End-of-Life Planning: Key Points

  • Research consistently shows that most Australians want to die at home, yet most do not document this wish in a way that ensures it is followed.
  • The Support at Home End-of-Life Pathway, introduced November 2025, provides around $25,000 over 12 weeks for eligible participants who want to remain at home in the final months of life.
  • Advance care planning documents, completed while a person still has capacity, give families and care teams clear direction and reduce distress during an already difficult time.
  • The conversation does not need to happen all at once. Starting early, when the person is relatively well, allows for an ongoing dialogue rather than a crisis-driven decision.
  • End-of-life conversations done well are a gift, not a burden. They give the person agency over their own death and relieve family members of having to guess what their loved one would have wanted.

Why These Conversations Matter

Almost 90% of Australians say it is important to discuss their wishes for care at the end of life. Yet more than half have never done so, and fewer still have recorded those wishes in a document that their care team and family can act on.

The gap between intention and action is understandable. These conversations touch on loss, fear, and the limits of medicine. Families often avoid them out of a worry that raising the topic will upset their loved one, or signal that they have given up.

In practice, the opposite is true. People who have documented their end-of-life wishes consistently report feeling more in control and less anxious about what lies ahead. Their families report less conflict, less guilt, and a clearer sense that they did the right thing.

For families with a member receiving home care, these conversations are particularly relevant. Home care services can, with the right support and planning, extend a person’s ability to remain at home until the very end of life, and that is what most people want.

What End-of-Life Planning Covers

End-of-life planning is broader than writing a will or choosing a funeral home. For home care families, it covers:

  • Medical wishes: what treatments to accept or decline, resuscitation preferences, and where the person wants to be when they die.
  • Advance care directives: legal documents recording those wishes that are binding on health professionals.
  • Substitute decision makers: appointing the right person to make decisions if the person cannot.
  • Palliative care planning: coordinating care supports that prioritise comfort and quality of life.
  • The Support at Home End-of-Life Pathway: understanding and accessing the dedicated funding available in the final months.
  • Practical and family planning: finances, living arrangements, and what family members need to do when the time comes.

Starting the Conversation

Choosing the right moment

There is no perfect moment for this conversation, but there are better and worse conditions. Better conditions include:

  • A period of relative stability, when the person is not in acute distress or medical crisis.
  • A quiet setting at home, not a hospital waiting room or a busy family gathering.
  • When there is enough time to have a real conversation, not a quick check-in between appointments.
  • Following a natural opening, such as a news story, a friend’s death, or a medical appointment that raised questions about the future.

Avoid waiting until a crisis forces the conversation. Planning done in a hospital emergency department, or in the days following a major health event, is planning done under pressure with fewer options.

Opening the conversation

Many families find it hard to know how to begin. Some approaches that work:

  • “I want to make sure we know what you would want, so we can make sure it happens that way.”
  • “Your GP mentioned it might be a good time to think about some plans. Can we talk about what matters most to you?”
  • “I was reading about something called an advance care plan. I thought it might be worth looking at together.”
  • “If things changed and you couldn’t tell us yourself, how would you want us to know what to do?”

The first conversation does not need to cover everything. It is enough to open the door and establish that this is something the family can talk about together.

What to listen for

When having this conversation, listen as much as you speak. The person’s values and priorities matter more than any particular decision. Questions worth exploring:

  • Where do you want to be cared for at the end of your life?
  • What does a good death mean to you?
  • Are there medical interventions you would want, or actively not want?
  • Who do you trust to make decisions for you if you cannot?
  • Is there anything you want to finish, say, or do before you die?
  • What do you want your family to know?

Write down what is said. Memories of these conversations can be surprisingly unclear later, and having a written record provides reassurance that you are following the person’s actual wishes.

Advance Care Planning: The Documents You Need

Advance care planning produces documents that give legal and practical effect to a person’s wishes. The specific forms and legal requirements vary by state and territory, but the core documents are consistent across Australia.

Advance care directive

Also called an advance health directive, advance care plan, or medical treatment decision maker form (name varies by state), this document records the person’s wishes for specific medical treatments and circumstances. It is legally binding on treating health professionals when properly completed.

Key elements to include:

  • Preferred place of care and death (home, hospital, hospice, residential facility).
  • Specific medical treatments to accept or refuse (for example, cardiopulmonary resuscitation, artificial ventilation, artificial nutrition and hydration).
  • Wishes in specific scenarios (for example, “if I have a terminal illness with no reasonable chance of recovery”).
  • General values and goals that should guide decision-making.

Your GP can help complete this document. The Advance Care Planning Australia website provides state-specific forms and guides.

Enduring power of attorney (medical/personal)

This document appoints a specific person to make medical and personal decisions on behalf of the person if they lose capacity. The person appointed should be someone who:

  • Knows the person’s values and wishes well.
  • Can advocate firmly for those wishes in a medical setting.
  • Is willing to make difficult decisions under pressure.
  • Is accessible when needed (proximity and availability matter).

An enduring power of attorney must be granted while the person still has legal capacity to do so. Once capacity is lost, it cannot be granted.

Do Not Resuscitate (DNR) or Allow Natural Death orders

If the person does not want CPR attempted, this preference must be documented in a way that emergency services and hospital staff will see and follow. A general directive in a folder at home is not sufficient if paramedics are called. Discuss with the GP how to document this in the medical record and what forms are used in your state for an out-of-hospital DNR.

The Support at Home End-of-Life Pathway

One of the most significant changes introduced with the Support at Home program on 1 November 2025 is the End-of-Life Pathway. This is a dedicated, separately funded care pathway for older Australians in the final phase of life.

Who is eligible

To access the End-of-Life Pathway, a person must:

  • Be currently receiving Support at Home services.
  • Receive a prognosis from a medical or nurse practitioner of three months or less to live.
  • Have an Australian-modified Karnofsky Performance Status (AKPS) score of 40 or below, indicating significant decline in physical function.
  • Wish to remain at home (not enter a residential aged care facility or hospital as their preferred place of care).

What it provides

The pathway provides approximately $25,000 in additional funding over a 12-week period, with up to 16 weeks of access if funds remain. This is separate from and in addition to the person’s standard Support at Home classification budget.

Services that can be accessed through the pathway include:

  • Increased personal care and nursing hours.
  • Palliative care allied health services.
  • Equipment and assistive technology to support comfort at home.
  • Grief and counselling support for the person and their family.
  • Respite for family carers.
  • Coordination with community palliative care teams.

Only one episode of the End-of-Life Pathway is permitted per person. If the person stabilises beyond the initial prognosis, they return to their standard Support at Home classification. If funding is exhausted before the end of life, a Support Plan Review can be requested to move back to an ongoing classification.

How to access it

Speak with the person’s GP or nurse practitioner and their current Support at Home provider. The GP completes the prognosis documentation, and the provider works with My Aged Care to activate the pathway. The My Aged Care website has specific forms for the pathway available since 1 November 2025.

Planning for Death at Home: What Families Need to Arrange

If the person’s wish is to die at home, careful practical planning is needed. A death at home is a meaningful and achievable goal for many people, but it requires preparation.

Medical support in the home

Connect the person’s GP and, where appropriate, a community palliative care service. Community palliative care teams (often coordinated through local health networks or hospitals) can provide:

  • Regular clinical home visits.
  • After-hours nursing support.
  • Symptom management advice and medication review.
  • Guidance for family carers on what to expect and what to do.

Ask the GP for a referral to the local community palliative care service if one is not already involved.

Medications and comfort supplies

Palliative care often involves managing pain, breathlessness, and anxiety. Discuss with the GP or palliative care nurse what medications should be kept at home and how to administer them. In some circumstances, anticipatory prescribing means medications are already in the home before they are urgently needed.

Equipment and home modifications

Depending on the person’s mobility and comfort needs, the home may need to be modified or equipped. Common items include a hospital-style adjustable bed, pressure-relieving mattress, commode, and other aids. These can often be funded through the Support at Home budget or the End-of-Life Pathway.

Family carer roles and shifts

Caring for someone at home at end of life is physically and emotionally demanding. If family members are providing significant care, plan:

  • Who is responsible for which tasks.
  • How overnight care will be managed.
  • What breaks and respite are available and how to access them.
  • Who to call at different times of day or night with questions or concerns.

Burnout in family carers before the person dies is a real risk. The Carer Gateway on 1800 422 737 provides counselling and practical support for family carers in this situation.

What to do when death occurs

If death occurs at home, family members are often uncertain about what to do. Before the moment arrives:

  • Confirm with the GP or palliative care nurse what the procedure is when death occurs at home.
  • Know whether to call the GP first or 000. In a planned home death, calling 000 may not be appropriate and can result in an unwanted response.
  • Have the GP’s after-hours number and the palliative care nurse’s contact number easily accessible.
  • Know where important documents are kept, including the advance care directive, death certificate arrangements, and the person’s wishes for their body and funeral.

Supporting Yourself and Your Family

End-of-life caregiving takes a toll that is not always acknowledged. Anticipatory grief, the grief that begins before a person dies, is real and valid. Family members may grieve differently from one another, and this can create tension.

Support available to families includes:

  • Grief counselling through palliative care services and community organisations.
  • Carer support programs through the Carer Gateway.
  • Social workers attached to GP practices or palliative care services.
  • Pastoral care through hospitals, hospices, or community organisations for those with religious or spiritual needs.

After the death, bereavement support is available through many of the same channels. GriefLine operates a national helpline at 1300 845 745.

Key External Resources

Carevo connects families with experienced home care and palliative support providers across Australia. Find a provider who can help your loved one remain at home comfortably and with dignity through every stage of their care journey.

Frequently Asked Questions

What is advance care planning? Advance care planning is the process of thinking through and documenting your wishes for future health care while you still have the capacity to do so. It includes formal documents such as advance care directives and enduring powers of attorney.

What is the Support at Home End-of-Life Pathway? A dedicated funding program introduced November 2025, providing around $25,000 over 12 weeks for eligible participants with a life expectancy of three months or less who wish to remain at home. Eligibility requires a GP or nurse practitioner prognosis and a functional assessment.

Is an advance care directive legally binding? Yes, when properly completed according to the requirements of your state or territory. A valid advance care directive must be followed by health providers. The Advance Care Planning Australia website has state-specific forms and guidance.

What if the person can no longer participate in planning? Their appointed substitute decision maker (named in an enduring power of attorney or formal guardianship order) steps in. Where no formal appointment exists, next of kin are consulted in a statutory order defined by state law.

How do I get palliative care support at home? Ask the person’s GP for a referral to the local community palliative care service. The Support at Home End-of-Life Pathway can fund additional services. My Aged Care can also help coordinate access to palliative supports.

What support is available for family carers? The Carer Gateway (1800 422 737) provides free counselling, practical support, and respite planning. Palliative care services also offer family support. GriefLine (1300 845 745) provides bereavement support after the death.