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. If you are referred to palliative care, it does usually mean that at some stage the cancer will shorten your life.
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 treatment. If you ask for an estimate of the time you have left to live, your doctor will probably talk in terms of days to weeks, weeks to months, or months to many months. The actual time could be shorter or longer. Your team will work with you to ensure that you receive the best care to meet your changing needs.
Some families and carers want to know the prognosis even when you don’t. Let the palliative care 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 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. Consider sharing your thoughts with family and friends or speaking confidentially to a trained counsellor, social worker, psychologist or spiritual adviser.
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.
You and your family may find it very useful to start thinking about these issues before they are raised by a health professional. 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? Everyone has their own individual preferences and these will often change as your circumstances change.
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 wishes for your future medical care in what is known as an advance care directive. Depending on where you live, it may be called an advanced personal plan or advance health directive, and it is sometimes known as a “living will”. This document provides a record of your values and treatment preferences for doctors, family, carers and substitute decision-makers to consider if you become unable to communicate or make decisions. You can revise 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.
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 or 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.
This information is reviewed by
This information was last reviewed May 2019 by the following expert content reviewers: Prof Katherine Clark, Clinical Director, Palliative Care, Northern Sydney Local Health District Cancer & Palliative Care Network, and Conjoint Professor, Northern Clinical School, University of Sydney, NSW; Richard Austin, Social Worker, Specialist Palliative Care Service, TAS; Sondra Davoren, Manager, Treatment and Supportive Care, McCabe Centre for Law and Cancer, VIC; A/Prof Brian Le, Director of Palliative Care, Victorian Comprehensive Cancer Centre – The Royal Melbourne Hospital and Peter MacCallum Cancer Centre, VIC; Cathy McDonnell, Clinical Nurse Consultant, Concord Centre for Palliative Care, Concord Hospital, NSW; Natalie Munro, Team Leader, PalAssist, QLD; Penelope Murphy, 13 11 20 Consultant, Cancer Council NSW; Kate Reed, Nurse Practitioner Clinical Advisor, Palliative Care Australia; Merrilyn Sim, Consumer.