Specialized Pediatric Palliative Care (PPC) teams address unmet needs and improve quality of life in patients with Life Limiting Conditions across pediatric subspecialties. However little is known about frequency, timing and trigger for PPC referral in non-malignant diseases. We hereby describe how, when and why french cardiologists interact with PPC teams.
We conducted a retrospective nationwide survey among PPC teams in France. All patients referred to PPC team for a cardiologic disease in 2019 were studied.
Among 6 respondent PPC teams, 18 patients and families met PPC teams in 2019 for an advanced heart disease. 12 had Congenital Heart Defect (CHD) and 6 had cardiomyopathy. No other diagnosis was represented. Median age at referral was 0.9 months for CHD and 72 months for cardiomyopathy. 61% of the patients were less than 1 years old. Antenatal diagnosis concerned 6 families with CHD and 2 of them were referred to PPC before birth allowing prenatal palliative care project. Main trigger for referral was ethical consideration (50%) followed by organization for home based palliative care (28%). PPC teams did participate to ethical discussion when asked to but also provided home-based PPC (9/18), family support (12/18), coordination of care (5/18), support of referring team (4/18) and symptoms management (3/18)
Trigger for referral to PPC team is mainly for help in decision making in palliative care context and life threatening complications but PPC teams interventions tend to develop a holistic model of care. Pediatric cardiologist and PPC teams already interact in children's best interest in France, outcomes measurement and partnerships are ready to be developed.Le texte complet de cet article est disponible en PDF.