A prognosis is the expected outcome of someone's disease. Some people want to know whether and when they will die from cancer; others don't wish to know. If you are referred to palliative care, it does usually mean that at some stage you may die from the cancer.
No-one can tell you exactly when you are going to die. Your doctors may be able to give a general indication of your life expectancy, based on an average patient, but everyone is unique and responds differently to different kinds of care. If you ask for an estimate of the time you have left to live, your doctor will probably talk about your remaining life span in terms of days to weeks, weeks to months, or months to many months. The actual time could be shorter or longer.
Some families and carers want to know the prognosis even when you don't. Let the team know your preferences and whether they can talk to your family or carer when you're not there.
Dealing with death is difficult and confronting for most people and their families, whatever their cultural background or religious beliefs. Talking over any fears, worries, guilt or other emotions you are experiencing may help you come to terms with your situation.
Feeling low or depressed is common after a diagnosis of advanced cancer. Consider sharing your thoughts with family and friends or speaking confidentially to a trained counsellor, social worker, psychologist or spiritual adviser. You can also see Emotions and cancer and Facing end of life or call Cancer Council on 13 11 20.
Advance care planning
When faced with a life-limiting illness, some people think about what they'd like to achieve in the time they have left. 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. While it may be confronting, many people also find this process empowering. It can be started at any stage, whether you are feeling well or ill. It enables you to convey your preferences for your future health care if you become unable to communicate your wishes.
It's very useful for you and your family to think about these issues before they are raised by a health professional. What matters to you most? Might you choose to have less time if it means feeling relatively well or would you want as much time as possible even if treatment would lead to unpleasant side effects? Everyone has their own individual preferences and these can change over time.
Advance care planning doesn't mean you have given up or will die soon. Your needs might change over time and it is a good idea to regularly review your plan. 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, carers and close friends.
Advance care directive
You can write down your treatment wishes in what is known as an advance care directive, commonly called a "living will". Depending on where you live, it may be known by a similar term such as advanced personal plan or advance health directive. This provides a record of your preferences for doctors, family and carers to consider if you become unable to communicate or make decisions. 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 at myhealthrecord.gov.au.
You can legally appoint someone to make decisions for you if at some point in the future you're not able to make them yourself. This can include decisions about your finances, property, medical care and lifestyle. A substitute decision-maker should be someone you trust and 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 enduring guardian.
Each state or territory has different laws about advance care planning. For more information about completing an advance care plan, call Cancer Council 13 11 20 or the Advance Care Planning Advisory Service on 1300 208 582, or visit advancecareplanning.org.au or palliativecare.org.au.
"I was first diagnosed with bowel cancer two years ago. I had a year of intensive treatment and thought I was in remission, but then a PET scan revealed advanced cancer. The oncologist recommended another seven months of chemotherapy treatment. The treatment is palliative – it is trying to stop the cancer spreading further.
"I've used many of the hospital services as well. My oncologist arranged a meeting with the counsellor. The social worker gave me practical advice, and the occupational therapist modified our home to suit my illness. My spiritual needs are met by the chaplain, and I know the palliative care coordinator will be there to help me.
"My main worry was transport: 'How will I get to hospital for all these appointments?' My husband is 89 and can drive only in the local area. Our children are all working and I wanted to lessen the impact on them.
"The local community care service put me in touch with a volunteer palliative care group. The volunteers are marvellous. They drive me to all my appointments, but also offer mentoring, succour and friendship. Cancer Council helped me find house cleaning, which has taken such a burden off me and my husband.
"With all these palliative care services, I feel like I have a window of time to get my house in order. I want my transition to be easy for my family. I've taught my children how to live, and now I'm teaching them how to die. Strangely, it's an experience I wouldn't have missed – it's brought so many beautiful people into my life and renewed my faith that kindness and love are at the core of all humanity.
"I'd like people with advanced cancer to know that there are a myriad of services. You only have to ask; you are not alone."
Expert content reviewers:
Dr Jan Maree Davis, Area Director, Palliative Care Services, South Eastern Sydney Local Health District Southern Sector, and Conjoint Lecturer, University of New South Wales, NSW; Gabrielle Asprey, Facilitator, Telephone and Internet Support Groups, Cancer Council NSW; Julie Butterfield, Consumer; Dr Kathryn Dwan, Senior Policy Officer, Palliative Care Australia; Philippa Kirkpatrick, National Policy Manager, Palliative Care Australia; Amanda Maple, 13 11 20 Consultant, Cancer Council SA; Eileen McNally, Palliative Care Psychosocial Lead, Canberra Hospital, ACT; Patricia Pannell, Clinical Nurse, Central Adelaide Palliative Care Service, SA.