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You will feel a range of emotions when you are told you have a terminal illness or when you are waiting to find out about a diagnosis.
Finding information can help you and the people who matter most to you to understand what is happening and to be prepared for what happens.
A medical illness that cannot be cured, or adequately treated, and is expected to result in death is called a terminal illness. Your health professional will explain to you whether your illness is terminal or not.
Some diseases may progress and become terminal. Life-limiting illnesses can include cancer, motor neurone disease, end-stage kidney disease and dementia. A diagnosis is normally given after tests and maybe some forms of treatment. The course of the illness can vary for different people.
If you are not sure what is happening, make sure you ask questions and, if possible, take someone with you to your appointments.
You can ask them to explain what will happen as the disease progresses and what support is available. Having a terminal illness does not mean that treatment and care ends.
Palliative care can be accessed from the time of diagnosis. Accessing palliative care early gives people the ability to control their symptoms more effectively, build a therapeutic relationship with their healthcare team, and in some cases, has been proven to prolong life.
The Question Builder helps you prepare for your medical appointment by creating a list of questions to ask your doctor.
Hearing that your illness is terminal can be very frightening and upsetting. Your health professional will explain what your diagnosis means. They may talk to you about the types of care available and the next steps to help you stay as well as possible. You may find it difficult to absorb all the information being provided. It is alright to ask questions or stop to understand what is being said.
Your GP or health professional may discuss palliative care with you. From the diagnosis of a life-limiting illness, palliative care is available to people of all ages. If you have been told that you have a serious illness that cannot be cured, you can ask if palliative care could help you.
You may find it hard to tell your family and friends about your diagnosis. You may worry about how they will react or that you will get upset talking about it. It’s ok to say that you find it difficult to talk about the diagnosis and what it means. Take your time. You don’t have to tell people right away and you don’t have to tell everyone all at once.
Listen to people talk about how they reacted to the news that their life would be much shorter than expected.
From the time of diagnosis, palliative care helps people of all ages with a life-limiting illness live their life fully and comfortably.
A life-limiting illness is one that is likely to cause death in the foreseeable future. This includes:
Palliative care addresses physical symptoms as well as emotional, social, and spiritual concerns.
The primary goals of palliative care are to control symptoms, maximise function, maintain quality of life and provide comfort.
Family, friends and carers can also receive practical and emotional support in their caring role and in grief and bereavement.
Palliative care is not just for the last days or weeks of life. It can be provided at any time in your illness depending on your needs.
Palliative care can be provided alongside active treatment for your illness and focuses on improving symptom control, quality of life, and family satisfaction.
Learn more: What is palliative care - Palliative Care Connect
You can read and download this sheet to share with your family. It explains what palliative care is and how it can help.
All health professionals have a role to play in palliative care.
Care for people with a life-limiting illness is often provided by many different healthcare professionals and can be provided in your home, in a hospital or in aged care.
In a hospital setting it is provided by doctors, palliative specialists, nurses and allied health professionals.
In the community the palliative care team might include your GP, community and aged care nurses, visiting allied health professionals, care workers and support workers. Family, friends, and neighbours may also provide care and support.
Specialist palliative care teams work in a consultative role with general practitioners and other health care providers when patient’s needs cannot be met exclusively by primary care teams.
A person may be eligible for referral to specialist palliative care services for assessment if:
Referrals can be made by medical practitioners, other health professionals and the individual or family members/carer.
Referrals for people in the community (that is, home or residential care), or people requiring an outpatient clinic appointment, can be made by faxing a completed Palliative Care Referral form (PDF 584KB) to your local palliative care service.
This webpage outlines palliative care services and eligibility processes for South Australia
If you are receiving palliative care and dealing with a terminal illness, you may also be worried about your family and friends. There are ways that you can help you make the most of your time together and prepare for the future. Talking about what is happening is important to make sure everyone understands.
Many people continue to work and to undertake activities that are important to them while receiving palliative care. You can talk with your doctor about what is possible and the timing of special activities such as a visit to family who may be living interstate or overseas.
Sorting out practical matters such as wills, power of attorney, and financial matters such as mortgages, superannuation and life insurance can all help your family. Discuss what matters to you and what your preferences are for end-of-life care. Make or update an advance care planning document. It can be helpful to appoint a substitute decision maker to make decisions for you about your care if you are no longer able to make your own decisions.
Make time to spend with the people who are important to you.
These webpages provide an overview of some of the issues that you and your family are likely to confront and offer practical suggestions and resources.
While you are sick, there are likely to be some formal supports such as community nurses and careworkers who will be coming into your home to help. It is important to encourage your partner, family, and carers to continue to meet with their friends and take some time out from caring. Social networks are important not only to support them while they are caring, but to also support your family after you are gone.
Sort out as many things as you can manage relating to finances, power of attorney, and wills while you are well to reduce the burden on them afterwards. Planning for your funeral can also help your family to be prepared for the reality of your death and keep them connected to family, friends, and neighbours.
There are also payments and services that your family may be eligible for during bereavement. Services Australia has information on What help there is when an adult dies.
Contact your local council. Many Councils have support groups or sponsor Compassionate Communities which can be a comfort to your family.
This webpage describes some of the common concerns faced by family and carers. It includes a section on Life after caring.
If you come from a culturally, ethnically, and linguistically diverse community or if you have specific life experiences and beliefs, the health system can be difficult to navigate and the right support hard to find. This can be particularly hard when dealing with serious illness and end of life.
The Australian Charter of Healthcare Rights clearly states that you have a right to be at the centre of your care and to have your voice heard. If care is not inclusive you may feel unwelcome or unsupported.
There are a range of palliative care resources specific to different population groups. They can help you identify appropriate services and organisations and provide information in your language. For example, CarerHelp has a range of palliative care information resources in nine different languages. Remember you can bring a friend or a community advisor to support you in meetings with your health care team. You can also ask to have an interpreter available.
The MyAgedCare website has a useful page called Accessible for all. It includes links to Translating and Interpreting services including services for Aboriginal and Torres Strait Islander people. It also has information on the National Relay Service which supports people who have a hearing or speech impairment.
Sometimes accessing palliative care can be more difficult for people from diverse backgrounds. These webpages describe what is available and how to access services.
What you are going through is difficult. You may experience many emotions including uncertainty, worry, anxiety, loneliness, anger, and sorrow. This is natural and can be eased by talking with your family and friends about your fears and your worries. Sometimes your feelings may be more distressing, and you may find it helpful to talk to your doctor or the palliative care nurse. They may also suggest the support of someone experienced in emotional distress.
Remember, if you can't cope with your emotions, you should seek help. Beyond Blue has online peer support forums and has 24/7 brief counselling. Grief line offers free grief supports.
Webpages talking about feelings and emotions and how to manage.
Call 1-800-725-548 (PALLI8), Monday to Friday from 08:30 am to 04:00 pm. You can request a call back by filling out our call back form.
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