Making treatment decisions

Deciding whether to have treatment for advanced cancer can be difficult. 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. You may want to consider what quality of life means to you. Perhaps you would choose chemotherapy if it meant you could have two good weeks each month. Or you might value being able 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.

Record the details – When your doctor first tells you that you have advanced cancer, you may not remember everything you are told. Taking notes can help you or your might like to ask. It is a good idea to have a family member or friend go with you 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 doctor’s recommendations and 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 you would prefer 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 developed a discussion starter that can help you reflect on your preferences for care and talk about them with your family. See dyingtotalk.org.au/discussion-starter.

Should I join a clinical trial?

For some people with advanced cancer, taking part in a clinical trial may be a way to have new therapies. 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 seem worthwhile dealing with treatment side effects for a primary cancer. But when a cure is unlikely, you may not want to have treatments that leave you feeling exhausted or sick, even if they may help you to live longer.

• Before you start or stop treatment, think about the benefits and drawbacks. 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.
• Check with your health care team whether treatment can be adjusted.
• Speak to professionals, such as a counsellor or social worker, who can help you decide what is important to you.

Refusal of medical treatment

You have the right to consent to, stop or refuse any treatment offered. If you stop or refuse treatment, your medical team must be confident that you understand the treatment proposed and the consequences of not having it. You can stop or refuse each treatment separately – you do not have to accept treatment on an all-or-nothing basis.

In South Australia, you can complete an advance care directive, which your treating doctors must follow. You can appoint a substitute decision-maker to make treatment decisions if you are no longer able to do so.