Common questions about palliative care

When most people hear the term palliative care, they fear that it means their treatment team has given up hope or they are going to die soon. This is certainly not the case for everyone referred to palliative care. This fear is one reason that some people don’t access palliative care services early – or at all. 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 limits of your illness. It’s not simply about dying.

Some people live comfortably for months or years after a diagnosis of advanced cancer, and can be supported by palliative care as needed. 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 adjust your care to meet your changing needs.

Depending on your needs, you may use palliative care from time to time or you may use it regularly for a few weeks or months. Some people receive palliative care for several years. This is because improved cancer treatments can sometimes stop or slow the spread of advanced disease and relieve symptoms for a number of years. The cancer may then be considered a chronic (long-lasting) disease. There is no need to wait until you need end-of-life care, as research shows having palliative care early on improves quality of life for people with cancer.

To access palliative care, you will need a referral from your GP, medical specialist or other health professional. Once you know the cancer is at an advanced stage, you can consider having palliative care.

Sorting out care sooner rather than later will reduce stress on you and your family. You can find out what the different team members do and how they can help now or in the future. It will give you time to better understand and manage any physical symptoms (such as pain or nausea), and to consider your emotional, cultural, social and spiritual needs.

If you have palliative care, you can still have active treatment to shrink the cancer or stop it growing. The palliative care team will work with your cancer specialists to manage side effects from treatment and maintain your quality of life. Cancer treatments such as surgery, drug therapies and radiation therapy may also be used as part of palliative treatment. In this case, the aim is not to cure the cancer but to control the cancer or relieve symptoms. You may also want to consider joining a clinical trial.

Palliative care treats 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 throughout the advanced stages of illness. 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.

Voluntary assisted dying

It is important to understand the difference between palliative care and voluntary assisted dying.

Voluntary assisted dying is when a person with an incurable condition or illness chooses to end their life and uses medicines specially prescribed by a health practitioner. “Voluntary” means it is the choice of the person to end their life.

Voluntary assisted dying is not part of palliative care.

At the time of the last review of this information (August 2021), voluntary assisted dying is illegal in most Australian states and territories. In Victoria and Western Australia, voluntary assisted dying is legal only for people who meet all the strict conditions and follow certain steps. Visit health.vic.gov.au or health.wa.gov.au and search for “voluntary assisted dying” to find out more about the law in these states.

Voluntary assisted dying laws have been passed in Tasmania and South Australia, and voluntary assisted dying is likely to start in late 2022. The laws in some other states and territories are under review.

For more information and updates, visit end-of-life.qut.edu.au/euthanasia.

Finding hope

Some people avoid palliative care because they hope that a cure will be found for their cancer. Having palliative care does not mean giving up hope. You may find that you focus on the things that are most important to you, e.g. feeling valued, having meaningful relationships or receiving effective pain relief.

People with advanced cancer may have palliative care for several months or years and continue to enjoy many aspects of life in that time. Some people take pleasure in completing projects, spending time with friends, or exploring new interests and hobbies. Others make sense of their situation through a creative activity, such as art, music or writing.

As the disease progresses, your goals may change. For example, you might hope to live as comfortably as you can for as long as possible or you may have some unfinished business to complete, such as planning a family trip. Palliative care can help you achieve these goals.

In most cases, a GP or community nurse will coordinate your palliative care. If your care becomes complex, 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 hard 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. Some specialist palliative care services can visit you at home. You may also need to stay in hospital or a palliative care unit (hospice) for short periods to have medicines adjusted or get 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.

This is a common concern for people. Depending on your condition, you may need a little help with a few things or more help with lots of daily tasks. This is likely to change over time.

Your palliative care team will discuss practical ways you can maintain a sense of independence for as long as possible. They may suggest modifications or services to help you stay at home (such as installing handrails or a ramp). They may also recommend or loan you 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. If you feel you are losing your independence, you might feel angry and fear what the future holds.

You can have palliative care in different places, including:

• your own home
• at a residential aged care facility or other out-of-home facility
• in a hospital
• at a specialist palliative care unit (hospice).

An important role for the palliative care team is to work out the best place for your care. The team will consider your care needs, 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.

You and your family may be able to choose where you want to receive palliative care. You may be able to move between these places as your needs change.

Many people want to receive care at home because it is a familiar environment close to family and friends. If you are cared for at home, you (and anyone who cares for you) may be able to receive community-based palliative care services. This can include a range of services on an occasional or regular basis.

Depending on your situation, it may not be possible to stay at home, even with home help. Hospitals and palliative care units are designed for short-term stays, usually for people nearing end of life.

If you cannot return home and need care for several months or more, the palliative care team will talk to you and your carers about where you can receive 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, in a residential aged care facility, or in hospital (inpatient care).

Sometimes you may need to pay part of the cost of care. Examples of extra costs include:

• hiring specialised equipment for use at home
• paying for medicines
• paying for your own nursing staff if you choose to stay at home and need 24-hour assistance
• paying an excess if you have private health insurance that covers palliative care and you go to a private hospital
• using short-term care (respite services) that charge a fee
• paying the fee of a private allied health professional, such as a psychologist or physiotherapist (you may be eligible for a Medicare rebate for up to five visits per calendar year as part of a Chronic Disease Management Plan with your GP)
• paying for complementary therapies, such as massage therapy and acupuncture.

For more specific information, contact your state or territory palliative care organisation. For contact details, call Cancer Council 13 11 20 or visit palliativecare.org.au/members.