Perfil e abordagem dos pacientes pediátricos com indicação de cuidados paliativos em um hospital do sul do Brasil: estudo prospectivo observacional

Abstract

Technological evolution in health in recent centuries has allowed a very large epidemiological change in the causes of illness and death in the population, also affecting childhood. Many patients are chronically dependent on healthcare, bringing new challenges to the care of children. It is in this new logic of care that Pediatric Palliative Care emerges. The Brazilian Society of Pediatrics, faced with this new field of pediatric work, developed guidelines to facilitate the promotion of the practice. This study sought to investigate whether such guidelines are being complied with in a teaching hospital in the south of the country through the application of a questionnaire with patients and family members hospitalized in pediatric infirmary units and Pediatric Intensive Care Unit in a period of 9 months. In addition, the epidemiological profile of this sample of the population was sought. In total, 124 families and patients participated in the study, with a predominance of males, under 6 years old, with a family income of less than 2 minimum wages and maternal education at elementary level. Most diagnoses are chronic, with extreme prematurity being the most frequent diagnosis with 37 patients (25%), followed by cerebral palsy with 17 patients (13.7%). Regarding the principles, it was found that communication took place properly, as well as the participation of a multidisciplinary team. Pain management, on the other hand, still needs to be improved, since no pain scale was used to assess patients, despite the pain scales applied showing pain control, different from the parents' perception of their children's suffering. Other symptoms such as tiredness, drowsiness and anxiety were reported as worrisome to the patients' relatives. Spirituality was not addressed in 55.6% of the consultations, showing that the health team should value this part of the anamnesis more. It was concluded, therefore, that the hospital partially complies with the guidelines of the Brazilian Society of Pediatrics in assisting children with an indication of Palliative Care. A flow of action is proposed at the end for the best implementation of the guidelines.