Prótesis colónicas en el tratamiento paliativo del cáncer colónico. Nuestra evaluación tras 10 años de experiencia / Self-expanding metal stents in the palliative treatmentof coloncancer. Results of 10 years of experience

Introducción: la colocación de prótesis metálicas autoexpansibles (PAE) por vía endoscópica surge como opción terapéutica para la obstrucción colónica neoplásica en dos situaciones: como tratamiento paliativo y como puente a la cirugía curativa. Este procedimiento evita cirugías en dos tiempos y disminuye la probabilidad de colostomía definitiva y sus complicaciones con el consecuente deterioro de la calidad de vida. Objetivo: comunicar nuestra experiencia en la colocación de PAE para el tratamiento paliativo de la obstrucción colorrectal neoplásica. Diseño: retrospectivo, longitudinal, descriptivo y observacional. Material y métodos: se incluyeron todos los pacientes a quienes el mismo grupo de endoscopistas les colocó PAE con intención paliativa por cáncer colorrectal avanzado entre agosto de 2008 y diciembre de 2019. Fueron analizadas las variables demográficas y clínicas, el éxito técnico y clínico, las complicaciones tempranas y tardías y la supervivencia. Resultados: se colocó PAE en 54 pacientes. La media de edad fue 71 años. El 85% de las lesiones se localizó en el colon izquierdo. En el 57% de los pacientes se realizó en forma ambulatoria. El éxito técnico y clínico fue del 92 y 90%, respectivamente y la supervivencia media de 209 días. La tasa de complicaciones fue del 29,6%, incluyendo un 14,8% de obstrucción y un 5,6% de migración. La mortalidad tardía atribuible al procedimiento fue del 5,6%, ocasionada por 3 perforaciones tardías: 2 abiertas y 1 microperforación con formación de absceso localizado. Conclusiones: la colocación de PAE como tratamiento paliativo de la obstrucción neoplásica colónica es factible, eficaz y segura. Permitió el manejo ambulatorio o con internación breve y la realimentación temprana, mejorando las condiciones para afrontar un eventual tratamiento quimioterápico paliativo. Las mayoría de las complicaciones fueron tardías y resueltas endoscópicamente en forma ambulatoria. (AU)

Introduction: endoscopic placement of self-expanding metal stents (SEMS) emerges as a therapeutic option for neoplastic obstruction of the colon in two situations: as palliative treatment and as a bridge to curative surgery. This procedure avoids two-stage surgeries and reduces the probability of permanent colostomy and its complications with the consequent deterioration in quality of life. Objective: to report our experience in the placement of SEMS as palliative treatment in neoplastic colorectal obstruction. Design: retrospective, longitudinal, descriptive and observational study. Methods: all patients in whom the same group of endoscopists performed SEMS placement with palliative intent for advanced colorectal cancer between August 2008 and December 2019 were analyzed. Data collected were demographic and clinical variables, technical and clinical success, early and late complications, and survival. Results: SEMS were placed in 54 patients. The average age was 71 years. Eighty-five percent were left-sided tumors. In 57% of the patients the procedure was performed on an outpatient basis. Technical and clinical success was 92 and 90%, respectively, and median survival was 209 days. The complication rate was 29.6%, including 14.8% obstruction and 5.6% migration. Late mortality attributable to the procedure was 5.6%, caused by 3 late perforations: 2 open and 1 microperforation with localized abscess formation. Conclusions: The placement of SEMS as a palliative treatment for neoplastic colonic obstruction is feasible, effective and safe. It allowed outpa-tient management or brief hospitalization and early refeeding, improving the conditions to face an eventual palliative chemotherapy treatment. Most complications were late and resolved endoscopically on an outpatient basis. (AU)

Eletroquimioterapia, uma nova terapia para pacientes com câncer cutâneo na América Latina: revisão da literatura / Electrochemotherapy, a new therapy for patients with skin cancer in Latin America: literature review

A eletroquimioterapia é uma tecnologia inovadora usada para tratar cânceres de pele e mucosa. Consiste na administração intravenosa de bleomicina seguida pela aplicação de pulsos de eletroporação no tumor em suas margens. Esses pulsos induzem a formação de poros na membrana celular, aumentando a eficácia citotóxica da bleomicina em mais de 1.000 vezes. Como a eletroporação é um fenômeno físico, diferentes tipos de tumores podem ser tratados, independentemente de sua histologia. Geralmente, apenas uma sessão de tratamento é necessária para obter resposta satisfatória. A eletroquimioterapia é uma boa opção para tumores recidivantes nos quais outras terapias não proporcionam resposta. Além disso, os tumores podem ser reduzidos com a terapia, permitindo cirurgias menos agressivas e melhorando os resultados. Muitas diretrizes de tratamento começaram a incluir o uso dessa técnica não ablativa como uma nova opção de tratamento quando outras terapias falharam ou foram rejeitadas pelo paciente. O tratamento é realizado em regime ambulatorial com altas taxas de resposta e poucos efeitos colaterais.

Electrochemotherapy is an innovative technology used to treat skin and mucosal cancers. It consists of intravenous administration of bleomycin followed by the application of electroporation pulses to the tumor at its margins. These pulses induce the formation of pores in the cell membrane, increasing the cytotoxic efficacy of bleomycin by more than 1,000- fold. As electroporation is a physical phenomenon, different types of tumors can be treated regardless of their histology. Generally, only one treatment session is needed to obtain a satisfactory response. Electrochemotherapy is a good option for recurrent tumors in which other therapies do not provide a response. Additionally, tumors can be shrunk with therapy, allowing for less aggressive surgeries and improving outcomes. Many treatment guidelines have begun to include the use of this non-ablative technique as a new treatment option when other therapies have failed or been rejected by the patient. Treatment is carried out on an outpatient basis with high response rates and few side effects.

Sedación paliativa: percepción del personal médico e implicaciones en la práctica clínica en un hospital de alta complejidad / Medical staff perception of palliative sedation and its implications for clinical practice in a high complexity hospital

Introducción: el cuidado paliativo tiene como objetivo controlar los síntomas y la ganancia en calidad de vida de los pacientes con enfermedades progresivas, avanzadas o con pobre opción curativa. Juega un papel fundamental en los síntomas refractarios y la falta de educación sobre esta materia en todos los niveles de la formación médica lleva a generar que no sea considerada, se tenga un concepto equivocado o exista temor en su aplicación. Materiales y métodos: estudio descriptivo de corte trasversal para definir el conocimiento, las percepción personal y profesional sobre la sedación paliativa, mediante la aplicación en una encuesta a 201 participantes entre estudiantes de medicina de último año, médicos generales, residentes y especialistas de diferentes especialidades en un hospital universitario de alta complejidad en Cali, Colombia en 2021. Resultados: 57,2% eran hombres, 3,98% desempeñaba la mayoría de su actividad en salas de cirugía, 25,4% en consulta externa, 57,2% en hospitalización y 13,4% en urgencias. En cuanto a la formación en cuidados paliativos 19,9% consideró que fue ninguna, 67,7% poca y 12,4% mucha, 16,4% desconocía la definición de enfermedad terminal y 25,4% la de sedación paliativa. El 90% no pudo diferenciar los objetivos de la sedación paliativa y la eutanasia, aunque 94,5% reconoció que era importante controlar el sufrimiento de los pacientes y que la sedación era una opción terapéutica. Discusión y conclusiones: la sedación paliativa es una intervención importante en los pacientes con síntomas refractarios, existen brechas de conocimiento que limitan su aplicación clínica, lo que debe fortalecer la educación en este aspecto en todos los niveles de la formación médica.

Introduction: palliative care is geared to symptoms control and quality of life improvement among patients with advanced, progressive, or non-curative diseases. It plays a fundamental role on refractory symptoms and lack of teaching on this matter, at all medical training levels, leads to unawareness and misunderstanding or fear to administer it. Materials and methods: a descriptive, cross-sectional study conducted to define knowledge, and personal and professional perception of palliative sedation (PS), using a survey applied to 201 participants selected from last year medical students, general practitioners, residents, and different specialists at a high complexity university hospital in Cali, Colombia in 2021. Results: 57.2% were men, 3.98% worked mostly in operating rooms, 25.4% in the outpatient clinic, 57.2% in the hospitalization ward and 13.4% in the emergency room. Regarding training in palliative care 19.9% considered they had not received any training, 67.7% little and 12.4% a lot, 16.4% did not know the definition of terminal illness and 25.4% did not know the definition of PS. 90% would not distinguish between the purpose of palliative sedation and euthanasia, although 94.5% recognized that preventing patient suffering was important and that sedation was a therapeutic option. Discussion and conclusions: palliative sedation is an important intervention in patients with refractory symptoms. Knowledge gaps limiting its clinical administration show the need of strengthening education on PS, at all levels of medical training.

Representações sociais de profissionais da Estratégia Saúde da Família acerca de cuidados paliativos para a pessoa idosa / Social representations of Family Health Strategy professionals regarding palliative care for older adults

Resumo Objetivo Compreender as Representações Sociais dos profissionais enfermeiros, médicos e odontólogos da Atenção Primária em Saúde (APS) sobre Cuidados Paliativos (CP) para a pessoa idosa. Método Pesquisa fundamentada na Teoria das Representações Sociais. Os dados foram obtidos por meio de entrevista semiestruturada a partir de questões fechadas (dados sociodemográficos e profissionais) e abertas (Fale qual a sua compreensão sobre Cuidado Paliativo para o idoso e Fale como você realiza o cuidado paliativo para os idosos que você cuida aqui da unidade). Para análise e organização dos dados, foi utilizada a técnica do Discurso do Sujeito Coletivo. Resultados Frente a questão sobre o que os profissionais compreendiam do CP para o idoso, resultaram quatro Ideias Centrais: diagnóstico incurável; cuidado biopsicossocial e humanizado para a pessoa idosa e família; qualidade de vida e educação em saúde. As cinco ideias centrais sobre como esse cuidado era realizado na unidade foram: visita domiciliar; atenção biopsicossocioespiritual a pessoa idosa e família; grupos de atividades; promoção da qualidade de vida e assistência no momento da morte. Conclusão Os dados obtidos permitiram identificar as representações sociais de profissionais de saúde da APS sobre o CP para a pessoa idosa, bem como sua execução. As compreensões sobre CP estão intimamente relacionadas com o preconizado pela Organização Mundial de Saúde, com exceção da educação em saúde que é um princípio e não um conceito. Essas compreensões permitiram, também, identificar ações de enfermeiros, médicos e odontólogos que demonstram como realizam o cuidado paliativo para a pessoa idosa.

Abstract Objective To comprehend the Social Representations of nurses, physicians, and dentists working in Primary Health Care (PHC) regarding Palliative Care (PC) for older adults. Method This research was grounded in the Theory of Social Representations. Data were obtained through semi-structured interviews comprising closed-ended questions (socio-demographic and professional data) and open-ended questions (Describe your understanding of Palliative Care for older adults and Explain how you provide palliative care for the older adults under your care at this unit). For data analysis and organization, the Collective Subject Discourse technique was employed. Results Regarding the question about what professionals understood about Palliative Care for older adults, four Central Ideas emerged: incurable diagnosis; biopsychosocial and humanized care for the older adult and family; quality of life; and health education. The five central ideas concerning how this care was conducted at the unit were: home visits; biopsychosocial and spiritual care for the older adult and family; activity groups; promotion of quality of life; and assistance at the moment of death. Conclusion The data obtained allowed for the identification of the social representations of PHC professionals regarding PC for older adults, as well as its implementation. The understandings of PC are closely related to those advocated by the World Health Organization, with the exception of health education, which is a principle rather than a concept. These understandings also allowed for the identification of actions by nurses, physicians, and dentists that demonstrate how they provide palliative care for older adults.

CUIDADO PALIATIVO CERCANO, ADAPTACIÓN DEL CUIDADO DE ENFERMERÍA BRINDADO EN TIEMPO DE PANDEMIA / CLOSE PALLIATIVE CARE, ADEQUACY OF NURSING CARE PROVIDED IN TIMES OF PANDEMIC

INTRODUCCIÓN: La pandemia a nivel mundial afectó gravemente los servicios de prevención y tratamiento de las Enfermedades No Transmisibles, viéndose las personas con cáncer afectadas por su tamizaje, tratamiento y acompañamiento a fin de vida. En este contexto, el cuidado brindado por enfermería se hizo complejo, generando impotencia y frustración frente al aislamiento y la mortalidad. OBJETIVO: Explorar la percepción de las enfermeras respecto al cuidado otorgado a personas en cuidados paliativos oncológicos en el contexto de la pandemia por COVID-19, en la Región Metropolitana de Chile. MÉTODOS: Estudio cualitativo exploratorio descriptivo en base al análisis de contenido temático de Krippendorff. Contó con una muestra intencionada de 6 enfermeras de unidades de cuidados paliativos. La recolección de datos fue con entrevistas semiestructuradas audio grabadas por video conexión, tras dar el consentimiento, entre septiembre del 2020 y abril del 2021. Las entrevistas trascritas fueron analizadas por cada uno de los investigadores por separado, para luego triangular los hallazgos y develar las categorías, logrando la saturación de datos. RESULTADOS: Las enfermeras de CP que participaron en esta investigación se vieron enfrentadas a desafíos generados por la pandemia, sin embargo, reconocen haber logrado un cuidado paliativo cercano en base a las adaptaciones en la gestión del cuidado, la cual estuvo mediada por factores facilitadores en el proceso. Esta experiencia las llevó a dar sentido al cuidado brindado, valorando las adecuaciones realizadas y el compromiso asumido en pos de mantener un cuidado humanizado a pesar de los obstáculos que se fueron presentando. CONCLUSIÓN: El afrontar la pandemia permitió a las enfermeras de cuidados paliativos adaptarse a través de una gestión del cuidado oportuna, segura, innovadora y humanizada, lo que dio sentido a dicho cuidado, relevando el desarrollo de los programas de cuidados paliativos en personas con limitación de la vida.

INTRODUCTION: The worldwide pandemic severely affected services related to the prevention and treatment of Non-Communicable Diseases, especially in people with cancer who require screening, treatment, and accompaniment at the end of life. In this context, the care provided by nurses became complex, creating feelings of impotence and frustration in the face of isolation and mortality. OBJECTIVE: To explore nurses' perceptions of the oncologic palliative care provided during the COVID-19 pandemic in the Metropolitan Region of Chile. METHODS: Descriptive exploratory qualitative study based on Krippendorff thematic content analysis. The study had an intentional sample of 6 nurses from palliative care units. Data was collected between September 2020 and April 2021, using semi-structured video interviews which were audio-recorded after obtaining consent. The transcribed interviews were analyzed by each of the researchers separately to triangulate the findings and reveal the categories that characterized the nurses' perceptions. RESULTS: While the PC nurses who participated in this research were faced with challenges generated by the pandemic, they were able to provide close palliative care based on adaptations in care management, adaptations facilitated by factors in the process. This experience enabled them to give meaning to the care provided, value the adjustments and the commitment made to maintain humanized care despite the obstacles. CONCLUSION: Facing the pandemic prompted palliative care nurses to adapt through timely, safe, innovative, and humanized care management, giving meaning to such care and highlighting the importance of palliative care programs in people with life limitations.

La crioablación: una alternativa en el tratamiento del cáncer mamario

La crioablación es un tratamiento de crioterapia para tumores localizados en pulmones, mediastino, huesos, hígado, riñón, próstata y mama. Puede ser curativo o paliativo y se desarrolla de manera efectiva en la medicina moderna. Este tratamiento busca mitigar la quinta causa de muerte a nivel mundial, el cáncer de mama. La presente investigación es una revisión bibliográfica acerca de la crioablación percutánea como un método seguro que no involucra a otros órganos cercanos a la parte a intervenir. Es un procedimiento ambulatorio, con imagen guiada, mínima invasión, anestesia local y recuperación inmediata. Los resultados demuestran que es recomendable en pacientes de edad avanzada o que por su enfermedad tengan alto riesgo en cirugías y para cualquier paciente con el padecimiento referido. El objetivo del estudio es fundamentar teóricamente los beneficios de la crioterapia, medir y probar su eficacia, así como su tolerancia a largo y mediano plazo.

Cryoablation is a cryotherapy treatment for tumors located in the lungs, mediastinum, bones, liver, kidney, prostate, and breast. It can be curative or palliative and is effectively developed in modern medicine. It seeks to mitigate the fifth cause of death worldwide, breast cancer. The present investigation is a bibliographic review about percutaneous cryoablation as a safe method that does not involve other organs close to the part to be intervened. It is an outpatient procedure, with guided image, minimal invasion, local anesthesia and immediate recovery. The results show that it is recommended in elderly patients or those who are at high risk for surgery due to their disease and for any patient with the aforementioned condition. The objective of the study is to theoretically support the benefits of cryotherapy, measure and test its efficacy, as well as its tolerance in the long and medium term.

Palliative care management in patients with Parkinson's disease and other movement disorders in Spain. National survey of neurologists.

INTRODUCTION: Palliative care in neurodegenerative diseases is useful but underused. The objective of this study is to know how palliative care (PC) is applied in Spain in order to identify limitations and unmet needs. MATERIALS AND METHODS: It is a descriptive, observational, cross-sectional study, anonymous survey type of 20 questions, directed and answered by neurologists dedicated to movement disorders (MD) in Spain. RESULTS: 58 responses were obtained from neurologists from 15 autonomous communities. 69% answered that they did not have a specialised MD nursing facility but did have a PC team in their centre (81%). No specific protocol for PC in MD was identified. All except one neurologist stated that they lacked sufficient training in PC, the main training need being the "advance directives explanation". Only 1 in 4 neurologists answered routinely explaining advance healthcare planning to their patients, recognising up to 84.5% of neurologists not knowing how to assess the patient's competence. 60.3% of those surveyed answered that between 10% and 30% of their patients would be candidates for PC, although 1 in 3 said they were not clear when to refer the patient to PC. 100% of neurologists affirmed the priority need to implement PC protocols in MD. CONCLUSIONS: Our study shows a formative deficit in PC in this area and in the care of the patient with movement disorders and their environment, and should serve as a starting point to develop consensual care protocols.

A ética do cuidado e cuidado paliativo pediátrico: um diálogo possível / The ethics of care and pediatric palliative care: a potential dialogue

Resumo Este artigo, sob a forma de ensaio, tem como objetivo fazer uma interlocução entre a ética do cuidado e o cuidado paliativo pediátrico, considerando que as percepções morais são tecidas a partir de uma rede de relações e que o cuidado se constrói na intersubjetividade. Discute-se com base em quatro pilares, a que chamamos de movimentos: a ética do cuidado, como ética feminista, em diálogo com o cuidado paliativo pediátrico, a comunicação e a autonomia como ferramentas de cuidado a partir de suas características relacionais. Conclui-se que considerar esses aspectos na abordagem paliativa pode ser um caminho para exercer um compromisso moral de cuidado.

Abstract This article, in an essay format, seeks to establish a dialogue between the ethics of care and pediatric palliative care, taking into consideration the fact that moral perceptions are based on a network of relationships, while care is built on intersubjectivity. Four pillars that are referred to as movements are discussed: the ethics of care, as a feminist ethic, in a dialogue with pediatric palliative care, and communication and autonomy as tools of care based on their relational aspects. The conclusion drawn is that considering these aspects from a palliative standpoint can be a way to implement a moral commitment of care.

A prática da meditação e seus benefícios como auxílio terapêutico no processo do luto e no transtorno de estresse pós-traumático / The practice of meditation and its benefits as a therapeutic aid in the grieving process and post-traumatic stress disorder

É de conhecimento geral o avanço da prática da meditação entre as pessoas. E no Ocidente, a meditação vem se tornando objeto de estudos e pesquisas nas diversas áreas da saúde, em decorrência às evidências de que a prática da meditação promove inúmeros benefícios a saúde mental e física, proporcionando uma melhora na qualidade de vida dos praticantes. Com base nessas informações, estudos e pesquisas apontam o quanto a meditação é relevante na atividade mental, e na relação entre corpo e mente, nos mostrando assim, a necessidade de incluir essa prática no cuidado à saúde. Partindo dessa premissa, esse trabalho objetivou analisar de forma sistemática como a meditação e/ou prática meditativa pode auxiliar de forma complementar no tratamento e/ou ao cuidado de pessoas lidando com processos de Luto e Transtorno de Estresse Pós-Traumático (TEPT), uma vez que os dois processos, em sua maioria, estão ligados entre si. O método utilizado foi uma revisão sistemática de base bibliográfica e documental, a partir de bancos de dados oficiais de pesquisa ( Pubmed, BVS e Embase) e literatura cientifica. Dos 4.257 restantes após exclusão por duplicidade, 4.230 foram excluídos após triagem de título e resumo dos mesmos. Dos 27 restantes após leitura na integra de cada um deles, a amostra final totalizou em 17 estudos selecionados. A realização desse levantamento de dados permitiu visualizar os estudos da meditação em diversos públicos, bem como sua eficácia na promoção da saúde, já que os benefícios da meditação foram categoricamente demonstrados.

It is well known that the practice of meditation has advanced among people. And in the West, meditation has become the object of studies and research in various areas of health, due to evidence that the practice of meditation promotes numerous benefits to mental and physical health, providing an improvement in the quality of life of practitioners. Based on this information, studies and research point out how much meditation is relevant in mental activity, and in the relationship between body and mind, thus showing us the need to include this practice in health care. Based on this premise, this work aims to reflect and analyze in an integrative way how meditation and/or meditative practice can help in the treatment and/or care of people dealing with Grief and Post-Traumatic Stress Disorder (PTSD), since the two processes, for the most part, are linked together. The method used was a systematic review of the bibliographic and documental base, based on official re- search databases (Pubmed, BVS and Embase) and scientific literature. Of the 4,257 re- maining after exclusion for duplicity, 4,230 were excluded after screening their titles and abstracts. Of the remaining 27 after reading each of them in full, the final sample totaled 17 selected studies. Carrying out this data survey made it possible to visualize meditation stu- dies in different audiences, as well as its effectiveness in promoting health, since the bene- fits of meditation have been categorically demonstrated.

Exploring the Brazilian pediatric palliative care network: a quantitative analysis of a survey data / Explorando a rede brasileira de cuidados paliativos pediátricos: uma análise quantitativa de levantamento de dados

Abstract Objective: The aim of this study was to identify the characteristics of services in Brazil that compound the Brazilian Pediatric Palliative Care (PPC) Network. Methods: An online survey was conducted among representatives from PPC services. A total of 90 services from Brazil completed the online survey and answered a questionnaire about the service's characterization, health professionals working in PPC, access to opioid prescription and education, and research in PPC. Results: In total, 80 services (88.9%) were created after 2010, 52 (57.9%) were in the southeast region, 56 (62.2%) were in public hospitals, 63 (70%) had up to 100 beds, and 57 (63.3%) were at the tertiary level. Notably, 88 (97.8%) had a physician in the team and 68 (75.5%) dedicated part-time to PPC. Also, 33 (36.7%) revealed concern with the care of health professionals and 36 (40%) reported difficulty or no access to opioid prescription. Research studies were reported to be conducted in 29 (32.2%) services. Conclusions: This mapping points out to a concentration of PPC services in the southeast region, with part-time professional dedication, and the need to improve professionals' care. Difficulty in opioid access was reported. It is necessary to extend PPC participation to other Brazilian regions, increase time dedicated to PPC, improve professionals' care and improve access to opioid prescription.

RESUMO Objetivo: Identificar as características dos serviços que compõem a Rede Brasileira de Cuidados Paliativos Pediátricos (CPP). Métodos: Estudo do tipo survey online entre representantes de serviços de CPP. O total de 90 serviços do Brasil participaram da pesquisa e responderam a um questionário sobre a caracterização do serviço, os profissionais de saúde que nele atuam, o acesso à prescrição de opioides e a educação e pesquisa em CPP. Resultados: Oitenta serviços (88,9) foram criados após 2010, 52 (57,9%) estão na Região Sudeste, 56 (62,2%) em hospitais públicos, 63 (70%) têm até cem leitos e 57 (63,3%) estão no nível terciário. Oitenta e oito serviços (97,8%) tinham um médico na equipe e, em 68 (75,5%), os profissionais dedicavam parte de seu tempo aos CPP. Trinta e três serviços (36,7%) revelaram preocupação com o atendimento aos profissionais de saúde. Trinta e seis (40%) relataram dificuldade ou nenhum acesso à prescrição de opioides. Foi reportada a realização de pesquisas em 29 (32,2%). Conclusões: Este mapeamento aponta para a concentração dos serviços de CPP na Região Sudeste, com dedicação parcial dos profissionais, e para a necessidade de cuidar deles. Foi relatada dificuldade no acesso aos opioides. É necessário estender a participação na rede de CPP para outras regiões do Brasil, aumentar o tempo dedicado aos CPP pelos profissionais e cuidar destes, além de melhorar o acesso à prescrição de opioides.

Caracterização dos sintomas e cuidados prestados ao doente terminal nos últimos três dias de vida, num serviço de internamento hospitalar / Characterisation of symptoms and care provided to the terminally ill patient in the last three days of life, in a hospital inpatient service

Num hospital de agudos, o atendimento é direcionado essencialmente para a vertente curativa, pelo que nem sempre é possível atender às necessidades dos que padecem de uma doença terminal, acabando muitas vezes por falecer no serviço, sem que lhes seja facultado o devido cuidado, inúmeras vezes de carater paliativo. Objetivo: Caracterizar os cuidados prestados ao doente terminal, nos últimos três dias de vida, num serviço de internamento hospitalar. Metodologia: Estudo descritivo simples, retrospetivo, de cariz quantitativo. A recolha de informação foi efetuada a partir dos processos individuais de 32 doentes falecidos num serviço de Medicina Interna. O instrumento de recolha de dados utilizado foi construído e utilizado por Delgado (2012), tendo sido concebido com base no Protocolo de Liverpool Care Pathway (LCP ­ versão 12). Resultados: A amostra em estudo é predominantemente do sexo feminino, com média de idade de 89 anos, admitida pelo serviço de urgência, a residir em casa própria, com dependência em grau elevado nos autocuidados. Respeitante à sintomatologia mais observada nos três últimos dias de vida, aferiu-se que foi a dispneia (46,9%), estertor/respiração ruidosa (40,6%) e dor (37,5%). Os analgésicos assumem uma posição de destaque, no que concerne às intervenções farmacológicas. No que tange às intervenções não farmacológicas, a maioria continua ativa durante todo o período de tempo, salientando-se a monitorização e os exames complementares de diagnóstico, mais especificamente as análises sanguíneas (62,5%). Intervenções de Enfermagem que contemplam o cuidado com a pele, eliminação intestinal e urinária foram transversais ao processo de finitude, almejando a satisfação das necessidades e conforto do doente. Conclusão: Apesar da irreversibilidade clínica, muitas vezes são praticadas intervenções que não coadunam com as autênticas necessidades do doente em fase terminal, o que inviabiliza a prestação de cuidados que promovam o conforto e a qualidade de vida, nesta fase tão peculiar do ciclo vital.

In an acute hospital, care is essentially directed towards the curative aspect. Therefore, it is not always possible to meet the needs of those suffering from a terminal illness. As a result, some frequently end up dying in the service, without being provided with the proper care, often times of a palliative nature. Objective: To characterize the care provided to the terminally ill patient, in the last three days of life in an inpatient service. Methodology: A simple descriptive study, of a retrospective, quantitative nature. The compilation of information was carried out from the individual files of 32 patients who died at an Internal Medicine service. The data collection instrument used was built and used by Delgado (2012), having been designed based on the Liverpool Care Pathway Protocol (LCP ­ version 12). Results: The study sample is predominantly female, with an average age of 89 years, admitted by the emergency room, living in their own home, with a high degree of dependence for self-care. Regarding the symptoms most observed in the last three days of life, it was demonstrated to be dyspnea (46.9%), rattle/noisy breathing (40.6%) and pain (37.5%). Analgesics assume a prominent role concerning pharmacological interventions. With regard to non-pharmacological interventions, most remain active throughout the period of time in question, with emphasis on monitoring and complementary diagnostic tests, more specifically blood tests (62.5%). Nursing interventions that include skin care or intestinal and urinary elimination were transversal to the finitude process, aiming to satisfy the patient's needs and comfort. Conclusion: Despite the clinical irreversibility, interventions that do not match the authentic needs of the terminally ill patient are often carried out. This makes it impossible to provide care that promotes comfort and quality of life, in this very peculiar phase of the life cycle.

[Nutritional assessment of cancer patients in palliative care is a key element in comprehensive care and survival]. / La evaluación nutricional del paciente oncológico en cuidado paliativo es una pieza clave en la atención integral y de la supervivencia.

Introduction: Introduction: palliative care has been linked to the management of patients without a curative option. The detection of malnutrition allows establishing nutritional intervention strategies to make an adequate use of resources and contribute to support measures. Objective: to describe changes in nutritional status and their impact on survival in patients with cancer disease under palliative care. Methods: descriptive observational study of a retrospective cohort. The patients had stage IV cancer disease, Karnofsky index ≤70 and a survival prognosis <6 months. A complete nutritional assessment was carried out and they were followed for one year. The nutritional status and its characteristics, the presence of cachexia and the median survival at one year were described. Results: of 256 patients at the beginning of the follow-up, 60,9 % had some degree of malnutrition, which increased to 71,9 % at the end of the follow-up. There was an increase in patients with a thin body mass index (BMI) (+7.6%, p = 0.04) and a decrease in patients with excess weight (overweight -3.6%, p = 0, 24; and obesity -2.6%, p = 0.17). Overall survival at 1 year was 60 % (95% CI: 53-65). Conclusion: malnutrition was frequent in patients under palliative care (60,9 %) and increased throughout the follow-up. Differences were observed between the complete nutritional diagnosis and BMI, which can lead to a misclassification of the diagnosis and a decrease in the effectiveness of cancer treatment.

Introducción: Introducción: los cuidados paliativos han estado ligados al manejo de pacientes sin opción curativa. La detección de la desnutrición permite establecer estrategias de intervención nutricional que promueva el adecuado uso de los recursos y aporte a las medidas de apoyo en el tratamiento médico. Objetivo: describir cambios en el estado nutricional y su impacto sobre la supervivencia en pacientes con enfermedad oncológica bajo cuidado paliativo. Métodos: cohorte observacional retrospectiva. Los pacientes presentaban enfermedad oncológica estadio IV, índice de Karnofsky ≤70 y un pronóstico de supervivencia <6 meses. Se realizó evaluación nutricional por criterios GLIM y seguimiento por un año. Se identificó el estado nutricional y se describieron sus características, la presencia de los estadios de caquexia y la mediana de supervivencia a un año. Resultados: de 256 pacientes al inicio de la intervención, el 84,0 % presentaba algún grado de desnutrición, ésta cifra incrementó a 87,0 % al finalizar el seguimiento. Se observó un aumento en el número de pacientes con índice de masa corporal (IMC) delgado (+7,6 %, p=0,04) y una disminución en el número de pacientes con exceso de peso (sobrepeso -3,6 %, p=0,24; y obesidad -2,6 %, p=0,17). La supervivencia global a 1 año fue del 60 % (IC95%:53-66). Conclusión: la desnutrición fue muy frecuente en pacientes bajo cuidado paliativo y aumentó a lo largo del seguimiento. Se observaron diferencias entre el diagnóstico nutricional y el IMC, lo cual puede conllevar a una mala clasificación del diagnóstico y a una disminución en la efectividad del tratamiento oncológico.

Intravenous lidocaine in cancer-related neuropathic pain: case series / Lidocaína endovenosa en dolor neuropático relacionado con cáncer: serie de casos

Abstract Introduction Administering systemic lidocaine has been shown to deliver effective analgesia for both cancer-related and non-cancer pain. Adverse effects and toxicity are rare with controlled administration. Objective To report the results obtained after the indication to manage with IV lidocaine infusion to control neuropathic pain fiares in 9 cancer patients. Methodology Observational, descriptive, case series-type study. A search was conducted in the files of the Pain and Palliative Care Service of the National Cancer Institute - Instituto Nacional de Cancerología - in Bogotá. Patients over 18 years old diagnosed with cancer, who experienced high intensity neuropathic pain and with the cognitive ability to rate their pain in a numerical analogue scale (NAS), without any absolute contraindications for the use of IV lidocaine were included; patients were assessed between September 27 and November 21, 2019. Results 9 patients experiencing a pain flare-up which was characterized as neuropathic were registered, of which 89 % had some improvement following the administration of an initial lidocaine bolus. After one hour, 60 % reported over 40% improvement in the initial NAS. After 24 hours all patients had experienced some improvement, with a reduction of 46% in the pain scale as compared to the baseline. Conclusions In this series of cases, the intravenous infusion of lidocaine as an option for the management of neuropathic pain flares seems to reduce pain intensity following the initial bolus administration.

Resumen Introducción Se ha encontrado que la administración de lidocaína sistémica proporciona analgesia efectiva tanto en el dolor relacionado con cáncer como en el dolor no oncológico; se ha evidenciado que los efectos adversos y la toxicidad son raros en administraciones controladas. Objetivo Informar los resultados obtenidos luego de indicar el manejo con infusión de lidocaína endovenosa para control de crisis de dolor neuropático en 9 pacientes con cáncer. Metodología Estudio observacional descriptivo tipo serie de casos. Se realizó una búsqueda en la bitácora del Servicio de Dolor y Cuidados Paliativos del Instituto Nacional de Cancerología de Bogotá. Se incluyeron pacientes mayores de 18 años diagnosticados con cáncer, que cursaban con dolor neuropático de alta intensidad, con la capacidad cognitiva de calificar su dolor en una escala numérica análoga (ENA), sin contraindicaciones absolutas para uso de lidocaína endovenosa y que fueron valorados entre el 27 de septiembre y el 21 de noviembre de 2019. Resultados Se registraron 9 pacientes con crisis de dolor caracterizado como neuropático, de los cuales el 89 % tuvo algún grado de mejoría luego de la administración del bolo inicial de lidocaína. Pasada una hora, en el 60 % se observó una mejoría de más del 40 % de la ENA inicial. A las 24 horas, todos los pacientes experimentaron alguna mejoría, logrando una disminución en la puntuación del dolor según la ENA del 46 % en relación con la inicial. Conclusión En esta serie de casos, la lidocaína en infusión endovenosa se muestra como una opción para el manejo de las crisis de dolor neuropático, pues reduce la intensidad del dolor después del paso del bolo inicial.

Cirugías ablativas por causas oncológicas. 17 años de experiencia en una Unidad Especializada del Estado Monagas, Venezuela / Ablative surgeries for oncological causes. 17 years experience in a Monagas specialized unit

Estudio retrospectivo, sobre pacientes a quienes se les practicó cirugías ablativas por causas oncológicas: un total de 76 casos, predominando en la serie: el sexo masculino, la segunda década de la vida y como motivo de consulta: aumento de volumen con un 73,5%, el osteosarcoma fue la neoplasia más frecuente con un 34%, la fractura patológica acompañó a los tumores en el 50% de los casos, el hueso más afectado fue el fémur, los estadios según Enneking predominantes fueron los II b y III. Se practicaron más cirugías en miembros inferiores, siendo la amputación transfemoral la más frecuente. La intención de los procedimientos fue predominantemente curativa con un 69% sobre las intenciones paliativas, se practicaron más amputaciones en niveles oncológicos radicales que amplias. Se obtuvo una sobrevida global de 53,4% a los dos años de seguimiento, el miembro fantasma estuvo presente como complicación por encima del 77% de los casos operados(AU)

Retrospective study on patients who underwent ablative surgeries for oncological causes: a total of 76 cases, predominantly in the series: male sex, second decade of life and as a reason for consultation: volume increase with 73,5%. Osteosarcoma was the most frequent neoplasm with 34%, pathological fracture accompanied the tumors in 50% of cases, the most affected bone was the femur, the predominant Enneking stages were IIb and III. More surgeries were performed on the lower limbs, with transfemoral amputation being the most frequent. The intention of the procedures was predominantly curative with 69% of the palliative intentions, more amputations were performed at radical oncological levels than extensive ones. An overall survival of 53.4% was obtained at two years of follow-up, the phantom limb was present as a complication in over 77% of operated cases.

Conceptual Insights on Palliative Care at the end of Life: A Systematic Review / Perspectivas conceptuales de los cuidados paliativos en el final de la vida: revisión sistemática / Perspectivas conceituais dos cuidados paliativos no fim de vida: revisão sistemática

Introduction: Qualified end-of-life care remains an international challenge. The frequent use of terms such as "Palliative Care" and "end of life" has certain implications on the prognosis of the patient and in determining effective decision-making related to appropriate care. However, is such terminology commonly used in the literature? However, whether such terminology is commonly used in literature remains unknown. The objetive was verify the terms used in the Brazilian and international scientific literature on palliative practice in the final stage of life and to describe the terminological understanding based on its usage characteristics. Materials and methods: Studies from the lilacs and Pubmed databases published from 2012 to 2017 using the descriptors "end of life," "terminal stage," "Palliative Care," and "Hospice care" were included in this exploratory systematic review. Results: Ten articles were selected out of a total of 1909. A prevalence of American medical studies with heterogeneous methodological con-tent that presented diverse conceptual proposals was identified. Conclusion: The analysis of these articles reinforced the need to work on the conceptual dissemination of palliative care with an emphasis on the implications of the use of this approach only at the end of life, which hinders the process of improving the quality of care at the time of death

Introducción: la asistencia cualificada en el fin de la vida todavía es un desafío internacional. El uso frecuente de términos como cuidados paliativos y fin de la vida tienen implicaciones en el pronóstico del paciente y en la toma de decisiones efectiva para la oferta de cuidado adecuado. Pero, ¿su comprensión terminológica es de uso común en la literatura? El objetivo fue emplear los términos utilizados en la literatura científica nacional brasileña e internacional sobre la práctica paliativa en la fase final de la vida y describir la comprensión terminológica relacionada por sus características de uso. Materiales y métodos: revisión sistemática exploratoria en las bases de datos lilacs y Pubmed, en el periodo de 2012 a 2017, empleando los descriptores "final de vida", "fase terminal", "cuidados paliativos" y "cuidados en hospice". Resultados: fueron encontrados 1909 artículos y seleccionados 10. Se identificó una prevalencia de estudios médicos norteamericanos, con un contenido metodológico heterogéneo, que presentaron propuestas conceptuales diversificadas. Conclusión: los artículos analizados reforzaron la necesidad de trabajar en la diseminación conceptual de los cuidados paliativos, detallando las implicaciones de la asociación a abordaje apenas, al final de la vida, factor que dificulta el proceso de mejoría en la calidad de la asistencia en la muerte

Introdução: a assistência qualificada ao fim da vida ainda é um desafio internacional. O uso frequente de termos como "cuidados paliativos", "fim de vida" tem implicações no prognóstico do paciente e na efetiva tomada de decisão para a prestação de cuidados adequados. Mas o seu entendimento terminoló-gico é de uso comum na literatura? O objetivo era verificar o emprego dos termos utilizados na literatura científica nacional brasileira e internacional sobre prática paliativa na fase final da vida e descrever a compreensão terminológica relacionada às suas características de uso. Materiais e métodos: revisão sis-temática exploratória nas bases de dados lilacs e Pubmed, no período de 2012 a 2017, utilizando os des-critores "fim de vida", "fase terminal", "cuidados paliativos" e "cuidados em hospice". Resultados: foram encontrados 1909 artigos e 10 foram selecionados, identificou-se um predomínio de estudos médicos norte-americanos, com conteúdo metodológico heterogêneo e que apresentavam propostas conceituais diversificadas. Conclusão: os artigos analisados reforçam a necessidade de se trabalhar a disseminação conceitual dos cuidados paliativos, detalhando as implicações da associação para abordagem apenas no final da vida, fator que dificulta o processo de melhoria da qualidade do cuidado no fim da vida

Development of an evidence-informed education package for occupational therapists for palliative and end of life care: promoting occupational justice / Desenvolvimento de uma proposta de educação informada por evidências para terapeutas ocupacionais para cuidados paliativos e cuidado no fim de vida: promovendo a justiça ocupacional

Abstract Introduction Death is inevitable, yet hospitals and health services continue to focus on life-sustaining practices despite clients presenting with clear decline related to life-limiting illness. Social and occupational injustice is common for clients receiving palliative or end-of-life care, as they experience increased occupational disengagement and disempowerment. A gap was identified in the Occupational Therapy department of a metropolitan Australian hospital regarding clinician skills, knowledge and confidence in working with these clients. Objective To describe the development of an evidence informed education package designed to support occupational therapists to provide the best possible quality of care and promote occupational justice for clients receiving palliative or end-of-life care. Method Consultation with key stakeholders and a review of existing resources including a skills audit, was conducted to identify current practice. A review of professional and grey literature was completed, and benchmarking with similar organisations provided a wider perspective on current Australian practice. Review of widely available educational resources were evaluated. Results Baseline data collection confirmed that promoting occupational and social justice for people requiring palliative or end-of-life care was under-recognised across the health service. Benchmarking identified significant variation in educational practices across similar Australian health services. The structure and content of a face-to-face clinical education session was formulated using evidence from the literature review and relevant available resources. There are plans to transfer this education package to an e-learning platform with evaluation built into the package to allow content to remain up to date. Conclusion Occupational Therapy clinicians are well placed to promote occupational and social justice for people requiring palliative or end-of-life care but require additional occupationally focused education to optimise their practice in this area.

Resumo Introdução A morte é inevitável, mas os hospitais e serviços de saúde continuam concentrados na manutenção da vida, apesar das pessoas apresentarem declínios relacionados a doenças limitantes da vida. A injustiça social e ocupacional são comuns para as pessoas que recebem cuidados paliativos ou estão no fim de vida, pois experimentam um aumento do desengajamento e desempoderamento ocupacional. Foi identificada uma lacuna em um hospital metropolitano australiano, no departamento de terapia ocupacional, em relação às habilidades clínicas, conhecimento e confiança no trabalho. Objetivo Descrever o desenvolvimento de uma proposta de educação informada por evidências, projetada para apoiar terapeutas ocupacionais para fornecer a melhor qualidade possível de atendimento e promover a justiça ocupacional em cuidados paliativos ou no fim da vida. Método Consulta com pessoas chave e uma revisão dos recursos existentes, incluindo uma auditoria de habilidades, para identificar a prática atual. Uma revisão da literatura profissional e cinzenta foi concluída, e uma avaliação comparativa com organizações semelhantes forneceu uma perspectiva mais ampla sobre a prática australiana atual. Foi também avaliada uma revisão de recursos educacionais disponíveis. Resultados A coleta de dados confirmou que a promoção da justiça ocupacional em cuidados paliativos ou cuidados no fim de vida era pouco reconhecida no serviço de saúde. A avaliação comparativa identificou uma variação significativa nas práticas educacionais em serviços de saúde australianos. A estrutura e o conteúdo de uma sessão de educação clínica presencial foram formulados usando evidências da revisão da literatura e recursos relevantes disponíveis. Há planos de transferir esta proposta educacional para uma plataforma de e-learning com avaliação integrada, permitindo que o conteúdo permaneça atualizado. Conclusão Os terapeutas ocupacionais podem promover justiça ocupacional e social para pessoas que necessitam de cuidados paliativos ou cuidado no fim de vida, mas requerem formação adicional focada na ocupação para otimizar sua prática nesta área.

Urgencias en cuidado paliativo oncológico / Emergencies in palliative oncological care

El paciente oncológico de cuidados paliativos puede presentar una variedad importante de condiciones clínicas que producen sufrimiento y disminución en la calidad de vida; esto se presenta como un reto para el clínico en la identificación y correcto abordaje de los pacientes. El dolor se ha considerado por años como el síntoma cardinal a tratar en el paciente oncológico, donde se deben considerar sus condicionantes fisiopatológicos, la farmacología de las intervenciones, los posibles efectos secundarios y los condicionantes familiares, sociales y personales del dolor, pero a pesar de su relevancia, no es el único síntoma, estando acompañado de un abanico de patologías, como las afectaciones gastrointestinales, pulmonares, vasculares, hematológicas y neurológicas, que favorecen la pérdida de capacidad del paciente y, en muchas ocasiones, la muerte. Se realizó una revisión actualizada en bases de datos como EMBASE, PUBMED, SCIELO, además de la revisión de guías de asociaciones internacionales con el objetivo de acercar a todos los médicos, sin distinguir su especialidad o área de trabajo, al abordaje y manejo del paciente oncológico en cuidado paliativo, favoreciendo la sensibilización con estas patologías y la importancia en el curso de vida de los pacientes.

The palliative care cancer patient can present a significant variety of clinical conditions that produce suffering and a decrease in the quality of life. This is a challenge for the clinician in the identification and correct approach of patients. Pain has been considered for years as the cardinal symptom to be treated in cancer patients, where its pathophysiological factors, the pharmacology of the interventions, possible side effects and the family, social and personal conditions of pain must be considered, but despite its relevance is not the onset of symptoms and is accompanied by a range of pathologies such as gastrointestinal, pulmonary, vascular, hematological and neurological affectations that favor the loss of capacity of the patient and in many cases death. An updated review was carried out in databases such as EMBASE, PUBMED, SCIELO in addition to the revision of guides from international associations with the aim of bringing all doctors without distinguishing their specialty or area of work to the approach and management of cancer patients in palliative care favoring awareness of these pathologies and their importance in the life course of patients.

Palliative care and quality of life in patients with cancer during the terminal phase. A family/patient perspective.

OBJECTIVE: To explore the meaning of palliative care as perceived by the family caregiver and the patient with advanced cancer. METHOD: Information was collected through in-depth interviews and field diaries to conduct this qualitative research study, with an interpretative phenomenological approach. We adopted Heidegger's perspective for the development of hermeneutic interpretation, and therefore followed the stages of intentionality, reduction, and constitution. We used Bardin's constructs of pre-analysis, coding, categorisation, and interpretation for the discourse analysis. RESULTS: Seventeen patient-family caregiver dyads were considered. The perceptions of palliative nursing care focused on transpersonal relationships and the discourses referred to a lack of closeness between nursing staff and the patient. This was mainly expressed as a lack of emotional understanding and unmet needs. Themes were drawn from these findings based on developing a transpersonal relationship as a priority, including meeting needs and providing the empathic accompaniment that is fundamental for emotional well-being. CONCLUSION: From the perspective of the dyads, palliative care covers intangible aspects of care. This requires nursing staff to work collaboratively with colleagues, with other health professionals and interprofessionally, including the institutions involved in care. Further work is required to implement these actions.

Necesidades de atención en cuidado paliativo de Costa Rica según provincia / Palliative care needs in Costa Rica by Province

Resumen Justificación y objetivo. Existe un desconocimiento en relación con las necesidades de cuidados paliativos en Costa Rica lo que genera dificultades para poder distribuir los recursos adecuadamente. Este estudio busca identificar las necesidades de cuidado paliativo por provincia para que sirva de insumo para una adecuada planeación y utilización de los recursos. Métodos. Se utilizó la metodología diseñada por la Lancet Commission on Palliative Care and Pain Relief basada en el sufrimiento grave relacionado con la salud para 20 enfermedades con mayor necesidad probable de atención paliativa utilizando la base de datos del Instituto costarricense de estadística y Censo y bases de datos del Ministerio de Salud y de la Caja Costarricense del Seguro Social. Resultados. En Costa Rica, 19502 personas requirieron atención paliativa en el 2018, siendo las enfermedades neoplásicas las que ocupan el primer lugar, seguidas por enfermedades cerebrovasculares, causas externas y HIV-SIDA. La mayoría de los casos se ubican en las provincias del centro del país (San José, Alajuela y Heredia) y la minoría en Guanacaste. Conclusiones. Se logró estimar las necesidades de cuidado paliativo en Costa Rica por diagnósticos y provincia de domicilio documentando que la mayoría de las necesidades son por enfermedades terminales no oncológicas y en las provincias de San José, Alajuela y Heredia.

Abstract Background and aim. There is a lack of knowledge regarding palliative care needs in Costa Rica, which creates difficulties in being able to distribute resources properly. This study seeks to identify palliative care needs by province to serve as input for adequate planning and utilization of resources. Methods. The methodology designed by the Lancet Commission on Palliative Care and Pain Relief based on severe health-related suffering was used for 20 diseases with the greatest probable need for palliative care using the database of the Costa Rican Institute of Statistics and Census and databases of the Ministry of Health and the Caja Costarricense del Seguro Social. Results. In Costa Rica, 19502 people required palliative care in 2018, with neoplastic diseases occupying the first place, followed by cerebrovascular diseases, external causes, and HIV-AIDS. Most of the cases are in the central provinces of the country (San José, Alajuela, and Heredia) and the minority in Guanacaste. Conclusions. It was possible to estimate the palliative care needs in Costa Rica by diagnoses and province of residence, documenting that the majority of needs are for non- oncological terminal diseases and in the provinces of San José, Alajuela and Heredia.

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.