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.
For more on this, see Caring for someone with cancer and listen to our podcast Cancer Affects the Carer Too.
Learn more about:
- Talking to the treatment team
- Making decisions
- Rights of same-sex partners
- Workplace issues for carers
- Financial assistance and other support for carers
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 health care 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.
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. Learn more about advance care planning.
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.
For more on this, see LGBTQI+ people and cancer.
→ READ MORE: Workplace issues for carers
Podcast: Cancer Affects the Carer Too
Listen to more episodes from our podcast for people affected by cancer
More resources
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.
View the Cancer Council NSW editorial policy.
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