Skip to content

Rights of carers

A carer is someone who provides unpaid care and support to a person who needs this help because of an illness or disability. Carers have a vital but often demanding role providing physical and emotional support to people with cancer. Knowing your rights as a carer can help you deal with the treatment team, and make medical and financial decisions.

Talking to the treatment team

As a carer, you’re part of the health care team. One of your key roles is to help the person you care for communicate with their treatment team and make decisions about their care. The person needs to give written consent to allow you to do this, and this consent should be included in their medical record. At times, you may also need to speak on behalf of the patient. It is your right to take on this advocacy role if that is what the person you care for would like.

Download our booklet ‘Caring for Someone with Cancer’

Making decisions

The person you care for may give you the power to make decisions on their behalf if they lose the capacity to make their own decisions. This can include decisions about finances and medical care.

It is important that you have a discussion ahead of time about how much treatment the person wants for the cancer, what matters most to them when making treatment decisions, and whether you’re able to carry out their wishes.

If the person you are caring for becomes incapable of making their own decisions and has not given you the power to make decisions on their behalf, the medical practitioner will approach the default substitute decision-maker. This may be you, if you are a spouse, partner, close family member or friend.

Rights of same-sex partners

The law recognises the role of same-sex partners in medical decision-making. Sometimes,
medical staff may not be fully aware of this and they may seek a decision from another member of the patient’s family before approaching the person’s domestic partner.

To ensure your rights are protected, you may want to inform the treating doctor that you are the patient’s domestic partner, and are likely to be the default substitute decision-maker for medical decisions. You or your partner may be concerned about you being recognised as the decision-maker. If so, consider asking your partner (when they still have capacity) to appoint you as their substitute decision-maker.

Download our booklet ‘LGBTQI+ People and Cancer’

Workplace issues for carers

Many people who care for someone with cancer are also employed. Sometimes people find it difficult to balance their working role with their caring role. You may need to take time off work or to stop working for some time.

Taking time off work

All full-time employees are entitled to a minimum of 10 days of paid personal leave a year. This can be used if you are caring for a member of your immediate family or household who is sick. Personal leave for part-time employees is calculated on a pro rata basis. Employees can take as much personal leave as they have built up (accumulated), though employers can ask for evidence about why time off is needed (e.g. a medical certificate or a statutory declaration).

In addition, full-time and part-time employees are entitled to 2 days of paid compassionate or bereavement leave when an immediate family or household member is seriously ill or injured, or dies. Casual employees are also entitled to this leave, but it is unpaid.

If you’ve used all of your paid personal leave, or you are a casual employee, you are entitled to 2 days of unpaid carer’s leave for each time a member of your immediate family or household requires care or support because of illness. If you need to take more time off work, you may be able to use annual leave or long service leave, or apply for leave without pay (if your employer allows this). For more information, visit Fair Work.

Flexible working arrangements

You may have the right to ask your employer to change your work arrangements to help you manage your work and caring responsibilities. The request must be made in writing. Employers can only refuse to provide these arrangements on reasonable business grounds. Examples of possible flexible working arrangements include:

  • allowing you to work from home some or all of your working hours
  • changing your start, finish or break times
  • allowing you to vary your hours, work part-time or job share.

Discrimination

It is generally unlawful for your employer, or a prospective employer, to discriminate against you because of your caring responsibilities. You have the right to the same opportunities for promotion, transfer or training, and the same benefits as other employees, despite your caring responsibilities.

Making a complaint

If you feel you have been discriminated against or treated unfairly because of your caring responsibilities, you may have the right to make a complaint to the Australian Human Rights Commission, the Fair Work Commission, or the human rights, equal opportunity or anti-discrimination agency in your state or territory.

Download our booklet ‘Cancer, Work & You’

Support and financial assistance for carers

Being a carer can bring a sense of satisfaction, but it can also be stressful and challenging. Give yourself some time out and share your concerns with somebody neutral such as a counsellor or your GP, or call Cancer Council 13 11 20. There is a wide range of support available to help you with your caring role, including respite care. The Australian Government’s Carer Gateway provides practical information and resources for carers.

Caring for someone with cancer can also cause financial difficulties. Services Australia  (Centrelink) supports carers with a range of payments, including the Carer Payment and Carer Allowance.

Featured resource

Cancer Care and Your Rights

Download PDF

This information is reviewed by

This information was last reviewed May 2023 by the following expert content reviewers: Prof Sarah Lewis, Faculty of Medicine and Health, The University of Sydney, NSW; Kevin Bloom, Senior Social Worker, Haematology and Bone Marrow Transplant, Royal North Shore Hospital, NSW; Danielle Curnoe, Consumer; Alana Fitzgibbon, Clinical Nurse Consultant – Gastro-Intestinal Cancers, Cancer Services, Royal Hobart Hospital, TAS; Hall & Wilcox (law firm); Johanna Jordaan, Consumer; Dr Deme Karikios, Medical Oncologist, Nepean Cancer and Wellness Centre, Nepean Hospital, NSW; Melissa Lawrie, Breast Cancer Clinical Nurse, Cancer Services, Gold Coast Hospital and Health Service, QLD; Jacqueline Lesage, Consumer Reviewer, Cancer Voices NSW; McCabe Centre for Law and Cancer, VIC; Louise Pellerade, 13 11 20 Consultant, Cancer Council WA; Andrew Potter, Consumer; Siân Slade, PhD Candidate, Nossal Institute for Global Health and Non-Executive Director (health, disability sectors), VIC; Paula Watt, Clinical Psychologist, WOMEN Centre, WA.

Related Content