Pediatric palliative medicine in Brazil: an ethical reflection of medical practice

The ethical barriers involved in the practice of pediatric palliative medicine remain high and challenging. In terms of medical ethics, attention should be paid to culture, religion and family values, in order to promote adequate care for caregivers, even in case of loss of a patient, promoting a bereavement process with less suffering. The data were qualitatively analyzed by IRAMUTEQ software, with a high degree of significance of essay responses on ethics related to palliative care in pediatrics. Discussions about prognosis, goals of care, and treatment options can be very difficult, as legally supported palliative care alternatives may diverge from the wishes of the family. We conclude that divergences exist between the application of palliative medicine and ethics regarding acceptance and end-of-life management of pediatric patients. Ethical challenges are constantly complex situations in which palliative physicians must relate legal concepts, knowledge and family values, which often conflict. The quality of palliative care depends initially on the ability of specialized professionals to identify and explain the ethical issues that generate conflict or uncertainty, in addition to raising discussions with the family about the medical, moral and legal issues surrounding the difficult situation.

Las barreras éticas involucradas en la práctica de la medicina paliativa pediátrica siguen siendo altas y desafiantes. En términos de ética médica, se debe prestar atención a la cultura, la religión y los valores familiares, con el fin de promover una atención adecuada a los cuidadores, incluso en caso de pérdida de un paciente, promoviendo un proceso de duelo con menos sufrimiento. Los datos fueron analizados cualitativamente por el software IRAMUTEQ, con un alto grado de significación de las respuestas de los ensayos sobre la ética relacionada con los cuidados paliativos en pediatría. Las discusiones sobre el pronóstico, los objetivos de los cuidados y las opciones de tratamiento pueden ser muy difíciles, ya que las alternativas de cuidados paliativos legalmente respaldadas pueden divergir de los deseos de la familia. Se concluye que existen divergencias entre la aplicación de la medicina paliativa y la ética en relación con la aceptación y la gestión del final de la vida de los pacientes pediátricos. Los retos éticos son situaciones constantemente complejas en las que los médicos paliativos deben relacionar conceptos jurídicos, conocimientos y valores familiares, que a menudo entran en conflicto. La calidad de los cuidados paliativos depende inicialmente de la capacidad de los profesionales especializados para identificar y explicar las cuestiones éticas que generan conflicto o incertidumbre, además de plantear debates con la familia sobre las cuestiones médicas, morales y jurídicas que rodean la difícil situación.

As barreiras éticas envolvidas na prática da medicina paliativa pediátrica ainda são grandes e desafiadoras. No que diz respeito à ética médica, deve-se prestar atenção à cultura, religião e valores familiares, a fim de pro-mover um cuidado adequado para os cuidadores, mesmo em caso de perda do paciente, promovendo um pro-cesso de luto com menos sofrimento. Os dados foram analisados qualitativamente pelo software IRAMU-TEQ, com um alto grau de significância das respostas dos ensaios sobre ética relacionada aos cuidados palia-tivos em pediatria. As discussões sobre prognóstico, objetivos de cuidados e opções de tratamento podem ser extremamente desafiadoras, uma vez que as alternativas de cuidados paliativos legalmente suportadas podem divergir dos desejos da família. Nosso estudo conclui que existem divergências entre a implementação da medicina paliativa e a ética em relação à aceitação e manejo do fim da vida de pacientes pediátricos. Os desa-fios éticos são constantemente situações complexas em que os médicos paliativistas devem relacionar concei-tos legais, conhecimento e valores familiares, que frequentemente entram em conflito. A qualidade dos cuida-dos paliativos depende inicialmente da capacidade de profissionais especializados identificarem e explicarem as questões éticas que levam a conflitos ou incertezas, além de levantar discussões com a família sobre ques-tões médicas, morais e legais que cercam a situação difícil.

Percepciones de un equipo de cuidados paliativos pediátricos acerca del clown de hospital / Pediatric palliative care team perceptions' about hospital clowns / Percepções de uma equipe de cuidados paliativos pediátricos sobre o clown de hospital

Resumen La presente es una síntesis de resultados de una investigación mayor, cuyo objetivo principal fue conocer las perspectivas de familias y equipo de salud respecto de la presencia de clowns de hospital trabajando en cuidados paliativos pediátricos en una unidad en Chile. Guiado por un paradigma interpretativo, estrictos criterios de calidad y éticos, la metodología utilizada fue de tipo cualitativo, aplicando las técnicas de recolección de datos de entrevistas en profundidad, análisis de documentos y grupos de discusión. La sección de datos sobre el equipo aquí presentados, se analizó a través de las técnicas análisis de contenido y análisis crítico del discurso. Los resultados indican que la figura del clown es percibida como un mediador y valorada como terapia complementaria, especialmente por las competencias socioemocionales de esos profesionales y el juego que se utiliza como herramienta de intervención. Las conclusiones señalan que las competencias socioemocionales que promueve el clown de hospital son fundamentales para el trabajo en cuidados paliativos.

Abstract This is a synthesis of results of a major research which main objective was to know the perspectives of families and the health team regarding the presence of hospital clowns working in pediatric palliative care in a unit in Chile. Guided by an interpretivist paradigm, strict quality and ethical criteria, the methodology used was qualitative, applying in-depth interviews, document analysis and discussion groups as data collection techniques. The data section presented here about the health team was analyzed through content analysis and critical discourse analysis techniques. The results indicate that the figure of the clown is perceived as a mediator, valued as complementary therapy, especially due to the socio-emotional competences of these professionals and play used as an intervention tool. The conclusions indicate that the socio-emotional competences promoted by the hospital clown are fundamental to work in palliative care.

Resumo A presente é uma síntese de resultados de uma investigação maior, cujo objetivo principal foi conhecer as perspectivas de famílias e equipe de saúde a respeito da presença de clowns de hospital trabalhando em cuidados paliativos pediátricos em uma unidade no Chile. Guiado por um paradigma interpretativo, critérios estritos de qualidade e éticos, a metodologia utilizada foi de tipo qualitativo, aplicando as técnicas de coleta de dados de entrevistas em profundidade, análise de documentos e grupos de discussão. Os dados sobre a equipe aqui apresentados, foram analisados através das técnicas de análise de conteúdo e análise crítica do discurso. Os resultados indicam que a figura do clown é percebida como um mediador e valorizada como terapia complementar, especialmente pelas capacidades sócio-emocionais desses profissionais e o jogo que se utiliza como ferramenta de intervenção. As conclusões apontam que as capacidades sócio-emocionais que promovem o clown de hospital são fundamentais para o trabalho em cuidados paliativos.

Atención en domicilio de pacientes NANEAS: experiencia del hospital de niños Dr. Roberto del Río / Home care of NANEAS patients: experience of the children's hospital Dr. Roberto del Río

El avance de las tecnologías de soporte vital ha aumentado la sobrevida de niños con patologías y secuelas graves, categorizados como NANEAS (Niños y Adolescentes con Necesidades Especiales de Atención en Salud) de mediana y alta complejidad. En el Hospital de Niños Dr. Roberto del Río se organizó un equipo de atención para NANEAS en 2014, que realiza visitas domiciliarias desde 2015 a pacientes médicamente complejos. OBJETIVO: Caracterizar la población atendida en domicilio y la modalidad de atención. PACIENTES Y MÉTODO: Estudio retrospectivo descriptivo mediante revisión de registro clínico electrónico y ficha clínica de NANEAS atendidos en domicilio del 2015 al 2018. RESULTADOS: Se analizaron 581 visitas a 81 pacientes, mediana 8 años, 78% hombres, 64% institucionalizados, 78% con patología neurológica de base, 75% de alta y mediana complejidad según clasificación SOCHIPE. De las visitas, 71% fue en comunas rurales, la mediana de tiempo de viaje 60 minutos y de atención 26 minutos. Un 60% de las visitas se realizó a pacientes con dispositivos médicos. En un 99% asistió pediatra, 33% enfermera y 68% otro profesional, que en 61% correspondió al neuropediatra. CONCLUSIONES: La mayor proporción de pacientes atendidos son de alta y mediana complejidad, usuarios de dispositivos médicos y la mayoría con patología neurológica de base, por lo que resulta fundamental contar con un neurólogo en el equipo interdisciplinario. Las visitas se realizan principalmente a comunas distantes por la dificultad de traslado de estos pacientes. Esta modalidad de atención promueve una mejor calidad de vida para niños y niñas médicamente complejos y para sus familias.

The advancement of life support technologies has increased the survival of children with serious pathologies and sequelae, categorized as NANEAS (Children and Adolescents with Special Health Care Needs) of medium and high complexity. At the Hospital de Niños Dr. Roberto del Río, a care team for NANEAS was organized in 2014, which has made home visits to medically complex patients since 2015. OBJECTIVE: To characterize the population attended at home and the care modality. PATIENTS AND METHOD: Retrospective descriptive study by reviewing the clinical file of NANEAS patients seen at home in this period. RESULTS: 581 visits were analyzed in 81 patients, median 8 years, 78% men, 63% institutionalized, 78% with neurological diseases. 75% were of high and medium complexity according to the SOCHIPE classification. Of the visits, 71% were in rural places, median travel time 60 minutes and direct attention 26 minutes. 60% of the visits were made to patients with medical devices, 99% attended by a pediatrician, 33% a nurse and 68% another professional, who in 61% corresponded to the child neurologist. CONCLUSIONS: The highest proportion of patients seen are of high and medium complexity with medical devices and with underlying neurological pathology, so it is important to have a neurologist in the interdisciplinary team. Many of the visits are made in places distant from the hospital center due to the difficulty of transferring these patients. This modality of care promotes a better quality of life for medically complex children and their families.

Conocimiento sobre cuidados paliativos pediátricos de los pediatras de atención primaria del Principado de Asturias, España / Knowledge of primary care pediatricians about pediatric palliative care in the Principality of Asturias, Spain

Resumen Introducción: Es importante conocer y evaluar la experiencia y el conocimiento de los pediatras de atención primaria del Principado de Asturias (España) sobre los cuidados paliativos pediátricos. Métodos: Se llevó a cabo un estudio descriptivo y transversal mediante un cuestionario dirigido a los pediatras de atención primaria del Principado de Asturias entre mayo y junio de 2018. Resultados: El 77% de los participantes no poseía formación previa y el 100% consideró que sus conocimientos en cuanto al tema no eran adecuados, a pesar de que el 37% había atendido en alguna ocasión a pacientes subsidiarios de este tipo de cuidados. Casi la totalidad de los encuestados (97%) consideraron necesaria la creación de una unidad de cuidados paliativos pediátricos. Conclusiones: El conocimiento del pediatra de atención primaria del Principado de Asturias con respecto a los cuidados paliativos pediátricos es muy escaso en una región en la que no se dispone de una unidad pediátrica exclusiva. Sería interesante aprovechar la gran disposición de este grupo de profesionales para mejorar su formación, además de incorporar la materia en facultades y en la formación del médico interno residente.

Abstract Background: To know and assess the experience and knowledge among primary care pediatricians about pediatric palliative care in the Principality of Asturias (Spain). Methods: A descriptive and cross-sectional analysis was conducted using a survey among primary care pediatricians in the Principality of Asturias between May and June 2018. Results: The majority of participants (77%) did not receive previous training, and 100% considered that their knowledge on the subject was insufficient, although 37% had occasionally attended to palliative care patients. Almost all participants (97%) considered that a pediatric palliative care unit is necessary. Conclusions: The knowledge of primary care pediatricians about pediatric palliative care is deficient in the Principality of Asturias, a region where no exclusive pediatric unit exists. It would be interesting to seize the opportunity to improve the training of these pediatricians, given their great willingness, and to incorporating the subject into colleges and medical intern formation as well.

Opinión de los profesionales de la salud sobre un documento de registro de directivas de adecuación de esfuerzo terapéutico en pediatría / Opinion of health professionals on a document to record guidelines for the adequacy of therapeutic efforts in pediatrics / Opinião dos profissionais de saúde sobre um documento de registro de diretrizes de adequação do esforço terapêutico em pediatria

Resumen: Introducción: en la asistencia médica de niños con enfermedades que amenazan o limitan la vida (EALV), en ocasiones, es necesario realizar adecuación del esfuerzo terapéutico (AET). La Unidad de Cuidados Paliativos Pediátricos del Centro Hospitalario Pereira Rossell (UCPP-CHPR) implementó un procedimiento de toma de decisiones sobre AET y registro en la historia clínica. Objetivo: conocer la opinión de los profesionales de la salud respecto a la utilidad del documento de registro de AET, las principales dificultades encontradas y el interés en capacitarse al respecto. Material y método: estudio descriptivo, transversal, mediante encuesta a médicos y licenciados de enfermería del CHPR entre el 23 de octubre y el 12 de noviembre de 2018. Se contó con el aval del Comité de Ética. Resultados: 75,4% (181/240) de los encuestados había asistido a niños con registro de AET; ocasionalmente: 73,5%, frecuentemente: 21,5%. Consideraron útil contar con registros de AET: 30%, y muy útil: 58%. Expresaron encontrar dudas éticas, clínicas o legales, ocasionalmente: 51,4%, frecuentemente: 27,6%; las principales dudas: responsabilidad al cumplir las directivas y la falta de firma de los padres. Las principales dificultades referidas fueron que los padres no cuentan con el documento durante la atención y que éstos están angustiados y solicitan "hacer todo". La mayoría de los profesionales expresó que sería útil o muy útil recibir más información o capacitación sobre las directivas de adecuación del esfuerzo terapéutico (DAET). Conclusiones: la mayoría de los profesionales encuestados habían participado en la atención de niños con registro de AET. Consideraron útil, o muy útil, contar con estos registros, pero expresaron tener dudas clínicas, éticas o legales ocasionalmente.

Summary: Introduction: during the medical care of children with life-threatening or life-limiting conditions (EALV), sometimes is necessary to adequate the therapeutic effort (ATE). The pediatric palliative care unit of the Pereira Rossell Hospital Center (PPCU- PRHC) implemented a decision-making procedure on ATE and its registration in the clinical history. Objective: to know: the opinion of health care professionals regarding the utility of the ATE registration document, the main difficulties found, and the interest in training activities. Material and method: descriptive, cross-sectional study, by means of a survey of physicians and nurses working in the PRHC, between 23 / 10-12 / 11/2018. It was endorsed by the Ethics Committee. Results: 75.4% (181/240) of the respondents had attended children with ATE documents, occasionally: 73.5%, frequently: 21.5%. They considered it useful to have ATE records: 30% and very useful: 58%. They expressed to find ethical, clinical and / or legal doubts, occasionally: 51.4%, frequently: 27.6%; the main doubts: responsibility when fulfilling the directives and the lack of signature of the parents. The main difficulties referred to were: that the parents do not have the document at the consultation, and that they are distressed and ask to "do everything". Most professionals expressed that it would be useful or very useful to receive more information and/ or training on ATE. Conclusions: most of the professionals surveyed had participated in the care of children with ATE registration. They considered it useful or very useful to have these records, but they expressed occasional clinical, ethical and/ or legal doubts.

Resumo: Introdução: na assistência médica de crianças com enfermidades que ameaçam ou limitam a vida (EALV), em algumas ocasiões, é necessário adequar o esforço terapêutico (AET). A Unidade de Cuidados Paliativos pediátricos do Centro Hospitalario Pereira Rossell (UCPP- CHPR) implementou um procedimento para a tomada de decisões sobre AET e registro no prontuário do paciente. Objetivo: conhecer a opinião dos profissionais de saúde em relação à utilidade do documento de registro de AET, as principais dificuldades encontradas, e o interesse em capacitar-se no tema. Material e método: estudo descritivo, transversal, com entrevistas a médicos e enfermeiras do CHPR, no período 23 de outubro - 12 de novembro de 2018. O estudo obteve a aprovação do Comitê de ética. Resultados: 75,4% (181/240) dos entrevistados haviam atendido crianças com registro de AET - ocasionalmente: 73,5%, frequentemente: 21,5%. Consideraram - útil contar com registros de AET: 30% e muito útil: 58%. Declararam encontrar dúvidas éticas, clínicas e/ou legais: ocasionalmente: 51,4%; frequentemente: 27,6%; as principais dúvidas foram: responsabilidade no cumprimento das diretrizes e a falta da assinatura dos pais. As principais dificuldades relatadas foram: os padres não dispõem do documento durante a atenção, estão angustiados e solicitam "fazer tudo". A maioria dos profissionais declarou que seria útil ou muito útil receber mais informação e/ou capacitação sobre as DAET. Conclusões: a maioria dos profissionais entrevistados havia participado no cuidado de crianças com registro de AET. Consideraram útil ou muito útil contar com estes registros, porém expressaram ter dúvidas clínicas, éticas e/ou legais em algumas oportunidades.

Quality-of-life of Pediatric Cancer Patients Receiving End-of-life Care and Related Factors: Using a Proxy QOL Rating Scale from the Nurse’s Perspective

Objectives: The study purpose was to examine quality-of-life (QOL) of pediatric cancer patients at end-of-life and related factors using a QOL proxy rating scale from the nurse’s perspective. Methods: We conducted a survey in October 2015−February 2016. The subjects to be surveyed were nurses who were primarily in charge of patients with childhood cancer at end-of-life. We investigated 22 items of the Good Death Inventory for Pediatrics (GDI-P) and their related factors. Results: In total, 53 proxy evaluate questionnaires were completed from 18 centers. Among the eight factors of GDI-P, “Relief from physical and psychological suffering” was the lowest. The total score of GDI-P was positively correlated with the structure and process of care (r=0.58). Although there was a bias in the number of cases, in the case of the place of death was the intensive care unit, the total score of GDI-P was lower than home and the general ward. Conclusions: It was suggested that the top priority in improving QOL was relief from suffering and the structure and process of care were related to QOL.

Discordance between Physician and the General Public Perceptions of Prognostic Disclosure to Children with Serious Illness: a Korean Nationwide Study

BACKGROUND: It is difficult to decide whether to inform the child of the incurable illness. We investigated attitudes of the general population and physicians toward prognosis disclosure to children and associated factors in Korea. METHODS: Physicians working in one of 13 university hospitals or the National Cancer Center and members of the general public responded to the questionnaire. The questionnaire consisted of the age appropriate for informing children about the prognosis and the reason why children should not be informed. This survey was conducted as part of research to identify perceptions of physicians and general public on the end-of-life care in Korea. RESULTS: A total of 928 physicians and 1,241 members of the general public in Korea completed the questionnaire. Whereas 92.7% of physicians said that children should be informed of their incurable illness, only 50.7% of the general population agreed. Physicians were also more likely to think that younger children should know about their poor prognosis compared with the general population. Physicians who opposed incurable illness disclosure suggested that children might not understand the situation, whereas the general public was primarily concerned that disclosure would exacerbate the disease. Physicians who were women or religious were more likely to want to inform children of their poor prognosis. In the general population, gender, education, comorbidity, and caregiver experience were related to attitude toward poor prognosis disclosure to children. CONCLUSION: Our findings indicate that physicians and the general public in Korea differ in their perceptions about informing children of poor prognosis.

Pediatric Deaths Attributed to Complex Chronic Conditions over 10 Years in Korea: Evidence for the Need to Provide Pediatric Palliative Care

BACKGROUND: Pediatric palliative care (PPC) is the active total care of children suffering from life-threatening illnesses. Palliative care includes symptom management, psychosocial support, and end-of-life care. Despite significant advances in disease diagnosis and treatment, resources for PPC of children with serious illnesses are limited in Korea. This study aimed to investigate the scale, time trends, disease composition, regional distribution, and unmet needs of children dying from complex chronic conditions (CCCs). METHODS: We examined available information on children who died of CCCs from 2005 to 2014 using the cause of death statistics in Korea. RESULTS: There were 36,808 cases of pediatric deaths in Korea during that 10-year period, one-third (12,515 cases, 34.0%) of which were due to CCCs. In 2014, there were 1,044 cases of pediatric deaths due to CCCs (9.8 deaths per 100,000 children) in Korea. The rate of pediatric deaths due to CCCs has declined over this 10-year period. Among CCCs, malignancy was the most common cause of death overall, as well as in children and adolescents, whereas neonatal disorders were the most common cause of death in infants. Although over 1,000 children die from chronic illnesses each year, there are no hospitals or institutes in Korea that meet the minimum standards for specialized PPC. CONCLUSION: To improve the quality of life of children suffering from CCCs and to support their families who face enormous distress, children with CCCs should be able to access adequate palliative care services. Health authorities should consider supporting the establishment of PPC centers and increasing PPC accessibility in Korea.

Necesidades de cuidado paliativo domiciliario de enfermería, de niños, niñas y su familia / Nursing home palliative care needs of children and their families

De acuerdo con la alta demanda e interés a nivel mundial y nacional entorno a la temática del cuidado paliativo, el presente trabajo estudia las necesidades de cuidado paliativo en casa de los niños y su familia desde la perspectiva del cuidador. Identificando las necesidades físicas, psicoemocionales y sociofamiliares de cuidado paliativo domiciliario, con el fin de desarrollar una propuesta general de cuidados paliativos pediátricos de enfermería en el hogar de acuerdo con los resultados. El estudio se realizó a través del método de análisis de contenido de las entrevistas realizadas a 4 cuidadores principales de niños que habían sido cuidados en su domicilio y que se captaron en un hospital de IV nivel en el municipio de Soacha- Cundinamarca. El desarrollo de este estudio se enmarco en las pautas éticas internacionales para la investigación biomédica en seres humanos (1).

In accordance with the high demand and interest worldwide and nationally around the theme of palliative care, this work studies the needs of palliative care at home of children and their families from the perspective of the caregiver. Identifying the physical, psychoemotional and socio-family needs of home palliative care, in order to develop a general proposal of pediatric palliative nursing care at home according to the results. The study was carried out through the content analysis method of the interviews carried out with 4 main caregivers of children who had been cared for at home and who were recruited in an IV level hospital in the municipality of Soacha-Cundinamarca. The development of this study is framed in international ethical guidelines for biomedical research in humans (1).

Pediatric Palliative Care: Comprehensive Support for Children.

Palliative Care (PC), is the set of actions and tools that seek relief from symptoms and suffering of patients and their families to diseases that threaten their lives. This support includes different types of resources covering the clinical, socio‑economic, emotional, psychological and spiritual aspects. Due to increasing life expectancy of humans and the fact that chronic diseases account for 60% of premature death, mainly due to cardiovascular diseases, neurological and malignant tumors; has been the global need to create, implement, and enhance knowledge and PC local programs. In pediatrics, there are four main reasons why a child can and should receive pediatric palliative care (PPC): Cancer, Cystic fibrosis, Metabolic or Mitochondrial and/or Progressive Muscle Diseases and Neurological Disorders. In this article we analyze synthetically the definition, types and basic definitions on the CPP matter. Also, we share the local experience about the first pediatric palliative care program focus in oncologic patients on the Dominican Republic. To review the basics and history of palliative care. To establish the goals and definition of pediatric palliative care, symptom management, terminal illness and integral support. To describe the local pediatric palliative care in oncology unit at Dr. Robert Reid Cabral Children’s Hospital in Dominican Republic as the first PPC local program in the country for children with cancer.