Cuidados terminais: reflexão filosófica sob a ótica da ética e da moral / Cuidados terminales: reflexión filosófica desde la perspectiva de la ética y la moral / Terminal care: philosophical reflection from ethical and moral perspectives

RESUMO Objetivo Objetivou-se refletir sobre a prática assistencial do cuidado ao paciente com doença terminal sob a ótica da ética e da moral. Método Trata-se de estudo teórico-reflexivo realizado a partir da análise crítica de textos filosóficos sobre ética e moral no contexto do desenvolvimento moral humano e das práticas de saúde. Resultados Na época dos filósofos gregos, a ética se baseava na busca pela felicidade; contudo, com o advento do cristianismo, ela passou a ser vista como um dever. Pela ótica de Kant, a ética e a moral são também um dever, um imperativo categórico, e a questão da manutenção da vida deve ser perseguida, abrindo espaço para a ocorrência de práticas de distanásia. Já para Hans Jonas, o dever dos profissionais de saúde é considerar a qualidade de vida dos pacientes mais do que da quantidade de vida, introduzindo conceitos dos cuidados paliativos. Conclusão e implicações para a prática Tais conceitos se modificaram ao longo da história, sendo necessário conhecê-los, fazer uma reflexão crítica sobre a finitude humana e repensar as condutas nesse processo.

RESUMEN Objetivo El objetivo fue reflexionar sobre la práctica del cuidado al paciente con enfermedad terminal desde una perspectiva de la ética y la moral. Método Se trata de un estudio teórico-reflexivo, basado en el análisis crítico de textos filosóficos sobre ética y moral en el contexto del desarrollo moral humano y las prácticas de salud. Resultados La ética, en la época de los filósofos griegos, se basaba en la búsqueda de la felicidad, sin embargo, con el advenimiento del cristianismo, ésta pasó a ser vista como un deber. Desde el punto de vista de Kant, la ética y la moral también son un deber, un imperativo categórico y la cuestión del mantenimiento de la vida debe ser perseguida, abriendo espacio para la ocurrencia de prácticas distanásicas. Para Hans Jonas, el deber de los profesionales de la salud es considerar la calidad de vida de los pacientes por encima de la cantidad de vida, introduciendo conceptos de cuidados paliativos. Conclusión e implicaciones para la práctica Tales conceptos han cambiado con la historia, requiriendo conocimiento y reflexión crítica sobre la finitud humana y repensar el comportamiento en este proceso.

ABSTRACT Objective To reflect on the care practice for patients with a terminal illness from ethical and moral perspectives. Method This is a theoretical-reflective study carried out from the critical analysis of philosophical texts on ethics and morals in the context of human moral development and health practices. Results At the time of Greek philosophers, ethics was based on the search for happiness. However, with the advent of Christianity, this came to be seen as a duty. According to Kant, ethics and morals are duties as well — a categorical imperative — and the life maintenance issue must be pursued, opening space for the occurrence of dysthanasia practices. From Hans Jonas' point of view, otherwise, health professionals must consider the quality of life of the patient over their life span, introducing concepts of palliative care. Conclusion and implications for the practice The above-mentioned concepts changed over time, and knowing them is necessary for critically reflecting on human finitude and rethinking practices that revolve around this process.

Perceptions of Bereaved Caregivers and Clinicians About End-of-Life Care for Patients With Destination Therapy Left Ventricular Assist Devices.

Background Patients with left ventricular assist devices (LVADs) implanted as destination therapy may receive suboptimal preparation for and care at the end of life, but there is limited understanding of the reasons for these shortcomings. Exploring perceptions of individuals (caregivers and clinicians) who are closely involved in the end-of-life experience with patients with destination therapy LVADs can help identify key opportunities for improving care. Methods and Results We conducted semistructured qualitative interviews with 7 bereaved caregivers of patients with destination therapy LVADs and 10 interdisciplinary LVAD clinicians. Interviews explored perceptions of preparing for end of life, communicating about end of life, and providing and receiving end-of-life care, and were analyzed using a 2-step team-based inductive approach to coding and analysis. Six themes pertaining to end-of-life experiences were derived: (1) timing end-of-life discussions in the setting of unpredictable illness trajectories, (2) prioritizing end-of-life preparation and decision-making, (3) communicating uncertainty while providing support and hope, (4) lack of consensus on responsibility for end-of-life discussions, (5) perception of the LVAD team as invincible, and (6) divergent perceptions of LVAD withdrawal. Conclusions This study revealed 6 unique aspects of end-of-life care for patients with destination therapy LVADs as reported by clinicians and caregivers. Themes coalesced around communication, team-based care, and challenges unique to patients with LVADs at end of life. Programmatic changes may address some aspects, including training clinicians in LVAD-specific communication skills. Other aspects, such as standardizing the role of the palliative care team and developing practical interventions that enable timely advance care planning during LVAD care, will require multifaceted interventions.

British laypeople's attitudes towards gradual sedation, sedation to unconsciousness and euthanasia at the end of life.

BACKGROUND: Many patients at the end of life require analgesia to relieve pain. Additionally, up to 1/5 of patients in the UK receive sedation for refractory symptoms at the end of life. The use of sedation in end-of-life care (EOLC) remains controversial. While gradual sedation to alleviate intractable suffering is generally accepted, there is more opposition towards deliberate and rapid sedation to unconsciousness (so-called "terminal anaesthesia", TA). However, the general public's views about sedation in EOLC are not known. We sought to investigate the general public's views to inform policy and practice in the UK. METHODS: We performed two anonymous online surveys of members of the UK public, sampled to be representative for key demographic characteristics (n = 509). Participants were given a scenario of a hypothetical terminally ill patient with one week of life left. We sought views on the acceptability of providing titrated analgesia, gradual sedation, terminal anaesthesia, and euthanasia. We asked participants about the intentions of doctors, what risks of sedation would be acceptable, and the equivalence of terminal anaesthesia and euthanasia. FINDINGS: Of the 509 total participants, 84% and 72% indicated that it is permissible to offer titrated analgesia and gradual sedation (respectively); 75% believed it is ethical to offer TA. Eighty-eight percent of participants indicated that they would like to have the option of TA available in their EOLC (compared with 79% for euthanasia); 64% indicated that they would potentially wish for TA at the end of life (52% for euthanasia). Two-thirds indicated that doctors should be allowed to make a dying patient completely unconscious. More than 50% of participants believed that TA and euthanasia were non-equivalent; a third believed they were. INTERPRETATION: These novel findings demonstrate substantial support from the UK general public for the use of sedation and TA in EOLC. More discussion is needed about the range of options that should be offered for dying patients.

Aspectos bioéticos dos cuidados em saúde às pessoas idosas ao fim da vida / Bioethical aspects of health care provided to older adults at the end of their lives / Aspectos bioéticos de los cuidados de salud a adultos mayores en el final de la vida

Objetivo: analisar a produção científica nacional e internacional, buscando as interfaces existentes entre os princípios bioéticos e os cuidados em saúde prestados ao fim da vida às pessoas idosas. Método: revisão integrativa, cuja busca ocorreu entre outubro e novembro de 2019 nas bases de dados Medline via Pubmed, Lilacs e Scopus com os descritores: "Palliative Care", "Aged" e "Bioethics" de 2014-2019. Resultados: a partir dos artigos selecionados, emergiram as seguintes categorias: condutas terapêuticas frente aos cuidados ao fim da vida; tomada de decisão nos cuidados ao fim da vida; e desafios nos cuidados ao fim da vida. Conclusão: destaca-se a relevância dos profissionais manterem o compromisso com a pessoa idosa e sua família de forma a considerar suas subjetividades e preferências e os instrumentalizar para que os cuidados sejam pautados em princípios bioéticos, para assim proporcionar um processo de morte e de morrer com dignidade.

Objective: to examine the Brazilian and international scientific production for connections between bioethical principles and the health care provided to older adults at the end of their lives. Method: between October and November 2019 this integrative review searched the Medline (Pubmed), Lilacs, and Scopus databases using the descriptors: "Palliative Care", "Aged", and "Bioethics" for the period 2014-2019. Results: the following categories emerged from the selected articles: therapeutic conducted with regard to end-of-life care; decision making on end-of-life care; and challenges in end-of-life care. Conclusion: of particular importance is for health professionals to uphold their commitment to older adults and their families, consider their subjectivities and preferences, and empower and equip them so that care is guided by bioethical principles in order to assure a dignified process of dying and death.

Objetivo: examinar la producción científica brasileña e internacional en busca de conexiones entre los principios bioéticos y la atención médica brindada a los adultos mayores al final de sus vidas. Método: entre octubre y noviembre de 2019, esta revisión integradora buscó en las bases de datos Medline (Pubmed), Lilacs y Scopus utilizando los descriptores: "Cuidados paliativos", "Envejecido" y "Bioética" para el período 2014-2019. Resultados: las siguientes categorías surgieron de los artículos seleccionados: terapéutico realizado con respecto a la atención al final de la vida; toma de decisiones sobre la atención al final de la vida; y desafíos en la atención al final de la vida. Conclusión: es de particular importancia que los profesionales de la salud mantengan su compromiso con los adultos mayores y sus familias, consideren sus subjetividades y preferencias, y los empoderen y equipen para que la atención se guíe por principios bioéticos para asegurar un proceso digno de muerte y muerte.

Implementation of a Perinatal Hospice Program.

BACKGROUND: In 2017, the Nebraska Unicameral passed legislative bill 506, which required physicians to inform patients carrying fetuses diagnosed with a life-limiting anomaly of the option to enroll in a comprehensive perinatal hospice program. The bill also required the Department of Health & Human Services to provide information about statewide hospice programs. Families enrolled in hospice programs are better prepared for the birth and death of their child. This large academic medical center was listed on the registry but did not have a formal perinatal hospice program. PURPOSE: Implementation of a comprehensive perinatal hospice program. METHODS: The program was designed and implemented, beginning with the formation of an interdisciplinary team. Guidelines were developed for program referral, care conferences, team communication, and family follow-up. The team was educated. Electronic record documentation and order set were implemented. A data collection process was developed to track referrals and critical data points. RESULTS: The perinatal hospice program has been accepting referrals but has not had any qualifying referrals. IMPLICATIONS FOR PRACTICE: The development of an evidence-based guideline for referral that can improve referral consistency. While trisomy 13 and 18 diagnosis was historically considered life-limiting, these families now have the option of full intervention and transfer for specialists. IMPLICATIONS FOR RESEARCH: Future research will include collecting data from patients who could have benefited from hospice, including infants who were born 20 to 22 weeks, or for maternal reasons. Future research will evaluate the experience after bereavement, the hospice team's experience, and the effectiveness of the referral process.

Gestão do cuidado na transição de mulheres com câncer mamário para o cuidado paliativo exclusivo / Care management in the transition of women with breast cancer to exclusive palliative care

O câncer de mama representa um problema de saúde pública no Brasil e no mundo, em virtude de sua crescente incidência, morbimortalidade e elevados custos dos tratamentos. Muitas mulheres são diagnosticadas em estadios avançados da doença, com chances reduzidas de cura e, neste contexto, o cuidado paliativo cresce em seu significado. Entretanto, na prática, o cuidado paliativo tem sido indicado somente diante da impossibilidade de tratamento modificador da doença e o cuidado paliativo exclusivo sendo iniciado de forma tardia, inviabilizando um trabalho eficaz para proporcionar qualidade de vida. Objetivou-se analisar a percepção dos profissionais da equipe de saúde acerca do processo de transição para o cuidado paliativo exclusivo de mulheres com câncer de mama avançado, e discutir este processo de transição no âmbito da gestão do cuidado em saúde a partir da percepção dos profissionais. Estudo descritivo, qualitativo, realizado com 28 profissionais da equipe de saúde atuantes na unidade especializada em câncer de mama de um instituto federal, localizado no Rio de Janeiro, Brasil. Os dados foram coletados entre dezembro de 2018 e maio de 2019, por entrevista semiestruturada, e seguiu-se a análise de conteúdo na modalidade temática. Os profissionais caracterizaram o processo de transição como tardio, abrupto, acompanhado de comunicação insatisfatória, conhecimento deficitário, conferindo à prática um cuidado descontinuado. Foi identificada a falta de consenso sobre o momento de interromper a terapêutica para a cura e controle da doença, justificada pela disponibilidade de muitas linhas de quimioterapia para câncer de mama. O déficit de recursos humanos e a sobrecarga de trabalho também afetaram a percepção sobre o modelo de transição. As decisões terapêuticas, incluindo a suspensão de tratamentos e definição de cuidado paliativo exclusivo, foram consideradas centralizadas na equipe médica, desconsiderando a autonomia da mulher e julgamentos clínicos das demais profissionais. A percepção sobre o avanço da doença e a deterioração clínica da mulher sugeriram que o tratamento ativo para controle da doença não tem sido efetivo, e a aceitação da doença avançada, tanto pelos profissionais quanto pela mulher e familiares, encontra muitas barreiras que interferem na definição prognóstica, consequentemente, no planejamento assistencial. A necessidade de controle da doença esteve relacionada ao politratamento e ao sofrimento. O modelo assistencial atual não foi reconhecido como ideal, apontando que o cuidado paliativo precisa ser transversal, e o processo de transição de cuidados deve acontecer ambulatorialmente, de forma gradativa, envolvendo a mulher e a equipe na tomada de decisão. A transição tardia pode gerar internações frequentes, aumentar o risco de infecção, diminuir a rotatividade dos leitos, e modificar o perfil clínico da unidade. O processo de transição no âmbito da gestão do cuidado neste contexto é complexo; deve considerar as múltiplas dimensões do cuidado em saúde, e o desenvolvimento de outros estudos para operacionalizar a integração precoce do cuidado paliativo, consolidar diretrizes clínicas para protocolos de tratamentos paliativos e fortalecer o trabalho interdisciplinar.

Breast cancer represents a public health problem in Brazil and worldwide, due to its increasing incidence, morbidity and mortality and high treatment costs. Many women are diagnosed in advanced stages of the disease, with reduced chances of cure and, in this context, palliative care grows in meaning. However, in practice, palliative care has been indicated only in view of the impossibility of modifying treatment of the disease and exclusive palliative care being started late, preventing an effective work to provide quality of life. The objective was to analyze the perception of the health team professionals about the transition process for the exclusive palliative care of women with advanced breast cancer, and to discuss this transition process within the scope of health care management from the perception of professionals. Descriptive, qualitative study, carried out with 28 professionals from the health team working at the specialized breast cancer unit of a federal institute, located in Rio de Janeiro, Brazil. Data were collected between December 2018 and May 2019, through semi- structured interviews, and thematic content analysis followed. The professionals characterized the transition process as late, abrupt, accompanied by unsatisfactory communication, deficient knowledge, giving the practice a discontinued care. The lack of consensus on the moment to interrupt therapy for the cure and control of the disease was identified, justified by the availability of many chemotherapy lines for breast cancer. The deficit in human resources and work overload also affected the perception of the transition model. Therapeutic decisions, including suspension of treatments and definition of exclusive palliative care, were considered centralized in the physician, disregarding the autonomy of women and clinical judgments of other professionals. The perception about the progress of the disease and the clinical deterioration of the woman suggested that the active treatment to control the disease has not been effective, and the acceptance of the advanced disease, both by professionals and by the woman and family members, finds many barriers that interfere in the definition prognosis, consequently, in care planning. The need to control the disease was related to multiple treatments and suffering. The current care model was not recognized as ideal, pointing out that palliative care needs to be transversal, and the care transition process should happen on an outpatient basis, gradually, involving the woman and the team in decision making. The late transition can generate frequent hospitalizations, increase the risk of infection, decrease bed turnover, and modify the clinical profile of the unit. The transition process in this context is complex; it must consider the multiple dimensions of health care, and the development of other studies to operationalize the early integration of palliative care, consolidate clinical guidelines for palliative treatment and strengthen interdisciplinary work.

Brasil y en todo el mundo, debido a su creciente incidencia, morbilidad y mortalidad y los altos costos del tratamiento. Muchas mujeres son diagnosticadas en etapas avanzadas de la enfermedad, con posibilidades reducidas de curación y, en este contexto, los cuidados paliativos aumentan de significado. Sin embargo, en la práctica, los cuidados paliativos se han indicado solo en vista de la imposibilidad de tratamiento para modificar la enfermedad y el cuidado paliativo exclusivo que se inicia tarde, lo que impide un trabajo efectivo para proporcionar calidad de vida. El objetivo fue analizar la percepción de los profesionales del equipo de salud sobre el proceso de transición para los cuidados paliativos exclusivos de mujeres con cáncer de mama avanzado, y analizar este proceso de transición dentro del alcance de la gestión de la atención de salud basada en la percepción de los profesionales. Estudio descriptivo, cualitativo, realizado con 28 profesionales del equipo de salud que trabajan en la unidad especializada de cáncer de mama de un instituto federal, ubicado en Río de Janeiro, Brasil. Los datos se recopilaron entre diciembre de 2018 y mayo de 2019, a través de entrevistas semiestructuradas, y se realizó un análisis de contenido temático. Los profesionales caracterizaron el proceso de transición como tardío, abrupto, acompañado de una comunicación insatisfactoria, conocimiento deficiente, dando a la práctica un cuidado descontinuado. Se identificó la falta de consenso sobre el momento de interrumpir la terapia para la cura y el control de la enfermedad, justificada por la disponibilidad de muchas líneas de quimioterapia para el cáncer de mama. El déficit en recursos humanos y sobrecarga de trabajo también afectó la percepción del modelo de transición. Las decisiones terapéuticas, incluida la suspensión de tratamientos y la definición de cuidados paliativos exclusivos, se consideraron centralizadas en el equipo médico, sin tener en cuenta la autonomía de las mujeres y los juicios clínicos de otros profesionales. La percepción sobre el progreso de la enfermedad y el deterioro clínico de la mujer sugiere que el tratamiento activo para controlar la enfermedad no ha sido efectivo, y la aceptación de la enfermedad avanzada, tanto por profesionales como por la mujer y los miembros de la familia, encuentra muchas barreras que interfieren en la definición. pronóstico, en consecuencia, en la planificación de la atención. La necesidad de controlar la enfermedad estaba relacionada con múltiples tratamientos y sufrimientos. El modelo de atención actual no se reconoció como ideal, señalando que los cuidados paliativos deben ser transversales, y el proceso de transición de la atención debe realizarse de forma ambulatoria, gradualmente, involucrando a la mujer y al equipo en la toma de decisiones. La transición tardía puede generar hospitalizaciones frecuentes, aumentar el riesgo de infección, disminuir la renovación de la cama y modificar el perfil clínico de la unidad. El proceso de transición en el contexto de la gestión de la atención en este contexto es complejo; Debe considerar las múltiples dimensiones de la atención médica y el desarrollo de otros estudios para poner en práctica la integración temprana de los cuidados paliativos, consolidar las guías clínicas para los protocolos de tratamiento paliativo y fortalecer el trabajo interdisciplinario.

REALIZATION OF THE HUMAN RIGHT TO PALLIATIVE CARE IN UKRAINE: PROBLEMS AND LEGAL ISSUES (REVIEW).

The aim of the study is to analyze individual legal problems of the implementation of the human right to palliative care. To achieve this goal, statistical data on the number of palliative patients, their access to medical services were analyzed. The absence of reasons for limiting the patient's right to receive palliative care, as such a right is a fundamental human right, is substantiated. An analysis of the understanding of the legal construction of "palliative care" in the scientific literature, national and international legal documents was carried out. It was revealed that the terms "hospice care", "end-of-life-care", "respite care" are components of a precise definition - "palliative care". Two groups of subjects that ensure the human right to this type of medical care are identified, their powers are indicated. In the course of the research it was established that palliative patients, more often than other patients, need medical care, including children. This category of patients faces the following problems: incomplete providing of high-quality free medical palliative care; insufficient number of palliative and hospice departments for such patients; palliative care does not meet international standards (logistical support for palliative departments, there are no specialists of a multidisciplinary team); there is no special training for medical personnel working with incurable patients; painkillers (non-narcotic and narcotic) drugs for relieving pain syndrome of such patients are not provided in full volume; there is no cooperation of state authorities in the field of palliative care with public and charitable organizations; palliative patients do not have access to free legal services (pensions, inheritance).

Cuidados paliativos al final de la vida en pacientes con demencia terminal / End-of-life palliative care in patients with terminal dementia

Resumen La demencia es condición que típicamente involucra un deterioro gradual y progresivo de la cognición, el comportamiento y el funcionamiento de un individuo, hasta alcanzar la muerte. La medicina paliativa asiste a pacientes que enfrentan procesos degenerativos progresivos como este y les provee insumos para mejorar su calidad de vida, aliviar su dolor y apoyar a quienes les asisten; en una forma interdisciplinaria e integral hasta el final de su vida. Este trabajo pretende exponer brevemente, mediante una revisión de literatura vigente, el conocimiento y teorías actuales sobre demencia como una condición terminal que requiere atención paliativa; desde una perspectiva integral, enfocándose en el manejo y los objetivos de cuidado del paciente con esta condición, que reúna tanto la visión médica como la del paciente, su red de apoyo y su entorno. Se describe la demencia como una condición terminal que requiere de atención paliativa desde el momento de su diagnóstico, las necesidades propias del paciente con esta condición y las implicaciones de su atención, requiriendo un abordaje integral y un planteamiento de objetivos claros, humanizados y centrados en el paciente; que satisfacen sus necesidades, consideran y respetan su individualidad y contemplan aspectos como la voluntad adelantada.

Abstract Dementia is a condition that typically involves a gradual and progressive deterioration of the cognition, behavior and functioning of an individual, to death. Palliative medicine assists patients who face progressive degenerative processes like this one and provides them with supplies to improve their quality of life, relieve their pain and support those who assist them; in an interdisciplinary and integral way until the end of his life. This work aims to briefly expose, through a review of current literature, knowledge and current theories about dementia as a terminal condition that requires palliative care; from a holistic perspective, focusing on the management and objectives of patient care with this condition, which brings together both the medical and the patient's vision, their support network and their environment. Dementia is described as a terminal condition that requires palliative care from the moment of diagnosis, the specific needs of the patient with this condition and the implications of their care, requiring a comprehensive approach and a clear, humanized and patient-centered approach to goals of care; that meet their needs, consider and respect their individuality and contemplate aspects such as their advanced wills.

Ethically providing Routine HIV testing services to bereaved populations.

BACKGROUND:: The delivery of public health policies may be in conflict with individualism. OBJECTIVES:: To propose measures to ethically provide routine HIV testing services to persons visiting a funeral home. RESEARCH DESIGN:: A document analysis of study documents and presentations made to an institutional review board. PARTICIPANTS AND RESEARCH CONTEXT:: Institutional review board members (both lay and professionals) and Study investigators attending an `open session' where study investigators were invited to elaborate on some study procedures. ETHICAL CONSIDERATIONS:: Identities of all parties were anonymized. FINDINGS:: Opt-out approaches to HIV testing, grief counseling, relational ethics, and a modular consenting process were proposed to safeguard clients' autonomy. The golden-rule approach and protective empowering were suggested to protect clientele beneficence. DISCUSSION AND CONCLUSION:: It is possible to ethically provide universal HIV testing and counseling services among grieving populations in this setting; elsewhere, this should be contextualized.

Princípios e valores implicados na prática da sedação paliativa e a eutanásia / The principles and values implied in the practice of palliative sedation and the euthanasia / Principios y valores implicados en la práctica de la sedación paliativa y la eutanasia

Este estudo buscou compreender os sentidos atribuídos, pelos profissionais de saúde, à prática da sedação paliativa no processo de morrer, as relações desta prática com a eutanásia, bem como os valores considerados importantes e que subsidiam a equipe de cuidados paliativos na tomada de decisão. Trata-se de uma pesquisa exploratória e descritiva de abordagem qualitativa, baseada na hermenêutica dialética. Os resultados indicam que os sentidos atribuídos pelos profissionais entrevistados acompanham o desenvolvimento científico, os quais têm buscado esclarecer os fatos clínicos de cada processo de tomada de decisão e os valores implicados, seguindo a evolução da reflexão ética sobre a prática da sedação paliativa e eutanásia. No âmbito da reflexão ética, os princípios não são vistos como absolutos, pois, ao considerarem os valores, os profissionais analisam as circunstâncias e as consequências que permeiam as decisões.(AU)

The aim of the present study was to investigate the meaning attributed by healthcare professionals to the practice of palliative sedation in the dying process, the relationship of this practice with euthanasia, and the values considered important and that ground decision making by palliative care teams. This is an exploratory and descriptive qualitative study, based on dialectical hermeneutics. The results show that the meanings attributed by the interviewed professionals were in line with scientific development. They reported that they sought to clarify the clinical facts involved in each decision-making process and the implicated values according to the evolution of ethical reflections regarding the practice of palliative sedation and euthanasia. Within the scope of ethical reflection, principles are not considered absolute, because, when considering as values, professionals analyzed the specific circumstances and the consequences involving their decisions.(AU)

El objetivo de este estudio fue entender los sentidos atribuidos por los profesionales de salud a la práctica de la sedación paliativa en el proceso de muerte, las relaciones de esta práctica con la eutanasia, así como los valores considerados importante y que sirven de subsidio al equipo de cuidados paliativos en la toma de decisión. Se trata de una encuesta exploratoria y descriptiva de abordaje cualitativo, con base en la hermenéutica dialéctica. Los resultados indican que los sentidos atribuidos por los profesionales entrevistados acompañan el desarrollo científico, los cuales han buscado aclarar los hechos clínicos de cada proceso de toma de decisión y los valores implicados, siguiendo la evolución de la reflexión ética sobre la práctica de la sedación paliativa y la eutanasia. En el ámbito de la reflexión ética, los principios no son vistos como absolutos, puesto que, al considerar los valores, los profesionales analizan las circunstancias y las consecuencias presentes en las decisiones.(AU)

Voluntary Stopping Eating and Drinking.

Voluntary stopping of eating and drinking (VSED) is a deliberate, self-initiated attempt to hasten death in the setting of suffering refractory to optimal palliative interventions or prolonged dying that a person finds intolerable. Individuals who consider VSED tend to be older, have a serious but not always imminently terminal illness, place a high value on independence, and have significant illness burden. VSED can theoretically be performed independent of clinician assistance and therefore avoids many of the ethical and legal concerns associated with physician-assisted dying or other palliative measures of last resort, However, VSED is an intense process fraught with new sources of somatic and emotional suffering for individuals and their caregivers, so VSED is best supervised by an experienced, well-informed clinician who can provide appropriate pre-intervention assessment, anticipatory guidance, medical treatment of symptoms, and emotional support. Before initiation of VSED, clinicians should carefully screen for inadequately treated psychiatric conditions, unaddressed symptoms, existential suffering, and evidence of coercion-consultation from palliative medicine, psychiatry, or ethics is often indicated. The most common symptoms encountered after starting VSED are extreme thirst, hunger, dysuria, progressive disability, delirium, and somnolence. Although physiologically similar to cessation of artificial nutrition and hydration, the onset and management of symptoms is often different. We propose an organized system for evaluating individual appropriateness for VSED, anticipatory guidance, and management of symptoms associated with VSED. A brief review of ethical and legal considerations follows.

Physician-Assisted Suicide and Midwest Social Workers: Where Do They Stand?

Physician-assisted suicide (PAS) is explicitly legal in five states and by court decision in one. Legislative bills have been introduced in other states including Minnesota, Iowa, and Wisconsin. This quantitative study was designed to understand Midwest, hospice and palliative care at end-of-life social workers' attitudes toward PAS, preferred terminology, perception of preparedness for the implementation, and awareness of PAS legislation in their state. Sixty-two social workers from Minnesota, Iowa, and Wisconsin completed an anonymous online survey. The results indicated that over one-half of the participants supported PAS legislation and is consistent with previous research on social workers across the country. While there was a range of perceived preparedness for implementation, a majority felt moderately to very prepared. Professional and personal values as well as professional experience influenced their perceived preparedness. Few social workers had accurate awareness of PAS legislation in their state or had attended workshops/events for further education or as a policy advocate. To practice competently and advocate at all levels of practice, hospice and palliative care at end-of-life social workers' need to understand their own attitudes and values toward PAS and pursue additional education around this ethical issue.

Artificial Hydration at the End of Life.

Initiation or continuation of artificial hydration (AH) at the end of life requires unique considerations. A combination of ethical precedents and medical literature may provide clinical guidance on how to use AH at the end of life. The purpose of this review is to describe the ethical framework for and review current literature relating to the indications, benefits, and risks of AH at the end of life. Provider, patient, and family perspectives will also be discussed.

Un dilema ético actual: ¿Ensañamiento terapéutico o adecuación del esfuerzo terapéutico? / A current ethical dilemma: therapeutic savageness or adequate therapeutic effort?

La medicina está estrechamente relacionada con el uso cada vez más de modernas tecnologías, muy sofisticadas y poderosas, que ofrecen posibilidades sin precedentes, en cuanto a la prolongación de la vida. En consecuencia, surgen y abundan nuevos conflictos de carácter ético. La práctica de la adecuación del esfuerzo terapéutico continúa siendo un tema de reflexión médica vigente, demandado no solo por la comunidad científica, sino también por toda la sociedad. El trabajo tiene como objetivo fundamental realizar una breve reflexión teórica, desde un análisis ético acerca del desarrollo alcanzado por la ciencia y la tecnología a partir de la Revolución Científico Técnica y de su influencia en el campo de la medicina, específicamente en las unidades de atención al paciente grave, ante los problemas éticos que ocasiona este avance científico - tecnológico y el poder que se le otorga al equipo de salud que labora en este tipo de unidades para decidir entre la vida o la muerte, entre el ensañamiento terapéutico y la adecuación del esfuerzo terapéutico (AU).

La medicina está estrechamente relacionada con el uso cada vez más de modernas tecnologías, muy sofisticadas y poderosas, que ofrecen posibilidades sin precedentes, en cuanto a la prolongación de la vida. En consecuencia, surgen y abundan nuevos conflictos de carácter ético. La práctica de la adecuación del esfuerzo terapéutico continúa siendo un tema de reflexión médica vigente, demandado no solo por la comunidad científica, sino también por toda la sociedad. El trabajo tiene como objetivo fundamental realizar una breve reflexión teórica, desde un análisis ético acerca del desarrollo alcanzado por la ciencia y la tecnología a partir de la Revolución Científico Técnica y de su influencia en el campo de la medicina, específicamente en las unidades de atención al paciente grave, ante los problemas éticos que ocasiona este avance científico - tecnológico y el poder que se le otorga al equipo de salud que labora en este tipo de unidades para decidir entre la vida o la muerte, entre el ensañamiento terapéutico y la adecuación del esfuerzo terapéutico (AU).

Continuous Palliative Sedation for Existential Distress? A Survey of Canadian Palliative Care Physicians' Views.

BACKGROUND: Palliative sedation can be used for refractory symptoms during end-of-life care. However, continuous palliative sedation (CPS) for existential distress remains controversial due to difficulty determining when this distress is refractory. OBJECTIVES: The aim was to determine the opinions and practices of Canadian palliative care physicians regarding CPS for existential distress. METHODS: A survey focusing on experience and views regarding CPS for existential distress was sent to 322 members of the Canadian Society of Palliative Care Physicians. RESULTS: Eighty-one surveys returned (accessible target, 314), resulting in a response rate of 26%. One third (31%) of the respondents reported providing CPS for existential distress. On a 5-point Likert-type scale, 40% of participants disagreed, while 43% agreed that CPS could be used for existential distress alone. CONCLUSION: Differing opinions exist regarding this complex and potentially controversial issue, necessitating the education of health-care professionals and increased awareness within the general public.

Life-sustaining treatment and palliative care in patients with liver cirrhosis - legal, ethical, and practical issues.

With the enactment of the 'Act on Decisions on Life-Sustaining Treatment for Patients in Hospice and Palliative Care or at the End of Life' (Act No. 14013) in Korea, there is growing concern about the practicality of this law. In this review, we discuss definitions, ethics, and practical issues related to this law.

Addressing Palliative Care Clinician Burnout in Organizations: A Workforce Necessity, an Ethical Imperative.

Clinician burnout reduces the capacity for providers and health systems to deliver timely, high quality, patient-centered care and increases the risk that clinicians will leave practice. This is especially problematic in hospice and palliative care: patients are often frail, elderly, vulnerable, and complex; access to care is often outstripped by need; and demand for clinical experts will increase as palliative care further integrates into usual care. Efforts to mitigate and prevent burnout currently focus on individual clinicians. However, analysis of the problem of burnout should be expanded to include both individual- and systems-level factors as well as solutions; comprehensive interventions must address both. As a society, we hold organizations responsible for acting ethically, especially when it relates to deployment and protection of valuable and constrained resources. We should similarly hold organizations responsible for being ethical stewards of the resource of highly trained and talented clinicians through comprehensive programs to address burnout.

[Dying and death in societal transformation]. / Sterben und Tod im gesellschaftlichen Wandel.

Dying and death in modern societies are subject to profound social, professional and cultural-religious changes. Secularization and a stronger differentiation of societies have led to a change in the way humans handle the dying process. Normatively ritualized collective behaviour has been replaced by an individual, subjectivized approach. In late modern societies there are many different views of what "successful" or "good" dying means.In the article this change is described by the following seven theses: 1. We live longer and we die longer. 2. We no longer die suddenly and unexpectedly but slowly and foreseeably. 3. Even though our biological life on earth has become longer, our life has been shortened by the loss of eternity. 4. We no longer die on the stage of ritualized relationships with our family and neighbours but behind the curtains of organizations. 5. We live and die in a society of organizations and have to get organized for the final phase of our life. 6. Living and dying are no large, state-owned enterprises but small, private enterprises. 7. The hospice movement as well as palliative medicine have created public awareness, made dying a matter of discussion and offered a new set of options.In late modernism end-of-life care requires new approaches based on individual and shared responsibility as well as cooperation between professional institutions and community-based voluntary care.A change towards community care is visible. Thus "dying" is a topic in the discussion about the future of public health and societal solidarity.

[Volunteering in end-of-life care : Challenges, problems and perspectives]. / Bürgerbewegte Ehrenamtlichkeit in der Betreuung am Lebensende : Herausforderungen, Probleme, Perspektiven.

Volunteering in the hospice movement has had a profound impact on generating awareness of hospice work and palliative care in the context of supporting dying persons and their relatives as well as on integrating respective services in the existing health care system. This paper focuses on two specific questions: First, it asks how society is changing with respect to dealing with dying and death, and more precisely with dying persons, which is recognizable by the integration of hospice work and palliative care in the healthcare system and related to the relevance of volunteering in the sense of a citizens' movement. Second, this paper asks what the specific roles of volunteers are as well as the possibilities and limits of voluntary practice in end-of-life care and accompaniment. To answer these questions, the pivotal objectives of the hospice movement - the transformation of the social awareness regarding dying and death, as well as the reorganization of "institutions of dying" - will first be outlined by reference to the concept of "good dying", a specific hospice attitude together with hospice culture and palliative competence. In a second step, the relevance of volunteering and the specific role of volunteers in the actual practice of hospice work and palliative care will be outlined alongside current indicators and recognizable alteration tendencies, before concluding with a discussion of the perspectives of hospices as a citizens' movement.