Cancer Care and Your Rights
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Cancer Care and Your Rights
Making treatment decisions
Whether you have just been diagnosed with cancer or have cancer that has spread or come back, you will have to make a number of decisions about your treatment. It can be difficult to decide on the type of treatment to have. Ask your specialist to explain all the treatment options to you and take as much time as you can before making a decision.
Adults have the right to accept or refuse any treatment they are offered. Some people with advanced cancer choose treatment that has significant side effects even if it gives only a small benefit for a short period of time. Others decide to focus their treatment on quality of life. Becoming informed about your options can help you and your specialist jointly decide on a treatment plan that is right for you.
Understanding the type of cancer you have, the available treatments, possible side effects and any extra costs can help you weigh up the options and make a well-informed decision.
You have the right to delay your decision until you feel you have had enough time to consider all your options. Check with your specialist how soon treatment should begin – it might not affect the success of the treatment to wait a while.
If you are confused or want to check anything, it is important to ask your specialist questions. It’s often a good idea to have a family member or friend go with you to specialist appointments to join in the discussion, write notes, ask questions or simply listen. It may also be possible for them to join the consultation by phone or video call.
Each person’s situation is different – not everyone with the same type of cancer will make the same decisions about treatment. You may find it helpful to do some of the following:
- Weigh up the advantages and disadvantages of each treatment, and whether it will help you meet your treatment goals.
- Take a list of questions to the appointment and ask if you can record the consultation.
- Ask if other treatments are an option (if only one type of treatment is recommended) or if there are any clinical trials that may be suitable for you.
- Consider how potential side effects might affect you, especially if they will have an impact on your lifestyle, sexuality, fertility, or ability to work; if you have a partner, it may help to discuss any side effects with them.
- Find out more about the treatment choices by: speaking to your specialist or cancer care coordinator; calling Cancer Council 13 11 20; getting a second opinion; contacting cancer support groups; and talking to family, friends or people who have had the same type of cancer.
- Share your concerns with your doctor or the treating hospital, if you’re not happy with the information you are given or how it is given consider making a complaint.
Getting a second opinion
Finding a specialist and deciding on treatment can be difficult. You have the right to talk to more than one specialist about your treatment options or to confirm the recommended treatment. Called a second opinion, this may help reassure you that you have explored all of your options.
A second opinion may also be helpful for people who face a choice between high-risk treatment that has a chance of a better outcome, and lower-risk treatment that is less likely to be successful.
Not everyone will want to get a second opinion. However, some people would like a second opinion but don’t ask for one. This may be because they don’t realise that this is an option, or because they don’t want to upset the specialist they’ve already seen.
Reasons you may want to get a second opinion include:
- finding peace of mind
- ensuring you receive up-to-date advice and treatment
- getting a different point of view
- joining or finding out about a clinical trial
- exploring and challenging advice from your first doctor
- not feeling at ease with your first doctor.
Finding another specialist
You can seek a second opinion by asking:
- your specialist – many are happy to recommend another doctor
- your GP – if you don’t feel comfortable asking the specialist for a referral for a second opinion, you can go back to your GP
- treatment centre staff – one of the nurses at your treatment centre can give you a list of specialists who work at that location. Your GP can then write a referral to the specialist of your choice.
Seeking another opinion
- You have the right to ask for as many opinions as you need. You will need a valid referral from your GP or specialist to claim some money back on Medicare for these appointments.
- Doctors aren’t allowed to discriminate against people for requesting a second opinion.
- You don’t have to tell your specialist that you are seeking a second opinion, but it might help if you do. Most doctors understand the value of a second opinion and may be able to help you find someone.
- Some specialists who have a heavy workload don’t accept patients for a second opinion or may charge more.
- Second opinions can take time. It may take a while to be referred to the new specialist and to get an appointment with them.
- Once you find someone to give you a second opinion, your first specialist should share your test results with them.
- If you are a public patient, you may only be allowed to be on a waiting list to see a specialist at one hospital at a time. Your doctor may also not be able to refer you to another specialist in the same hospital.
- You can get a second opinion even if you have started treatment.
- You might decide to be treated by the first doctor or you may prefer to be treated by the second specialist.
- You may be able to get some financial support if you need to travel a certain distance to get a second opinion. All state and territory governments have travel assistance programs.
- If you are being treated in the public system, you can get a second opinion from a private specialist, but check first how much this will cost.
“I wasn’t happy with the treatment recommended by the first specialist my GP referred me to, so I asked for a second opinion.” VIVIEN
While every case of cancer is different, your specialist should recommend treatment that is based on research. This is called evidence-based medicine. Doctors often follow standards called clinical practice guidelines, which outline the best available treatments for particular cancers. The guidelines may cover:
- tests needed to determine the stage and grade of the cancer
- the most effective treatments at each stage
- recommended time frames (e.g. how long it is reasonable to wait between receiving test results and starting treatment).
All doctors should be familiar with treatment guidelines, regardless of where they work. Some treatment centres use their own guidelines. Specialists will tailor treatment to suit your situation – this treatment should still meet the recommended best practice guidelines. Ask your doctor what guidelines they are using – if there is not an Australian guideline, they may use international guidelines. Some patients find it helpful to read the treatment guidelines, and many guidelines are available online:
Taking part in a clinical trial
Your doctor or nurse may suggest you take part in a clinical trial. Health professionals and researchers, including doctors, run clinical trials to test new or modified treatments and ways of diagnosing disease to see if they are better than current methods. People are recruited to test the new treatment (e.g. a drug, medical device, surgical method or test) to see whether it works and whether any side effects occur.
You may want to join a clinical trial so that you can have treatments that are not available outside of the study. All trials have rules about who can take part (eligibility criteria) and there may not always be a trial suitable for your specific situation. If you find a trial you’re interested in joining, ask your doctor if you meet the eligibility criteria.
Joining a clinical trial
It is voluntary to join a clinical trial. You shouldn’t feel pressured to take part or rushed into making any decisions that may affect your health or treatment. Take the time you need to decide whether to join – if you are unsure, you can ask for a second opinion from another specialist or talk to your GP. Call Cancer Council 13 11 20 for more information.
Before joining a trial, you need to give informed consent. This means you will be given written information about the key facts of the trial so that you can decide whether to take part.
You will be asked to confirm in writing (usually by signing a consent form) that you have read and understood the purpose, duration, required procedures, risks and possible outcomes of the research, and agree to take part in the trial. You will be asked to give consent again if the study changes or new information becomes available.
You can withdraw from a clinical trial at any time without giving a reason. If you do withdraw, you will still receive the standard treatment that is currently the best option for you.
Giving informed consent for treatment
Your doctor needs your agreement (informed consent) before giving you any medical treatment. To help you make a well-informed decision that’s based on your personal values, your doctor is required to give you information about:
- the proposed treatment and its benefits
- other treatment options
- possible side effects, risks and complications
- likely out-of-pocket costs (if any).
Receiving and understanding this information before voluntarily agreeing to treatment is called informed consent. You will usually be asked to sign a document indicating that you understand the information you are given and agree to treatment. If you are confused or need more information, talk to your doctor.
Adults (people aged 18 and over) can give their informed consent – or refuse or withdraw consent – if they have capacity (ability to make decisions). This means you can understand and remember information about proposed choices; understand the outcomes of your decision; and communicate your decision. If you do not have capacity, another person may be able to make decisions for you.
Consent is not needed in some instances, such as in a medical emergency or when the patient is unconscious or mentally incapacitated. If your medical team knows that you have recorded an advance care directive, they will take this into account.
Consent from children
As much as possible, children should be involved in decisions about their health care. They should be given age-appropriate information, be included in discussions about their treatment, and be encouraged to ask questions. It is important to ensure that the health care team considers your child’s health care preferences.
As people under the age of 18 are legally considered minors, it’s usually up to their parent or legal guardian to consent to health care (unless there are court orders in place that do not allow this). Generally, there is no set age at which a child or young person is able to consent to medical treatment under Australian common law. This means a minor may be able to independently consent to or refuse medical treatment if they fully understand the nature and possible results of the proposed treatment.
There are specific requirements in South Australia and Tasmania. In South Australia, a person over the age of 16 years may make their own decisions about medical treatment. In Tasmania, a child may be able to make their own health care decisions if a registered health practitioner is satisfied that the child meets certain requirements.
Talk to a lawyer if you need specific information about health care consent for children and young people in your state or territory.
Advance care planning
Advance care planning involves thinking about your future health care and discussing your treatment goals and preferences for care with your family, friends and treatment team. This helps them to understand your goals, values and beliefs, and ensures that your wishes are respected if you lose the capacity to make your own decisions.
Advance care planning can be started at any stage, whether you are feeling well or ill. Everyone has their own preferences for medical care and these can change over time. As part of advance care planning, you may record your wishes in an advance care directive and appoint a substitute decision-maker.
Advance care directive
The written record of your health care wishes may be called an advance care directive, an advance care plan or a living will. This includes details of your values, life goals and treatment preferences for doctors, family members and carers to consider if you become unable to communicate or make decisions.
You may include details of treatments that you would have or refuse to have, as well as outcomes that you don’t want and your preferences for end-of-life care. If your needs change, you can revise or cancel your advance care directive.
You can ask your doctor or hospital to place your advance care directive on your medical record. You can also save it online at My Health Record.
You can legally appoint someone to make decisions for you if at some point in the future you lose the capacity to make decisions yourself. This can include decisions about your finances, property and medical care. A substitute decision-maker should be someone you trust who understands your values and your wishes for future care. Depending on where you live, the documents for appointing this person may be known as an enduring power of attorney, enduring power of guardianship or appointment of a medical treatment decision-maker.
If you lose capacity to give consent for medical treatment and you don’t have an advance care directive or a substitute decision-maker, the law in each state and territory outlines who may make medical treatment decisions for you. This is usually someone close to you, such as your spouse or partner, family member or close friend. For more information, visit End of Life Law in Australia.
Voluntary assisted dying
Voluntary assisted dying is when a person with an incurable condition or illness chooses to end their life with the assistance of a doctor or a health practitioner – using specially prescribed medicines from a doctor. This may be an option for some people who meet all the strict conditions and follow certain steps required by laws in their state. Talk to your doctor to see if voluntary assisted dying is legal where you live.
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.