Making treatment decisions

Making sure you understand enough about the disease, the available treatments, possible side effects and any extra costs can help you weigh up the options and make a well-informed decision. 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. Check with your specialist how soon treatment should begin – often it won’t affect the success of the treatment to wait a while.

It is 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. If you are confused or want to check anything, it is important to ask your specialist questions. Try to take a list of questions 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).

Each person’s situation is different – not everyone with the same type of cancer will make the same decisions about treatment. It may help to:

• weigh up the advantages and disadvantages of each treatment, and whether it will help you meet your treatment goals
• ask if other treatments are an option (if only one type of treatment is recommended)
• consider how 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 offered to you by speaking to your specialist, cancer care coordinator or 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 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

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
• treatments that are most effective 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.

Patients are able to read treatment guidelines. Ask your doctor what guidelines they are using – they may use an international guideline if there is not an Australian version. Many guidelines are available online:

• Cancer Australia
• Cancer Council Australia Cancer Guidelines Wiki
• national optimal cancer care pathways.

Finding a specialist and deciding on treatment can be difficult. You have the right 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 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 treatment that has a lower risk with less likelihood for success.

Not everyone will want to get a second opinion. However, some people would like a second opinion but may not ask for one. This may be because they don’t realise they can or because they don’t want to upset the specialist they’ve already seen.

Reasons you may want to get a second opinion include:

• peace of mind
• ensuring you receive up-to-date advice and treatment
• getting a different point of view
• joining 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 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 who have a heavy workload don’t accept patients for a second opinion.
• 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 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.

Your doctor or nurse may suggest you take part in a clinical trial. 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 guidelines on who can participate 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 completely 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.

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 participate. 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 have rights while participating in a clinical trial, including the right to withdraw at any time without giving a reason. If you do decide to withdraw from a trial, you will not be punished, and you will receive the standard treatment that is currently the best option for you.

Visit Australian Clinical Trials for more information about clinical trials. To search for current clinical trials, visit australiancancertrials.gov.au, anzctr.org.au or clintrial.org.au.

Download our booklet ‘Understanding Clinical Trials and Research’ 

Your doctor needs your agreement (consent) before performing 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 (that is, without being pressured to do so) 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 can give their informed consent – or refuse it – if they have capacity. Capacity means they can understand and remember the information about the treatment options, make decisions based on this information, and communicate their decision. If you do not have capacity, another person may be able to make decisions for you.

Sometimes consent is not needed, such as in a medical emergency (e.g. the treatment is required to prevent death, serious damage to the patient’s health or significant pain or distress), or when the patient is unconscious or mentally incapacitated.

Consent from children and young people

As much as possible, involve your child in decisions about their care. Give them age-appropriate information, include them in discussions about their treatment, and encourage them to ask questions. Ensure that the health care team considers your child’s health care preferences.

Talk to a lawyer for specific information about consent and children in your state or territory. 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 people 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 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 possible results of the proposed treatment, and their decision may need to be supported by a doctor.

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 understand your goals, values and beliefs, and ensures that your wishes are respected should 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. Making your wishes clear can help give you peace of mind. Everyone has their own individual preferences for medical care and these can change over time.

As part of your 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 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.

If your needs change, you can choose to revise or cancel your advance care directive. Ask your doctor or hospital to place your directive on your medical record. You can also save it online to your My Health Record.

Each state or territory has different laws about advance care planning and substitute decision-makers. Talk to a lawyer to obtain specific advice about your situation. For more information about completing an advance care plan, visit the Advance Care Planning Advisory Service or call them on 1300 208 582.

Substitute decision-maker

You can legally appoint someone to make decisions for you if at some point in the future you lose the capacity to make them 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 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.

Default decision-maker

If you lose 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. They may be known as a person responsible, available consenter, statutory health attorney, or medical treatment
decision maker. They are usually approached in the following order.

for people under 16

• the parent or guardian

for people under guardianship (e.g. people with an intellectual disability)

• the appointed guardian

for people 16 and older

• 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, a public guardian or a tribunal in your state or territory will make decisions on your behalf.