What is palliative care?

Palliative care is defined in Australia as “person and family-centred care provided for a person with an active, progressive, advanced disease, who has little or no prospect of cure and who is expected to die, and for whom the primary treatment goal is to optimise the quality of life.”

Children’s (paediatric) palliative care services help the whole family to cope with the emotional and practical challenges of a life-limiting condition such as Tay-Sachs or Sandhoff disease.

Most palliative care teams are multidisciplinary, which means that they have a mix of doctors, nurses and various other types of health professionals. The team works together to find the best way to support you. It will also work alongside your other specialist and community teams.

How does a palliative care referral work?

Families caring for a child with a life-limiting illness can access palliative care in every state and territory, with dedicated paediatric palliative care services in every jurisdiction except the NT and Tasmania. Families in these latter jurisdictions can access specialist services in SA and Victoria, respectively.

Talk with your care and support team about the benefits of a referral to paediatric palliative care team, and any concerns that you may have.

What is the right time for a palliative care referral?

Many families are worried that being given a referral to paediatric palliative care means that their child might die soon. While it does recognise that a life-limiting diagnosis has been made, the intention is rather to focus on quality of life.

As such, it can be helpful to explore how paediatric palliative care can support your child or loved one and their family shortly after receiving the diagnosis.

At this time, an assessment to determine the needs of both the child and their family will be taken. This assessment is an opportunity to explore the child and their family’s goals, hopes and concerns.

Typically, the whole palliative care team will be involved in the assessment. The primary goal of this assessment is to provide the best possible arrangement for the child and the family. The assessment should be reviewed as the child’s needs, and those of their family change.

What are the types of services provided?

The aim of paediatric palliative care is to help your child or loved one experience the best quality of life through a holistic approach that supports the physical, emotional, social and spiritual aspects of the child and their family.

Specialist paediatric palliative care will include advice on pain and symptom control, hands-on nursing, practical advice and emotional support. It allows for active treatment to be a part of their life, but not the entire focus.

This service is not just available at the end of life but can also help at times of crisis. Palliative care teams also work alongside staff in a hospital to support them in providing care to your child and to meet your family’s goals and needs.

Palliative care will be delivered in the best place for you at the time. This may be at home, in hospital or, if there is one where you live, a children’s hospice.

Rare Find information iconFurther Information

The following resources are good places to start:

Palliative Care Australia provides information to support families caring for children with a life-limiting illness.

The Paediatric Palliative Care website home page contains an interactive map of Australia titled ‘Paediatric Palliative Care Planning – Find a service’ that enables families to find care near their home.