A percepção dos médicos pediatras sobre cuidados paliativos em crianças e adolescentes

Abstract

The great technological advancement in medicine and healthcare has extended the life expectancy of patients, but often without guaranteeing its quality. Consequently, questions about prolonging the dying process without quality of life become increasingly prominent. In this scenario, palliative care takes on a leading role and has become more frequently recommended for patients with life-threatening chronic illnesses. Pediatric patients are eligible for palliative care in various pathologies, however, in less than 10% of cases, they are implemented. The aim of this study was to analyze pediatricians' perceptions of palliative care in children and adolescents and to understand the reasons for not implementing this treatment when recommended. To achieve this, a qualitative investigation was conducted through an integrative review on the topic and semi-structured interviews with twelve physicians working with patients from neonatal to adolescent stages in two tertiary hospitals in Rio de Janeiro, Brazil. The interviews followed a script with questions about sociodemographic and professional data and open questions regarding palliative care in pediatrics. The interviews were audio-recorded and fully transcribed for subsequent content analysis of textual data. The data produced in the fieldwork were classified into categories. The results showed that the topic of palliative care is still little known among physicians, or they have a mistaken conception of a treatment indicated when there is nothing more to be done for a patient who is dying. This lack of knowledge stems from the scant approach to this topic in medical education, both in undergraduate and residency programs. Physicians' lack of preparedness, coupled with difficulties in communicating with families and dealing with the death of children, generates significant distress among professionals that can lead to Burnout Syndrome. On the other hand, ethical conflicts arise due to the difficulty of ensuring the autonomy of children and families in sharing therapeutic decisions and also due to professionals' fear of facing legal demands related to life support discontinuation procedures. It is concluded that for effective implementation of palliative care in pediatrics in cases where it is recommended, it is necessary to enhance medical education by mandatorily including this topic in medical school curricula, as well as providing communication training in delivering difficult news and emotional support for professionals working in these services.