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 of the person you care for.
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. Ask your health care team who to contact in an emergency or after hours.
Finding support as a carer
As a carer you may need support at any stage of cancer, but your responsibilities usually increase if the disease progresses. You may need help managing symptoms, providing personal care, preparing food and organising finances.
- 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.
Looking after yourself
Being a carer can bring a sense of satisfaction, but it can also be challenging and stressful. You may feel at risk of losing your identity as partner, child, sibling or friend to your caring role. You may also feel overwhelmed as you juggle work, family and the person you are caring for.
This may be the first time you've cared for someone or the first time you've considered palliative care. Take your time. Read what seems useful now and leave the rest until you're ready. Accepting help from the palliative care team can mean you can spend more quality time with the person you’re caring for.
You may find information about advanced cancer, caring for someone with cancer and caring for someone nearing the end of life more useful at this time. The podcast, The Thing About Advanced Cancer, provides insights to help you navigate through these challenging times.
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).
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.
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
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.
- Carer Gateway – can connect you with carer services in your area, talk about your concerns and how you feel about your carer role, and also put you in touch with other carers in your area or you can join an online carer forum.
- Grief counselling and information – you and your family may be eligible for grief and bereavement counselling provided through the palliative care team.
- Cancer Council – we offer a national telephone support group for carers. Call 13 11 20 to learn more. You can also connect with people who have similar experiences through our Online Community.
- Young Carers – for age-appropriate information and support services, visit the Young Carers Network. To find respite services for carers under 25, call Carer Gateway on 1800 422 737.
There are a range of services that can help with palliative care. The availability of services may vary depending on where you live. Some services are free, but others may have a cost. Talk to your health care team or call Cancer Council on 13 11 20 to find out what services are available.
Counselling and mentoring services
Equipment and aids
Legal and financial information
Understanding Palliative Care
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Expert content reviewers:
Dr Cynthia Parr, Specialist in Palliative Care, HammondCare and Macquarie University Hospital, NSW; Dr Lisa Cuddeford, Clinical Lead, WA Paediatric Palliative Care Service, WA; Dr Laura Kirsten, Principal Clinical Psychologist, Nepean Cancer Care Centre, NSW; Penny Neller, Project Coordinator, National Palliative Care Projects, Australian Centre for Health Law Research, Queensland University of Technology, QLD; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; A/Prof Peter Poon, Director, Supportive and Palliative Care, Monash Health, and Adjunct Associate Professor, Monash University, VIC; Dr Kathy Pope, Radiation Oncologist, Peter MacCallum Cancer Centre, VIC; Kate Reed-Cox, Nurse Practitioner National Clinical Advisor, Palliative Care Australia; Juliane Samara, Nurse Practitioner, Clare Holland House – Specialist Palliative Aged Care, Calvary Public Hospital, ACT; Annabelle Solomon, Consumer; Silvia Stickel, Consumer; Kaitlyn Thorne, Manager, PalAssist, Cancer Council Queensland; Kim Vu, Consumer; Rosie Whitford, Social Worker – Grief, Bereavement and Community Palliative Care, Prince of Wales Hospital, NSW.
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The information on this webpage has been adapted from Understanding Palliative Care - A guide for people with cancer, their families and friends (2021 edition). This webpage was last updated in November 2021.