When diagnosed with a life-limiting illness, it can be a good idea to plan for your future health care. Discussing your preferences with your family, friends and treatment team helps ensure that your wishes are respected if you lose the ability (capacity) to make your own decisions.
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Overview
Everyone has their own individual preferences, and these will often change over time. Making your wishes clear can help give you peace of mind, protect your rights and ensure that the people you want involved in your care are included.
The following are steps to take as part of advance care planning:
Prepare an advance care directive
You can write down your goals and instructions for your future medical care in this document. It also provides a record of your values and treatment preferences. Doctors, family, carers and substitute decision-makers must follow this record if you become unable to communicate or make decisions. Depending on which state or territory you live in, it may be called an advance care directive, health direction or advance personal plan.
Appoint a substitute decision-maker
You can legally appoint one or more people to make treatment decisions for you if you are not capable of consenting yourself. A substitute decision-maker should be someone you trust, and who understands your values and preferences for care. They do not have to be your next of kin or a carer. In NSW, this is known as an enduring guardian. Depending on where you live, they may be known as an enduring guardian, enduring power of attorney or medical treatment decision maker.
Appoint an enduring power of attorney
If you are unable to look after your own financial and legal affairs, you can legally give one or more people the power to make financial or legal decisions for you.
Make a will
A will is a legal document that sets out what you want to happen to your assets after you die. These assets are called your estate and may include your house, land, car, bank accounts, jewellery, clothes, household goods or investments. A will can also record your wishes regarding guardianship plans for any children you have.
A will needs to be prepared and written in the right way to be legally valid. It is best to ask a lawyer to help you or contact the Public Trustee in your state or territory. If you die without a will, you are said to die intestate. Your assets are distributed to family members according to a formula provided by the law. Although any will can be challenged in court, having a valid will usually means your assets will go to the people of your choice and avoids extra expenses.
Each state and territory has different laws about advance care planning. For specific information and advice, call Cancer Council 13 11 20. We may be able to refer you to a lawyer. You can also call Advance Care Planning Australia on 1300 208 582.
Default decision-maker
If you lose the capacity to give consent for medical treatment and you haven’t appointed a substitute decision-maker, consent may be given by a default substitute decision-maker. Depending on where you live, they may be known as the person responsible, default substitute decision-maker, available consenter, statutory health attorney or medical treatment decision-maker. In NSW, this person is called the person responsible.
The law sets out who should make decisions on your behalf. They are usually approached in the following order:
- guardian – either an enduring guardian you appointed or a guardian appointed by a court or tribunal
- spouse or partner – the most recent spouse, including a de facto partner, with whom you have a close and continuing relationship
- unpaid carer – someone who provides ongoing care
- relative or friend – someone who has a close personal relationship and an interest in your welfare.
For more information on palliative care for LGBTQI+ people, visit lgbtiqhealth.org.au/palliative_care.
Communicating openly
It can help to have the difficult conversations with your partner/s and family (chosen or otherwise) early, so that you are not rushed into decision-making. You may want to choose what you would like for your funeral, and take an active role in how you will be remembered. It can be easier for both you and your intimate partner/s to have certainty about this early so you can focus your energy on having treatment or feeling your best. It may not necessarily be a comfortable conversation, but it can be proactive, honest and deeply important for those involved.
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We thank the chief investigators from the Out with Cancer research project: Prof Jane Ussher, Prof Janette Perz, Prof Martha Hickey, Prof Suzanne Chambers, Prof Gary Dowsett, Prof Ian Davis, Prof Katherine Boydell, Prof Kerry Robinson and Dr Chloe Parton. Partner investigators were Dr Fiona McDonald and A/Prof Antoinette Anazodo. Research Associates were Dr Rosalie Power, Dr Kimberley Allison and Dr Alexandra J. Hawkey.
We thank the reviewers of our LGBTQI+ People and Cancer booklet: Prof Jane Ussher, Chair, Women’s Heath Psychology and Chief Investigator, Out with Cancer study, Western Sydney University, NSW; ACON; Dr Kimberley Allison, Out with Cancer study, Western Sydney University, NSW; Dr Katherine Allsopp, Supportive and Palliative Care Specialist, Westmead Hospital, NSW; A/Prof Antoinette Anazodo OAM, Paediatric and Adolescent Oncologist, Sydney Children’s Hospital, NSW; Megan Bathgate, Consumer; Gregory Bock, Clinical Nurse Consultant–Oncology Coordinator, Urology Cancer Nurse Coordination Service, WA Cancer & Palliative Care Network, WA; Morgan Carpenter, Executive Director, Intersex Human Rights Australia (formerly OII Australia); Prof Lorraine Chantrill, Medical Co-Director Cancer Services, Illawarra Shoalhaven Local Health District, NSW; A/Prof Ada Cheung, Endocrinologist, Head, Trans Health Research Group, Department of Medicine (Austin Health), The University of Melbourne, VIC; Bonney Corbin, Australian Women’s Health Network; Cristyn Davies, Research Fellow, Specialty of Child and Adolescent Health, Faculty of Medicine and Health, The University of Sydney and Children’s Hospital Westmead Clinical School, NSW; Prof Ian Davis, Professor of Medicine, Monash University and Eastern Health, Medical Oncologist, Eastern Health, Chair, ANZUP Cancer Trials Group, VIC; Rebecca Dominguez, President, Bisexual Alliance Victoria; Liz Duck-Chong, Projects Coordinator, TransHub and Trans Health Equity, ACON, NSW; Lauren Giordano, 13 11 20 Consultant, Cancer Council NSW; Hall & Wilcox (law firm); Natalie Halse, BCNA Consumer Representative; Jem Hensley, Consumer; Prof Martha Hickey, Professor of Obstetrics and Gynaecology, The University of Melbourne, and Director of the Gynaecology Research Centre, The Women’s Hospital, VIC; Kim Hobbs, Clinical Specialist Social Worker – Gynaecological Cancer, Westmead Hospital, NSW; Dr Laura Kirsten, Principal Clinical Psychologist, Nepean Cancer Care Centre, NSW; Amber Loomis, Policy and Research Coordinator, LGBTIQ+ Health Australia; Julie McCrossin and Melissa Gibson, Consumers; Dr Fiona McDonald, Research Manager, Canteen, NSW; Dr Gary Morrison, Shine a Light (LGBTQIA+ Cancer Support Group); Penelope Murphy, Cancer Council NSW Liaison, Prince of Wales Hospital, NSW; Dr Rosalie Power, Out with Cancer study, Western Sydney University, NSW; Jan Priaulx, 13 11 20 Consultant, Cancer Council NSW; Paul Scott-Williams, Consumer; Simone Sheridan, Sexual Health Nurse Consultant, Sexual Health Services, Austin Health, VIC; Cheryl Waller and Rhonda Beach, Consumers.
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