Children’s palliative care shares many of the principles of palliative care that is provided to adults. However, there are unique aspects of the care provided in looking after a child with a life limiting illness. This includes children diagnosed with cancer and non-cancer diagnoses from infancy to young adulthood. We are also providing this care working with the children’s family (parents, siblings, grandparents) and the broader community (including schools).

The goal of our project is to deliver education in paediatric palliative care in areas outside of the metropolitan centres of Australia, and in all states and territories of Australia. This reflects the geographic diversity of Australia, with many patients living outside of capital cities, and also large distances between centres. The anticipated outcome of this education is greater confidence of health professionals to care for dying children, and improved quality of care.

We are providing our education through “pop up” visits to regional, rural and remote centres. A pop up visit occurs when a small team of health professionals (with expertise in children’s palliative care and also educational strategies) visits a community to provide education to the health professionals who may be providing care to that child. This can occur at various stages of the child’s illness (just after diagnosis, at times of deterioration, or when end of life care is provided). As a result a network of health care professionals (e.g. General Practitioners, community nurses, allied health staff amongst others) is formed and can provide support to the family.





A Quocca Team (Ali McLarty - Nurse Educator, Dr Jacqueline Duc - Medical Fellow, Angela Delaney - Music Therapist and Allied Health Educator, and Sarah Baggio - Physiotherapist and Allied Health Educator) on a "pop up" visit to Kingaroy, Queensland - home of the peanut.




This can allow outcomes such as the family being able to access acute services for review after hours and having seamless transitions of care (e.g. from the tertiary children’s hospital to the local community or between the local hospital and home). We will do all we can to support the family to be in their home, or alternatively at the hospital which is closest to their home. This also builds capacity in that community to provide excellent holistic and compassionate care to future children with life limiting or complex illnesses.  At the same time, the team who visits the community often are able to learn as well, as they see how each individual group of health care professionals approach the challenging problem of caring for a child with a life limiting illness. We are often amazed at the welcome we receive from local health care professionals, and their capacity to provide compassionate care to children and families.

Personally, I have found a number of benefits of making trips to various regional centres. It is great to be able to put a face to a name of a paediatrician, palliative care physician, community nurse, or social worker, who I may have spoken to over the phone. It is also great to collaborate with the local paediatric and palliative care services on how we can best provide care for patients in that particular region of Australia. It is helpful to walk through the children’s ward and outpatients located in a regional centre that has cared for a child who was linked to my service. Sometimes our visits have been after a child has died, and we have been able to mutually debrief about the care we provided that patient and their family. There has also been opportunities for bereavement follow up and undertaking a review of the palliative care that was undertaken (what we call a death review). I have also found the opportunity for peer review when driving to and from patient’s homes or to health centres, as we discuss challenges and the cases at hand.

There is now a group of energetic nurse educators from Queensland, Victoria, South Australia and Western Australia – who are working on a curriculum and methodology for delivering paediatric palliative care education in Australia. The first state to implement pop-up visits for children’s palliative care in Australia was New South Wales. As such, New South Wales wasn’t included in the roll out of pop up visits throughout Australia associated with this project. 

Topics that we present on include an introduction to children’s palliative care, how to manage a new referral, aspects of symptom management, providing information to families and helping families prepare for the death of their child. We are also providing education to trainee paediatricians around palliative care (in Queensland and New South Wales). There are also 2 allied health educators who are making sure the education needs of allied health staff are met. It is also important that medical and nursing staff have an understanding of the role of allied health staff in children’s palliative care. This can sometimes also be in the context where allied health resources may be limited outside of metropolitan areas. Another outcome of the project has been reflection on how we can best work as inter-professional teams in caring for children and their families.   

We find it is always best to tailor the learning needs according to the local community we are visiting.  This has included undertaking a learning needs analysis which is ongoing. We hope that we will develop a number of resources that will be harmonised for the Australian context, but can also be individualised to the local community and specific child that is being cared for. We are grateful to the Commonwealth Department of Health for funding this project through the National Palliative Care Projects.

Links:
The Quocca Project
https://www.caresearch.com.au/caresearch/tabid/3682/Default.aspx
Paediatric Palliative Care Learning Needs Analysis
https://www.surveymonkey.com/r/7LSG6LB
A Practical Guide to Palliative Care in Paediatrics
https://www.childrens.health.qld.gov.au/wp-content/uploads/PDF/brochures/palliative-care-in-paediatrics.pdf
A similar project conducted in Canada – but focused on patients with cancer
https://www.ncbi.nlm.nih.gov/pubmed/26818836





Dr Anthony Herbert, Director, Paediatric Palliative Care Service, Lady Cilento Children’s Hospital, Brisbane and Project Lead, Quality of Care Collaborative of Australia for Paediatric Palliative Care Education (QuoCCA)