RESUMEN
OBJECTIVES: Palliative sedation (PS) consists of the use of drugs to alleviate the suffering of patients with refractory symptoms, through a reduction in consciousness. The aim of this study is to describe the incidence of and indications for PS in patients treated by pediatric palliative care teams (PPCT), and the relationship between PS, the place of death, and the characteristics of the care teams. METHODS: Ambispective study with the participation of 14 PPCT working in Spain. RESULTS: From January to December 2019, a total of 164 patients attended by these PPCT died. Of these, 83 (50.6%) received PS during their last 24 hours. The most frequent refractory symptoms were terminal suffering (n = 40, 48.2%), dyspnea (n = 9, 10.8%), pain (n = 8, 9.6%), and convulsive state (n = 7, 8.4%). Sedation in the last 24 hours of life was more likely if the patient died in hospital, rather than at home (62.9% vs. 33.3%, p < 0.01); if the parents had not expressed their preference regarding the place of death (69.2% vs. 45.2%, p = 0.009); and if the PPCT had less than 5 years' experience (66.7% vs. 45.5%, p = 0.018). SIGNIFICANCE OF RESULTS: PS is a real possibility in pediatric end-of-life care and relates to care planning and team expertise.
RESUMEN
Introducción: el papel de los pediatras de Atención Primaria en el cuidado de niños con necesidades paliativas es fundamental. El objetivo del estudio es conocer la influencia que las unidades específicas de cuidados paliativos pediátricos tienen en la asistencia de los niños subsidiarios de los mismos por sus pediatras de Atención Primaria. Método: se realizó un estudio transversal mediante el envío de una encuesta en línea a los pediatras de Atención Primaria del territorio español. Resultados: se registraron 202 respuestas. El 68% nunca habían recibido formación específica en cuidados paliativos pediátricos. En aquellas provincias en las que existen recursos específicos de cuidado paliativos pediátricos, los profesionales de Atención Primaria muestran mayor predisposición para participar en las actividades propias de esta disciplina cuando sus pacientes lo precisen (media 4,37 frente a 3,89; p = 0,104) y han tenido más oportunidades de recibir formación sobre la materia (p = 0,007, OR: 2,18; IC 95: 1,24 a 3,84). Si hubiese una unidad de cuidados paliativos pediátricos accesible 24 horas por teléfono, el número de actividades potenciales en las que participarían es significativamente superior (p <0,001) (diferencia de medias 4,28; IC 95: 3,92 a 4,65). Conclusiones: la existencia de recursos específicos de cuidados paliativos pediátricos con disponibilidad telefónica 24 horas tiene un impacto positivo en la disposición de los pediatras de Atención Primaria para participar en el plan de tratamiento de pacientes con necesidades paliativas. Para implementar los cuidados paliativos desde este ámbito es necesario reforzar los programas formativos
Introduction: Primary Care paediatricians play an essential role in the management of children with palliative care needs. The aim of this study was to assess the impact of the availability of specialised paediatric palliative care units in the management of children eligible for palliative care by their Primary Care paediatricians. Method: cross-sectional study performed by inviting Primary Care paediatricians in Spain to complete an online questionnaire. We analysed training needs and the desire of respondents to be involved in palliative care. Results: we received202 responses. 68% of participants had never received specific training in paediatric palliative care. In provinces where paediatric palliative care resources were available, professionals expressed a greater willingness to involve themselves in palliative care activities as needed by their patients (mean 4.37 vs. 3.89, p = .104) and had more opportunities to receive training on the subject (p = .007, OR: 2.18; 95 CI: 1.24-3.84). On average, if telephonic access to a paediatric palliative care unit were available 24 hours a day, respondents would hypothetically be willing to participate in a considerably higher number of activities (p <0.001) (difference in means 4.28; 95 CI: 3.92-4.65). Conclusions: the availability of specialised paediatric palliative care services accessible by phone around the clock has a positive impact on the willingness of Primary Care paediatricians to be involved in the treatment plans of patients with palliative care needs. Training programmes need to be strengthened to promote the provision of paediatric palliative care at the Primary Care level
