Pediatric residency programs around the world offer varied teaching opportunities for children with complex clinical conditions. [11] As in this research, there is recognition of the importance and need for teaching and training in palliative care, yet many pediatricians who finish their training are still unprepared.
A survey conducted in Italy in 2017 analyzed pediatric residency programs in terms of PPC workload and residents' knowledge on the topic. Although the need for teaching was acknowledged, the annual workload varied from 50 to 90 minutes. Strategies such as theoretical classes on pain management were used, but observing more experienced residents and assisting teams was considered most effective. [12]
An American study carried out in 2019 highlighted the need to establish a formalized curriculum for teaching PPC and end-of-life care throughout residents' training. [13]
A study conducted at John’s Hopkins Children’s Center analyzed the specific workload in palliative care for residents, which included six annual classes on palliative care and end-of-life care, in addition to a grand round session to discuss complex cases. The topics of the classes included an introduction to the PPC, spirituality, symptom management, care at the time of death, and mourning. Despite the structuring, the participation of the residents in these classes was not mandatory. Similarly to this research, although theoretical discussions existed, they were not uniformly carried out for all residents. [14]
A recent survey in Brazil assessed pediatric residents' perceptions of PPC teaching. Failures in the teaching-learning process were highlighted, including the scarce workload dedicated to teaching, skill training, and guidance on whether to maintain invasive measures. [15-16]
The results coincide with those of this research, reinforcing the need to review the teaching-learning process for pediatric residents, given the similarity in the identified gaps. The unpreparedness of addressing pediatric patients in palliative care seems to be a constant around the world.
In Italy, between 2011 and 2012, a study involving 33 pediatric teaching hospitals explored teaching in PPC. The study evaluated knowledge of pain management, skills acquired in end-of-life care, and residents' reactions to experiences with these patients. Only 11% of participants felt professionally prepared to handle all aspects of PPC. Additionally, 98.5% of the residents emphasized the need for comprehensive teaching of PPC throughout their specialization. [17]
Some alternatives to modify this scenario include helping residents develop confidence in their skills, promoting a welcoming environment, and encouraging active participation of the resident in the teaching-learning process. [18]
Education during residency should prioritize training in skills and competencies essential for generalist physicians, such as the development of communication skills, symptom management, and ethical concepts. [14]
Until recently, the teaching of palliative care was not mandatory in medical education. The COVID-19 pandemic highlighted the importance of the subject, leading to new discussions about the need to include this teaching in medical training. A 2021 study analyzed the curricula of 315 medical schools in Brazil and revealed that only 14% of them had formalized the teaching of palliative care. [19]
Various studies have noted weaknesses in medical curricula in this context. [20] In 2022, Resolution CNE/CES No. 3 made it mandatory to review and adapt the pedagogical projects of medical schools to include palliative care teaching in the curriculum. [21]
There was significant concern among the interviewees about the bioethical and legal aspects of decision-making processes in the treatment of patients in palliative care. Due to the persistent misconception that palliative care applies only to terminal patients, many questions arise, especially in pediatric management, which is often associated with chronic pathologies.
A recent study in the legal sphere emphasized the need to expand clarification in medical education on concepts such as dysthanasia and therapeutic obstinacy, which are identified as obstacles to the proper implementation of palliative care. This research highlighted that the taboos around the end of life affect not only healthcare professionals but also the entire society, generating legal insecurity for professionals and hindering proper patient care. [22]
In Brazil, the discussion of these aspects in the pediatric age group is a recent agenda. In pediatric palliative care, a pillar of bioethics is the principle of the best interest of the child and adolescent. In summary, this implies that "every intervention in the life of the child and adolescent should prioritize the interests of the child as a developing person." 23]
The bioethical and legal aspects of pediatric palliative care involve various particularities, such as disagreements between legal guardians, dilemmas about the suspension of artificial life support, boundaries between eugenics and dysthanasia, defensive medicine, and the autonomy of the child, among others. [23]
In many places, there is resistance from the assisting team to recognize the need for the palliative care team to act together due to the false impression of symptom control in patients. It is worth noting that many of these professionals were trained at a time when discussions on this topic were incipient. [24]
A study analyzing residents from more than 190 pediatric hospitals showed that residents feel more secure and better equipped when a palliative care team is present in the service. [25]
The Brazilian Network of Pediatric Palliative Care revealed that 56.7% of Brazilian services offering pediatric palliative care include pediatric residents on their medical teams. By 2021, Paraná had six pediatric palliative care services, mostly concentrated in major centers, as evidenced in this research. However, even with these services, the number of professionals available is not enough to meet demand, as observed by the participants. [26]
As reported by the interviewees, a child can understand the risk of dying and what death means. This depends on the stage of development they are in, personal and family experiences, individual temperament, behavioral patterns between the child and their caregivers, and the environment in which they are inserted. [27]
Regarding conversations with family members, a qualitative study conducted in the Netherlands analyzed the perceptions of families of children with life-threatening diseases to understand what the barriers would be at that time. [28]
Ten barriers to effective communication were identified: lack of timely communication, failure of doctors to request parents' opinions, unpreparedness of parents before and after conversations, lack of clarity on the next steps of treatment, difficulty in expressing uncertainties in patient progress, omission in scheduling follow-up conversations, excessive presence of people in the conversation environment, parents' concern about communicating bad news to their children, receipt of news in inappropriate environments, and excessive use of medical terminology that makes it difficult for the family to understand. [28]
The participants in this research highlighted barriers, especially regarding the opportune moment and the appropriateness of the timing of conversations with families of children in palliative care. It is crucial to remember that families perceive the honesty and empathy of bad news communicators, and these moments will often be remembered for years. [29]
It is concluded that most newly graduated pediatricians feel unprepared to address palliative care patients, both from a theoretical and practical standpoint. The gaps in teaching were attributed to a lack of formal and specific workloads in pediatric palliative care, highlighting the importance of the palliative care team not only in patient care but also as facilitators of teaching.
There is a highlighted need to reduce learning by chance and create specific and mandatory internships during residency for experience with palliative patients, aiming to develop competencies to provide quality care to patients after their training. Given the relevance of palliative care in current Brazilian and international scenarios, future research may be directed toward the development and enhancement of methods for teaching pediatric palliative care in medical residency.