What is a terminal illness?

A medical condition that cannot be cured is known as a terminal or life-limiting illness. If you have been told your illness is terminal, this means that your doctor thinks that this condition will eventually lead to death. Anyone of any age and background might get a terminal illness. But many life-limiting conditions are more common in older people.

The expected course (prognosis) 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 GP or specialist doctor.

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 experience 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 discuss your feelings with a family member or friend. You may also choose professional help from your doctor or a nurse on your health team.

Once you have absorbed the news, you may have lots of questions about your condition, any treatments available and what to expect. It can be helpful to write down a list of questions to bring with you to your next doctor’s appointment.

Many people find it empowering to learn more about their illness and what to expect in the coming weeks or months. 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.

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.

Discussing 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?

Many people find it very helpful to discuss their diagnosis and any concerns or fears with their 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.

It’s your choice whether to talk about your diagnosis and who you want to share this with. Your feelings may also change over time. There may be times you feel you’d like to open up 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 GP or getting counselling from a mental health professional is helpful. In some cases, medicines can help.

Use the healthdirect Service finder tool to locate a mental health professional near you, such as a counsellor or psychologist. 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 seek support from loved ones. Making decisions about your current and future health care and other plans can also help you have a sense of control.

Advance care planning

Advance care planning involves recording the preferences and values you wish to guide decisions about your healthcare. An advance care plan can help guide your loved ones and medical team if you are ever unable to make your own medical decisions. Part of advance care planning may include appointing a trusted decision maker to make medical decisions on your behalf, if you are unable to do so.

Some advance care planning documents, such as advance care directives, are legally binding. The process of creating an advance care directive varies from state to state.

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 start a discussion about advance care planning with your loved ones, and other helpful resources.

Palliative care

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

Palliative care services can include:

• pain management services
• emotional and/or spiritual support for you and your loved ones
• referral to home help and financial support
• access to resources such as 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 life.

Possible options might include:

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

The choice of where to be cared for at the end of life depends on the person. There are advantages and disadvantages to each option. You might also change your mind as your illness progresses. Your palliative care team can give you information and advice about which options 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 provided 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 receive assistance from friends or family members or professional carers, or a combination. If your care becomes complex, or your carers need a break, you may be cared for in a respite facility or hospice.

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 provides 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 you loved ones support and advice in many areas. This includes emotional support and referral to mental health support services if needed.

Practically, you may need assistance 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

You may find it helpful to think about which family and friends might be available to assist and support you.

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

Resources and support

• Palliative Care Australia provides information and support about palliative care to people with life-limiting illnesses and their carers.
• CarerHelp has resources if you care for someone with a life-limiting illness, including support for Aboriginal and/or Torres Strait Islander carers.
• Lifeline provides 24-hour support to people in Australia experiencing emotional distress.

Other languages

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