End of life and palliative care explained

End of life and palliative care focuses on improving your quality of life, and that of your family, friends and carers. If you have an illness that cannot be cured and will lead to the end of your life, end of life and palliative care services will be recommended.

Some people may have a condition causing them to be very ill and may need palliative care for only a few weeks. Others may need end of life and palliative care at intervals over a period of months or years.

End of life and palliative care is best commenced early in the disease process to help you maintain the best quality of life, according to your wishes, for as long as possible.

Who is end of life and palliative care for?

Anyone with a life-limiting or life-threatening illness is eligible for end of life and palliative care from a health service in Victoria:

• End of life care - for people who are likely to die within the next 12 months because of a serious illness, frailty, or old age. It can be hard to know exactly when someone is in the last months or year of life. Recognising this time is important, because a person’s health can change quickly and they may need extra support from different health services.
• Palliative care - for people living with a serious or life-limiting illness, and may continue for years. It focuses on the person’s physical, emotional and spiritual needs, rather than diagnosis or how long they may live. Palliative care can be provided at the same time as other treatments.

Chronic, life-limiting illnesses for which you can receive end of life and palliative care include, but are not restricted to:

• cancer
• heart and lung diseases
• motor neurone disease and multiple sclerosis
• Alzheimer’s disease and dementia
• renal disease
• stroke and other neurological conditions
• other life-limiting illnesses.

End of life and palliative care is also available:

• if you need treatment to manage symptoms such as pain or breathlessness, no matter what your illness is
• if you need support dealing with difficult emotions related to your condition (sometimes this is referred to as ‘supportive care’)
• for family members or friends who are providing care for you.

You can find more information at Palliative care and end of life services.

Providers of end of life and palliative care

End of life care is delivered by a wide range of providers. Many people who work in health, human services or community agencies can help provide end of life care, such as:

• staff at your local community health centre
• staff at your GP clinic
• staff at your local rural clinic
• local government agencies
• cultural and religious service providers
• residential care facilities
• disability services
• hospitals
• medical specialists.

The end of life care provided may include listening and talking with you after news about the possibility of the end of your life, being empathetic to your concerns and needs, and referring you to more specialised support or care if required.

A range of people and services may be involved in your care and, as your condition progresses, the people who care for you may change to suit your needs.

Palliative care is delivered by specialist palliative care staff who are trained with specific skills and knowledge to help you, your family and carers. Palliative care staff have specialist expertise in symptom management, emotional, spiritual, practical and cultural care. Palliative care staff include specialist doctors, nurses, allied health professionals and spiritual care workers.

Palliative care may be delivered by these staff at the end of life care venues listed above as visiting specialists. Palliative care is also provided by these specialists at:

• community palliative care
• inpatient palliative care units (hospices)
• hospitals (public or private)
• residential care homes
• outpatient clinics
• day hospices.

Palliative care staff also provide advice and support to the people that are providing end of life care to you. If your condition becomes complex, specialist palliative care staff provide care directly to you.

End of life and palliative care for teenagers and young adults

End of life and palliative care for teenagers and young adults is different to care provided for either children or adults. Teenagers and young adults have unique needs. Some services have a specific health professional such as a Key Worker to assist with care for teenagers and young adults facing the end of life. The main focus is on helping the teenager or young adult and their family to live as well and fully as possible.

Depending on the teenager or young adult’s age and other factors, you may be supported by specialists in children’s palliative care or adult palliative care. Specialists in both areas help families and the doctors caring for them to work through difficult medical decisions.

A teenager or young adult with a life-limiting illness may have an uncertain course of illness. It may continue with ups and downs for many months or years, or for a shorter time. Palliative care services provide ongoing support, including bereavement support, to help you and your family cope and spend quality time together.

For more information on end of life and palliative care services for children and young people, see the Where to get help section on this page.

Palliative care and other treatments

Palliative care is not the end of active treatment. You can receive palliative care at the same time as other treatment for particular conditions. For example, if you are receiving treatment for cancer, you can receive palliative care at the same time. You don’t need to stop active treatment for particular conditions while you are having palliative care, but you may choose to if you wish.

Person-centred palliative care

'Person-centred care' means that:

• you are at the centre of planning and decision-making around your end of life and palliative care
• your individual, cultural and religious needs are considered when care is planned
• you are treated in the way you want to be treated
• your preferences and values are recognised and respected
• you are treated with respect and dignity whatever your age, cultural background, religion or sexual orientation.

By responding to your needs and those of your family in this way, your palliative care team can help you make the most of each day. There is a focus in Victoria to ensure people from culturally and linguistically diverse backgrounds and other groups receive the care that is right for them.

Planning ahead with end of life and palliative care

End of life and palliative care staff can help you decide what care you need, if you are likely to be entering the last year of your life.

Identifying this time is important as you may have rapid changes and fluctuations in your condition during this period. You may also have contact with a wide range of health or community services over this time.

A focus on approximately one year allows for the best planning of care. You can discuss your preferences for care and what matters to you most with your loved ones and doctor or other health professionals. The aim is to meet your needs according to your wishes in the last year, months, weeks and days of your life.

For more information see the Advance care plans page.

Cost of palliative care

Palliative care is generally free but you may have to pay for the hire of some specialised equipment, medications, dressings and treatments.

There will be extra fees if you access palliative care in a private hospital, so always check with your health insurance company to find out more about your options and the potential costs.

Referrals for palliative care

You can contact palliative care services directly or you can be referred by your doctor, nurse or local health provider, your carer or a family member.

Where to get help

• Palliative Care Advice Service
• Your local palliative care service
• Your GP (doctor)
• Palliative Care Victoria Tel. (03) 9662 9644

Children and young adult services

• Victorian Paediatric Palliative Care Program (VPPCP)
• Paediatric services such as The Royal Children’s Hospital, Monash Health Women’s and Children’s Program, and those in major regional health services
• Very Special Kids Hospice Tel. (03) 9804 6218
• Paediatric Palliative Care Australia - practical resources for parents of children and teenagers living with a life-limiting illness
• Victorian Adolescent and Young Adult (AYA) Cancer Service at Peter Mac Tel. (03) 8559 6880 - for information on palliative care for adolescents and young adults with cancer

Aboriginal and Torres Strait Islander services

• Caresearch - information about palliative care and family and community journeys for Aboriginal people
• Your local hospital or health service - most health services in Victoria have an Aboriginal Hospital Liaison Officer that can give you information and support to make things easier
• Victorian Aboriginal Palliative Care Program - managed by the Victorian Aboriginal Community Controlled Health Organisation (VACCHO) in partnership with Palliative Care Victoria
• Palliative Care Australia - Discussion Starter series and Card packs are available to help with early conversations around end of life care