Early palliative care collaboration for paediatric patients with inherited jaw conditions-a traffic light system.

Abstract

Paediatric maxillofacial surgeons infrequently encounter primary life-limiting conditions with escalating symptoms, contributing to the underutilization of palliative care services. This paper highlights two rare life-limiting oral and maxillofacial conditions - infantile osteopetrosis and osteosclerotic metaphyseal dysplasia - and proposes a collaborative framework integrating palliative care. The cases illustrate the multidisciplinary approach needed for complex symptom management, including end-of-life care in one case.The collaboration involved anaesthesia, surgery, pharmacy, dietetics, endocrinology, haematology, respiratory, microbiology, psychology, and community and hospital palliative care teams. Management included analgesia, multiple surgeries, use of enteral nutrition, frequent blood transfusions, and terminal seizure management, addressing ethical and practical challenges to ensure comprehensive care delivery. A traffic light referral pathway to enhance collaboration was developed and is presented. It categorizes patient vulnerability into three tiers to streamline joint management between maxillofacial and palliative care teams. This pathway is currently being piloted to support early referrals and improve care coordination. The illustrative cases underscore the critical role of maxillofacial surgeons in initiating timely referrals and highlight the need for continued education to foster awareness and enhance multidisciplinary collaboration in paediatric palliative care. The novel traffic light system algorithm may support earlier integration of palliative care in this setting.