Page last updated: January 2024
The information on this webpage has been adapted from Understanding Palliative Care - A guide for people with cancer, their families and friends (2023 edition). This webpage was last updated in January 2024.
Expert content reviewers:
This information was developed with help from Palliative Care Australia and is based on the National Palliative Care Strategy 2018. We thank the reviewers of this booklet:
- Prof Meera Agar, Palliative Care Physician, Professor of Palliative Medicine, University of Technology Sydney, IMPACCT, Sydney, NSW
- Anne Booms, Nurse Practitioner, Palliative Care, Icon Cancer Centre Midlands, WA
- Nicola Champion, Consumer
- John Clements, Consumer
- Dr Alexandra Clinch, Palliative Medicine Specialist and Deputy Director, Palliative Care, Peter MacCallum Cancer Centre and Royal Melbourne Hospital, VIC
- A/Prof Jaklin Eliott, School of Public Health, University of Adelaide, SA
- Dr Jemma Gilchrist, Clinical Psychologist, Mind My Health, NSW
- McCabe Centre for Law and Cancer, VIC
- Caitlin MacDonagh, Clinical Nurse Consultant, Palliative Care, Royal North Shore Hospital, NSW
- Dr Roya Merie, Radiation Oncologist, Icon Cancer Centre, Concord, NSW
- Dr Deidre Morgan, Research Centre for Palliative Care, Death and Dying, Flinders University, SA
- Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA
Palliative care is person-centred care that helps people with a progressive, life-limiting illness to live as comfortably as possible. The goal is to help you maintain your quality of life by dealing with your physical, emotional, cultural, social and spiritual needs.
Because everyone is different, palliative care needs vary from person to person. Starting palliative care can also be helpful to your carers or family.
You can continue to have cancer treatment while you are also having palliative care, which may be given at home, in a hospital, in a palliative care unit, in a residential aged care facility or through community-based palliative care providers.
Most often, your general practitioner (GP) or a community nurse will organise and coordinate your palliative care. But sometimes this role may be done by a palliative care doctor at a hospital.
Looking after yourself
If you find reading about palliative care distressing, read what seems useful now and leave the rest until you’re ready. You may also like to pass this booklet to family and friends for their information.
For support, call Cancer Council on 13 11 20. Ask about joining a support group or our online discussion forum to connect with others who have a similar experience.
You may find information about living with advanced cancer more useful at this time. The podcast, The Thing About Advanced Cancer, provides insights to help you navigate through these challenging times.
Types of care
Person-centred care is care that treats you in the way you’d like to be treated and listens to your needs, preferences and values, as well as the needs of your family and carers.
It means that your health care provider will involve you in planning your treatment and ongoing care. Palliative care offers a range of care and support options that can be tailored to meet your individual needs in five areas:
- Physical needs – including relief of symptoms, help with medicines and movement, suggesting changes around the house to make things easier and safer, and referrals to services to give your carer a short break.
- Emotional needs – including support for families and carers to talk about the changes advanced cancer brings and other sensitive issues, plan for the future, work through feelings and referral to counselling.
- Cultural needs – including ensuring care and conversations that you have are sensitive to your culture, ethnicity, background, beliefs and values.
- Social needs – helping you achieve your goals, such as how to get the most out of each day, assisting with day-to-day needs, providing advice on financial issues and helping identify or set up a support network.
- Spiritual needs – including support from religious leaders you know (e.g. a pastoral carer or chaplain), from spiritual care practitioners, or from other professionals on the palliative care team.
Some people avoid palliative care because they hope that a cure will be found for their cancer. Having palliative care does not mean giving up hope.
People with advanced cancer may have palliative care for several months or years and continue to enjoy many aspects of life in that time.
You may find that you focus on the things that are most important to you. Some people take pleasure in completing projects or exploring new interests and hobbies.
As the disease progresses, your goals may change. For example, you might hope to live as comfortably as you can for as long as possible or to spend more time with family. Palliative care can help you achieve these goals.
Frequently asked questions
Does palliative care mean I will die soon?
When most people hear the term palliative care, they worry it means their treatment team has given up hope or they are going to die soon. This fear is one reason that some people don’t access palliative care services early – or at all.
Palliative care is about living in a way that is meaningful to you, within the limits of your illness. Some people live comfortably for months or years after a diagnosis of advanced cancer, and can be supported by palliative care as needed.
For others, the cancer advances quickly so that their care is focused on end-of-life needs soon after their referral to a palliative care service. Whatever stage you’re at, your palliative care team will adjust your care to meet your changing needs.
When can I start palliative care?
There is no need to wait until you are close to the end-of-life - research shows having palliative care early on improves quality of life.
Depending on your needs, you may use palliative care from time to time or you may use it regularly for a few weeks or months.
Some people receive palliative care for several years. This is because improved cancer treatments can sometimes stop or slow the spread of advanced disease and relieve symptoms for a number of years.
The cancer may then be considered a chronic (long-lasting) disease.
How do I get palliative care?
Ask your GP, medical specialist or other health professional about what services you may need and a referral. Or you can contact a palliative care service yourself or for someone else. You don’t usually need a referral but it can be helpful.
Sorting out care sooner rather than later will reduce stress on you and your family. It will give you time to better understand and manage any physical symptoms (such as pain or nausea), and to consider your emotional, cultural, social and spiritual needs.
Can I still have cancer treatment?
If you have palliative care, you can still have active treatment to shrink the cancer or slow its growth. The palliative care team will work with your cancer specialists to manage side effects from treatment and maintain your quality of life.
Cancer treatments such as surgery, drug therapies and radiation therapy may also be used as part of palliative treatment. In this case, the aim is not to cure the cancer but to control the cancer or relieve symptoms.
You may also want to consider joining a clinical trial.
Does palliative care shorten or lengthen life?
Palliative care treats death and dying as a normal part of life. The treatment and care provided do not aim to make you live longer, they try to make what time you have as best as it can be.
The palliative care team provides services to improve your quality of life throughout the stages of advanced cancer. This may include managing pain and other symptoms.
Some studies show that if symptoms such as pain are controlled, people will feel better and may live longer or be able to tolerate cancer treatment for longer.
Who will coordinate my care?
In most cases, a GP or community nurse will coordinate your palliative care. If your care becomes complex, they will usually take advice from a specialist palliative care service, but you may not see the palliative care specialist yourself.
If you have more complex health needs, you may see a palliative care specialist or nurse practitioner. Usually this will be as an outpatient, but some specialist palliative care services can also visit you at home.
You may need to stay in hospital or a palliative care unit (hospice) for short periods to have medicines adjusted or to get any pain under control.
If your condition stabilises or improves, you may not need to see the specialist palliative care service for a period of time, or you may be able to stop having palliative care.
Who will coordinate my care?
In most cases, a GP or community nurse will coordinate your palliative care. If you have more complex health needs, such as symptoms that are hard to control, your care may be coordinated by a specialist palliative care service.
You will usually see a palliative care specialist, or sometimes a nurse practitioner, as an outpatient. Some specialist palliative care services can visit you at home.
You may also need to stay in hospital or hospice for short periods to have medicines adjusted or get pain under control. The specialist palliative care service will continue to consult your cancer care team about your treatment.
If your condition stabilises or improves, you may not need to see the specialist palliative care service for periods of time or you may be discharged from palliative care.
What if I live alone?
Community palliative care services can help you to stay at home for as long as possible. But at some point, you may need 24-hour care.
Depending on your circumstances and care needs this may be available in a palliative care unit (hospice), hospital or residential aged care facility. If you live alone, you could ask for support from:
It’s common to worry about being a burden on friends, family or community organisations. But they may want to help, so talk to them about your needs and ways they can help that work for you both.
Where can I have palliative care?
You can have palliative care in different places, including:
- your own home or a family member's home
- at a residential aged care facility or other out-of-home facility
- in a hospital
- at a specialist palliative care unit (hospice)
- at an outpatient clinic or via telehealth.
An important role for the palliative care team is to work out the best place for your care. The team will consider your care needs, home environment, support networks, and what organisations and individuals are available in your area to help you.
They will then discuss the possibilities with you, your family and carers. You may be able to choose where you want to receive palliative care, or you may be able to alter arrangements as your needs change.
Many people want to receive care at home because it is a familiar environment close to family and friends. If you are cared for at home, you (and anyone who cares for you) may be able to receive community-based palliative care services.
Depending on your situation, it may not be possible to stay at home, even with home help. Hospitals and palliative care units are designed for short-term stays, to address worsening symptoms, to plan care at home or for people nearing end of life.
If you cannot return home and need care for several months or more, the palliative care team will talk to you and your carers about where you can receive ongoing care, such as a residential aged care facility.
Do I have to pay for palliative care?
The federal, state and territory governments fund a range of palliative care services that are free in the public health system, wherever you receive your care.
Sometimes you may need to pay part of the cost of care, for example:
- hiring specialised equipment for use at home
- paying for medicines or wound dressings
- paying for your own nursing staff if you choose to stay at home and need 24-hour assistance
- paying an excess if you have private health insurance that covers palliative care and you go to a private hospital
- using short-term care (respite services) that charge a fee
- paying the fee of a private allied health professional, such as a psychologist or physiotherapist (you may be eligible for a Medicare rebate for up to five visits per calendar year as part of a chronic disease management plan with your GP)
- paying for complementary therapies, such as massage therapy and acupuncture.
Ask what costs may be involved, and what amount may be covered, when making appointments. Cancer Council may be able to connect you to an appropriate financial professional. Call 13 11 20.
Will I lose my independence?
Depending on your condition, you may need a little help with a few things or more help with lots of daily tasks. The amount of help you need is likely to change over time.
Your GP or palliative care team will discuss practical ways to maintain your sense of independence for as long as possible.
An occupational therapist (your GP or community service can give you a referral) may suggest changes or services to help you stay at home, such as installing handrails or a ramp.
An occupational therapist or physiotherapist may also suggest or loan you equipment to help conserve your energy, such as a walking frame.
For many people, maintaining control over day-to-day decisions is important. If you feel you are losing your independence, your GP or palliative care team can talk with you about how to keep doing what’s important to you as your mobility and health change.
Voluntary assisted dying
Voluntary assisted dying (VAD) is when a person with an incurable, life-limiting condition chooses to end their life with the assistance of a health practitioner – using specially prescribed medicines from a doctor.
VAD is not part of any palliative care services. However, if you are considering this option, know that palliative care remains available to you right up until the end of your life, no matter how you die.
Many people accessing VAD will want palliative care as well, and that’s okay.
It is essential to check the latest updates and know the law and rules around making this choice. Laws and rules around VAD vary depending on the state or territory where you live.