About palliative care

You may need relief of symptoms such as pain, breathlessness, nausea, restlessness and constipation or help with medicines. Palliative care practitioners can help you with moving around or they may suggest changes around the house to make things easier and safer for you. You may be offered a referral to services that give your carer a break for a short period of time (respite care).

Palliative care can offer support for you, your family and carers to talk about the changes advanced cancer brings or other sensitive issues. You may also need help to decide what’s important to you, and to plan for your future care and where you would like to receive it. You can seek help to work through feelings with a counsellor or psychologist.

Palliative care ensures that the care and conversations that you have are sensitive to your culture, ethnicity, background, beliefs and values.

You can find help to achieve your goals and get the most out of each day through palliative care. It looks at your day-to-day needs, such as living arrangements, transport to medical appointments, meals, advice on financial issues or help to set up a support network.

This support may come from religious leaders you know (e.g. a pastoral carer or chaplain), or it may be available from spiritual care practitioners, or other professionals on the palliative care team.

This means that the palliative care team will work with you to assess what you need. They can then make suggestions about treatment and ongoing care. Your care goals may change over time.

The palliative care team will work with you and your carers to help plan the best place for your care. At different times you may be at home supported by community palliative care services, in hospital, at a residential aged care facility or in a palliative care unit (hospice).

Palliative care is useful at all stages of advanced cancer and can be given alongside active treatment for cancer. Contacting a palliative care team after a diagnosis of advanced cancer can help you work out when is best to start palliative treatment and how to manage symptoms.

Your palliative care team is made up of people with different skills to help you with a range of issues. Your care may be led by a GP, nurse practitioner or community nurse, or by a specialist palliative care team if your needs are complex. Some people may only see their GP.

The palliative care team will help you work out how to live in the most fulfilling way you can – this might mean enjoying time with family and friends, recording your memories or reflecting on your life. They can also refer you to organisations and services that can assist with financial, emotional and practical needs.

If you agree (consent), the palliative care team will involve your family and carers in decisions about care. They can also provide them with emotional support and referrals to counselling, grief support, respite and financial assistance.

Palliative treatment can help you manage symptoms related to the cancer or its treatment, such as pain, nausea, loss of appetite, breathlessness or fatigue.

The palliative care team or a social worker can support you to think about, discuss and record your values, goals and preferences for future care and treatment.

An occupational therapist or physiotherapist can assess you to improve your independence, and suggest equipment or ways to help with daily activities and make it easier for your carers to look after you.

When most people hear about palliative care, they worry it means their treatment team has given up hope or they may die soon. This fear may stop people using palliative care services.

Palliative care aims to maintain quality of life for people living with a life-limiting illness. It’s about helping you to live as fully as you can and in a way that is meaningful to you, within the limits of your illness. You don’t have to stop your cancer treatment to have palliative care. And you don’t always have to be admitted to a hospital or palliative care unit permanently.

Some people live comfortably for months or years after a diagnosis of advanced cancer, and can be supported by palliative care as needed. They may have palliative care for a period of time and then stop when their condition is stable. For others, the cancer advances quickly, and 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 preferences and changing needs.

There is no need to wait until you are close to the end of life – research shows having palliative care early improves quality of life. 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.

Ask your GP, medical specialist or other health professional about what services you may need and a referral. Or you can contact a palliative care service yourself or for someone else. You don’t usually need a referral but it can be helpful. Organising care sooner rather than later will reduce stress on you and your family. You can find out what help is available to you now, and what you may want or need in the future. This 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 slow its growth. 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 it 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. The treatment and care provided do not aim to make you live longer, they try to make what time you have the best it can be.

The palliative care team provides services to improve your quality of life throughout the stages of advanced cancer. 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 or be able to tolerate cancer treatment for longer.

In most cases, a GP or community nurse will coordinate your palliative care. If your care becomes complex, they will usually take 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, you may see a palliative care specialist or nurse practitioner. Usually this will be as an outpatient, but some specialist palliative care services can also visit you at home.

You may need to stay in hospital or a palliative care unit (hospice) for short periods to have medicines adjusted or to get any pain under control. The specialist palliative care service will continue to consult with 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 a period of time, or you may be able to stop having palliative care.

Some people may live alone or have little or no support from family or friends. They may be living a long distance from anyone who would usually offer practical and emotional support.

Community palliative care services can help you to stay at home for as long as possible. But at some point, you may need 24-hour care. Depending on your circumstances and care needs this may be available in a palliative care unit (hospice), hospital or residential aged care facility.

If you live alone, you could ask for support from:

• your GP or community nurse
• the palliative care team or volunteer palliative care organisations
• Palliative Care Australia (for services available near you)
• My Aged Care
• the local community health service
• culturally-based community services
• your local council
• a church or other religious group
• practical support services
• Cancer Connect on 13 11 20 or cancer support groups.

It’s common to worry about being a burden on friends, family or community organisations. But they may want to help, so talk to them about your needs and ways they can help that work for you both.

You can have palliative care in different places, including:

• your own home or a family member’s home
• at a residential aged care facility or other out-of-home facility
• in a hospital
• at a specialist palliative care unit (sometimes called a hospice)
• at an outpatient clinic or via telehealth.

Working out the best place for your care is an important job for your GP or the palliative care team. They 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 may be able to choose where you want to receive palliative care, or you may be able to alter arrangements as your needs change. Your choices may depend on what services are available in your area. If you accept palliative care at an inpatient facility, you can still decide to go back home if circumstances allow.

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, to address worsening symptoms, to plan care at home or 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, in a palliative care unit or hospice, or in hospital (inpatient care).

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

• hiring specialised equipment to use at home
• paying for medicines or wound dressings
• 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
• fees for private allied health professionals, such as a psychologist or physiotherapist (you may be eligible for a Medicare rebate for up to 5 visits per calendar year as part of a chronic condition management plan or 10 visits for a Mental Health Care Plan)
• paying for complementary therapies, such as massage therapy and acupuncture.

Ask what costs may be involved, and what amount may be covered, when making appointments. Cancer Connect may be able to connect you to an appropriate financial professional. Call 13 11 20.

Depending on your condition, you may need a little help with a few things or more help with lots of daily tasks. The amount of help you need is likely to change over time.

Your GP or palliative care team will discuss practical ways to maintain your sense of independence for as long as possible. An occupational therapist (your GP or community service can give you a referral) may suggest changes or services to help you stay at home, such as installing handrails or a ramp. An occupational therapist or physiotherapist may also suggest 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. If you feel you are losing your independence, your GP or palliative care team can talk with you about how to keep doing what’s important to you as your mobility and health change.

Your doctor or nurse may suggest you take part in a clinical trial. Clinical trials test new or modified treatments to see if they are better than current methods. For example, if you join a randomised trial for a new treatment, you will be chosen at random to receive either the best existing treatment or the modified new treatment. Over the years, trials have improved palliative care and the management of common symptoms of advanced cancer. You may find it helpful to talk to your specialist, clinical trials nurse or GP, or to get a second opinion. If you decide to take part in a clinical trial, you can withdraw at any time. For more information, visit Australian Cancer Trials.

For more information, see Clinical trials and research.