Information for health professionals

Paediatric palliative care is an active and total approach to care embracing physical, emotional, social and spiritual elements. It focuses on an enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite and care through death and bereavement. 

There are three specialist paediatric palliative care services in the NSW Paediatric Palliative Care Programme:

•  The Children’s Hospital at Westmead
• Sydney Children’s Hospital, Randwick
• John Hunter Children’s Hospital, Newcastle

Each service provides a range of support for children and their families referred to palliative care living in NSW, including rural and remote areas. 

• Assessment and management of pain and other difficult symptoms experienced during the course of a child’s illness
• Enhance communication to coordinate and link families with available home care, hospital and community services
• Information around respite options
• Facilitate discussions for goals of care and end of life care planning including resuscitation orders
• Provide care and support during different stages of a child’s illness
• Advice about psychosocial support for siblings and other family members
• Advice about bereavement care referrals for parents, siblings and other extended family members.  

The specialist paediatric palliative care services are available to provide education, advice and support to a child’s primary medical team and other involved health practitioners. The aim is to enhance the confidence of any health professional involved in managing the care needs of a child and family. 

After hours medical advice is available for health professionals if needed. Palliative care services will not replace the medical teams
who care for a child at hospital or in the community. 

Our goal is to work with you and other health services to enhance the care for children and their families. 

Most families can choose where they would like to care for their child. Most care is provided at home, however as illness progresses more frequent admissions to hospital may be necessary.

During these times, the palliative care services can help coordinate care across these locations to ensure families are supported wherever they wish to be.

Inpatient respite and end-of-life care is an available option for children and their families at Bear Cottage located in Manly, Sydney. 

It is often difficult to predict the progression of many childhood conditions even when medical treatment is provided as life prolonging or in the hope of cure.

An early referral allows more time to establish a therapeutic and trusting relationship with families to ensure that care planning is guided by each family’s individualised goals and wishes.

A referral does not mean giving up hope. In fact, it allows for more time to plan care and provide the best possible support for a child, their family and other involved care givers.

Palliative care is not just about preparation for death, it is about improving the quality of life for a child with a life limiting illness and their family during the course of an illness.

• Diagnosis of a life limiting illness
• Uncertain disease prognosis
• The disease has become unresponsive to interventions or disease course is worsening
• Difficult pain or symptom management
• Acute deterioration associated with disease progression
• Family is in need of support to manage ongoing complex care needs of their child
• Caregivers feel they are doing things to the child rather than for the child
• Support for difficult discussions.