Ms Jill Carter1
1Barwon Health, Geelong, Australia
Biography:
Jill has extensive experience in adult cancer and palliative care nursing, with a strong passion for providing specialised palliative bedside care.
She has a significant interest in paediatric palliative care within the community, emphasising patient centered care for children facing life-limiting illnesses.
Her recent involvement in the steering committee for the ‘Victorian adolescent and young adult palliative care framework 2025’ has inspired her current presentation.
Presently, Jill holds an educational role with the Barwon Health Palliative Care team, where she integrates her clinical expertise with bedside care while supporting current palliative care nursing teams.
Abstract:
Background:
Caring for children with a life limiting illness differs from adults in many ways.
Illness trajectory, social context, specialist workforce and complex care planning need to be considered when providing paediatric palliative care.
Aim:
Presentation of a model of care, the Palliative Care at Home Service (PAH).
Demonstrate how palliative care nursing of a medically complex child within an adult focused service allowed for end-of-life care which facilitated the patient remaining within their community supports, including the Burmese refugee community church and extended family.
Method:
The award-winning PAH service provides a unique community based palliative care service to support people (predominantly adults) who might otherwise require inpatient care to remain at home.
Nursing care is provided across shifts enabling up to three scheduled visits per day if required in addition to responding to carer call outs.
Clinical oversight and management of care is provided by a Palliative Care Nurse Consultant and a Palliative Care Physician.
Support was also received by a local Paediatrician weekly and from The Royal Children’s Hospital Victorian Paediatric Palliative Care Service Melbourne.
Result:
For 5 months the paediatric palliative care patient was nursed at home, avoiding lengthy periods in a hospital setting, allowing the family unit to remain cohesive.
The service was able to navigate significant challenges to care, including clinicians unfamiliar with paediatric care, language barriers, the use of interpreters in the home or phone, cultural expectations, family dynamics, health literacy, and prognostic uncertainty. This provided a unique opportunity for the patient and family to have access to end-of-life care at home.
Conclusion:
This patient-focused model enabled specialist palliative care nurses working in an adult oriented service to experience and develop the necessary skills to care for a paediatric patient within the supportive environment in the community. The patient died surrounded by their family and community.
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