Dying at Home: What Families Actually Need to Know
70% of Australians say they want to die at home. Only 14% do. The gap is not about desire — it's about planning, support, and knowing what's available.
This guide covers how to make palliative care at home actually work. Not the sanitised version — the real one. What services exist, what they cost (most are free), what equipment you'll need, how to manage symptoms, when to call for help, and how to support yourself as a carer through the hardest thing you'll ever do.
What Palliative Care Actually Is
The #1 Misconception
Palliative care is NOT just end-of-life care. This is the most common and most damaging misconception. Palliative care is about quality of life with any serious illness. It can — and should — run alongside active treatment. Early referral to palliative care is associated with better outcomes, less suffering, and in some studies, longer survival.
Starts at Diagnosis of Life-Limiting Illness
Not at the "end." A cancer diagnosis, advanced heart failure, severe COPD, motor neurone disease, advanced dementia — all qualify for palliative care from the point of diagnosis. Early involvement means better symptom management and better planning.
Runs Alongside Treatment
You can have chemotherapy AND palliative care. Surgery AND palliative care. Palliative care is not "giving up" — it's about managing pain, nausea, breathlessness, anxiety, and other symptoms while treatment continues.
Whole-Person Care
Physical symptoms, psychological distress, social isolation, spiritual needs, family support, practical planning. Palliative care addresses all of these — not just the medical side.
Family Care Too
Palliative care supports the whole family. Carer burnout, children's grief, relationship strain, financial stress, bereavement — all within scope. The patient is not the only person who needs help.
Who Provides Palliative Care at Home
Home palliative care is a team effort. Here's who's involved:
| Provider | Role | Frequency |
|---|---|---|
| GP | Coordinates overall care plan, prescribes medications, makes referrals, provides ongoing medical oversight | Weekly to fortnightly (more as needed) |
| Specialist Palliative Care Nurse | Symptom assessment, medication management, wound care, syringe driver management, family education | 1–7 visits per week depending on stage |
| Palliative Care Physician | Complex symptom management, medication adjustments, consults for difficult pain or breathlessness | As needed — usually fortnightly or for crises |
| Community Nursing | Personal care (showering, toileting, repositioning), wound care, medication administration | Daily visits, sometimes twice daily in final days |
| Allied Health | Physiotherapy (mobility, comfort positioning), occupational therapy (equipment, home setup), social worker (planning, counselling) | As needed — usually weekly |
| Palliative Care Volunteers | Companionship, sitting with patient so carer can rest, light domestic help, transport to appointments | 2–4 hours per visit, 1–3 times per week |
State-by-State Palliative Care Services
| State | Key Providers | Phone / Referral |
|---|---|---|
| Victoria | Peter MacCallum Cancer Centre, Barwon Health Palliative Care, Austin Health, Bethlehem Hospital, Calvary | GP referral to local palliative care service. Palliative Care Victoria: (03) 9662 9644 |
| NSW | Sacred Heart Health Service, HammondCare, Calvary Mater Newcastle, Prince of Wales Hospital | GP referral. NSW Palliative Care Network: (02) 9845 3735 |
| Queensland | Metro South Palliative Care, Royal Brisbane Hospital, Gold Coast University Hospital, Karuna Hospice | GP referral. Palliative Care Queensland: (07) 3842 3242 |
| South Australia | Mary Potter Hospice, Central Adelaide Palliative Care, Southern Adelaide Palliative Care | GP referral. Palliative Care SA: (08) 8271 1643 |
| Western Australia | Silver Chain Hospice Care, Hollywood Private Hospital, Bethesda Hospital, Murdoch Community Hospice | GP referral. Silver Chain: 1300 650 803 |
| Tasmania | Whittle Ward (Launceston), Philip Oakden Unit (Hobart), North West Palliative Care | GP referral. Palliative Care Tasmania: (03) 6231 2828 |
What's Actually Available at Home
More than most families realise. Almost everything a hospital can do for symptom management can be replicated at home.
Symptom Management
Pain, nausea, breathlessness, anxiety, restlessness, constipation — all manageable at home. Subcutaneous medications via syringe driver provide continuous symptom relief. Breakthrough medication available for crisis episodes. The palliative care nurse adjusts doses as needed.
Equipment (Mostly Free)
Hospital bed (adjustable height and position), wheelchair, commode, shower chair, oxygen concentrator, syringe driver (continuous medication pump), pressure-relieving mattress. Most equipment is provided free through Home Care Packages (HCP) or state palliative care programs.
Medications
Palliative care pharmacists ensure medications are available and affordable. PBS (Pharmaceutical Benefits Scheme) subsidises most palliative medications. Crisis medication kits are pre-prescribed and kept in the fridge — ready for after-hours use. This prevents unnecessary ambulance calls and hospital admissions.
After-Hours Support
Most palliative care teams have a 24/7 phone line for carers. This is critical — crises don't happen during business hours. The after-hours nurse can advise on medication, send a nurse visit, or arrange hospital admission if needed. You are never truly alone.
Personal Care
Showering assistance, toileting, repositioning in bed, mouth care, skin care — funded through Home Care Packages or palliative care programs. Community nurses can visit daily or twice daily in the final days. Night nursing is available in some states for the very end.
Respite for Carers
Carers break down without breaks. Respite options include: volunteer sitting services (2-4 hours), in-home respite workers (full day/overnight), respite beds in hospice or aged care (1-2 weeks). Funded through Carer Gateway (1800 422 737) or My Aged Care.
Advance Care Planning
40% of elderly Australians lose capacity to make their own medical decisions before death. An Advance Care Directive (ACD) ensures their wishes are followed when they can't speak for themselves.
What an ACD Covers
- ● Values and beliefs about quality of life
- ● Acceptable and unacceptable medical treatments
- ● Resuscitation preferences (CPR, ventilation)
- ● Preferred place of death (home, hospice, hospital)
- ● Organ and tissue donation wishes
- ● Appointment of medical decision-maker
- ● Cultural, spiritual, or religious requirements
- ● Preferences for comfort care in final days
How to Create One
- ● Step 1: Download your state's ACD form (see table below)
- ● Step 2: Have the conversation with your parent, GP, and family
- ● Step 3: Complete the form — your parent must have capacity when signing
- ● Step 4: Witnesses required (varies by state — usually 2 adults)
- ● Step 5: Give copies to GP, hospital, family, and medical decision-maker
- ● Step 6: Upload to My Health Record (national, accessible by all treating doctors)
- ● Step 7: Review annually or after any significant health change
| State | Document Name | Where to Get the Form |
|---|---|---|
| Victoria | Advance Care Directive | advancecareplanning.org.au |
| NSW | Advance Care Directive | health.nsw.gov.au/patients/acp |
| Queensland | Advance Health Directive | health.qld.gov.au/clinical-practice/guidelines-procedures/patient-safety/end-of-life/advance-care-planning |
| South Australia | Advance Care Directive | advancecaredirectives.sa.gov.au |
| Western Australia | Advance Health Directive | health.wa.gov.au/AHD |
| Tasmania | Advance Care Directive | health.tas.gov.au/patients/advance-care-planning |
What Does Palliative Care at Home Cost?
The answer surprises most families: most palliative care at home is fully funded through a combination of Medicare, state government programs, and Home Care Packages.
Fully Funded (Free)
- ● Specialist palliative care team visits
- ● GP home visits (Medicare bulk-billed)
- ● Community nursing (state-funded)
- ● Hospital bed and medical equipment loan
- ● Syringe driver and consumables
- ● Most palliative medications (PBS)
- ● Social worker and counselling
- ● Volunteer services
- ● After-hours telephone support
- ● Bereavement support for families
May Have Some Cost
- ● Private nursing (overnight — $40–80/hour)
- ● Home care package co-contribution (income-tested)
- ● Some complementary therapies (massage, aromatherapy)
- ● Private palliative care physician consultations (gap)
- ● Home modifications (ramps, rails — partially funded)
- ● Oxygen concentrator electricity costs
- ● Transport to hospital for day procedures
- ● Respite care co-contribution (income-tested)
Home Care Packages for Palliative Care
Home Care Packages fund personal care, equipment, and allied health for palliative patients. Level 4 packages ($56,560/year) cover most needs. Fast-tracked assessment is available for palliative patients through My Aged Care — tell them it's urgent/palliative and the usual waiting period is shortened. Call 1800 200 422.
Practical Home Setup
Converting a Room
- ● Choose a ground-floor room close to bathroom
- ● Space for hospital bed, bedside table, and chair for visitors
- ● Access on both sides of bed (for nursing care)
- ● Good natural light and ventilation
- ● Power points for equipment (bed, syringe driver, phone charger)
- ● Personal items — photos, music, familiar objects
- ● TV or radio within view/earshot
- ● Bell or baby monitor for calling help
Essentials to Have Ready
- ● Contact list on the fridge: GP, palliative care nurse (day + after-hours), pharmacist, ambulance, funeral director
- ● Medication folder: Current medication list, crisis medication instructions, ACD copy
- ● Crisis medication kit: Pre-prescribed by GP/palliative physician, stored in fridge, labelled clearly
- ● Continence supplies: Pads, barrier cream, disposable gloves, bin liners
- ● Mouth care kit: Sponge swabs, lip balm, water spray bottle
- ● Comfort items: Extra pillows, light blankets, fan, essential oils
How Daily Calls Help in Palliative Care
Between nurse visits, between family stays, in the quiet hours — a daily call provides continuity and connection.
Wellbeing Between Nurse Visits
Palliative care nurses visit regularly but can't be there every hour. A daily call checks: "How are you feeling today? Is your pain controlled? Did you manage to eat something?" Changes flagged to the care team before the next visit.
Carer Support & Check-ins
Family carers are the hidden patients. They're exhausted, grieving, and rarely ask for help. A daily call to the carer asks: "How are YOU going?" Carer burnout is the #1 reason palliative patients end up back in hospital.
Maintaining Connection
In the final weeks, the world shrinks to one room. Visitors become less frequent. A daily phone call maintains a thread of normalcy — a friendly voice, a conversation about something other than illness. Dignity and personhood matter until the very end.
Bereavement Support After Death
The palliative care team doesn't disappear after the death. Bereavement support is part of the service.
Immediate Steps (First 24 Hours)
- ● Call the palliative care team or GP — they will come to verify the death (not ambulance, unless unexpected)
- ● There is no rush. You can stay with your parent. There is no legal requirement to move quickly.
- ● Call the funeral director — they will collect when you're ready (pre-arranged if possible)
- ● Notify close family and friends — only those who need to know immediately
- ● Secure the home — medications should be returned to pharmacy for safe disposal
Practical Tasks (First Weeks)
Administrative
- ● Register death with Births, Deaths and Marriages
- ● Notify Centrelink (132 300) — within 28 days
- ● Notify Medicare, DVA if applicable
- ● Contact bank(s) with death certificate
- ● Cancel utilities, subscriptions, memberships
- ● Lodge final tax return (next tax year)
Estate
- ● Locate the will (solicitor, safe, home)
- ● Contact executor named in will
- ● Apply for probate if required
- ● Notify superannuation funds
- ● Review life insurance policies
- ● Transfer property title if applicable
Grief Support Services
| Service | Phone | What They Offer |
|---|---|---|
| Australian Centre for Grief and Bereavement | 1800 642 066 | Counselling, support groups, education, referrals |
| GriefLine | 1300 845 745 | 12-hour phone and online support (midday to midnight) |
| Beyond Blue | 1300 22 4636 | Grief-related depression and anxiety support, 24/7 |
| Palliative care team bereavement service | Contact your team | Free follow-up calls, counselling, memorial services |
| Lifeline | 13 11 14 | 24/7 crisis support — if grief feels overwhelming |
| Kids Helpline | 1800 55 1800 | For children and young people grieving a grandparent |
Key Helplines
National Palliative Care Helpline
1800 660 066
Monday – Friday, 9am – 5pm AEST. Information, referrals, and support for patients and families.
Carer Gateway
1800 422 737
Support for family carers. Respite, counselling, peer support, financial assistance. Available 8am – 5pm weekdays.
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