Prehospital emergency medicine for children receiving palliative home care in Germany—a cross-sectional, exploratory study of EMS providers

Abstract

BackgroundThe prevalence of children with life-limiting conditions is rising, and since the amendment of the social insurance code in Germany, palliative home care teams have treated an increasing number of children. These teams provide 24/7 readiness, yet some parents still call the general emergency medical service (EMS) for various reasons. EMS is exposed to complex medical problems in rare diseases. Questions arose about the experiences of EMS and whether they felt prepared for emergencies involving children treated by a palliative care team.MethodsThis study used a mixed methods approach to focus on the interface between palliative care and EMS. First, open interviews were conducted, and a questionnaire was developed based on the results. The variables included demographic items and individual experiences with patients. Second, a case report of a child with respiratory insufficiency was presented to assess the spontaneous treatment intentions of EMS providers. Finally, the need, relevant topics, and duration of specific training in palliative care for EMS providers were evaluated.ResultsIn total, 1,005 EMS providers responded to the questionnaire. The average age was 34.5 years (±10.94SD), 74.6% were male. The average work experience was 11.8 years (±9.7), 21.4% were medical doctors. Experience with a call of a life-threatening emergency involving a child was reported by 61.5% and severe psychological distress during such a call was reported by 60.4%. The equivalent distress frequency for adult patient calls was 38.3%. (p < 0.001). After review of the case report, the EMS respondents suggested invasive treatment options and rapid transport to the hospital. Most (93.7%) respondents welcomed the consideration of special training in pediatric palliative care. This training should include basic information about palliative care, an analysis of cases involving palliatively treated children, an ethical perspective, practical recommendations, and available (24/7) local contact for further guidance and support.ConclusionEmergencies in pediatric palliatively treated patients were more common than expected. EMS providers perceived the situations as stressful, and there is a need for specific training with practical aspects.

Implementation and evaluation of a palliative care training unit for EMS providers

“…We structured the TU based on the demands of an interview study ( n = 15) and a questionnaire study with 1,005 EMS providers (emergency medical technicians (EMTs)/paramedics, n = 789; emergency medical doctors (EMDs), n = 226). We identified topics that could be categorized into three main components: basics of palliative care, theoretical and practical aspects of PPC and emergencies ( 8 ). The structure, the aims, and the duration of each module in the TU are shown in Figure 1 .…”

“…The structure, the aims, and the duration of each module in the TU are shown in Figure 1 . Following this study, the TU has been translated into English and can be downloaded free of charge ( 18 ).…”

“…These conditions may be stable but also prone to complications including seizures and pneumonia ( 7 ). The number of emergency medical service (EMS) responses for patients with LLCs has also grown ( 8 ). Generally, emergencies in infants or children are a challenge for the EMS since they are relatively rare, comprising up to just 10% of all 911 calls ( 5 , 9 , 10 ).…”

“…In a previous study ( 16 ), we evaluated the individual experiences of EMS providers with a focus on pediatric emergency calls ( 8 ). EMS providers reported distress in these emergencies, suggested invasive treatment (intubation and ventilation) in a case vignette of a child with pneumonia, lacked confidence, and stated the need for specialized pediatric training.…”

Notärztliche Einsätze in der ambulanten Palliativversorgung von Kindern, Jugendlichen und jungen Erwachsenen

“…Falle pädiatrischer Patient*innen auch beim Einsatzteam eine hohe emotionale Belastung [18]. Notfallteams sind geschult, Lösungen für konkrete Probleme zu finden, aktiv Medikamente zu verabreichen und Den Eltern mitzuteilen, dass sich ihr Kind tatsächlich in der Finalphase befindet und versterben wird, ist für kurativ arbeitendes medizinisches Personal nicht einfach.…”