When you are diagnosed with cancer, you have to make a number of decisions about your treatment. This section sets out your rights in being involved in treatment decisions. It also outlines how you can become informed so that you and your specialist can decide on an appropriate treatment plan that offers the greatest chance of the best possible outcome.

Gathering information

Sometimes it is difficult to decide on the type of treatment to have. Making sure you understand enough about your illness, the treatment and its side effects will help you to make your own decisions.

You may feel that everything is happening so fast that you don’t have time to think things through. You have the right to delay your decision until you feel you have had enough time to consider all your options. For most cancers, there’s no urgency to decide about treatment straightaway.

Many people like to have a family member or a friend go with them to the specialist appointment to take part in the discussion, take notes or simply listen. If you are confused or want clarification, you can ask for further explanation. It may also be helpful to write down any questions you have and take them to the appointment.

You might like to ask if you can record the consultation – some treatment centres provide recording equipment, or you might have to take your own (many mobile phones have a recording function).

CAN.recall is a smartphone app that features questions to ask your oncologist or surgeon, and it includes the ability to record the answers. Visit Rare Cancers Australia to download the app .

Decision-making steps

If you are concerned that you need to make a quick decision about your treatment, ask your specialist if it’s okay to take more time to consider your options.

• Weigh up the advantages and disadvantages of each treatment.
• Consider how side effects might affect you, especially if they will have an impact on your lifestyle. If you have a partner, it may help to discuss any side effects with them.
• If only one type of treatment is recommended, ask if other treatments are an option.
• Find out more about the treatment choices offered to you by: speaking to your specialist, cancer care coordinator or Cancer Council 13 11 20; getting a second opinion; and talking to family, friends or people who have had the same cancer.
• If you’re not happy with the information you are given – or how it is given – share your concerns with your doctor or the treating hospital or centre.

Giving informed consent

Your doctor is required to inform you about the benefits and risks that are relevant to you. Receiving and understanding all of this information before voluntarily agreeing to treatment (that is, without being pressured to do so) is called informed consent. Adults can give their informed consent – or decline it – if they can understand, remember and make choices about the information provided.

Before giving informed consent to treatment, you could ask:

• What are the treatment options?
• Are there any clinical trials I could join?
• What are the expected outcomes of each option, including complications and side effects?
• What is the chance that each outcome will occur?
• What methods can be used to prevent or relieve side effects?
• Are there other treatments that you aren’t recommending? Why?
• What will happen if I don’t have treatment?

Sometimes consent is not needed, such as in a medical emergency.

Capacity

Your ability to make decisions is called capacity. If there is a chance you might ever lose the capacity to give consent, you may consider advance care planning (see below), which can involve appointing someone to make medical, financial and legal decisions for you (substitute decision-maker). The documents for appointing this person may be known as an enduring power of attorney, an enduring guardian or a power of guardianship.

Person Responsible

If you lose capacity to give consent and you haven’t appointed a substitute decision-maker, consent may be given by a Person Responsible. They are usually approached in the following order:

For people under 16

• the parent or guardian

For people under guardianship (e.g. intellectually disabled people)

• the appointed guardian

For people 16 and older

• the appointed substitute decision-maker, e.g. enduring guardian or enduring power of attorney
• the most recent spouse, including a de facto spouse or same-sex partner, with whom the person has a close and continuing relationship
• an unpaid carer
• a close friend or relative

If no-one is available, the public guardian or a state or territory tribunal will make decisions on your behalf.

Advance care planning

Advance care planning involves thinking about your future health care and discussing your wishes with your family, friends and treatment team. The written record of your wishes may be called an advance care plan, an advance care directive or a living will. Visit Advance Care Planning Australia for specific information about advance care planning in your state or territory.

Consent and children

Australian law generally recognises that people aged 16 and older can make their own health care decisions, and the law requires doctors to obtain their consent before treatment.

As patients under the age of 16 are legally considered minors, it’s usually up to their parent or legal guardian to consent to health care. However, some states and territories have laws that allow certain minors to make decisions about their own care.

The law also recognises that children become more competent as they grow up, and that their consent and input can be sought on a case-by-case basis. For example, a 15-year-old may have more say in their health care than a child aged 11. The young person may be required to show that they understand the nature and consequences of the proposed treatment, and their decision may need to be supported by a medical practitioner.

Talk to a lawyer for specific information about consent and children in your state or territory.

Getting a second opinion

Finding a specialist and deciding on treatment can be difficult. It may help to talk to more than one specialist to consider your treatment options or to confirm the recommended treatment. This is called a second opinion, and it may help people who face a choice between high-risk treatment that has a chance of a better outcome, and treatment that has a lower risk with less likelihood for success.

Not everyone will want to seek a second opinion. However, some people would like a second opinion but may not ask for one, perhaps because they don’t realise they can or because they don’t want to upset the specialist they’ve been referred to.

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 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 write a referral to the specialist of your choice.

Seeking another opinion

• You have the right to ask for as many opinions as you like.
• 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 are not offended. They may even be able to help you find someone.
• Some specialists don’t accept patients for a second opinion because they have a heavy workload.
• Second opinions can take time (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 that person.

Treatment guidelines

While every case of cancer is different, your specialist should recommend treatment that has a strong research base. This is called evidence-based medicine.

Guidelines are developed by institutions and experts to provide information about different types of cancer. They are regularly reviewed and updated in line with the latest clinical evidence.

The guidelines may cover:

• what tests are needed to determine the stage and grade of the cancer
• the treatments that are most effective
• the urgency of treatment, for example, how long it is reasonable to wait between receiving test results and starting treatment
• timely and appropriate access to tests and 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.

Patients are able to read the treatment guidelines, but guidelines aren’t available for every type of cancer. Treatment guidelines for breast cancer, gynaecological cancers and lung cancer can be found at Cancer Australia's website. You can find guidelines for other cancer types on Cancer Council Australia’s Cancer Guidelines Wiki.

Taking part in a clinical trial

Doctors conduct clinical trials to test new or modified treatments to see if they are effective. Research shows that people who take part in clinical trials generally have better outcomes than those treated outside of clinical trials.

This section explains some aspects of clinical trials. For more detailed information download or order a free copy of Understanding Clinical Trials and Research.

How to find a clinical trial

If you would like to take part in a clinical trial, you can talk to your specialist, who may be running a suitable trial or know of one being run elsewhere. If not, they may be able to help you find one. Some hospitals have clinical trials or research nurses who can help.

Trials are available only in select treatment centres, so you might have to travel to a different location to take part.

If you hear or read in the media about a clinical trial, ask your doctor for more information. Remember that trials have guidelines on who can participate, and you may not be eligible to join – for example, the trial may be for people with other types of cancer.

Up-to-date information on clinical trials can also be found online.

Information on clinical trials

• Victorian Cancer Trials Link
• Australian New Zealand Clinical Trials Registry
• Australian Cancer Trials
• Cancer Trials Australia

What happens in a randomised controlled trial?

If you join a randomised controlled trial, you will be selected at random to receive the best existing treatment (the control) or a promising new treatment. Some people are reluctant to join a clinical trial because they worry they’ll be randomised into the control group rather than the group receiving the new treatment. The control group is the standard care, so you will still be receiving evidence-based treatment.

You have to give consent to take part in a clinical trial, and you have rights while participating, including the right to withdraw from the trial at any time; withdrawing won’t jeopardise your cancer treatment. If you are unsure about joining a clinical trial, ask for a second opinion from an independent specialist or talk to your GP.

"The trial I was on ran initially for three years, but my involvement only lasted a year and a half. I had to have check-ups every three months – a physical examination and blood tests." – Julie

Key points

• You will have to make many decisions about your treatment. Being informed about the treatment and its side effects will help you to decide.
• Take the time to consider all of your treatment options. If you are concerned that you need to make a decision quickly, ask your specialist if it’s okay to take more time.
• Write down questions to ask your specialist, and consider taking someone with you to the consultation. You may record the conversation or take notes.
• Your specialist is required to inform you about the potential benefits and risks of treatment. Receiving and understanding all the relevant information before agreeing to a procedure is called informed consent.
• A doctor needs your consent (agreement) to perform any treatment, unless it’s an emergency. People under 16 usually need a parent or guardian to consent on their behalf, but this can depend on the individual situation.
• You may want to think about your future health care and discuss your wishes with your family, friends and treatment team. This is called advance care planning.
• It can help to talk to more than one specialist to consider other treatment options or to confirm a recommended treatment (second opinion).
• For some types of cancer, there are evidence-based guidelines covering issues such as what tests are needed and how urgent treatment is.
• Doctors conduct clinical trials to test new or modified treatments to see if they are more effective than the best existing treatment.

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