Understanding Palliative Care
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Understanding Palliative Care
Common questions about palliative care
Answers to some common questions about palliative care are below.
Palliative care aims to maintain quality of life for people with a life-limiting illness. It is about living in a way that is meaningful to you, within the constraints of your illness. It’s not simply about dying. One reason that some people don’t access palliative care services early – or at all – is because they fear that it means they have given up hope or are going to die soon. This is certainly not the case for everyone referred to palliative care.
Depending on your needs, you may use palliative care services occasionally or you may use them continuously for a few weeks or months. The number of people receiving palliative care for several years is increasing. This is because improved cancer treatments can sometimes stop or slow the spread of advanced disease and relieve side effects for a number of years, and the cancer may be considered a chronic (long-lasting) disease. You can have palliative care while still having active treatment for the cancer. There is no need to wait until the end of life.
The reality is that some people do die from cancer. As people draw closer to death, the end-of-life aspect of palliative care becomes important.
The palliative care team is there to help make life easier for you, your family and carers in a variety of ways, including:
- If you’re living at home, the team can call or visit regularly. This can reduce feelings of isolation and fear, help your carers look after you, and keep you out of hospital (if that is your wish).
- The team can help dispel any myths and misconceptions about advanced cancer you or your family and carers have.
- Your care is usually coordinated by one person who communicates with the team on your behalf.
- The team can help you to make treatment decisions and to prepare for the changes that lie ahead.
- Adjustments around the house can make things easier and safer for you, your family and carers. The team can suggest suitable equipment and aids (e.g. a shower chair).
- The team can assist you with planning for the future, such as thinking about the type of care you may need and where you would prefer to receive care.
- Your palliative care service may offer a number you can call for advice in an emergency at any time of day or night.
- The team can provide emotional support – a social worker, counsellor or psychologist can help you work out your goals and how to achieve them. These goals may be specific end-of-life wishes, but can also simply involve getting the most out of each day (e.g. enjoying time with friends and family).
- The social worker or counsellor can help you and your family deal with loss or grief. Counselling can be worthwhile to help you deal with the changes advanced cancer brings.
You can still have active treatment to shrink or stop the cancer growing while receiving palliative care. The palliative care team will work with your cancer specialists to manage side effects from treatment and help maintain your quality of life. Cancer treatments such as surgery, chemotherapy, immunotherapy, targeted therapy and radiation therapy may also be used as part of palliative treatment. In this case, the aim is not to control the cancer but to relieve symptoms.
Palliative care sees death and dying as a normal part of life. It does not try to shorten life, nor does it try to make life longer. Instead, the palliative care team provides services to improve your quality of life. This may include managing pain and other symptoms. Some studies show that if symptoms, such as pain, are controlled, people will feel better and may live longer.
It is important to understand the difference between palliative care and euthanasia or voluntary assisted dying. Euthanasia is the act of deliberately ending the life of a person with an incurable condition or illness. Voluntary assisted dying is when a person ends their own life with the help of a doctor. Palliative care, however, does not attempt to hasten death. When this information was last reviewed (May 2019), euthanasia and voluntary assisted dying were illegal in Australia. Voluntary assisted dying for people who meet strict criteria became legal in Victoria from 19 June 2019. Although the laws in some other states and territories are under review (visit end-of-life.qut.edu.au for updates), euthanasia and voluntary assisted dying are not part of palliative care.
The coordinated medical and support services of palliative care can help maintain comfort and quality of life throughout the advanced stages of illness. If you urgently need to talk to somebody because you are thinking about ending your life, call Lifeline on 13 11 14 for free, confidential telephone counselling.
Once you know the cancer is advanced and likely to shorten your life, it is a good idea to start exploring the services that can be provided by palliative care. Talk to your cancer care team about a referral to palliative care. You can find out what the different team members do and which services might be relevant now or in the future.
Sorting out care sooner rather than later will reduce stress on you and your family. It will give you time to better understand and manage any physical symptoms (such as pain or nausea), and to consider your practical, emotional and spiritual needs.
Some people live comfortably for months or years after a diagnosis of advanced cancer, and can be supported by palliative care services as needed throughout this time. For others, the cancer advances quickly so that their care is focused on end-of-life needs soon after their referral to a palliative care service. Whatever stage you’re at, your palliative care team will work with you to continually assess your changing needs and adjust your care.
In most cases, a GP or community nurse will coordinate your palliative care. If your care needs increase beyond their area of expertise, they will seek advice from a specialist palliative care service, but you may not see the palliative care specialist yourself.
If you have more complex health needs, such as symptoms that are difficult to control, your care may be coordinated by a specialist palliative care service. You will usually see a palliative care specialist, or sometimes a nurse practitioner, as an outpatient. You may also need to stay in hospital for short periods to have your medicine adjusted or get your pain under control.
The specialist palliative care service will continue to consult your cancer care team about your treatment. If your condition stabilises or improves, you may not need to see the specialist palliative care service for periods of time or you may be discharged from palliative care.
Your palliative care team will discuss ways you can remain independent for as long as possible. For example, they may suggest modifications or services to help you stay at home (such as installing a ramp so you don’t have to use steps), or recommend equipment to help conserve your energy (such as a walking frame). For many people, maintaining control over day-to-day decisions is important – the team will respect your wishes if you don’t want to take up their suggestions.
You can have palliative care in different places depending on your situation, where you live, and whether you have family or friends who can help. In many cases, you and your family can choose where you want to receive palliative care. This may be at home, at a residential aged care facility or other out-of-home facility, or it may be in a hospital or specialist palliative care unit (hospice). People receiving palliative care often move between these places as their needs change.
An important role for the palliative care team is to assess the best place for your care. Many people prefer to receive care at home. The team will respect your wishes where possible. They will consider your home environment, your support networks, and what organisations and individuals are available in your area to help you, and then discuss the possibilities with you, your family and carers.
If you are cared for at home, you (and anyone who cares for you) can be supported by community-based palliative care services. You can decide at any stage to change your mind about staying at home and explore other options.
Depending on your situation, it may not always be possible to stay at home, even with home help. Hospitals and palliative care units are designed for short-term stays. If you cannot return home and require care for several months or more, the palliative care team will talk to you and your carers about options for your ongoing care, such as a residential aged care facility.
The federal, state and territory governments fund a range of palliative care services that are free in the public health system, whether you receive care at home or as an inpatient.
However, sometimes you may need to contribute to the costs of care. Some examples of additional costs are:
- hiring specialised equipment for use at home
- paying for medicines
- paying for your own nursing staff if you choose to stay at home and require 24-hour assistance
- paying an excess if you have health insurance that covers palliative care and you go to a private hospital
- using respite services that charge a fee
- paying the fee of a private allied health professional, such as a psychologist, that isn’t fully covered by Medicare
- paying for complementary therapies, such as massage therapy and acupuncture.
If you are admitted to a public hospital, palliative care unit or other facility as a private patient and you have private health insurance, contact your health fund to check what is covered. Talk to your social worker about what financial assistance is available for patients and carers from Centrelink and other organisations in your area.
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.