What is end of life care?

End of life care is the care a person receives in the final part of their life, when they are approaching death. Its goal is comfort and dignity: managing pain and other symptoms, supporting the person emotionally and spiritually, respecting their wishes about how and where they are cared for, and supporting the people close to them. It is not about hastening death, and it is not about giving up. It is a shift in what the care is trying to achieve, from cure and prolonging life to comfort and quality of the time remaining.

The phrase is often used to describe the last days or weeks, though it is sometimes applied to the final year. There is no precise boundary, and in practice the shift is usually gradual rather than a single moment.

How it relates to palliative care

These terms overlap and are often used interchangeably, which causes real confusion.

Palliative care is the broader concept: care focused on comfort and quality of life for anyone with a serious, life-limiting illness. It can start early, at diagnosis, and can run alongside treatment intended to control or cure the illness. Some people receive palliative care for years.

End of life care is the part of that which happens when death is close. All end of life care is palliative in nature, but not all palliative care is end of life care.

The distinction matters because many families delay palliative care believing it means the end has arrived. Our guides to palliative care and to hospice care versus palliative care go into how those services work.

What it involves

Good end of life care usually covers four areas at once.

Physical comfort. Managing pain, breathlessness, nausea, agitation and other symptoms. Medications are often adjusted frequently, and unnecessary ones are usually stopped. Care shifts to things like mouth care, positioning and skin care, small measures that matter a great deal for comfort.

Emotional and psychological support. For the person, this can involve fear, sadness, and questions about meaning. Counselling, social work and simply having someone willing to talk honestly all help. Family members need this support too.

Spiritual or cultural support. Access to a chaplain, elder, or someone from the person's own faith or cultural background, and space for the practices that matter to them. For Aboriginal and Torres Strait Islander people this may include returning to Country, and it is a legitimate thing to ask a service to help arrange.

Practical and family support. Explaining what to expect, helping with decisions, and supporting the people providing care day to day, including after the death through bereavement support.

Where it happens

End of life care can be provided in several settings, and the choice matters to many people.

At home, supported by a GP, community palliative care nurses and personal carers, with equipment such as a hospital bed brought in. Many people say they would prefer this. It can work well, but it depends on adequate support and on someone being available; it is worth being honest about what is sustainable rather than committing and struggling.

In a residential aged care home, where staff provide the care, usually with support from a visiting palliative care service. For someone already living there, this avoids a distressing move.

In hospital, which may be necessary when symptoms are difficult to control.

In a hospice or a specialist palliative care unit, designed specifically for this care.

People often move between settings, and a preference expressed earlier can be revisited. Nothing is locked in.

Planning ahead

The single most useful thing anyone can do is record their wishes while they are well enough to express them clearly.

An advance care directive sets out what treatment a person would or would not want, and appointing a substitute decision-maker means someone can speak for them if they cannot speak for themselves. The forms and legal names differ between states and territories, so use your own jurisdiction's documents.

Equally important, and often skipped, is simply telling the family. A document in a drawer that nobody has discussed leads to conflict at the worst possible time. Families who have had the conversation are far less likely to disagree later, and far more likely to feel at peace with the decisions made.

For families and carers

Caring for someone at the end of their life is demanding in every sense. A few things are worth knowing.

Ask the care team what to expect. Most people find the changes in the final days less frightening when someone has explained them in advance, including changes in breathing, reduced eating and drinking, and increased sleeping. Not eating in the last stage is a normal part of dying rather than something to be fixed.

Accept practical help, and ask about respite care if you are providing care at home. Carer Gateway on 1800 422 737 offers counselling and practical support, and bereavement support is available afterwards; it is a normal part of the service, not an imposition.

To find care services near you, browse residential aged care homes or home care providers on Our Mate. To arrange support, contact My Aged Care on 1800 200 422.

Frequently asked questions

What is the difference between end of life care and palliative care?

Palliative care is the broader approach to comfort and quality of life for anyone with a serious life-limiting illness, and it can begin early and run alongside active treatment. End of life care is the part that applies when death is close, usually the final days or weeks. All end of life care is palliative, but palliative care is not only for the end of life.

Where can someone receive end of life care in Australia?

At home with support from a GP and community palliative care services, in a residential aged care home, in hospital, or in a hospice or specialist palliative care unit. People sometimes move between settings as needs change, and a stated preference can be revisited at any time.

Does end of life care mean giving up on treatment?

No. It means the goal of care changes from cure to comfort and quality of life. Treatments that relieve symptoms continue and are often increased; treatments that no longer provide benefit are stopped. The person still receives active care, directed at a different purpose.

How do I make my end of life wishes known?

Complete an advance care directive for your state or territory, and appoint a substitute decision-maker who can speak for you if you cannot. Just as importantly, discuss your wishes with your family and your doctor, so the people who will be involved already understand what you want.

What support is available for families?

Palliative care services support the family as well as the patient, including help understanding what to expect, counselling, and bereavement support after the death. Carers can also access respite and counselling through Carer Gateway on 1800 422 737.