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. Following this study, the TU has been translated into English and can be downloaded free of charge (18).

In the following step, we conducted meetings with the supervisors of all 10 EMS organizations in Middle Hesse, Germany. In this region with approximately. 1.1 million inhabitants, one PCT is on duty to care for 10–18 PPC patients per day. On average, 6–10 EMS responses are recorded for children with LLCs registered with the PCT per year. Since 2010, EMS providers are required to complete a yearly training program (19) and following the supervisors' decision, the TU was integrated into this compulsory yearly EMS provider training throughout the region.

In the questionnaire of the previous study (Q1), all EMS providers were asked to name topics for a TU and answer questions on their theoretical and practical knowledge of PPC. Additionally, they could describe their experiences of previous EMS responses and their psychological burden. In this study, questionnaire 2 (Q2) was used to compare the results of the participants before the TU—Q1—and afterward—Q2. Both questionnaires are freely accessible in the addendum of this article. All participants were asked to give themselves an individual anonymous code using the second letter of their first name, the second digit of their postal code, the second letter of their place of birth, and the second digit of their mobile number.

All training participants provided informed consent to take part in the Q2 questionnaire. We included participants into the study if they answered both questionnaire Q1 and Q2. All participants had to agree to the study management and data protection (see addendum). All TUs were conducted by the corresponding author in the local EMS training facilities. After the TU was finished, the participants were asked to complete the Q2 questionnaire.

First, the theoretical and practical knowledge of the EMS providers were examined. Subsequently, the participants were asked to assess a case vignette. In PPC patients, specialized care is required to pursue appropriate goals and actions in accordance with patient preferences. This means invasive treatment is not always wrong. Nevertheless, measures that are not indicated are not an option at any time. The fictitious case was a 15-year-old female with hypoxic-ischemic encephalopathy due to perinatal asphyxia and acute pneumonia and respiratory distress requiring timely intervention to improve gas exchange and/or symptom control. We asked for the participants' therapeutic approach and wanted to know if they would use invasive (e.g., intubation) or non-invasive (e.g., oxygen-inhalation) treatments.

One question was whether the TU could influence the attitude of EMS providers in that typical scenario. In addition, we wanted to know whether the TU met their expectations, whether questions could be asked and were answered sufficiently, and lastly, whether they were interested in repeating this TU and/or would recommend it to colleagues. The questionnaire used a Likert scale from 1 (min. confidence) to 10 (max. confidence).

Participants could respond in paper form or participate online via a QR code (Lime Survey® GmbH, Hamburg, Germany). The data provided by the study participants were anonymously collected and saved. The individual code generated for each participant excluded the possibility of double participation.

This study was approved by the Ethics Committee of the Justus Liebig University of Giessen, Hesse, Germany (file number: 88/2016). The German Registry of Clinical Studies consented to this study (DRKS-ID: 00013318). Additionally, it was forwarded to the World Health Organization Registry for Clinical Trials.

Descriptive statistics were analyzed using SPSS 26.0 (IBM Corp., NY, USA). To assess group-specific differences, statistical tests were performed. The Wilcoxon test was used to compare ranks if the variables did not follow normal distribution. The Chi-squared test was performed to assess differences in distribution. A p-value <0.05 (two-tailed) was considered statistically significant.

In total, 782 (77.8%) of the previous 1,005 participants of Q1 responded to Q2.

99.2% of the questionnaires were fully completed. Of these, 663 (84.8%) were EMTs and 119 (15.2%) were EMDs (Table 1). Male participants were more common in both groups (EMT: 76%; EMD: 71.4%). EMDs were significantly older and had more work experience than EMTs. The scope of work was different between the two groups; while 74.9% of the EMTs' work was full-time, 50.0% of the EMDs' work was fee-based. All educational levels were represented within the study population (EMT: “Rettungssanitäter” (520 h of education): 25.7%; “Rettungsassistent” (2 years of education): 55.8%, “Notfallsanitäter” (3 years of education): 18.5%) (EMD: residents: 25.2%; fellows: 45.3%; consultants: 22.6%; chiefs: 6.9%).

1.5% of the study participants of Q2 answered online and directly imported into the database. Most responses were imported manually, and the data were double-checked by the co-authors. Between January 1 and December 31 2018, 78 training units were conducted in 10 facilities with a mean distance of 32.2 km to the PCT (total distance covered: 5,023 km).

Compared to Q1, we saw an improvement in memorization of theoretical facts (Figure 2 and Table 2). The participants showed a better understanding of the responsibilities of PCTs. In the 12 questions concerning theoretical knowledge, the percentage of correct answers increased from 53%–91% (min.—max.) to 92%–98%. End-of-life care was recognized in the same manner. Participants could better name the legal basis of palliative home care with a significantly increased rate of correct answers from min. 74.4% to max. 98.5%. In Q1, 24.9% of respondents could recognize the typical German abbreviation for a PCT (“SAPV”), and in Q2, the proportion rose to 96.0% (χ² = 479.275, p < 0.001).

We wanted to ascertain whether the participants could find the contact details of the local responsible PCT. In this practical skill, the rate of correct answers increased from 35.7% to 91.5%. Another benefit of the TU was that while only 9.3% knew about the existence of a PPC team beforehand, 91.5% were aware after completing the TU (χ² = 382.487, p < 0.001).

We saw changes in the approaches to the fictitious but typical case report (Figure 3). There was a slight but significant decline in the rate of selecting invasive ventilation and a reduced rate of transporting the patient to hospital (50% to 14%, χ² = 235.879, p < 0.001). Before the TU, 30.4% of the participants would have called a PCT in this situation, but afterward, the rate increased to 84.5% (χ² = 189.451, p < 0.001). No significant differences were seen between EMTs/EMDs or gender.

The participants provided information regarding their confidence in an EMS response to pediatric and adult patients with LLCs (1 = very low to 10 = very high confidence). The confidence with pediatric patients was lower than with adult patients [median 3 vs. median 7; p < 0.001 (Wilcoxon’s test)]. We asked whether the respondents felt confident attending future pediatric emergencies following the TU. The participants' confidence increased significantly from a median of 3 to a median of 6 (Figure 4). 97.6% of all participants would recommend the TU to other colleagues. 75.6% stated that they felt better prepared for future responses (EMT: 78.4%; EMD: 60.9%; χ² = 17.462, p < 0.001).

We asked if participants would put more emphasis on clarifying treatment goals with legal guardians if time permitted. 66.5% (EMT: 61.2% (95% CI, 59.2%–63.0%); EMD: 70.1% (95% CI, 67.4%–73.2%)) were uncertain.

The EMS providers selected how they wanted to receive important information about the patient and communicate with a PCT (Table 3). The patient's emergency file and health-care directive/DNR order were preferred. In addition, there was a significant increase in the belief that this information is already available from the 911 dispatcher.

Participants rated the quality of the TU (min. 1 to max. 9 points) with a median of 9 for both EMTs and EMDs (EMT (95% CI, 8.2–8.5); EMD (95% CI, 7.9–8.7). 96.6% of all participants (EMT: 97.2% (95% CI, 96.1%–98.2%); EMD: 93.1% (95% CI, 91.2%–95.5)) answered that all questions were clarified sufficiently.

In the Q1 study, >90% of providers could recall an EMS response involving adults and 60% had experience with children with an LLC (8). This individual experience could explain the high rate of correct answers regarding the legal basis of palliative home care. It was surprising that only <10% of the study participants were unaware of the existence of a PPC team. In addition to the learning success, the TU could be helpful to improve the network and public perception of PPC.

This case was chosen because it represents a typical EMS scenario in a child receiving palliative home care. This fictitious patient has a life-limiting neurological condition without progression but with progressive sequelae (muscular weakness, dysphagia, aspiration, pneumonia) (16). It was also chosen because there was no right or wrong response as different families may have different preferences. Therefore, for EMS teams, it is best practice to act in accordance with the patients’ and their families’ wishes if there is no obvious violation of the child rights. However, this case has the potential to provide insights into the attitude of the EMS providers. Compared to Q1, there was a significant decrease in invasive treatment and transportation to hospital, which reflects the increased awareness of the EMS providers and the willingness to provide the most comfortable care for the patient. Furthermore, it indicates the need for the EMS to have standards regarding the decision-making processes in emergencies involving patients with LLCs.

Regarding the emotional burden of pediatric emergency calls, the providers' confidence was significantly lower than in adult cases. To our knowledge, there are no published studies comparing EMS operations involving children and adults with LLCs. Emotional aspects are important because overload is a factor for developing post-traumatic stress disorder (PTSD) (35). Mishra et al. revealed that in EMS personnel (n = 105), 83% reported experiencing symptoms and 5% met the clinical criteria for PTSD (36). Education and peer group meetings may help prevent the development of PTSD (37). A mixed methods study by Shearer that included 66 participants in Perth, Australia, found that EMS personnel sought further education in communication and ethics to improve their confidence (38). Although emotional health was not assessed in our research questions, we suggest that the mental health of EMS providers regarding emergencies in children with LLCs should be further investigated.

Another result of our study was that before and after the TU, most participants felt responsible for patients with LLCs in emergencies even if they were treated by a 24/7 palliative home care team. This is consistent with the work of Hoare in Cambridge, UK, where study participants were broadly consistent in allowing adults to die at home (39). In a study from Canada, Jensen discussed a program for paramedics who care for long-term care residents to be able to play a key role in end-of-life care (40).

One major issue discussed with the participants of Q2 was both EMTs’ and EMDs' fear of making a mistake. A family's journey from hoping their beloved child will survive to accepting the unacceptable is very complex and may be difficult for an EMS team to understand, especially within a few minutes. However, in emergencies, there is a need for rapid decision-making. Therefore, we proposed a standard operating procedure (SOP) in the TU (Figure 5). We had three main aims with this proposal: (a) to encourage the EMS providers to act directly if there is no information that allows withholding of CPR; (b) to encourage collaboration with a PCT; and (c) to recognize a child with an LLC. These may be difficult to do alongside taking an anamnesis with the parents, which, in practice, is not only limited by the time pressure but also by possible language or cultural barriers. In the literature, we found no instructions or SOP for pediatric patients with LLCs, and during the discussions in the TU, the proposed SOP appeared to be broadly accepted.

All patients of a PCT and their families should be provided with a comprehensible EMS letter, an emergency folder (24/7 contact number of the PCT, medication plan), and if available, a health-care directive (42). If an emergency is anticipated, the legal guardians should be fully informed about therapeutic options and their consequences. If they have a clear treatment preference, they should be offered an advance directive to sign on behalf of their child. Communication, information, and clarity of the therapeutic goal were the issues that were most frequently and comprehensibly asked about after the TU. The data from previous EMS responses to children with LLCs were helpful to underpin the fact that in most cases, there is enough time to ask for the emergency folder, call the PCT, and make a decision for the child together with the family. If CPR is not contraindicated and the parents don’t disagree, then advanced life-support (ALS) should be started until the EMS team gets new information. DNR orders or Physician Orders for Life-Sustaining Treatment (POLST) forms can help the EMS make decisions (43).

In time-critical situations, it is important that the EMS is rapidly available despite the 24/7 on-call PCT, which needs more time to arrive at the scene. Cooperation at the important interface of EMS providers and PCTs is urgently needed for this highly vulnerable group of children and adolescents. The TU was a further step to improve this cooperation.

The questionnaire was developed with a focus on practical aspects, but there was no Delphi process to review the questions and no tests were performed to assess reliability or validity.

Critically, it should be mentioned that the TU was only led by one trainer, which may have had a negative impact on objectivity and generalizability.

The recruitment rate could have been improved. The differing requirements of 16–38 h of annual training for EMTs might have contributed to the fact that we did not reach all 431 EMTs with 520 h or 2 years of education from Q1.

The 60-minute duration of the TU was too short to cover all the important issues of palliative care. On the other hand, this duration made it easy to implement the TU into the mandatory education program of all 10 EMS organizations.

This study is limited to the experiences of German EMS teams with a system involving prehospital EMDs.

We decided to ask the participants to answer the questionnaire immediately after the TU to avoid a low response rate. This, however, does not allow conclusions regarding long-term effects of the TU.

Fictitious case reports cannot represent reality, but they are an appropriate tool to conduct studies in palliative care (23, 34). We chose a vignette that was, according to our previous study, typical for an EMS response involving children with LLCs (16).

To further increase the scientific validity, a control group and different trainers should be used in subsequent studies.