Making treatment decisions

Thursday 1 December, 2016

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On this page:  When treatment seems too much | Talking with doctors | A second opinion | Taking part in a clinical trial

Sometimes it is difficult to decide on whether to have treatment for advanced cancer. Some people choose treatment even if it offers only a small benefit for a short period of time. Others want to make sure the expected benefits outweigh the side effects so that they have the best quality of life.

Some people decide not to have active treatment for the cancer, but to treat symptoms to reduce pain and discomfort. 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 treatment.

Understanding the disease, available treatments and possible side effects can help you weigh up the pros and cons of different treatments and make a well-informed decision that’s based on your personal values. You can also discuss the options with your family and friends or with your doctor, or call Cancer Council 13 11 20.

Talking about future care

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 are so sick that you can’t 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 to your family.

When treatment seems too much

To cure a primary cancer, it can seem worthwhile having treatment with side effects. But when a cure is unlikely, it may seem less reasonable to choose treatments that leave you feeling exhausted or sick, even if they will help you to live longer.

  • Before you start or stop treatment, think about the benefits and drawbacks. Rarely do decisions have to be made quickly.
  • Ask yourself if you are feeling unwell from the side effects of the treatment, from the advancing disease or from emotional overload. Some or all of these may be able to be treated.
  • Talk with others, particularly your doctor and those close to you. Their input and support may help clarify your thoughts.
  • 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 accept or refuse any treatment offered. For your refusal to be accepted, you must understand the nature of the treatment proposed and the consequences of not having it. You can refuse each treatment separately – you do not have to accept treatment on an all-or-nothing basis.

In some states and territories, you will need to complete a refusal of treatment certificate, which your treating doctors must follow. See advance care planning.

Talking with doctors

When your doctor first tells you that you have advanced cancer, you may not remember the details about what you are told. Taking notes or recording the discussion may help. Many people like to have a family member or friend go with them to take part in the discussion, take notes or simply listen.

If you are confused or want clarification, you can ask for further explanation – see a list of suggested questions. If you have several questions, you may want to talk to a nurse or ask the office manager if it is possible to book a longer appointment.

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 doctor 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 may decide you would prefer to be treated by the doctor who provided the second opinion.

"Always, always get a second opinion. Second opinions will either confirm what you’ve already been told or present different options to weigh up." – Peter

Taking part in 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. For some people with advanced cancer, participation in a clinical trial may be a way to access new therapies.

It may be helpful to talk to your specialist or a clinical trials nurse, or to get a second opinion about participating in a clinical trial. If you decide to take part, you can withdraw at any time. For more information, see Understanding Clinical Trials and Research, call Cancer Council 13 11 20 or visit Australian Cancer Trials.

Expert content reviewers:

Dr Maria Ftanou, Lead Clinical Psychologist, Peter MacCallum Cancer Centre and Research Fellow, Melbourne School of Population and Global Health, University of Melbourne, VIC; Dr Kathryn Dwan, Senior Policy Officer, Palliative Care Australia; Alison Hocking, President-Elect, Oncology Social Work Australia, VIC; Philippa Kirkpatrick, National Policy Manager, Palliative Care Australia; Prof Liz Lobb, Professor of Palliative Care (Allied Health), Calvary Health Care, Kogarah, NSW; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; Hamish Park, Consumer.

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