Medicina familiar, principios bioéticos y final de la vida en Colombia / Family Medicine, Bioethical Principles and End of Life in Colombia

Introducción: La medicina familiar, dentro de su enfoque biopsicosocial, acoge la valoración integral de cada individuo en su curso de vida, donde es indispensable integrar todos los principios bioéticos para brindar una atención adecuada, oportuna y humanizada. El abordaje del especialista en medicina familiar sobre el final de vida debe estar ligado a estos aspectos, lo que permite ampliar la relación clínica desde el paciente hasta su núcleo familiar y su equipo en salud. Objetivo: Discutir los principios bioéticos desde una perspectiva integrativa a partir de un recorrido por los principales apartados legales que se han desarrollado en Colombia desde la sentencia C-239 de 1997, en relación con el derecho a morir dignamente. Métodos: Se realizó una revisión narrativa mediante la búsqueda en PubMed, Elsevier, Scielo y la normativa del contexto colombiano. Conclusiones: La disponibilidad de la información permite tener claridad sobre los conceptos al final de vida y el quehacer de los profesionales de la salud en esta etapa, que permita brindar al paciente y a su familia información clara y alternativas en su manejo integral, que dignifique la relación médico-paciente-familia-equipo de salud(AU)

Introduction: Family medicine, within its biopsychosocial approach, welcomes the comprehensive assessment of each individual in his or her life course, where it is essential to integrate all bioethical principles to provide adequate, timely and humanized care. The approach of the family medicine specialist at the end of life should be linked to these aspects, which allows extending the clinical relationship of the patient to the family nucleus and the health team. Objective: To discuss bioethical principles from an integrative perspective based on the review of the main legal paragraphs that have been developed in Colombia since the C-239 ruling of 1997 in relation to the right to die with dignity. Methods: A narrative review was carried out through searches in PubMed, Elsevier, SciELO and in the normativity of the Colombian context. Conclusions: The availability of information allows clarity about the concepts at the end of life and the work of health professionals at this stage, which allows providing the patient and family with clear information and alternatives in their comprehensive management, which dignifies the doctor-patient-family-health team relationship(AU)

Ética médica y atención a pacientes en estadio terminal en el nivel primario de atención / Medical Ethics and End-stage Patient Care at the Primary Care Level

Introducción: El artículo reflexiona sobre la naturaleza multidimensional y compleja de la ética y su relación con las ciencias médicas. Objetivo: Reflexionar sobre la atención a pacientes en estadio terminal desde el punto de vista de la ética médica para una atención médica integral en el primer nivel de atención. Métodos: estudio cualitativo; se emplearon análisis documental, sistematización, análisis y síntesis de publicaciones sobre la temática estudiada como métodos teóricos, para ello se valoran los criterios de autores y resultados que se expresan en artículos publicados. Se realizaron búsquedas, tanto en bases de datos estudiadas como en las plataformas de productos del Nacional Council for Biotechnology Information de la Nacional Library of Medicine of United States of America; y de Elsevier, esta última productora de Embase y Scopus, a través del motor de búsqueda Google Académico, en español e inglés, y sin límite de tiempo. Se emplearon los términos: ética médica, deontología médica, relación médico-paciente, paciente terminal y cuidados paliativos. Se excluyeron aquellos artículos que no habían sido revisados por pares o no mostraban el texto completo. Se revisó la información suministrada por cada fuente y se sintetizó. Conclusiones: En Cuba, la bioética avanza en la medida que lo permite la estrategia de Atención Primaria de Salud, con un Programa del Médico y Enfermera de la Familia resiliente y de valores humanos demostrados nacional e internacionalmente. Como reto se plantea estimular el debate entre saberes para generar cambios a favor de los pacientes, las familias, las comunidades y la sociedad(AU)

Introduction: The article reflects on the multidimensional and complex nature of ethics and its relationship to the medical sciences. Objective: To reflect on the care of terminally ill patients from the point of view of medical ethics for comprehensive medical care at the primary level of care. Methods: A qualitative study was carried out using documentary analysis, systematization, analysis and synthesis of publications on the subject studied as theoretical methods. For this purpose, the criteria of authors and results expressed in published articles were evaluated. Searches were carried out in Spanish and English through Google Scholar, and without time limit, both in the databases studied and in the product platforms of the National Council for Biotechnology Information of the National Library of Medicine of the United States of America and Elsevier. The terms: medical ethics, medical deontolog, physician-patient relationship, terminal patient and palliative care were used. Articles that were not peer-reviewed and those that did not show the full text were excluded. The information provided by each source was reviewed and synthesized. Conclusions: In Cuba, bioethics advances to the extent allowed by the Primary Health Care strategy, with a resilient Family Physician and Nurse Practitioner Program and human values demonstrated nationally and internationally. The challenge is to stimulate the debate between knowledge to generate changes in favor of patients, families, communities and society(AU)

Permission for departing: spiritual nursing care in human finitude / Permiso para partir: un cuidado espiritual de enfermería en la finitud humana / Permissão de partida: um cuidado espiritual de enfermagem na finitude humana

ABSTRACT Objectives: To reflect on teaching experience in the application of the spiritual nursing care called permission for departing. Methods: It is a methodological reflection and description of a subtle technology for spiritual nursing care called permission for departing. Results: the permission for departing is a spiritual care that allows for an intentional therapeutic relationship of trust and safety among the professional, patients, and the family, enabling the expression of feelings, beliefs, and religious or spiritual rites that help in death and dying situations. Final Considerations: a concept structured by words and attitudes reinforcing what is positive was coined, aiming at a consciousness state of peace and the promotion of dignity in the death and dying process, as well as for time for the patients, their families and the team to experience contemplation and parting.

RESUMEN Objetivos: reflexionar sobre la experiencia docente en la práctica del cuidado espiritual de enfermería llamado permiso para partir. Métodos: se trata de reflexión y descripción metodológica de una tecnología sutil de cuidado espiritual de enfermería llamada permiso para partir. Resultados: el permiso para partir es un cuidado espiritual que proporciona una relación terapéutica intencional de confianza y seguridad entre el profesional, el paciente y la familia, además propicia la expresión de sentimientos, de creencias y de rituales religiosos o espirituales que auxilian en la situación de muerte y del morir. Consideraciones Finales: se ha acuñado un concepto estructurado con palabras y actitudes que refuerzan lo positivo, que busca un estado de conciencia de paz y la promoción de la dignidad en el proceso de muerte y del morir, así como un tiempo para que el paciente, la familia y el personal puedan experimentar la recogida y la despedida.

RESUMO Objetivos: refletir sobre a experiência docente na aplicação do cuidado espiritual de enfermagem denominado permissão de partida. Métodos: trata-se de uma reflexão e descrição metodológica de uma tecnologia leve de cuidado espiritual de enfermagem denominada permissão de partida. Resultados: a permissão de partida é um cuidado espiritual que facilita uma relação terapêutica intencional de confiança e segurança entre o profissional, o paciente e a família, propiciando a expressão de sentimentos, crenças e rituais religiosos ou espirituais que auxiliam na situação de morte e morrer. Considerações Finais: cunhou-se um conceito estruturado por palavras e atitudes que reforçam o positivo, buscando um estado de consciência de paz e a promoção da dignidade no processo de morte e morrer, bem como um tempo para que o paciente, a família e a equipe possam vivenciar recolhimento e despedida.

Análisis de los resultados de un programa de calidad en cuidados paliativos para los óltimos días de vida: Diez aóos de experiencia / Analysis of the results of a palliative care quality program for the last days of life. Ten years of experience

Las secuencias integradas de cuidado para ó;ºltimos días de vida proponen estándares de calidad para optimizar la atenció;n de pacientes y familias. Se implementó; el Programa Asistencial Multidisciplinario Pallium (PAMPA©) basado en estándares del International Collaborative for Best Care for the Dying Person en cuatro fases: inducció;n, implementació;n, diseminació;n y sustentabilidad, en cinco centros de salud en Argentina, entre 2008 y 2018. Se incluyeron 1237 pacientes adultos en situació;n de ó;ºltimos días de vida, en seguimiento por equipos de cuidados paliativos entrenados en el PAMPA©. Se efectuó; una auditoría antes y despuó;©s de la ejecució;n del programa, aó;ºn en curso. El rango de medianas de permanencia en los cinco centros desde el inicio de la secuencia hasta el fallecimiento fue de 16 a 178 horas. Se compararon objetivos de cuidado: control de síntomas, comunicació;n, necesidades multidimensionales, hidratació;n y nutrició;n, documentació;n de intervenciones y cuidados post mortem. El análisis conjunto mostró; una mejoría del nó;ºmero de registros (p = 0.001). La comunicació;n del plan de cuidados con el paciente no mostró; diferencias (p = 0.173). Se realizó; capacitació;n y supervisió;n permanente a los equipos profesionales de quienes se registraron percepciones de la implementació;n. Los principales emergentes de este análisis cualitativo fueron: actitudes ante el programa, aportes fundamentales, fortalezas, debilidades y definició;n subjetiva del programa, reconocimiento de las singularidades culturales institucionales y su influencia en el cuidado. El PAMPA© demostró; la factibilidad de un modelo de atenció;n para pacientes y familias en final de vida, basado en estándares de calidad internacionales.

The integrated care pathways for the last days of life propose quality standards optimizing the care of patients and families. The Pallium Multidisciplinary Assistance Program (PAMPA©) was implemented based on standards of the International Collaborative for Best Care for the Dying Person in 4 phases: induction, implementation, dissemination and sustainability, in five health centres in Argentina, between 2008 and 2018. A total of 1237 adult patients in the last days of life were included and cared for by palliative care teams trained in PAMPA©. An audit was conducted before and after the implementation of the Program, which is still going on. The median range of follow up into five centres from the beginning of the pathway until death varied from 16 to 178 hours. Care goals were compared: symptom control, communication, multidimensional needs, hydration and nutrition, documentation of interventions and post-mortem care. The overall analysis showed an improvement in the number of records (p = 0.001). The goal of communication on care plan to the patient showed no difference (p = 0.173). Continuous training, support and permanent teams supervision were carried out and perceptions and impact of the implementation were registered. The main emerging items of the qualitative analysis were: attitudes towards the program, fundamental contributions, strengths, weaknesses and subjective definition of the program, recognition of institutional cultural singularities and its influence on care. PAMPA© demonstrated its feasibility as a model of end of life care for patients and families, based on international quality standards.

The role of end-of-life palliative sedation: medical and ethical aspects - Review / O papel da sedação paliativa no fim da vida: aspectos médicos e éticos - Revisão

Abstract Background and objective: Palliative sedation is a medical procedure that has been used for more than 25 years to relieve refractory symptoms not responsive to any previous treatment in patients with no possibility of cure and near the end of life. Many uncertainties persist on the theme regarding definition, indications, decision making, most appropriate place to perform the procedure, most used drugs, need for monitoring, fluids and nutritional support, and possible ethical dilemmas. The objective of this review was to seek a probable consensus among the authors regarding these topics not yet fully defined. Method: An exploratory search was made in secondary sources, from 1990 to 2016, regarding palliative sedation and its clinical and bioethical implications. Conclusions: Palliative sedation is an alternative to alleviate end-of-life patient suffering due to refractory symptoms, particularly dyspnea and delirium, after all other treatment options have been exhausted. Decision making involves prior explanations, discussions and agreement of the team, patient, and/or family members. It can be performed in general hospital units, hospices and even at home. Midazolam is the most indicated drug, and neuroleptics may also be required in the presence of delirium. These patients' monitoring is limited to comfort observation, relief of symptoms, and presence of adverse effects. There is no consensus on whether or not to suspend fluid and nutritional support, and the decision must be made with family members. From the bioethical standpoint, the great majority of authors are based on intention and proportionality to distinguish between palliative sedation, euthanasia, or assisted suicide.

Resumo Justificativa e objetivo: Sedação paliativa é um procedimento médico que tem sido empregado há mais de 25 anos com a finalidade de aliviar sintomas refratários que não respondem a tratamento anterior em pacientes sem possibilidade de cura e próximos do fim da vida. Muitas incertezas persistem sobre o tema no que diz respeito à definição, às indicações, à tomada de decisão, ao local mais adequado para fazer o procedimento, aos fármacos mais usados, à necessidade de monitoração, ao apoio hídrico e nutricional e aos possíveis dilemas éticos. O objetivo desta revisão foi o de buscar um provável consenso entre os autores em relação a esses tópicos ainda não totalmente definidos. Método: Foi feita uma pesquisa exploratória em fontes secundárias, a partir de 1990 até 2016, a respeito de sedação paliativa e suas implicações clínicas e bioéticas. Conclusões: A sedação paliativa é uma opção para aliviar sofrimento de pacientes no fim da vida, devido a sintomas refratários, especialmente dispneia e delirium, após terem sido esgotadas todas as outras opções de tratamento. A tomada de decisão envolve explicações prévias, discussões e concordância da equipe, pacientes e ou parentes. Pode ser feita em unidades hospitalares gerais ou de retarguarda e mesmo no domicílio. Midazolam é o fármaco mais indicado, podendo ser necessários também neurolépticos na presença de delirium. A monitoração desses pacientes se resume apenas à observação do conforto, do alívio dos sintomas e da presença de efeitos adversos. Não existe consenso em suspender ou não o apoio hídrico e nutricional; a decisão deve ser tomada junto aos parentes. Do ponto de vista bioético, a grande maioria dos autores se fundamenta na intenção e na proporcionalidade para fazer a distinção entre sedação paliativa, eutanásia ou suicídio assistido.

Circunstâncias e consequências do cuidar: estudo prospetivo em cuidados paliativos / Circumstances and consequences of care: a prospective study in palliative care

Resumo As várias circunstâncias que afetam a prestação de cuidados em fim-de-vida podem ter um papel determinante no resultado desta experiência, nomeadamente nos níveis de morbilidade psicológica antes e depois da perda. Este estudo tem por objetivos descrever a prevalência da sobrecarga e sintomatologia psicopatológica dos cuidadores familiares em cuidados paliativos e identificar as circunstâncias que lhe estão associadas. Pretendemos ainda avaliar a evolução da sintomatologia, identificando os fatores circunstanciais que interferem na fase aguda do luto. A amostra foi constituída por 75 cuidadores portugueses, a maioria do sexo feminino e filhas do doente. Os resultados revelam que as pessoas mais envolvidas nos cuidados ao doente apresentam mais sobrecarga e estão mais propensas a sintomatologia psicopatológica, a qual tem tendência a manter-se no luto. Ficou também demonstrada a existência de sintomas peritraumáticos que parecem contribuir significativamente para o estado geral de distress no luto agudo. O suporte social tem efeito protetor nos diferentes quadros sintomatológicos e está relacionado com o funcionamento familiar. Estes resultados sugerem a possibilidade de identificar precocemente os cuidadores mais vulneráveis e as circunstâncias adversas que os afetam.

Abstract The sundry circumstances that affect end-of-life care can have a determining role in the result of this experience, particularly in psychological morbidity levels before and after bereavement. The aim of this study is to describe the prevalence of psychopathological symptoms and overburden among family caregivers in palliative care and to identify the circumstances associated with care provision. An attempt was made to evaluate the progress of psychopathological symptoms, identifying circumstantial factors that can interfere in acute grief. The sample consisted of 75 Portuguese caregivers, mostly women and patients' daughters. The results show that caregivers more involved with patient care bear a greater burden and are more likely to manifest psychopathological symptoms, which persist in acute grief. Moreover, the existence of peritraumatic symptoms seem to contribute significantly to the overall state of distress in acute grief. Social support has a protective effect in the different symptomatologic situations and are closely related to family dynamics. These results suggest the possibility of early identification of the most vulnerable caregivers and the adverse circumstances that affect them.

Novos conceitos em cuidados paliativos na unidade de terapia intensiva / New concepts in palliative care in the intensive care unit

RESUMO Alguns dos pacientes admitidos em uma unidade de terapia intensiva podem enfrentar condições de doença terminal, que geralmente levam à morte. O conhecimento sobre cuidados paliativos é recomendado para os profissionais de saúde encarregados do cuidado destes pacientes. Em muitas situações, os pacientes devem ser avaliados diariamente, já que a introdução de novos tratamentos pode ou não ser benéfica para eles. As discussões entre os membros da equipe de saúde, relacionadas ao prognóstico e aos objetivos do tratamento, devem ser avaliadas cuidadosamente em cooperação com os pacientes e seus familiares. A adoção na unidade de terapia intensiva de protocolos relacionados a pacientes em final da vida é fundamental. É importante ter uma equipe multidisciplinar para determinar se é necessário deixar de iniciar ou mesmo retirar tratamentos avançados. Além disto, pacientes e familiares devem ser informados de que os cuidados paliativos envolvem o melhor tratamento possível para aquela situação específica, assim como respeitar suas vontades e considerar as bases sociais e espirituais dos mesmos. Assim, o objetivo desta revisão foi apresentar os cuidados paliativos como uma opção razoável para dar suporte à equipe da unidade de terapia intensiva na assistência a pacientes com doença terminal. São apresentadas atualizações com relação a dieta, ventilação mecânica e diálise nestes pacientes. Ainda, discutiremos o programa, comum nos Estados Unidos, conhecido como filosofia hospice, como alternativa ao ambiente da unidade de terapia intensiva/hospital.

ABSTRACT Some patients admitted to an intensive care unit may face a terminal illness situation, which usually leads to death. Knowledge of palliative care is strongly recommended for the health care providers who are taking care of these patients. In many situations, the patients should be evaluated daily as the introduction of further treatments may not be beneficial to them. The discussions among health team members that are related to prognosis and the goals of care should be carefully evaluated in collaboration with the patients and their families. The adoption of protocols related to end-of-life patients in the intensive care unit is fundamental. A multidisciplinary team is important for determining whether the withdrawal or withholding of advanced care is required. In addition, patients and families should be informed that palliative care involves the best possible care for that specific situation, as well as respect for their wishes and the consideration of social and spiritual backgrounds. Thus, the aim of this review is to present palliative care as a reasonable option to support the intensive care unit team in assisting terminally ill patients. Updates regarding diet, mechanical ventilation, and dialysis in these patients will be presented. Additionally, the hospice-model philosophy as an alternative to the intensive care unit/hospital environment will be discussed.

Percepção de profissionais de saúde sobre o processo de tomada de decisão na assistência a pacientes pediátricos / Health professionals' perceptions about the decision-making process in the care of pediatric patients

RESUMO Objetivo: Avaliar as percepções de médicos, enfermeiros e técnicos de enfermagem sobre sua participação no processo de tomada de decisão de limitação de suporte de vida, em pacientes pediátricos terminais, comparando por categoria profissional. Métodos: Estudo transversal realizado em unidade de terapia intensiva pediátrica de hospital público universitário, terciário, com a participação de médicos, enfermeiros e técnicos de enfermagem. Foi usada a Escala de Voz da MacArthur Admission Experience Survey para avaliar e quantificar a percepção dos profissionais que assistiram 17 pacientes pediátricos em limitação de suporte de vida, nas primeiras 24 horas após o desfecho de cada paciente. Todos os profissionais que atuavam na unidade (n=117), potencialmente elegíveis para a pesquisa, receberam o Termo de Consentimento Livre e Esclarecido previamente à ocorrência dos casos. Resultados: Participaram 25/40 (62,5%) médicos, 10/17 (58,8%) enfermeiros e 41/60 (68,3%) técnicos de enfermagem, representando 65% dos profissionais elegíveis. A taxa de devolução dos questionários pelos médicos foi maior que a dos técnicos (p = 0,0258). Houve registro de percepção de falta de voz nas três categorias profissionais, em taxas variáveis, porém menos percebida pelos médicos do que pelos enfermeiros e técnicos (p < 0,00001); entre estes últimos, não houve diferença (p = 0,7016). Nas três categorias profissionais, foram assinalados os três itens que compõem a subescala. Em duas das três afirmativas, houve diferença significativa entre médicos e enfermeiros (p = 0,004), e entre médicos e técnicos (p = 0,001). Em uma das afirmativas, não houve diferença entre as três categorias profissionais. Conclusão: Houve percepção de falta de voz no processo de tomada de decisão, em taxas variáveis, nas três categorias de profissionais que assistiram pacientes pediátricos terminais em limitação de suporte de vida, sendo os médicos os que expressaram menor percepção de coerção.

ABSTRACT Objective: To evaluate the perceptions of physicians, nurses and nursing technicians of their participation in the decision-making process surrounding life support limitation in terminally ill pediatric patients, with comparisons by professional category. Methods: A cross-sectional study was conducted in the pediatric intensive care unit of a tertiary public university hospital with the participation of physicians, nurses and nursing technicians. The MacArthur Admission Experience Survey Voice Scale was used to assess and quantify the perceptions of professionals who assisted 17 pediatric patients with life support limitation within 24 hours after the outcome of each patient was determined. All professionals working in the unit (n = 117) who were potentially eligible for the study received a free and informed consent form prior to the occurrence of the cases studied. Results: Study participants included 25/40 (62.5%) physicians, 10/17 (58.8%) nurses and 41/60 (68.3%) nursing technicians, representing 65% of the eligible professionals identified. The questionnaire return rate was higher for physicians than technicians (p = 0.0258). A perceived lack of voice was reported in all three professional categories at varying rates that were lower for physicians than for nurses and nursing technicians (p < 0.00001); there was no difference between the latter (p = 0.7016). In the three professional categories studied, three subscale items were reported. For two of the three statements, there were significant differences between physicians and nurses (p = 0.004) and between physicians and nursing technicians (p = 0.001). For one of the statements, there was no difference among the three professional categories. Conclusion: Respondents perceived a lack of voice in the decision-making process at varying rates across the three categories of studied professionals who assisted terminally ill pediatric patients with life support limitation, with physicians expressing lowered rates of perceived coercion.

Manejo del potencial donante cadáver / Management of the potential organ donor

Solid organ transplantation is limited by donor availability. The loss of brain function produces hemodynamic, respiratory, hormonal and metabolic changes that lead to hypotension and organ dysfunction. Management of a potential donor is similar to any critically ill patient. Cardiovascular stability and protective ventilatory support must be pursued, aimed at minimizing the local and systemic inflammatory response that is triggered by brain death. There is no consensus on protocols for hormonal supplementation. The administration of vasopressin analogues and steroids may be beneficial under certain conditions. Appropriate medical management helps to optimize the function of different organs prior to transplantation. This may increase the number of harvested organs and improve their functional outcome in the recipient.

El tratamiento del dolor por cáncer en el final de la vida: estudio de caso en un servicio de cuidados paliativos de la Ciudad Autónoma de Buenos Aires / Treatment for cancer pain at the end of life: a case study in a palliative care service in the Autonomous City of Buenos Aires

La prevención y el alivio del dolor por cáncer, definidos en las últimas décadas como un desafío para la salud pública a nivel internacional, han sido planteados recientemente en los debates públicos como una cuestión de derechos humanos. Pese a ello, existen importantes barreras para la provisión de tratamientos adecuados. El artículo analiza el tratamiento del dolor por cáncer en un servicio de cuidados paliativos de la Ciudad Autónoma de Buenos Aires, poniendo el foco en la forma en que profesionales y pacientes instrumentan y negocian los términos y la adherencia al tratamiento del dolor. A partir de un abordaje cualitativo, que triangula datos de entrevistas semiestructuradas y observaciones etnográficas, el artículo describe la forma en que el dolor es objetivado y medido, y las estrategias de los profesionales para consensuar los protocolos de tratamiento. Asimismo, se describe el modo en que los profesionales construyen en la práctica una retórica del derecho al alivio del dolor y se discuten sus límites.

Cancer pain relief has been defined as a worldwide public health challenge in the last decades and has recently been included in public debates as a human rights issue. However, barriers to the provision of adequate pain management continue to exist. This article analyzes the cancer pain treatment provided in a palliative care setting in the Autonomous City of Buenos Aires, focusing on how professionals and patients implement and negotiate the terms and adherence to the pain treatment. Based on a qualitative approach that triangulates data from semi-structured interviews and from ethnographic observations, the article addresses the way pain is measured and assessed and the strategies of health professionals in establishing pain treatment protocols. The article also describes the rhetoric regarding the right to pain relief developed by health professionals through their practice and discusses the limitations of that rhetoric.

Problemas y decisiones al final de la vida en pacientes con enfermedad en etapa terminal / Terminally-ill patients' end of life problems and related decisions

Objetivos Describir preferencias en las decisiones al final de la vida en pacientes y familiares, problemas que subyacen y motivos que los llevan a solicitar apoyo. Métodos Estudio descriptivo, exploratorio de fuentes secundarias de una ONG que brinda apoyo a los pacientes al final de la vida. Resultados La opción más frecuente fue la muerte digna en 43 % seguida de la eutanasia en un 12 %. Un 22 % de las personas solicitaban orientación sobre aspectos éticos y legales y además referentes a la atención adecuada para enfermos terminales. Las patologías que ocuparon el 75 % de los diagnósticos fueron Enfermedad Crónica Degenerativa, Cáncer y Estado de Coma. La agudización de síntomas fue el principal motivo por el cual solicitaron apoyo y el dolor incontrolable llevó con más frecuencia a la opción por la eutanasia. Sólo 14 % de los pacientes habían formalizado sus voluntades anticipadas respecto al final de la vida. La opción de muerte digna se relacionó con el rechazo a medidas fútiles y al encarnizamiento terapéutico. La eutanasia se percibió como acción intencional y autónoma de poner fin al sufrimiento. La familia juega un papel esencial en la toma de decisiones. Conclusiones Las decisiones al final de la vida son motivadas por la percepción de unas condiciones no dignas debidas al deterioro progresivo, dolor mal controlado, abandono del paciente crónico, encarnizamiento terapéutico y uso de medidas innecesarias que posponen la muerte. Se toman en un contexto complejo de dilemas religiosos, éticos y legales.

Objectives Describing terminally-ill patients and their relatives' preferences regarding end of life decisions, the underlying problems and reasons leading to them requesting support. Methods This was a descriptive, exploratory analysis of the secondary sources in an NGO providing support for patients at the end of their lives. Results The most frequent choice was dying with dignity (43 %), followed by euthanasia (12 %). Some people asked for guidance on legal and ethical aspects regarding appropriate care for the terminally-ill. The pathologies accounting for 75 % of the diagnoses were chronic degenerative diseases, cancer and coma. The worsening of symptoms was the main reason for requesting support and uncontrollable pain more often led to the choice of euthanasia. Only 14 % of the patients had formalised their wills regarding their end of life decisions. The choice of dying with dignity was related to rejecting futile measures and therapeutic cruelty. Euthanasia was seen as an autonomous intentional action to end suffering. The family plays an essential role in making end of life decisions. Conclusions End of life decisions are motivated by a perception of undignified conditions for patients due to progressive deterioration, poorly controlled pain, abandoning of chronic patients, therapeutic obstinacy and unnecessary measures that postpone death. They are taken within a complex context concerning religious dilemmas and ethical or legal concerns.

A música na terminalidade humana: concepções dos familiares / Music in human terminality: the family members' conceptions / La música en pacientes terminales: concepciones de los familiares

Estudo qualitativo que utilizou a estratégia metodológica do estudo de casos múltipos e a fenomenologia existencial heideggeriana para analisar os dados. O objetivo foi compreender como os familiares percebem a influência das vivências musicais na saúde física e mental de um familiar que experiencia a terminalidade. Os dados foram coletados junto a sete indivíduos pertencentes a duas famílias por meio de entrevista e observação em maio e junho de 2009. Os resultados mostraram que a utilização da música no cuidado dos seres que vivenciam o câncer pode proporcionar bem-estar aos pacientes e cuidadores. Considerando-se o déficit de lazer e a monotonia do ambiente domiciliar, a utilização da música contempla os preceitos filosóficos e humanitários dos cuidados paliativos, caracterizando-se como um recurso complementar no cuidado de enfermagem, pois além de constituir um recurso de comunicação, promove melhor relacionamento interpessoal entre o doente e sua família.

This qualitative study was performed using the multiple case study method and Heidegger's existential phenomenology for data analysis. The objective was to understand how family members perceive the influence of musical experiences on the physical and mental health of a relative living with a terminal illness. Participants were seven individuals belonging to two families. Data collection was performed through interviews and observation from May to June 2009. Results showed that using music while providing care to beings living with cancer can provide well-being to patients as well as their caregivers. Considering the deficit of leisure and the monotony of the home environment, using music contemplates the philosophical and humanitarian precepts of palliative care, thus being characterized as a complementary resource to nursing care, as besides being a communication resource, it improves the interpersonal relationship between patients and their families.

Estudio cualitativo que utilizó la estrategia metodológica del estudio de casos múltiple y la fenomenología existencial heideggeriana para analizar los datos. El objetivo fue comprender el modo en que los familiares perciben la influencia de las experiencias musicales en la salud física y mental de un familiar en estado terminal. Los datos fueron recolectados en mayo y junio de 2009, junto a siete individuos pertenecientes a dos familias, a través de entrevistas y observación. Los resultados mostraron que la utilización de música en el cuidado de los pacientes de cáncer puede proporcionarles bienestar, tanto a los pacientes como a sus cuidadores. Considerándose el déficit de placer y la monotonía del ámbito domiciliario, la utilización de la música contempla los preceptos filosóficos y humanitarios de los cuidados paliativos, caracterizándose como un recurso complementario en el cuidado de enfermería, pues más allá de constituir un recurso de comunicación, promueve una mejor relación interpersonal entre el enfermo y su familia.

End of life in the neonatal intensive care unit

PURPOSE: Death at the beginning of life is tragic but not uncommon in neonatal intensive care units. In Portugal, few studies have examined the circumstances surrounding the final moments of neonates. We evaluated the care given to neonates and their families in terminal situations and the changes that had occurred one decade later. DESIGN AND METHODS: We analyzed 256 charts in a retrospective chart review of neonatal deaths between two periods (1992-1995 and 2002-2005) in a level III neonatal intensive care unit. RESULTS: Our results show differences in the care of dying infants between the two periods. The analysis of the 2002-2005 cohort four years revealed more withholding and withdrawing of therapeutic activities and more effective pain and distress relief; however, on the final day of life, 95.7 percent of the infants received invasive ventilatory support, 76.3 percent received antibiotics, 58.1 percent received inotropics, and 25.8 percent received no opioid or sedative administration. The 2002-2005 cohort had more spiritual advisor solicitation, a higher number of relatives with permission to freely visit and more clinical meetings with neonatologists. Interventions by parents, healthcare providers and ethics committees during decision-making were not documented in any of the charts. Only eight written orders regarding therapeutic limitations and the adoption of palliative care were documented; seven (87.5 percent) were from the 2002-2005 cohort. Parental presence during death was more frequent in the latter four years (2002-2005 cohort), but only 21.5 percent of the parents wanted to be present at that moment. CONCLUSION: Despite an increase in the withholding and withdrawing of therapeutic activities and improvements in pain management and family support, many neonates still receive curative and aggressive practices at the end of life.

Avaliação dos óbitos ocorridos no Hospital Universitário da Universidade Federal de Santa Catarina (HU/UFSC) / Evaluation of deaths occurred at the University Hospital (HU/UFSC)

OBJETIVO: Avaliar os óbitos ocorridos no HU/UFSC. Comparar o perfil dos pacientes que morreram nas enfermarias com o daqueles que morreram na UTI. Verificar se os óbitos foram considerados esperados (E) e não evitáveis (NE). Constatar se houve recusa/suspensão de terapêutica (RST) precedendo a morte. MÉTODOS: Obtivemos dados por meio de ficha elaborada pela Comissão de Óbito Hospitalar (COH), na qual constavam os aspectos demográficos, clínicos e terapêuticos dos pacientes e a avaliação da COH sobre a expectativa/evitabilidade dos óbitos. RESULTADOS: Analisamos os dados dos 326 pacientes com mais de 14 anos, que morreram entre julho/2004 e dezembro/2005. Desses, 128 morreram na UTI (G1) e 198 nas enfermarias (G2). A RST precedeu 38,2 por cento dos óbitos no G1 e 2 por cento no G2 (p<0,001). As principais terapêuticas recusadas/suspensas foram drogas vasoativas e antibióticos. No G1 cerca de 20 por cento das mortes foi classificada como E/NE. No G2 considerou-se 5 por cento das mortes evitáveis e 6,5 por cento não esperadas (p<0,001). Os pacientes do G1 eram mais jovens e do sexo masculino (p<0,005). A ordem de não reanimar constava em 48,4 por cento dos prontuários do G2 e em 6,3 por cento do G1(p<0,001). Manobras de reanimação cardiorrespiratória (RCR) ocorreram em 23,4 por cento no G1 e em 5,5 por cento no G2(p<0,001). CONCLUSÃO: Na UTI, os pacientes que morreram eram mais jovens, receberam mais DVA e os óbitos foram mais freqüentemente precedidos da RST. Houve reanimação cardiorrespiratória em 5 por cento das PCR nas enfermarias onde se constatou ordem de não reanimar em 48 por cento dos prontuários. Poucos óbitos foram considerados E/NE. Não houve indícios de erro profissional ou institucional nesses óbitos.

OBJECTIVE: To evaluate the deaths which occurred at the HU/UFSC. To compare the profile of patients who died in the wards with that of patients who died in the ICU. To classify deaths which were expected or not, and avoidable or not. To verify how often withholding or withdrawing (WW) therapy preceded death. METHODS: Archives of the Hospital Death Commission (HDC) were analyzed. The clinical and demographic records were retrieved from the HDC data bank. Deaths were classified by the HDC as expected or not and avoidable or not. RESULTS: Data from 326 dead persons over 14 years of age were analyzed. One hundred and twenty eight deaths occurred in the ICU (G1) and 198 in the wards (G2). WW therapy preceded 38.2 percent of deaths in G1 and 2 percent in G2 (p<0.001). The main WW therapies were vasoactive drugs and antibiotics. Almost 20 percent of deaths were unexpected/avoidable in G1. In G2 6.5 percent were considered unexpected and 5 percent avoidable (p<0.005). Patients in G1 were younger and mostly male (p<0.005). Do-not-resuscitate orders were registered in 48.4 percent of patients' medical charts in G2 and 6.3 percent in G1 (p<0.001). Cardiopulmonary resuscitation was performed in 23.4 percent of patients in G1 and in 5.5 percent in G2 (p<0.001). CONCLUSION: In G1, patients were younger and deaths were more frequently preceded by WW. In G2, half of the patients had do-not-resuscitate order registered in their medical charts. In only a few patients were deaths considered unexpected or avoidable. No evident professional or institutional error was identified.

Dolor y cuidados paliativos como parte del curriculum de pregrado de medicina en la Universidad de Chile / Pain and palliative care as part of the curriculum at Universidad de Chile under graduate school

El dolor es el síntoma más frecuente en la práctica médica, enseñándose solamente sus bases fisiopatológicas. Objetivo: Mostrar la experiencia innovadora de la incorporación de un internado electivo de dolor y cuidados paliativos en el la formación curricular de medicina. Material y métodos: Desde enero de 2007 se incorporaron electivamente internos a las actividades de la Unidad de Dolor y Cuidados Paliativos del Hospital Clínico Universidad de Chile, con el objetivo principal de comprender las diferencias clínicas y fisiopatológicas de dolor agudo, crónico y dolor oncológico, con el fin de abordar adecuadamente el dolor en patologías que pueden ser tratadas por el médico general y referir las de mayor complejidad. Resultados: Un total de 7 internos realizaron esta rotación, todos fueron evaluados con calificación sobresaliente (>90 por ciento), alcanzando un alto logro de las actitudes y habilidades propuestas (>75 por ciento). Se destacó de parte de los internos la importancia de los conocimientos adquiridos destacando el rol asistencial y de promoción en el manejo del dolor y cuidados paliativos. Además, se logró el desarrollo de las habilidades prácticas y comunicacionales necesarias para la atención de los pacientes con dolor oncológico y crónico benigno. Discusión: Se logró un adecuado manejo del dolor y cuidados paliativos por parte de los internos, al contar con el concepto de apoyo integral del paciente, no sólo como receptor del acto médico, sino que también como persona. Proponemos la incorporación formal de los cuidados paliativos en el pregrado de medicina.

Introduction: Pain is the most frequently present symptom in medicine, however, only the physiophatologic grounds of the same are taught. Objective: To show the innovative experience in including an elective pain and palliative care internship in the med school curriculum. Material and methods: Some interns voluntarily joined in January 2007 the Pain and Palliative Care Unit at Hospital Clínico Universidad de Chile with the object to understand the clinical and physiopathologic differences in accute pain, chronic pain and oncologic pain and find the most adequate approach to pain in pathologies that can be treated by a general physician and the more complex ones thet need to be treated by a specialist. Results: A total of 7 interns volunteered to this internship who obtained outstanding grades (>90 percent) and highly achieved the proposed outlook and capabilities (>75 percent). Interns emphasized the importance of knowledge acquired as well as their participation and assistance in the pain management and palliative care unit. In addition, they enhanced their practical and communication skills that are necessary to treat patients with oncologic pain and benign chronic pain. Discussion: Interns learned to adequately manage pain and palliative care using a new concept that basically provides integral support to the patient who is not seen just as the recipient of the medical act, but also as a human being. We propose that palliative care is included as part of the pre med school curriculum.