What is hospice care and how does it work in Australia?

Hospice care is a type of palliative care that focuses on comfort, dignity, and quality of life. It's applied in the final months of life, when curative treatment is no longer the goal. It addresses physical, emotional, spiritual, and practical needs.

The word hospice is often misunderstood. You might assume it means treatment has ended, that it only applies to cancer, or that nothing more can be done. None of these are true.

Hospice care is a shift in what care is for. The focus moves away from treating the illness and toward supporting the person and the people around them.

This guide explains what hospice means in Australia and how it differs from palliative care. It also covers where it is provided, how much it costs, and how to arrange it. 

What is hospice care?

Hospice care is a model of care for people approaching the end of life, where the focus shifts away from treating or curing an illness. The aim is to keep the person as comfortable and supported as possible.

In Australia, hospice is best understood as the intensive, end-of-life phase of palliative care, not a separate system. It uses the same palliative care principles applied when someone is in their final months.

Day-to-day hospice care covers:

• Symptom management - Pain relief and management of breathlessness, nausea, fatigue, and delirium.
• Nursing care - Qualified nurses deliver clinical care at home or in an inpatient unit.
• Psychosocial support - Counselling, grief support, and help with practical decisions.
• Spiritual care - Support that respects the person's beliefs, culture, and values.
• Family and carer support - Respite, emotional support, and bereavement care are available after the person dies.
• Advanced care planning - The team helps document the person's wishes and appoint a substitute decision-maker.

Hospice care involves a team of health professionals. They work together to manage symptoms and support the person emotionally and spiritually. 

The team also helps the family through the process. It includes doctors, nurses, social workers, and allied health professionals. It can also include spiritual care workers and trained volunteers.

What is the difference between hospice and palliative care?

Palliative care is the broader approach, and hospice care is a specific part of it. 

Palliative care can begin at any stage of a life-limiting illness, even soon after diagnosis. It can continue for years alongside disease-directed treatment. 

Hospice care applies when the goals of care shift primarily to comfort. Curative or life-prolonging treatment is no longer being pursued.

All hospice care is palliative care, but not all palliative care is hospice care.

Source: healthdirect; NSW Health, 2023; Palliative Care Australia.

Who is hospice care for?

Hospice care is for anyone with a life-limiting illness who is in the final months of life, regardless of age or diagnosis. It's not limited to people with cancer.

Palliative Care Australia (2024), drawing on AIHW data, notes that four in five expected deaths in Australia each year involve a need for palliative care. Those deaths involve illnesses such as cancer, kidney failure, liver failure, heart disease, and dementia.

People with dementia and heart disease are currently among those least likely to get specialist palliative care. This occurs despite both groups having a recognised need.

Hospice care is appropriate for:

• Older Australians in the final months of life
• People with advanced cancer, organ failure, dementia, or neurodegenerative conditions
• Children and young people with life-limiting illnesses 
• People with disabilities who develop progressive, terminal health conditions

Where is hospice care provided in Australia?

Hospice care in Australia is delivered across four main settings, and many people move between them as their needs change. These settings are:

1. At home
2. In a dedicated inpatient hospice unit
3. In a hospital
4. In a residential aged care home

At home

Home-based hospice care involves support workers visiting the person in their own home. This can include community nurses and specialist palliative care teams. This model is well-supported in Australia and is the preferred option for many people. 

Eligible older Australians can look into the Support at Home End-of-Life Pathway. It provides up to $25,000 over 12 weeks to fund in-home aged care services. These include personal care, nursing, and domestic assistance. 

The End-of-Life Pathway is for people with a life expectancy of three months or less who wish to remain at home. This funding adds to state and territory palliative care services. It does not replace them. 

In a dedicated inpatient hospice unit

Inpatient hospice or palliative care units are designed for people who can no longer be safely supported at home. These units focus on comfort rather than a cure, with flexible routines and a homelike environment.

Toowoomba Hospice in Queensland is one example of a dedicated facility. It's a not-for-profit service providing free inpatient palliative care in a homelike setting. There are no room fees, though clients are asked to cover the cost of their own medications and personal items.

In a hospital

Hospital-based palliative care teams provide specialist input for people admitted during acute illnesses.

Some people come in for symptom control and go home once they are stable. Others stay for their final days, particularly when symptoms are complex.

The palliative team works alongside the treating doctors. Their focus stays on comfort, dignity, and support for the family.

In a residential aged care home

Hospice care can be provided in residential aged care, where staff support residents in their final months.

The Aged Care Quality Standards now require providers to recognise and address individuals' needs, goals, and preferences for palliative and end-of-life care. This is expected as part of routine practice.

According to a 2024 study by Humphrey et al., over 90% of people dying in residential aged care could have benefited from a palliative approach. However, studies suggest only a small proportion actually received specialist palliative care. This points to a significant gap between need and access.

How is hospice care accessed and funded in Australia?

You can access hospice care through a referral from your GP, medical specialist, or another health provider. Some community palliative care services accept self-referrals. But most need a clinical referral to assess eligibility and plan support.

Here's how to get started:

1. Talk to your GP or treating specialist and ask for a palliative care referral. This is the usual entry point.
2. Ask which service covers your area - community palliative care teams are organised regionally.
3. If the person is 65+ (or 50+ for Aboriginal and Torres Strait Islander people), ask about the Support at Home End-of-Life Pathway.

Medicare and public funding

In Australia, Medicare and state and territory governments fund most palliative care services. In other words, there is comparatively little or no cost to the patient in public settings. This includes specialist consultations and community nursing.

The Pharmaceutical Benefits Scheme (PBS) also subsidises many palliative medicines.

Between 2015 and 2016 and 2023 and 2024, palliative care hospitalisations in Australia increased by 46% — from 73,600 to 107,500. This reflects both growing demand and greater recognition of palliative care needs.

Support at Home End-of-Life Pathway

The Support at Home program includes a dedicated End-of-Life Pathway. It's for older Australians who wish to remain at home in their final months. 

Around $25,000 in funding is available per participant over a 12-week period. There is flexibility to use this funding across up to 16 weeks.

To be eligible, a person must:

• Be aged 65 or older, or 50 or older for Aboriginal and Torres Strait Islander people.
• Have a life expectancy of three months or less, as estimated by a doctor or a nurse practitioner.
• Have an Australian-modified Karnofsky Performance Status (AKPS) score of 40 or lower.

Clinical supports such as nursing are fully funded by the government under this pathway. Participants contribute to the cost of independence and everyday living services.

From early 2027, a second round of funding will become available for eligible participants. This applies to those who live beyond the initial 12-week period.

NDIS and disability support

If you are an NDIS participant, your disability supports may continue alongside hospice care. This applies to NDIS participants with terminal or progressive conditions.

NDIS services can include help with daily living, allied health therapy, and nursing. These work alongside the clinical care your palliative team provides.

Since April 2024, there has been a faster pathway for people with a terminal illness. Access decisions are made within five business days, and plans are approved within 30 days.

Why is timely hospice care important?

Starting palliative and hospice care earlier makes a measurable difference to one's quality of life.

Research from Victoria looked at adults who died of cancer between 2018 and 2023. Only about a third had received early palliative care. Early palliative care was associated with lower levels of poor-quality end-of-life care. This included:

• Fewer emergency department presentations
• Fewer acute hospital admissions
• Less late chemotherapy
• A greater likelihood of dying outside the hospital

AIHW data, based on 132,000 people aged 65 and over who had predictable deaths from illness in 2021–22, reveal a concerning pattern. Older Australians usually first receive specialist palliative care just 12 days before they die.

Access gaps remain significant. According to Palliative Care Australia, 62% of all people who need palliative care in Australia do not receive specialist palliative care. In some communities, only around 15% of people with a life-limiting illness receive timely palliative care.

The projected demand for palliative care services is rising. From 2023 to 2042, the number of Australians needing palliative care is projected to increase by between 37% and 65%.

Planning ahead helps ensure your preferences are clearly recorded. Discussing those preferences with your GP makes it more likely that care will match your wishes. Exploring your funding options early is also an important part of this process.

FAQ

What is the meaning of being a hospice patient?

Being a hospice patient means receiving care that prioritises your comfort, dignity, and quality of life in the final months. The focus shifts away from continuing treatments aimed at curing your illness.

Your care team manages symptoms and supports your emotional and spiritual wellbeing. Your family and carers are included in the care process, and bereavement support is available to them afterwards.

What is a hospice caregiver?

A hospice caregiver is a member of the multidisciplinary team who supports a person in the final phase of life. The team includes:

• Qualified nurses
• Doctors
• Palliative care specialists
• Social workers
• Spiritual care workers
• Allied health professionals (physiotherapists and occupational therapists)

Family members who provide unpaid care at home are also considered caregivers. They get support from the hospice team, including respite and counselling.

Is hospice care free in Australia?

In the public system and charity-funded services, most palliative and hospice care is free to patients. Private facilities may involve costs covered partly by private health insurance.

Medicare covers most palliative care costs, including specialist consultations and community nursing. Some out-of-pocket costs can arise for GP visits, certain medications, or complementary therapies.

Inpatient hospice units may be public and free, or private with costs covered by private health insurance. 

The Support at Home End-of-Life Pathway is also available. It provides additional government-funded support for people who wish to remain at home.

Can I receive hospice care at home?

You can receive hospice care at home in Australia. Community palliative care nurses and specialist teams visit people at home. They manage symptoms and provide support in the comfort of your own home.

The Support at Home End-of-Life Pathway provides around $25,000 over 12 weeks to fund practical supports. In-home aged care packages also contribute, complementing specialist palliative input. These include personal care, domestic assistance, and nursing care.

Do I need to stop all treatment to receive hospice care?

Hospice care generally begins when curative or life-prolonging treatment is no longer the goal. The focus of care has shifted to comfort. However, some treatments, such as medications that manage symptoms, continue throughout hospice care.

The decision about which treatments to stop and which to continue is made between you, your family, and your medical team. The decision is based on your individual goals and preferences.

Getting the right care at the right time

Hospice care is a shift in what care is for, from treating an illness to supporting the person living with it. In Australia, that care can happen at home, in a hospital, in aged care, or in a hospice unit.

If you think it might be time, the first step is a conversation. Talk to your GP or specialist and ask what hospice care would look like for you.

Sensible Care provides palliative care and community nursing in the home across VIC, NSW, QLD, WA, SA, and TAS. Our nurses, physiotherapists, occupational therapists, and dietitians work together as one team.

We accept Home Care Packages, Support at Home, NDIS, TAC, DVA, and other funding types. We handle the paperwork, including provider transfers, so you don't have to.

If you would like to talk it through, call us for a free consultation. There is no obligation and no cost for the conversation.