There are many misconceptions about the purpose of palliative care and what it involves. Many people think that it is simply end-of-life care, or that it means stopping cancer treatment, or that it is a sign of giving up hope. Our answers to common questions may give you a clearer picture of how palliative care can enhance quality of life for people with advanced cancer.
Questions on this page:
- Does palliative care mean end-of-life care?
- Does it shorten or lengthen life?
- Is palliative care the same as euthanasia?
- Does it mean giving up hope?
- When can I start palliative care?
- Can I still have cancer treatment?
- Who will coordinate my care?
- Where will I receive palliative care?
- Do I have to pay for palliative care?
- Will I lose my independence?
- How can palliative care help?
Does palliative care mean end-of-life care?
Palliative care aims to provide quality care and quality of life for someone living with a life-limiting illness. It is about living for as long as possible in the most satisfying way you can, within the constraints of your illness. It’s not simply about dying.
While some people may use palliative care services for only a few weeks or months, the number of people receiving palliative care for several years is increasing.
Because improved treatments can help stop the spread of cancer and relieve side effects, cancer may be considered a chronic (long-lasting) disease. You can have palliative care while you are still having active treatment for the cancer. You do not need to wait until the end of life or until you have stopped active treatment.
One reason that some people don’t access palliative care services early – or at all – is because they have the fear or misconception that by doing so, it will mean they have given up hope or are going to die soon. This is certainly not the case for everyone referred to palliative care, nor does it mean that your doctor has given up hope.
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.
Does it shorten or lengthen life?
Palliative care does not try to end life sooner, but nor does it try to prolong life. Instead, the health care team provides multidisciplinary care to enhance quality of life. This may include managing pain and other symptoms.
Some studies show that controlling symptoms, such as pain, can lead to people feeling better and living longer.
Is palliative care the same as euthanasia?
Palliative care and euthanasia are not the same thing. Euthanasia is the act of deliberately ending the life of a person with an incurable condition. Physician-assisted suicide is when a person ends their own life with the help of a doctor. Both euthanasia and physician-assisted suicide are illegal for all parties involved in every state and territory in Australia. They are not part of palliative care practice.
The coordinated medical and support services of palliative care can help a person maintain comfort and quality of life throughout the advanced stages of their illness. Palliative care does not attempt to end a person’s life.
Does it mean giving up hope?
Some people avoid palliative care services because they hope that a cure will be found for their cancer. However, palliative care does not mean giving up hope.
People can have palliative care for several months or years and sometimes still have active treatment for the cancer.
You can continue to enjoy many aspects of your life. You might take pleasure in completing projects, spending time with friends, or exploring new hobbies. Recording your feelings through a creative activity, such as writing or art, could help you to make sense of your situation.
As the disease progresses, your goals and the things you are hoping for may change. For example, you might hope to live as comfortably as you can for as long as possible. Palliative care can help you achieve this.
When can I start palliative care?
Once you know your cancer is advanced, it is a good idea to start exploring the options provided by 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 problems earlier rather than later will reduce stress on you and your family. It will allow 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 their diagnosis of advanced cancer; they can be supported by palliative care services as needed throughout this time. For other people, the cancer advances rapidly 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 team will continually assess your changing needs and adjust your care.
Can I still have cancer treatment?
You can still have treatment that aims to cure advanced cancer while receiving palliative care. The palliative care team will work with your team of cancer specialists to help maintain your quality of life.
Cancer treatments such as surgery, chemotherapy, targeted therapies and radiotherapy may also be used as part of palliative treatment. In this case, the aim is not to cure the cancer but to control its growth and relieve any symptoms.
Who will coordinate my care?
In most cases, a GP or community nurse will coordinate your palliative care. They will consult with a specialist palliative care service to help you maintain the best possible quality of life. Some people also tap into particular hospital and community services themselves as the need arises.
Specialist palliative care services see people with the most complex health care needs. If your GP, community nurse or cancer specialist finds that your care is beyond their capacity to manage, they may refer you to a specialist palliative care service. The service will usually be based in a hospital or a palliative care unit (hospice), or run as a separate community-based service. Less often, people may be referred to a private palliative care specialist.
The palliative care specialists will continue to consult your other doctors about your care and treatment. If your condition stabilises or improves, you may not need to see the palliative care specialists for periods of time.
It is important for your key family members or carers to be involved in any discussions about your treatment plan, especially if they are providing most of your day-to-day care.
Where will I receive palliative care?
You can have palliative care in different settings depending on your situation, where you live and whether you have family or friends who can help. Care can be provided at home or in a residential aged care facility, or in a hospital or palliative care unit (hospice). Patients often move between these settings 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 and support networks before discussing 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 palliative care services.
Depending on your situation, it may not always be possible to stay at home. 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.
You can search the National Palliative Care Service Directory at palliativecare.org.au/directory-of-services.
Do I have to pay for palliative care?
The federal, state and territory governments fund core palliative care services so that they are free in the public health system, whether you receive care at home or in a public setting. However, sometimes you may need to contribute to the costs of care. Some examples are:
- hiring specialised equipment for use at home
- paying for medications at home
- 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
- accessing 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 and you have private health insurance, check with your health fund to find out what is covered.
Will I lose my independence?
The palliative care team gives you choices to help you remain independent for as long as possible (e.g. a ramp could be put in at home so you don’t have to use steps). The team respects your wishes if you don’t want to take up their suggestions.
How can palliative care help?
The palliative care team is there to help make life easier for you, your family and carers. As well as the specific medical and support services that palliative care offers, there are also many general benefits:
- If you’re living at home, the team will call or visit regularly. This can reduce feelings of isolation and fear, help your carers look after you, and keep you out of hospital.
- Your care is usually coordinated by someone, often a community or palliative care nurse, who communicates with the team on your behalf.
- The team can help you to make treatment decisions and to prepare for the changes that advanced cancer brings.
- Learning how to make adjustments around the house can make things easier and safer for you, your family and carers.
- 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 the care.
- Your palliative care service may offer a number you can call for advice in an emergency at any time of day.
The palliative care team can also provide emotional support. A social worker or counsellor 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 making the most out of each day. You might focus your energies on short-term plans, such as enjoying time with friends and family, recording your memories, and reflecting on your life.
The social worker or counsellor can also help you and your family deal with loss and grief. This is often important for people who are close to dying, but can also be worthwhile if you feel grief from the changes that advanced cancer brings.
Palliative Care Australia provides resources on topics such as what questions to ask your palliative care team; facts about medicines used in palliative care; pain and pain management; and advance care planning. You can access these at palliativecare.org.au/resources.