Understanding Palliative Care
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Understanding Palliative Care
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. They won’t be able to give you an exact answer, but can give a general indication of your life expectancy, based on an average patient. Your doctor will probably talk in terms of days to weeks, weeks to months, or months to many months. As everyone responds to treatment differently, the actual time could be shorter or longer.
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.
Dealing with death is difficult and confronting for most people and their families. Talking about any 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. Talking to your family and friends, your GP or a counsellor, social worker, psychologist or spiritual adviser may help.
Advance care planning
When diagnosed with a life-limiting illness, some people 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. It can involve:
- completing advance care documents
- appointing a substitute decision-maker.
While it may be difficult to think about, some people find planning ahead helps them. Advance care planning can be started at any stage, whether you feel well or ill. It allows you to share your preferences for your future health care if you become unable to make decisions for yourself.
Making your wishes clear can help give you peace of mind. Think about what matters to you most. Would 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? Where would you like to be cared for? Everyone has their own individual preferences, and these will often change as your circumstances change. You and your family may find it useful to start thinking about these issues before they are raised by a health professional.
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.
Making an advance care directive
You can write down your goals and instructions for your future medical care in a 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 document provides a record of your values and treatment preferences. Doctors, family, carers and substitute decision-makers can consider this record if you become unable to communicate or make decisions.
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. You can legally appoint someone to make medical decisions for you if in the future you lose capacity to make these decisions yourself.
A substitute decision-maker should be someone you trust. They should understand your values and preferences for future care and be able to make decisions you would have wanted. 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 medical treatment decision maker.
Each state or territory has different laws about advance care planning. For more information about completing, changing or cancelling an advance care plan, call the Advance Care Planning Advisory Service on 1300 208 582, or visit advancecareplanning.org.au.
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This information is reviewed by
This information was last reviewed August 2021 by the following expert content reviewers: Dr Cynthia Parr, Specialist in Palliative Care, HammondCare and Macquarie University Hospital, NSW; Dr Lisa Cuddeford, Clinical Lead, WA Paediatric Palliative Care Service, WA; Dr Laura Kirsten, Principal Clinical Psychologist, Nepean Cancer Care Centre, NSW; Penny Neller, Project Coordinator, National Palliative Care Projects, Australian Centre for Health Law Research, Queensland University of Technology, QLD; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; A/Prof Peter Poon, Director, Supportive and Palliative Care, Monash Health, and Adjunct Associate Professor, Monash University, VIC; Dr Kathy Pope, Radiation Oncologist, Peter MacCallum Cancer Centre, VIC; Kate Reed-Cox, Nurse Practitioner National Clinical Advisor, Palliative Care Australia; Juliane Samara, Nurse Practitioner, Clare Holland House – Specialist Palliative Aged Care, Calvary Public Hospital, ACT; Annabelle Solomon, Consumer; Silvia Stickel, Consumer; Kaitlyn Thorne, Manager, PalAssist, Cancer Council Queensland; Kim Vu, Consumer; Rosie Whitford, Social Worker – Grief, Bereavement and Community Palliative Care, Prince of Wales Hospital, NSW.