My name is Elizabeth Shepherd and I am the Program Development and Quality Manager for Palliative Care at the Sydney Children’s Hospital Network. Working within this specialised area can be challenging and emotional, however, it can also be very rewarding. My position allows me to work closely with the 3 specialist PPC teams located at Children’s Hospital Westmead, Sydney Children’s Hospital Randwick and John Hunter Children’s Hospital, Newcastle. Together we are known as The NSW PPC Programme and over the past 5 years I have been fortunate to work with the energetic and dedicated staff from each service to improve the support that is available to children and families across NSW.
Caring for a child with a life limiting illness is different to adults. Paediatrics is a much smaller and diverse population group with differing care needs. Whilst our patients spend varying amounts of time in hospital, there is a strong focus to care for children at home or as close to home as possible throughout their illness. The PPC team is multidisciplinary and our goal is to support families by coordinating care and working closely with a child’s local services. This often involves providing education and training to health professionals to help them have a strong understanding about a child’s illness and management plan. Additionally, improved knowledge can establish more confidence to provide care locally.
There is often a perception that PPC is all about end of life (EOL) care; although it is a large component, patients can be supported by the palliative care team for many years. In children, it can often be difficult to predict ‘prognosis’ so we encourage families to focus on their child’s quality of life. This often involves identifying and prioritising their goals of care as the illness progresses. At end of life, the palliative care team will support families by helping them to make decisions about locations to care for their dying child, symptom management and resuscitation goals; additionally they can provide psychosocial support to the whole family throughout this difficult time and into bereavement.
The NSW PPC Programme has worked on developing a number of great resources to support health professionals who want to learn more about PPC. The NSW PPC Programme website is a great place for you to start. The website has videos, referral information, psychosocial and bereavement education as well as an upcoming events menu. We always want to hear more about what health professionals and our families using our website would like to learn. We encourage you to let us know by completing the short survey that is available via the NSW PPC Programme-Consumer Feedback link.
Educational opportunities are always available for health professionals who want to learn more about PPC. If you do have an interest in paediatrics, I would encourage you to explore the Program of Experience in the Palliative Approach (PEPA). Clinical placements with one of the 3 specialist PPC service can be supported through PEPA to broaden your knowledge about caring for children with a life limiting illness and their families.
Elizabeth Shepherd, Program Development and Quality Manager, Palliative Care at Sydney Children's Hospital Network