticholinergics can reduce the sound for the comfort of those present.
Prognostic Communication — How Long?
Families almost always want to know how long. Use time ranges rather than single estimates: "hours to a day" or "a few days at most" is more accurate and honest than "tonight" or "a week." Acknowledge uncertainty: "I cannot be certain, but based on what I'm seeing, I think…" The Surprise Question ("Would I be surprised if this patient died in the next few days?") remains a useful clinical heuristic. Document prognostic conversations and ensure the entire team is aligned in messaging.
Advance Care Planning Conversations
If advance care plans are not already in place, the last days are generally too late for formal ACP documentation but not too late to confirm goals of care. Key questions include: "What would your mother have wanted?" "Did she ever talk about what mattered most to her?" Ensure any previously documented Advance Care Directive is accessible (e.g., uploaded to My Health Record or available through state-based registers such as the Queensland ACP Register or the Victorian ACP Register).
Hearing & Touch
Sensory awareness, particularly hearing and touch, persists well into the dying process. Encouraging families to remain present — and giving them practical guidance on how to connect — is one of the most valuable contributions clinicians can make.
Hearing — The Last Sense to Fade
- Electroencephalographic and physiological studies suggest that auditory processing may continue even in deep coma. Whether or not this is fully proven, the clinical benefit of encouraging families to speak and the absence of any harm makes this an evidence-pragmatic recommendation.
- Encourage conversation: Tell families: "Even though he seems deeply asleep, hearing is often the last sense to fade. Talk to him — share memories, say what you need to say, play his favourite music."
- Provide permission for difficult things: Some families need to hear: "It's okay to tell her it's alright to go. Sometimes people wait for permission."
- Music and familiar sounds: Familiar music, recorded voices of loved ones, or spiritual readings can be profoundly comforting. Offer to help families set up a playlist or audio recording.
- Quiet presence counts: Not every family is verbal. Sitting quietly, holding a hand, or simply being in the room is equally valid. Reassure families that their presence alone is enough.
Touch — Physical Connection
- Hand-holding: The simplest and most powerful form of touch. Encourage gentle hand-holding, stroking of the forearm, or placing a hand on the chest.
- Massage and comfort care: Gentle hand or foot massage with moisturising cream can be soothing for both patient and family. Occupational therapists or palliative care nurses can demonstrate techniques.
- Temperature comfort: Warm blankets, warm wheat bags, or cool cloths on the forehead can provide sensory comfort. Avoid electric heating pads in patients with reduced consciousness (burn risk).
- Physical closeness: If the setting allows, family members can lie beside the patient on the bed. This is safe and should be facilitated, not discouraged.
- Children at the bedside: Age-appropriate contact should be encouraged. Children benefit from simple explanations, the opportunity to draw pictures, write letters, or place a small toy beside the patient.
Practical tip: Place a sign at the bedside: "Hearing is present — please speak softly, hold their hand, and share your love." This guides all staff and visitors and creates a culture of compassionate bedside presence.
Creating a Dignified Environment
- Minimise unnecessary clinical interventions (routine vital signs, blood tests, IV line changes) that disturb the patient and alarm families.
- Adjust lighting — soft or natural light is preferable to harsh fluorescent lighting.
- Reduce noise: close doors, silence non-essential alarms, ask staff to speak softly.
- Allow personal items: photographs, religious artefacts, flowers, a favourite blanket.
- If the family wishes, allow pets to visit (check facility policy; most palliative care units facilitate this).
Role of Medications
Medications in the last days of life serve two purposes: managing the patient's symptoms (pain, dyspnoea, restlessness, secretions, seizures) and providing reassurance to families that distressing symptoms are being actively treated. Proactive prescribing — having medications available before they are urgently needed — is essential.
Principles of Medication Management in Dying
- Continue essential symptom medications where feasible (e.g., opioids for chronic pain) and stop medications that no longer serve a purpose (statins, antihypertensives, oral supplements).
- Convert to subcutaneous routes when oral intake is no longer possible. A syringe driver (continuous subcutaneous infusion) is the preferred method for delivering multiple medications over 24 hours.
- Anticipate and prescribe PRN medications for breakthrough symptoms — the nurse on duty must be able to administer medication without delay.
- Reassure families about opioids: The most common family concern is that morphine "killed" their loved one. Explain clearly: "The medication is given to ease suffering. At the correct dose, it does not hasten death. It allows a peaceful, comfortable passing."
Core Medications for the Dying Phase
Morphine
MS Contin® · Kapanol® · Ordine® · Opioid analgesic
Indication
Pain, dyspnoea
Adult dose
Opioid-naïve: 2.5–5 mg SC q4h PRN; syringe driver 5–10 mg/24h SC; titrate to effect. Opioid-tolerant: 1/6th to 1/3rd of total 24-hour oral dose as SC bolus q1–2h PRN; convert total 24-hour dose to syringe driver.
Renal adjustment
eGFR <30 mL/min: reduce dose by 50% and extend interval. Consider hydromorphone or fentanyl as alternatives (less active metabolite accumulation).
PBS status
✔ PBS General Benefit
Midazolam
Hypnovel® · Midazolam Injection · Benzodiazepine
Indication
Terminal restlessness, agitation, myoclonus, seizures, anxiety
Adult dose
2.5–5 mg SC q1h PRN for restlessness; syringe driver 10–30 mg/24h SC; refractory agitation: up to 60 mg/24h. For seizure: 5–10 mg SC stat.
Renal adjustment
Use with caution; reduce dose in hepatic impairment. Active metabolites may accumulate in renal failure — reduce starting dose.
PBS status
✔ PBS General Benefit (injection for palliative care)
Hyoscine Butylbromide
Buscopan® · Anticholinergic / Antispasmodic
Indication
Noisy terminal secretions (death rattle), bowel spasm
Adult dose
20 mg SC q4h PRN or syringe driver 60–80 mg/24h SC. Does NOT cross the blood–brain barrier — preferred over glycopyrrolate if sedation is undesirable.
Renal adjustment
No specific adjustment required. Use caution in hepatic impairment.
PBS status
✔ PBS General Benefit
Glycopyrrolate
Robinul® · Anticholinergic
Indication
Noisy terminal secretions (alternative to hyoscine butylbromide)
Adult dose
200 mcg SC q4h PRN or syringe driver 600–1200 mcg/24h SC. Does not cross blood–brain barrier; less sedating than hyoscine hydrobromide.
Renal adjustment
Use with caution; reduce dose in severe renal impairment.
PBS status
⚠ PBS Authority Required
Haloperidol
Serenace® · Haldol® · Butyrophenone antipsychotic
Indication
Nausea, vomiting, delirium-associated agitation (adjunct)
Adult dose
0.5–2.5 mg SC q4–8h PRN or syringe driver 2.5–10 mg/24h SC for nausea/agitation.
Renal adjustment
No specific dose adjustment. Caution in hepatic impairment — reduce dose.
PBS status
✔ PBS General Benefit
Dexamethasone
Dexmethsone® · Corticosteroid
Indication
Cerebral oedema / raised intracranial pressure (brain metastases), airway oedema, bone pain
Adult dose
4–8 mg IV/SC/PO mane (morning) — reduce to minimum effective dose. Avoid late-evening dosing (causes insomnia).
Renal adjustment
No dose adjustment required.
PBS status
✔ PBS General Benefit
Syringe Driver Setup (Continuous Subcutaneous Infusion)
| Device | Common Choices in Australia | Notes |
|---|---|---|
| McKinley T34™ | Most widely used ambulatory syringe driver in Australian hospitals and community palliative care | Programmable rate; 24-hour syringe. Ensure correct dilution (consult pharmacy). Subcut butterfly or BD Saf-T-Intima™ cannula. |
| Graseby MS16A / MS26 | Legacy devices still in use in some facilities | Non-programmable — rate set by syringe size and medication volume. Being phased out in favour of the T34. |
Common Syringe Driver Combinations
| Symptom | Medication | 24-hour SC dose (adult) |
|---|---|---|
| Pain / dyspnoea | Morphine | 5–100+ mg (opioid-tolerant: use 1/2 to 2/3 of total 24-hour oral equivalent) |
| Restlessness / agitation | Midazolam | 10–30 mg (up to 60 mg if refractory) |
| Secretions | Hyoscine butylbromide | 60–80 mg |
| Nausea / vomiting | Haloperidol | 2.5–10 mg |
| Nausea (GI origin) | Metoclopramide | 30–60 mg |
Double-check compatibility: Not all medications are stable when mixed in a single syringe. Always consult the palliative care team or hospital pharmacist before combining agents. Common incompatible pairs include morphine + cyclizine (precipitation risk). Refer to Palliative Care Therapeutic Guidelines or local syringe driver compatibility charts.
Addressing Family Concerns About Medications
- "Is the morphine killing them?" — "No. The dose we give is carefully tailored to relieve suffering. Multiple studies show that properly titrated opioids do not hasten death. They allow your loved one to be comfortable."
- "Why are you giving a sedative?" — "The midazolam is to ease restlessness. It is given at the lowest effective dose to keep them peaceful. We are not sedating them — we are treating distress."
- "Can we stop all the medications?" — "We can stop medications that aren't helping with comfort (e.g., cholesterol tablets), but we will continue the ones that keep them comfortable. These are the most important medications right now."
- "They seem more drowsy — is that the drugs?" — "As the body is shutting down, drowsiness increases naturally. The medications contribute some drowsiness, but most of what you're seeing is the natural process of dying."
Family Distress
Family distress in the last days of life is normal, expected, and multifaceted. It includes anticipatory grief, anxiety, guilt, anger, family conflict, spiritual distress, and practical worries. Recognising and responding to these forms of distress is a core competency for all clinicians involved in end-of-life care.
Common Sources of Family Distress
Common / Expected
Anticipatory Grief
Tearfulness, sadness, difficulty sleeping, loss of appetite, preoccupation with the dying person, rehearsing life without them. This is a normal response to impending loss.
Setting: All settings — validate and normalise
Moderate Distress
Guilt & Regret
"I should have visited more." "I should have noticed sooner." "Did we make the right treatment decisions?" Family members may oscillate between sadness and anger, blame themselves or clinicians.
Setting: Ward or home; social work / counselling referral
Severe Distress
Acute Grief Crisis
Inconsolable crying, inability to function, dissociation, expressions of self-harm or suicidal ideation, refusal to leave the bedside for days, extreme agitation, psychotic symptoms (rare).
Setting: Urgent psychiatric / psychology assessment; consider acute grief intervention
Family Conflict
Conflict among family members — about treatment decisions, who should be at the bedside, historical grievances, or financial matters — is common and can escalate in the last days. Strategies include:
- Identify a single family spokesperson where possible to streamline communication.
- Hold a family meeting facilitated by the medical team (ideally the consultant or GP) to align goals and clarify the care plan.
- Use the "substituted interests" test — ask: "What would your father have wanted?" — to refocus discussions on the patient rather than family dynamics.
- If conflict is escalating or affecting patient care, involve hospital ethics, social work, or the Office of the Public Advocate (state-dependent) if there are disputes about decision-making authority.
Practical Support for Families
- Permission to rest: "Please go and have a meal, get some sleep. We will call you immediately if anything changes. You need to look after yourself too." Some families need to hear this multiple times before they feel able to step away.
- Facilitate logistics: Accommodation for rural/remote families (Ronald McDonald House, hospital social worker liaising with patient travel schemes), parking, access to quiet rooms, tea/coffee facilities.
- Work and carer leave: Advise families about compassionate leave entitlements under the Fair Work Act 2009 (National Employment Standards — 2 days paid compassionate leave for full-time/part-time employees).
- Financial concerns: Referral to hospital social worker for Centrelink Carer Allowance, Carer Payment, and bereavement payment eligibility. Palliative Care Australia's helpline (1800 573 284) can assist with information.
- Spiritual and cultural needs: Offer chaplaincy or pastoral care. For non-religious families, a hospital-based spiritual care practitioner can still provide emotional presence and meaning-making support.
After Death — Supporting Families in the Immediate Post-Mortem Period
- Notification: Inform the family promptly and gently. Use clear language: "I'm very sorry — your father has died."
- Time with the body: Allow families unhurried time with the deceased. There is no medical urgency. Some families wish to wash, dress, or sit with the body for hours. Facilitate this.
- Cultural and religious rituals: Ask about and accommodate specific practices — washing and shrouding (Islamic tradition), vigil (Catholic tradition), smoking ceremony (Aboriginal tradition), etc.
- Organ and tissue donation: If the patient was a registered organ donor or the family wishes to discuss donation, contact the DonateLife team immediately (1800 777 203). In the absence of organ donation eligibility, tissue donation (corneas, heart valves, skin) may still be possible up to 24 hours post-mortem.
- Certification and paperwork: Complete the Medical Certificate of Cause of Death promptly. Provide the family with clear instructions on next steps (funeral director, Births Deaths and Marriages registry).
- Bereavement follow-up: Refer to palliative care bereavement services, GP follow-up (the GP should be notified of the death), and community supports such as Grief Australia (1800 642 026), Beyond Blue (1300 22 4636), and Lifeline (13 11 14) for at-risk family members.
Bereavement risk factors: Family members at higher risk of complicated grief include those with a prior history of mental illness, those who witnessed a distressing death (uncontrolled symptoms), socially isolated individuals, those with ambivalent or dependent relationships with the deceased, and parents who have lost a child. Ensure these individuals receive proactive follow-up.
Special Populations
Pregnancy & Perinatal Loss
Perinatal bereavement (stillbirth, neonatal death) requires dedicated support. Offer memory-making (photographs, hand/footprints, locks of hair, bonding time with the baby).
Refer to Red Nose Grief and Loss (1300 308 307) and SANDS (Stillbirth and Neonatal Death Support) for ongoing bereavement support.
Acknowledge the baby by name. Avoid minimising language ("it was for the best," "you can try again").
Maternal medications for comfort in late pregnancy must be reviewed — most opioids and benzodiazepines are relatively safe in the dying mother but discuss with the treating team.
Paediatric Dying & Supporting Families
Paediatric palliative care is best managed by specialist paediatric palliative care teams (e.g., Very Special Kids in Victoria, Hummingbird House in Queensland, Bear Cottage in NSW).
Siblings need age-appropriate explanations, involvement in care if they wish, and their own support — refer to sibling support programs.
Parents often experience intense guilt and self-blame. Validate, reassure, and offer ongoing psychological support.
Medication dosing must be weight-based. Consult paediatric palliative care formulary (e.g., Syringe Driver Use in Paediatric Palliative Care — Queensland Health guideline).
Parents should be given the option to be fully involved in medication administration and comfort care. Many find empowerment in being able to give PRN doses via subcutaneous syringe.
Older Adults & Aged Care Settings
In residential aged care facilities (RACFs), staff may lack confidence in end-of-life care. Proactive outreach from community palliative care teams (e.g., specialist palliative care nurse practitioners visiting RACFs) improves care quality.
Polypharmacy review is essential — deprescribe non-essential medications to reduce burden.
Cognitive impairment may complicate communication with family about the dying process. Use visual aids and repeated explanations.
Ensure aged care staff are trained in palliative care approaches — the Palliative Approach for Aged Care in the Community (PAAC) toolkit is freely available.
Respect existing Advance Care Directives and ensure they are documented and accessible in the RACF system.
Renal Impairment
Opioid metabolites (morphine-6-glucuronide) accumulate in renal failure — reduce doses and extend intervals, or switch to fentanyl or hydromorphone.
Dialysis withdrawal is a common scenario requiring specialist palliative care input. Families need clear explanation that stopping dialysis is a comfort-focused decision, not "giving up."
Patients withdrawing from dialysis typically die within 7–14 days. Set clear expectations with families.
Consult renal palliative care pathways (e.g., Renal Supportive Care pathway — Royal Melbourne Hospital).
Immunocompromised Patients
Discontinuation of active treatment (e.g., chemotherapy, immunosuppression in transplant patients) should be communicated clearly to families as a shift in goals, not a failure.
Palliative sedation may be required for refractory symptoms (e.g., terminal dyspnoea in graft-versus-host disease) — use midazolam infusion with specialist palliative care guidance.
Infection in the dying phase is common and usually not treated — explain to families that antibiotics will not change the trajectory and may prolong discomfort.
Infection control precautions may need to be relaxed for dying patients to facilitate family contact. Discuss with infection control and the treating team.
Hepatic Impairment
Hepatic encephalopathy may cause agitation that mimics terminal restlessness — consider lactulose and review precipitants before escalating sedation.
Opioid metabolism is impaired — use lower doses and longer intervals. Morphine is preferred over codeine; fentanyl is also acceptable.
Benzodiazepines should be used with caution — midazolam may be preferred (shorter acting) at reduced doses. Avoid long-acting agents (diazepam).
Coagulopathy in hepatic failure may cause bleeding-related distress — prepare families and have absorbent pads available.
Aboriginal and Torres Strait Islander Health Considerations
Aboriginal and Torres Strait Islander Health
Death and dying hold deep cultural significance for Aboriginal and Torres Strait Islander peoples. "Sorry business" — the collective mourning process — involves extended family and community, may last for days or weeks, and includes specific cultural protocols that must be respected and facilitated by the healthcare team. Failure to accommodate sorry business is a significant source of cultural harm and distrust of health services.
Cultural safety warning: In many Aboriginal and Torres Strait Islander communities, it is culturally inappropriate to speak the name of the deceased, display photographs, or use images of the recently deceased. The word "sorry" has specific cultural meaning related to grief. Always ask the family about their specific cultural protocols rather than assuming — practices vary between communities and nations. Never use the deceased person's name unless the family has indicated it is acceptable.
📚 References
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