Análisis del uso de la línea telefónica voluntaria 24/7, por parte de los usuarios adscritos al programa de Cuidados Paliativos Pediátricos del Hospital Nacional de Niños “Dr. Carlos Sáenz Herrera”, Caja Costarricense de Seguro Social, durante el periodo enero de 2022 y diciembre de 2023

Abstract

Introduction: One of the most important aspects for patients, their families, and caregivers is the accessibility and flexibility of pediatric palliative care services. Studies have shown that telephone lines are useful and may be preferred over inperson consultations. Qualitative evidence suggests that these services benefit patients and caregivers by providing 24/7 access to medical care, emotional support, and counseling from health professionals. The healthcare system also benefits from a reduction in avoidable hospital admissions and the use of other referral services. One of the main objectives of pediatric palliative care is to provide care which accounts for the patient's preferences, including therapeutic decisions, the place of care, and, when possible, the place of death. Dying in a place of preference—such as home —is considered an indicator of good pediatric palliative care. The “Dr. Carlos Sáenz Herrera” National Children's Hospital implemented, a complementary service of pediatric palliative care, which is the subject of this study. Objectives: To describe the caseload and use of the palliative telephone line by patients enrolled in the pediatric palliative care program from January 1, 2022, to December 31, 2023, at the “Dr. Carlos Sáenz Herrera” National Children's Hospital. Methodology: This is an observational, retrospective study based on the review of medical records. It included patients aged 0 to 18 years with a terminal medical condition, admitted to the HNN palliative care program during the period from January 1, 2022, to December 31, 2023, who voluntarily used the palliative telephone service during the specified time frame. Results: 36% of the consulting population using the HNN's palliative telephone line have a primary pathology associated with congenital heart defects, such as ventricular septal defect (VSD), and central nervous system (CNS) tumors, such as brainstem glioma. Approximately 50% of patients who entered the CPP program had a survival rate of more than 121 days from the start date of this assistance; indeed, 4% of these children received care exceeding 2500 days. 19% remained in the program for more than 70 days from entry to the palliative telephone program to the date of their death; some of them stayed in the program for six to nine months. During the study period, a total of 294 calls were received on the palliative telephone line, averaging 12.25 calls per month. 27% of these calls were made by patients who stayed in the program for more than seventy days until their death, and 50% came from users with less than 56 days in the program until their death. Most users of the palliative telephone line recorded as deceased, equivalent to 65%, died at home. Conclusions: There is evidence of a prolonged preference for using palliative consultation telephone services, considering the elapsed time from the entry into the program to the user's date of death for which care is requested. The CPP service, during the study period, received nearly three hundred calls; this care allowed users to have their needs met without requiring in-person consultations, optimizing home care and, simultaneously, reducing emergency or outpatient consultations. The telephone line achieves its objective of complementing in-person medical care while providing emotional support in necessary cases, adhering to the principles of comprehensive care, considering the fact of dying at home. Understanding the background of the use of the telephone consultation service by patients enrolled in the CPP program, or their families and caregivers, is useful for improving end-of-life care and, concomitantly, helping patients die in their place of choice (home) rather than in an institutional setting, fulfilling the success policy of palliative care.