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
Carers as part of the team
Family and carers play a key role in palliative care and are considered part of the team. As a carer, you can work with the palliative care team to ensure you understand, and are included in, decisions about the care and treatment.
The person you are caring for must give written consent before the palliative care team can talk with you about their care when they are not present. This consent and your contact details should be formally recorded in the individual’s case file.
The goal of palliative care is to improve quality of life for both the person with cancer, and their family and carers. The palliative care team will help identify services that can offer emotional and practical support to you in your caring role.
Carers can sometimes feel they are losing their identity as partner, child, sibling or friend to their caring role. They may also feel overwhelmed as they juggle work, their family and the person they are caring for.
Accepting help from the palliative care team can mean you spend more quality time with the person you’re caring for.
Finding support and information as a carer
It’s important to look after your own physical and emotional wellbeing. Give yourself some time out and share your concerns with somebody neutral such as a counsellor or your doctor.
- Palliative Care Australia has resources about palliative care, managing symptoms, and caring for yourself.
- Find information on home help, transport and respite care, as well as counselling and support groups near you, from Carer Gateway.
- Call Cancer Council on 13 11 20 for more information and to speak to our trusted cancer nurses.
- Ask your health care team who to contact in an emergency or after hours.
Looking after yourself
Being a carer can bring a sense of satisfaction, but it can also be challenging and stressful. As a carer your responsibilities usually increase as the disease progresses.
Over time, you may need to help more with managing symptoms, providing personal care, preparing food and organising finances.
You may find information about advanced cancer, caring for someone with cancer or caring for someone nearing the end of life useful at this time.
The podcast, The Thing About Advanced Cancer, provides insights to help you navigate through these difficult times.
Respite care
Caring can be demanding and can affect your own physical and emotional wellbeing. Respite care lets carers have a break.
Some carers don’t arrange respite care because they feel guilty or concerned about leaving the person they are caring for. But by taking a break, you will probably find that you can continue your caring role with more energy and enthusiasm.
You may feel you need respite care for a couple of hours, overnight or for several days. You can use respite care for any reason, such as looking after your own health, visiting friends, or catching up on sleep.
It can sometimes be given in your home, or the person you are caring for may be admitted to a respite care centre, residential aged care facility or, in some cases, a hospital or palliative care unit (hospice).
You may have to pay part or all of the cost of respite care. The fees will depend on the care provider, whether it is subsidised by the government, how long the care is for, and the type of care required.
It’s a good idea to start looking into respite services before you actually need them. Talk to your doctor, social worker or the palliative care team about what services are available and how you can access them.
The Carer Gateway also has information on local carer support services, respite options and other support that may suit your needs.
Counselling and support
Carers often have a range of emotions. Talking to a counsellor or social worker may help you work through your worries and concerns, learn ways to communicate, and cope with changes in your life.
If the person you are caring for is nearing the end of life, the palliative care team can help you understand what is happening and what happens next.
This may include discussions about feelings of loss and grief, now and in the future. Some carers may experience depression and/or anxiety, and you should talk to your GP or another health professional.
Useful services
There are a range of services that can help with palliative care. Some services are free, and others may have a cost. Talk to your health care team or call Cancer Council on 13 11 20 to find out more.
Carer services
Counselling and mentoring services
Equipment and aids
Future planning
Legal and financial information
Palliative care
Respite care