Making treatment decisions

It can be difficult to decide what treatment to have for advanced cancer. Some people choose treatment even if it offers only a small benefit for a short period of time. Others decide not to have active treatment for the cancer, but to treat symptoms to reduce discomfort and maintain quality of life. What you decide may change over time.

You may want to think about what quality of life means to you and the impact of treatment. Perhaps you would choose chemotherapy if it meant you could have two good weeks each month. Or it might be more important to you to spend as much time as possible with family and friends, without the disruption of tests, treatment or hospital visits.

Know your options – Understanding the disease, the available treatments and possible side effects can help you weigh up the options and make a well-informed decision. It can also help you feel more in control to have all the information you can about the diagnosis.

Record the details – When your doctor first says you have advanced cancer, you may not remember everything you are told. Taking notes can help. If you would like to record the discussion, ask your doctor first. It’s a good idea to have a family member or friend come to appointments to join in the discussion, write notes or simply listen.

Ask questions – If you are confused or want to check anything, it is important to ask your specialist questions. Try to prepare a list before appointments. If you have a lot of questions, you could talk to a cancer care coordinator or nurse.

Consider a second opinion – You may want to get a second opinion from another specialist to confirm or clarify your specialist’s recommendations or reassure you that you have explored all of your options. Specialists are used to people doing this. Your GP or specialist can refer you to another specialist and send your initial results to that person. You can get a second opinion even if you have started treatment or still want to be treated by your first doctor. You might decide to be treated by the second specialist.

Talking about treatment decisions – Discussing the kind of care you might want in the future can be difficult. However, talking to your family about this can help them if you become too sick to make decisions, and they need to make decisions about your health care for you. Palliative Care Australia has a discussion starter that can help you reflect on your preferences for care and talk about them with your family.

Should I join a clinical trial?

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. For example, if you join a randomised trial for a new treatment, you will be chosen at random to receive either the best existing treatment or the modified new treatment. Over the years, trials have improved treatments and led to better outcomes for people diagnosed with cancer. You may find it helpful to talk to your specialist, clinical trials nurse or GP, to get a second opinion. If you decide to take part in a clinical trial, you can withdraw at any time. For more information, visit Australian Cancer Trials.

Download our booklet ‘Understanding Clinical Trials and Research’

When treatment seems too much

It can feel worth it to deal with side effects for a primary cancer. But when a cure is unlikely, you may not want treatments that leave you exhausted or sick, even if they may help you to live longer.

• Before you start or stop treatment, think about the benefits, risks and burdens. Decisions rarely have to be made immediately.
• Ask yourself if you are feeling unwell from the side effects of the treatment, from the advancing disease or from the emotions of the diagnosis. Some or all of these may be able to be treated, and you may have a different outlook if you feel better.
• Check with your health care team whether your treatment can be adjusted to limit side effects.
• Speak to professionals, such as your doctor, a counsellor or social worker, who can help you decide what is important to you.

Refusal of medical treatment

If you are well enough to make clear decisions (called having capacity), you have the right to refuse any treatment offered, even if it goes against your doctor’s recommendation. Your medical team will usually still explain the proposed treatment and what will happen if you don’t have it. You can stop each treatment separately and at any time – you do not have to accept treatment on an all-or-nothing basis.

In all states and territories, you can complete an Advance Care Directive that your health care team (nurses, doctors, paramedics, etc) must follow. This is a legal document in which you can give instructions about future medical treatment, including any treatment that you do not want to have. It will apply if you get too unwell (lose capacity) to make decisions.

If you have capacity, you can also appoint a substitute decision-maker to make treatment decisions if you become unable to.