What is a terminal illness?

A terminal or life-limiting illness is one that can't be cured. This means that your doctor thinks that your condition will eventually lead to death.

Anyone of any age and background can get a terminal illness. But many life-limiting conditions are more common in older people.

The prognosis (expected course) of a terminal illness will be different for everyone. Some people may live for weeks, months or even years with their illness. If you would like information about your own prognosis, ask your doctor or specialist.

What can I do if I've been diagnosed with a terminal illness?

Learning that you have a terminal illness can be shocking and upsetting. You may have many different emotions including:

• fear
• denial
• helplessness
• anxiety
• feeling overwhelmed

These emotions may change from day to day or even throughout the day.

Everyone copes with these feelings differently. You may find it helpful to talk about your feelings with a family member or friend.

You may also choose professional help from your doctor, nurse or mental healthcare professional.

You may have lots of questions about your condition and what to expect. It can be helpful to write down a list of questions to take to your next doctor’s appointment.

You may find it helpful to learn more about your illness and what to expect. This information will also help you make important decisions about your care.

The healthdirect Question Builder tool can help you create a list of questions to ask your doctor.

ASK YOUR DOCTOR — Preparing for an appointment? Use the Question Builder for general tips on what to ask your GP or specialist.

When should I tell family or friends about my diagnosis?

There is no right or wrong time to tell family and friends about a terminal diagnosis. It is your decision who to tell and when.

Talking about a terminal illness with loved ones can be difficult. Here are some tips for planning the conversation:

• Choose a quiet time and place where you won’t be disturbed.
• Plan what you’d like to say and think about the words you might use.
• Think about answers to questions your loved one might ask but only share information if you feel comfortable.
• Prepare yourself for your loved one’s reaction. They may feel uncomfortable, upset or be in denial when they hear that you have a life-limiting illness.

Will it help to talk about my diagnosis?

You may find it helpful to talk about your illness with your loved ones.

Talking about what you are thinking and feeling can help your friends and family understand you better. It can also help them give you the practical, emotional or spiritual support you need.

There may be times you feel you’d like to talk to family and friends. Other times you may want to keep your thoughts and feelings to yourself. This is your decision and should be respected.

You may also find talking to your doctor or getting counselling from a mental health professional is helpful.

Use the healthdirect Service finder tool to find a mental health professional near you. Talk to your doctor about getting a referral.

FIND A HEALTH SERVICE — The Service Finder can help you find doctors, pharmacies, hospitals and other health services.

What care options are available?

There are many things to think about when you’ve been diagnosed with a terminal illness.

It can help to take things one step at a time and get support from your loved ones. Making decisions about your future health care and other plans can also help you have a sense of control.

Advance care planning

An advance care plan can help guide your healthcare if you are ever unable to make your own medical decisions.

Part of advance care planning may include choosing someone to make medical decisions on your behalf.

Advance care planning involves recording the preferences and values you wish to guide decisions about your healthcare.

Some advance care planning documents, such as advance care directives, are legally binding. The process of creating an advance care plan varies depending on where you live in Australia.

Contact the National Advance Care Planning Support Service for more information and advice about advance care planning.

Dying to Talk has many tools to help you talk about advance care planning with your loved ones.

Palliative care

Palliative care, or supportive care, helps you live as fully and comfortably as possible with a terminal illness. The goal of palliative care is to help you keep your quality of life while preparing to die well.

Palliative care services can help with:

• pain management
• emotional and spiritual support for you and your loved ones
• home help and financial support
• equipment hire for home care

End-of-life care

End-of-life care may be given in different settings depending on your circumstances. You might like to think about where you want to be cared for at the end of your life.

Possible choices might include:

• your own home
• a palliative care unit (hospice)
• a hospital
• a residential aged care facility

There are advantages and disadvantages to each option. The choice of where to be cared for at the end of your life depends on each individual.

You might also change your mind as your illness progresses. Your palliative care team can give you information and advice about which choices are practical in your situation.

Who will be involved in my care?

You will likely have different professionals involved in your care, in addition to any loved ones providing support.

Palliative care services are usually given by a team of health services including:

• doctors
• nurses
• social workers
• occupational therapists
• physiotherapists
• spiritual care providers
• mental health professionals

As your illness progresses, you may need more help with daily tasks and personal care.

You might get help from friends or family members or professional carers. If your carers need a break, you may be cared for in a respite facility or hospice.

Information for carers

Caring for someone with a terminal illness can be very rewarding but may also be difficult and overwhelming. It’s important to also look after your own health and wellbeing.

The Australian Government’s Carer Gateway has online and telephone support services and support groups for carers.

Some carers may also be eligible for Centrelink payments.

See the Services Australia website for more information and to check your eligibility.

Where can I find support?

Dealing with a life-limiting illness can be very overwhelming, and you have many things to think about.

Your doctor and palliative care team can give you and your family or friends support and advice. This includes emotional support and referral to mental health support services if needed.

Practically, you may need help in different areas such as:

• financial planning
• legal planning such as making a will or an advance care directive
• daily chores such as shopping and cooking
• transport to and from appointments
• personal care such as showering and meals
• funeral planning

You may find it helpful to think about which family and friends might be able to help you.

Websites such as Gather my Crew can be helpful in coordinating offers of help.

Resources and support

• Palliative Care Australia supports people with life-limiting illnesses and their carers.
• Lifeline offers 24-hour support to people in Australia in emotional distress.
• Services Australia can help with practical information and support.
• CarerHelp has resources if you care for someone with a life-limiting illness, including for:
  • Aboriginal and/or Torres Strait Islander carers
  • people caring in the country
  • specific communities with information in other languages

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with you 24 hours a day, 7 days a week.

Other languages

Visit the CareSearch website for links to palliative care and end-of-life information in different community languages.

Health Translations has information in languages other than English about death of a loved one. This includes what you can organise before you die, payments, information and help for grieving family members.