Palliative care

Palliative care is care that helps people live their life as fully and as comfortably as possible when living with a life-limiting or terminal illness.

It is often given to people with advanced cancer but palliative care can be used at any stage when cancer is active.

What is palliative care?

The aim of palliative care is to enhance your quality of life and help you maintain your independence. It also provides support to families and carers.

The role of palliative care is to:

• help you achieve the best quality of life
• make sure your physical, practical, emotional and spiritual needs are met
• help you make decisions about your treatment and ongoing care.

When can palliative care help?

Palliative care can help anyone with cancer who is experiencing physical or emotional discomfort.

Palliative care can help reduce cancer symptoms, which may include pain, fatigue, nausea and constipation, and can reduce side effects from cancer treatments.

Some people receive palliative care for several years as improved cancer treatments may be able to slow or stop the spread of advanced disease and relieve symptoms even if it can’t be cured.

Palliative care can also help if you are experiencing depression or anxiety due to your cancer diagnosis. Counselling and support services can help address many fears, worries or conflicting emotions.

If you have advanced cancer, a social worker or counsellor can help you work out your goals and how best to achieve them. These goals may be specific end-of-life wishes, but can also simply involve making the most out of each day.

When can I start palliative care?

Palliative care can be started at any stage following a cancer diagnosis where the cancer is still active. Speak to your general practitioner, community nurse or cancer specialist about the palliative care services appropriate for you.

How do I get palliative care?

You will need a referral from your GP, medical specialist or other health professionals to access palliative care. Once you know that the cancer is an advanced stage, you can consider palliative care. Sorting out care sooner will help reduce stress on you and your family. This will also give you time to better understand and manage any physical symptoms such as pain or nausea, and consider your emotional, social, cultural and spiritual needs.

Where can I have palliative care?

You can have palliative care in different places, including:

• at home
• in a hospital
• at a residential aged care facility or other out-of-home facility
• in a specialist palliative care unit (hospice).

Counselling can be given at home or at a local health service. Palliative treatment such as radiotherapy or surgery will be administered in a hospital or cancer centre.

The palliative care team will consider your care needs, your home environment, your support networks, and what organisations and individuals are available in your area. If you are cared for at home, you can be supported by community palliative care services.

Depending on your situation, it may not always be possible to stay at home. If this is the case, the palliative care team will talk to you and your carers about options for your ongoing care, which may include a hospital or palliative care unit.

Will I lose my independence?

Depending on your situation, you may need a little help with some things or more help with a lot of daily tasks. This is likely to change over time.

Your palliative care team will talk to you about practical ways you can maintain a sense of independence for as long as possible. They make some recommendations such as home modifications such as installing a ramp or handrails or loaning equipment such as a walking frame to help you conserve energy.

Who are the palliative care team?

Your palliative care team may be made up of medical, nursing and allied health professionals, volunteers and carers working closely with your general practitioner or family doctor, who offer a range of services to assist you, your family and carers throughout your illness.

The team may include your general practitioner, nurse, palliative care specialist, cancer specialist, counsellor, social worker, occupational therapist, physiotherapist, pharmacist, speech pathologist, cultural adviser, patient care navigator and dietitian. Family members and other personal carers may also form part of the team.

Support may include visiting patients in a hospice or hospital setting, or speaking with patients and their family members about the diagnosis and treatment.

You will have regular appointments with the health professionals in your team so they can monitor you and adjust your care. You won't necessarily see all the people listed; some roles overlap and assistance varies across Australia.

Can I still have cancer treatment?

You can still have active treatment to shrink the cancer or stop it growing. The palliative care team will work with your cancer specialists to manage any side effects from treatment and maintain your quality of life.

Cancer treatment such as radiation therapy, drug therapies and surgery may also be used as part of palliative care. In this case, the aim is not to cure the cancer but to control it or relieve symptoms.

How long will I have palliative care for?

You and your palliative care team will determine how long you receive palliative care.

If you have advanced cancer you may be supported by palliative care services for months or years after your diagnosis.

Whatever stage you're at, your team will continually assess your changing needs and adjust your care to suit.

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 whether you receive care in a hospital, residential aged care facility or at home.

You may need to pay part of the costs of care. This might include:

• paying for medicines
• hiring specialist equipment for the home
• paying for nursing staff if you choose to stay at home and need 24-hour assistance
• using short-term care (respite care) that charge a fee
• paying the fee for a private allied health professional such as a physiotherapist or psychologist (check to see if you are eligible for a Medicare rebate)
• paying for complementary therapies.

You can get more information by contacting your state or territory palliative care organisation.

Where can I find additional support?

Being referred for palliative care is of course likely to be distressing.

You may have a range of emotions. Many people feel shocked, fearful, sad or angry. Others may feel relief or have a sense of inner peace. It will probably help to talk about the different feelings you have. Your partner, family members and close friends can be a good source of support, or you might prefer to talk to a health professional or call Cancer Council on 13 11 20.

If you live alone, you could ask for support from:

• your GP or community nurse
• the palliative care team or volunteer palliative care organisations
• Palliative Care Australia (for services available near you)
• My Aged Care
• the local community health service
• culturally-based community services
• your local council
• a church or other religious group
• practical support services (see pages 44–47)
• Cancer Council 13 11 20 or cancer support groups.

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.

CarerHelp provides information and advice to the thousands of Australians who find themselves having to care for a partner, friend or relative affected by cancer and who is undergoing palliative care.

For many people, an illness in the family can also be a financial strain. You may be eligible for assistance from the government (federal, state or local), volunteer bodies, church and other non-government groups. Your local Cancer Council may be able to organise legal and financial advice on issues such as substitute decision-makers, will preparation, and early access to superannuation. Call Cancer Council on 13 11 20 for more details.

The Department of Human Services (Centrelink) offers special payments and provisions for people with a long-term illness and for their primary carers. For more information, call the department on 13 27 17 or visit humanservices.gov.au.

Source

Understanding Palliative Care, Cancer Council Australia © 2023. Last medical review of this booklet: December 2023.