Practical and legal issues

This section covers some of the practical and legal issues to consider when having palliative care. Planning for the future may help you to feel more in control and give you a sense of relief that plans have been made and you don’t need to worry about that later on.

Learn more about:

• Prognosis
• Advance care planning
• Making an advance care directive
• Appointing a substitute decision-maker
• Voluntary assisted dying

Prognosis

Prognosis means the expected outcome of a disease. Some people with advanced cancer want to know whether and when they are likely to die; others don’t wish to know. It’s a very personal decision.

If you want to know, you can ask your doctor. Every cancer diagnosis is different and everyone will have a different prognosis. Your doctor can’t say exactly what will happen to you, but they can give you an idea based on what usually happens to someone in your situation.

Your doctor will probably talk in terms of days, days to weeks, weeks to months, or months to years. As everyone responds to treatment differently, the actual time could be shorter or longer. Having an idea of how much time may be left allows you to focus on what you’d like to do.

Sometimes, families and carers want to know the prognosis even when you don’t. You can ask the palliative care team to talk to your family or carer when you’re not there.

Talking about facing the end of life is difficult and confronting for most people and their families. Sharing any emotions you are experiencing may help you come to terms with your situation.

For more on this, see Your feelings and emotional needs and Support services or call Cancer Council on 13 11 20.

Feeling low or depressed is common after a diagnosis of advanced cancer and when you are trying to adjust to changes in your health or lifestyle. Discussing this with your family and friends, your GP or a counsellor, social worker, psychologist or spiritual adviser may help.

For more on this, see Emotions and cancer, Living with advanced cancer and Facing end of life.

Advance care planning

When diagnosed with a life-limiting illness, some people start to think about what is important to them. Palliative care teams are experienced with helping patients and their families talk about their goals and preferences for care, and the amount of treatment they want for the cancer. This can involve difficult discussions about balancing the quality and length of life. This process is called advance care planning.

Advance care planning can help your family, friends and treatment team understand your goals, values and beliefs. This helps to make sure that your wishes are respected if you lose the capacity to make decisions for yourself or if you are unable to communicate your wishes for any reason. Advance care planning can involve:

• talking and making decisions about what is important to you for quality of life
• discussing what treatments you may or may not want, including where you want to receive care (e.g. at home if possible)
• completing advance care documents
• appointing a substitute decision-maker.

Advance care planning can be started any time, whether you are healthy or ill. While it may be difficult to think about, some people find knowing they have made plans for the future – whatever it may be – can be a relief.

As well as giving you peace of mind, studies show that families of people who have done advance care planning feel less anxiety and stress when asked to make important health decisions for them.

Think about what matters to you most. You may want to find a balance between what medical care can achieve and the side effects of treatments. How you feel may change as your circumstances change. And it’s okay to add to or make changes to your advance care plans. You and your family may find it useful to start thinking about these issues before they are raised by a health professional.

There is still a life to be lived and pleasures to be found and disappointments to be had. Living with advanced cancer is a different life, not just a journey towards death.

JULIE

Making an advance care directive

You can write down your goals and instructions for your future medical care in a legal document known as an advance care directive. Depending on where you live, the advance care directive may have a different name such as an advance health directive or advanced care plan. This is a legal document which provides a record of your values and treatment preferences. Doctors, family, carers and substitute decision-makers (see opposite page) must consider this record if you become unable to communicate or make decisions. You may need the help of your doctor or lawyer to complete the advance care directive forms and make sure it is signed, dated and witnessed. Some hospitals use their own forms. You can update or cancel your advance care directive at any time. Ask your doctor or hospital to place your directive on your medical record. You can also save it online at myhealthrecord.gov.au.

Appointing a substitute decision-maker

The ability to make a legally binding decision is called capacity. In general, capacity means you can understand and remember information about the available choices, understand the consequences of your decisions, and communicate your decisions. A substitute decision-maker is someone you legally appoint to make medical decisions for you if you lose capacity in the future. It should be someone you trust, who understands your values and preferences for future care, and is able to make decisions you would want.

Depending on where you live, the documents for appointing this person may be called an enduring power of guardianship, appointment of enduring guardian or medical treatment decision-maker, or it may be nominated in an advance care directive. An enduring power of attorney is usually for financial/legal matters. If you lose capacity and don’t have an advance care directive or substitute decision-maker, the law in each state and territory outlines who may make medical treatment decisions for you. This is usually someone close to you, such as your spouse, partner, family member or close friend. For more information visit end-of-life.qut.edu.au.

For more on this, see Cancer care and your rights.

Voluntary assisted dying

Voluntary assisted dying (VAD) is when a person with an incurable, life-limiting condition or illness chooses to end their life with the assistance of a doctor or health practitioner – using specially prescribed medicines from a doctor. “Voluntary” means that it is the choice of the unwell person to end their life.

VAD is not part of any palliative care services. However, if you are considering this option, know that palliative care remains available to you right up until the end of your life, no matter how you die. Many people accessing VAD will want palliative care as well, and that’s okay.

As of December 2023, laws around VAD have commenced in all Australian states. VAD remains unlawful in the Northern Territory and Australian Capital Territory (December 2023).

VAD is only available to people who meet all the strict conditions and follow certain steps as required by the laws in their state or territory.

It is essential to check the latest updates and know the law and rules around making this choice. Laws and rules around VAD may be different in the state or territory where you live.

For information and updates on VAD for your state or territory, visit Queensland University of Technology’s End of Life Law in Australia website at end-of-life.qut.edu.au/assisteddying.

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