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

Area of Science:

• Paediatric surgery
• Palliative care
• Genetics

Background:

• Paediatric maxillofacial surgeons rarely manage life-limiting conditions, leading to underutilization of palliative care.
• Infantile osteopetrosis and osteosclerotic metaphyseal dysplasia are rare, life-limiting oral and maxillofacial conditions requiring complex care.
• Multidisciplinary collaboration is essential for managing severe symptoms and end-of-life care in these cases.

Purpose of the Study:

• To highlight two rare life-limiting oral and maxillofacial conditions.
• To propose a collaborative framework integrating palliative care services.
• To introduce a novel referral pathway to improve care coordination.

Main Methods:

• Case study review of infantile osteopetrosis and osteosclerotic metaphyseal dysplasia.
• Description of a multidisciplinary team approach involving various specialties.
• Development and presentation of a traffic light referral pathway categorizing patient vulnerability.

Main Results:

• Complex symptom management included analgesia, surgery, enteral nutrition, blood transfusions, and seizure management.
• A traffic light referral pathway was developed to streamline joint management between maxillofacial and palliative care teams.
• The pathway is being piloted to support early referrals and improve care coordination.

Conclusions:

• Maxillofacial surgeons play a crucial role in initiating timely palliative care referrals.
• Enhanced education and awareness are needed to foster multidisciplinary collaboration in paediatric palliative care.
• The traffic light system algorithm can support earlier integration of palliative care for children with life-limiting conditions.