What support is needed for someone to die at home?

Someone dying at home usually needs a planned mix of medical care, nursing support, practical help, equipment, medicines, after-hours advice and family or friend support.

Someone dying at home usually needs a planned mix of medical care, nursing support, practical help, equipment, medicines, after-hours advice and family or friend support. The exact support depends on the illness, symptoms, home setup, local services and what the person wants.

General information: This page gives general information for people in Australia. It cannot tell you exactly what is happening in one person's situation. If you have concerns about a symptom, medicine, treatment decision or change in someone's condition, contact their doctor, palliative care team, nurse or other treating health professional.

Start with the treating team

Ask the person's GP, specialist or palliative care team to help make a home care plan. The plan should be written down or kept in one place so carers can find it quickly.

It should cover:

CareSearch suggests keeping information in one folder, including medicine lists, care notes and contact details. This is practical advice. In a stressful moment, people should not have to search through texts, emails and drawers.

Medical and nursing support

Home palliative care may include the person's GP, community nurses, specialist palliative care nurses and a palliative care doctor. Some people also need a pharmacist, occupational therapist, physiotherapist, social worker, counsellor or spiritual care worker.

Ask who is responsible for:

In some areas, specialist palliative care teams can visit at home. In other places, support may be more limited or may come through the GP, local hospital, community health service or aged care provider.

Medicines and symptom plans

People being cared for at home often need a clear symptom plan. This may cover pain, breathlessness, nausea, constipation, anxiety, agitation, noisy breathing, fever or seizures.

Do not change prescribed doses unless the person's doctor or nurse has told you to. If medicines are kept at home for symptoms that may happen later, ask the team to explain:

If swallowing becomes hard, the team may change medicines to liquids, patches, injections or a syringe driver. A syringe driver is a small pump that gives medicine slowly under the skin.

Equipment and home setup

The home may need changes to make care safer. This can include moving a bed to a room with easier access, clearing space around the bed, putting a chair nearby, using night lights, removing trip hazards and setting up a bedside table.

Equipment may include:

Ask an occupational therapist, physiotherapist or nurse what is needed. Lifting and moving a weak person can injure both the person and the carer if no one has shown you how to do it safely.

Care from family, friends and paid services

Home care usually works best when one person is not trying to do everything. Carers may need help with shopping, cleaning, meals, laundry, transport, sitting with the person, overnight care, phone calls and paperwork.

Make a roster if people have offered help. Give them specific tasks. "Can you sit here from 2 pm to 5 pm on Tuesday?" is easier to answer than "Can you help sometime?"

If the person is older, My Aged Care and the Support at Home program may be relevant. The Australian Government's End-of-Life Pathway is for eligible older people who have 3 months or less to live and want to remain at home. It complements state and territory palliative care services, rather than replacing them.

Support for the carer

Carers need care too. A home death plan should include breaks, back-up carers and someone the main carer can call if they are not coping.

Carer Gateway is an Australian Government service that can connect carers with counselling, peer support, coaching, tailored support packages, planned respite and emergency respite. Centrelink payments may also be available, depending on the carer's situation and the needs of the person they care for.

When to get help now

Call the palliative care team, GP, community nurse or after-hours number if symptoms are new, worsening or not controlled by the plan you have been given.

Call 000 for a serious and urgent emergency, such as severe uncontrolled bleeding, a major injury, danger in the home, fire, or an unexpected collapse when there is no expected death plan.

If the person is expected to die at home, ask the team in advance what to do in the final hours and after death. This can prevent an unwanted emergency response.

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Sources and further information