Autonomia em demência avançada e estados vegetativos permanentes na iminência de morte / Autonomía en demencia avanzada y estados vegetativos permanentes al borde de la muerte / Autonomy in advanced dementia and permanent vegetative states in imminent death

RESUMO. A autonomia privada existencial, como expressão da dignidade da pessoa humana, representa para o indivíduo a possibilidade de agir em conformidade com valores e significados eleitos essenciais na elaboração do seu projeto de vida. Neste estudo, seus autores, dois terapeutas ocupacionais, dois advogados e uma psicóloga, somam saberes e dialogam com intuito de demarcar a relevância da autonomia privada existencial nas condições de demência avançada, nos estados vegetativos permanentes e na iminência de morte. Na tarefa a que se propõem, os autores ponderam sobre suas experimentações e interlocuções enquanto profissionais de formação acadêmica diversificada, inclinados a ofertar espaços para comunicar vida e acolher dores. São apresentadas e discutidas as bases jurídicas da autonomia privada, assim como os pressupostos da Logoterapia de Viktor Frankl em defesa da liberdade de vontade e da dignidade no final da vida.

RESUMEN La autonomía existencial privada, como expresión de la dignidad de la persona humana, representa para el individuo la posibilidad de actuar de acuerdo con valores y significados elegidos esenciales en la elaboración de su proyecto de vida. En este estudio, sus autores, dos terapeutas ocupacionales, dos abogados y un psicólogo suman conocimiento y diálogo con el fin de demarcar la relevancia de la autonomía privada existencial en condiciones de demencia avanzada, en estados vegetativos permanentes y muerte inminente. En la tarea que proponen, los autores reflexionan sobre sus vivencias e interlocuciones como profesionales con una formación académica diversificada, inclinados a ofrecer espacios para comunicar la vida y acoger el dolor. Se presentan y discuten las bases legales de la autonomía privada, así como los supuestos de la Logoterapia de Viktor Frankl en defensa de la libertad de voluntad y dignidad al final de la vida.

ABSTRACT. Existential private autonomy, as an expression of the dignity of the human person, represents for the individual the possibility of acting in accordance with essential values and meanings for elaboration of their life project. The authors of this study, two occupational therapists, two lawyers and a psychologist gather their knowledge and dialogue to demarcate the relevance of existential private autonomy in conditions of advanced dementia, in permanent vegetative states and imminent death. In the task proposed, the authors pondered over their experiences and dialogues as professionals with a diversified academic background, inclined to provide spaces to communicate life and welcome pain. The legal bases of private autonomy are presented and discussed, as well as the assumptions of Viktor Frankl's Logotherapy in defense of freedom of will and dignity at the end of life.

Suspensión de soporte vital en el estado vegetativo permanente y muerte digna / Withdrawal of life support in the permanent vegetative state, and a dignified death

Es frecuente que familiares directos soliciten la suspensión de soporte vital, en particular de la hidratación y nutrición asistidas, en pacientes con estado vegetativo o de mínima conciencia permanente, y que recurran a la justicia en caso de desacuerdo. Dos casos recientes de suspensión, uno del exterior y otro argentino, autorizados por los tribunales respectivos, han sido motivo de controversia. Si bien puede parecer inhumano dejar de alimentar e hidratar, continuar haciéndolo solo prolonga un estado de supervivencia biológica irreversible. Las familias tienden a aceptar la suspensión si el paciente se mantiene sin cambios. Sin embargo, persiste preocupación por el posible sufrimiento desde la suspensión hasta la muerte, aunque el mismo es poco concebible en ausencia de función cortical y de conciencia. Si bien médicos y profanos consideran ético suspender el soporte vital, una cierta proporción de médicos considera que en el estado vegetativo, o más aún, en mínima conciencia, efectivamente se experimenta hambre, sed y dolor. En países como el Reino Unido, se han propuesto criterios de suspensión de soporte vital, y esquemas de tratamiento para el malestar durante el período de suspensión, aunque su beneficio efectivo es controvertido. La Argentina cuenta con recomendaciones de dos sociedades científicas, pero no con criterios reglamentados. Pero tanto la Ley 26.742 de "muerte digna" como el Código Civil consienten la suspensión del soporte vital en el estado vegetativo o de mínima conciencia, si se acompaña de medidas de alivio de los síntomas clínicos que puedan significar sufrimiento.

Patient relatives often request withdrawal of life support, especially artificial nutrition and hydration, in cases of permanent vegetative or minimally conscious state, and resort to court in case of disagreement. Two recent cases of withdrawal authorized by the courts concerned, one from abroad and one from Argentina, have been controversial. Although it may appear inhuman to stop feeding and hydrating such patients, to continue it only prolongs a state of irreversible biological subsistence. Families tend to increasingly accept withdrawal if the patient status remains unchanged. However, concern persists regarding the suffering that patients may undergo from onset of withdrawal till death, even though such suffering is little conceivable in the absence of cortical function and conscience content. While doctors and the layman consider ethical to withdraw life support, a nonnegligible proportion of doctors consider that vegetative state patients, even more minimally conscious state patients, do experience hunger, thirst and pain. In some countries, like the United Kingdom, strict withdrawal criteria were proposed, together with pharmacological treatment schemes for the distress arising during the withdrawal period, even though its benefit is controversial. In Argentina, two scientific societies have publicly advocated withdrawal, but not issued formal guidelines. In any case, both "dignified death" Law 26.742 and the Civil Code consent withdrawal of life support, if accompanied by appropriate relief of clinical symptoms indicating suffering.

Trastornos prolongados de conciencia postinjuria cerebral aguda / Prolonged disorders of consciousness after an acute brain injury

Only a fraction of patients in coma secondary to a primary acute brain injury develop a vegetative state (VS). At least 20% of patients show late transitions to a minimally conscious states (MCS). They are particularly common in young adults with traumatic brain injury. The main problems faced by clinicians are the diagnostic accuracy of VS and MCS as well as the usefulness of sophisticated paraclinical investigations. Specific therapies are of limited effectiveness. This population is vulnerable to misdiagnosis and limited access to medical care and rehabilitation, thus generating ethical problems.

Court decisions and legal considerations about the withdrawal of the life-prolonging medical care

The Supreme Court decision made on May 21, 2009 about the withdrawal of futile life-prolonging medical care from a persistently vegetative patient provided a legal basis for patients to consent to death with dignity, and also spurred a lively debate in Korea. The legal grounding of this decision was based on the principles of human dignity, worth, and the right to pursue happiness articulated in the Article 10 of the Constitution. The Death with Dignity Act was legislated to regulate decisions about life-prolonging medical care on February 3, 2016, after extensive debate and a focus on consensus that led to two revisions. However, the issue has not been completely resolved. First, the definition of the process of dying is unclear, because the points that determine whether a patient is dying are different from a simple assessment of whether an artificial ventilator should be attached or detached. Second, the purpose of this law is the protection of human dignity, worth, and the right to pursue happiness. However, nutrition, fluids, and oxygen must continue to be supplied, even after cessation of life-prolonging medical care. Is providing a continuous supply of nutrition, fluids, and oxygen a reasonable way to satisfy the goals of Article 10 of the Constitution? Third, if the withdrawal of life-prolonging medical care is possible based on the family's agreement without the patient's input, what is the legal value of advance directives? In conclusion, it may be necessary to partially revise the law regulating decisions on the withdrawal of life-prolonging medical care through further debate.

Clinical and neuroimaging determinants of minimally conscious and persistent vegetative states after acute stroke

BACKGROUND: Patients with persistent vegetative state (PVS) show no evidence of awareness of self or their environment, and those with minimally conscious state (MCS) have severely impaired consciousness with minimal but definite behavioral evidence of self or environmental awareness after stroke. Neuroimaging and clinical characteristics separating these two close consciousness states after stroke were insufficiently studied. METHODS: We conducted a hospital-based cohort study of all patients with stroke (2011 to 2017) who underwent 3T magnetic resonance imaging and consciousness assessment after 3 months of inclusion. Univariate and multivariate regression analyses were used to estimate the relative risk of neuroimaging markers for differentiation of PVS and MCS. RESULTS: Of 3,600 eligible subjects, 323 patients (0.09%) had PVS and 93 (0.02%) had MCS (mean age, 62.25±13.4 years). Higher stroke volume was strongly associated with PVS compared to MCS (odds ratio [OR], 0.99; 95% confidence interval [CI], 0.98 to 1.00; P=0.001). On univariate analysis, cingulate gyrus (OR, 2.7; 95% CI, 1.62 to 4.36; P=0.001) and corpus callosum (OR, 2.1; 95% CI, 1.28 to 3.44; P=0.003) involvement was significantly associated with PVS. However, on multivariate analysis, only cingulate gyrus involvement was independently associated with PVS (OR, 2.2; 95% CI, 1.33 to 3.72; P=0.002). CONCLUSION: Our results indicate that PVS and MCS are different consciousness states according to clinical and neuroimaging findings. To predict outcome, cognitive performance of these patients should be well questioned after stroke.

Brain Network Studies in Chronic Disorders of Consciousness: Advances and Perspectives / 神经科学通报·英文版

Neuroimaging has opened new opportunities to study the neural correlates of consciousness, and provided additional information concerning diagnosis, prognosis, and therapeutic interventions in patients with disorders of consciousness. Here, we aim to review neuroimaging studies in chronic disorders of consciousness from the viewpoint of the brain network, focusing on positron emission tomography, functional MRI, functional near-infrared spectroscopy, electrophysiology, and diffusion MRI. To accelerate basic research on disorders of consciousness and provide a panoramic view of unconsciousness, we propose that it is urgent to integrate different techniques at various spatiotemporal scales, and to merge fragmented findings into a uniform "Brainnetome" (Brain-net-ome) research framework.

Xingnao Kaiqiao acupuncture combined with Angong Niuhuang Wan for a patient under persistent vegetative state: a case report / 医学前沿

Persistent vegetative state (PVS) is a clinical condition wherein the cerebral cortex loses its function although brain stem function remains relatively intact. It has high mortality and disability rates. Although treatment for PVS is extensively studied in developed countries, little breakthrough has been made. In China, many PVS patients who were treated with traditional Chinese medicine (TCM) and acupuncture therapy were reported to have regained consciousness. In our department, we have been investigating TCM diagnosis and treatment methods for PVS for many years and have summarized a set of curative programs. Our patient is a male and 5 years and 3 months of age. He had traumatic brain injury and had been unconscious for three months on admission. Considering his condition, we adopted Xingnao Kaiqiao acupuncture, oral Angong Niuhuang Wan, and Xingnaojing intravenous drip. After the 50-day treatment, his health significantly improved and is nearly similar to that of a healthy child, indicating that the treatment is effective for PVS. Therefore, we decided to report the case and treatment methods.

Comprehensive Proteomic Profiling of Patients' Tears Identifies Potential Biomarkers for the Traumatic Vegetative State / 神经科学通报·英文版

The vegetative state is a complex condition with unclear mechanisms and limited diagnostic, prognostic, and therapeutic methods. In this study, we aimed to explore the proteomic profile of tears from patients in a traumatic vegetative state and identify potential diagnostic markers using tears-a body fluid that can be collected non-invasively. Using iTRAQ quantitative proteomic technology, in the discovery phase, tear samples collected from 16 patients in a traumatic vegetative state and 16 normal individuals were analyzed. Among 1080 identified tear proteins, 57 were upregulated and 15 were downregulated in the patients compared to the controls. Bioinformatics analysis revealed that the differentially-expressed proteins were mainly involved in the wound response and immune response signaling pathways. Furthermore, we verified the levels of 7 differentially-expressed proteins in tears from 50 traumatic vegetative state patients and 50 normal controls (including the samples used in the discovery phase) using ELISA. The results showed that this 7-protein panel had a high discrimination ability for traumatic vegetative state (area under the curve = 0.999). In summary, the altered tear proteomic profile identified in this study provides a basis for potential tear protein markers for diagnosis and prognosis of the traumatic vegetative state and also provides novel insights into the mechanisms of traumatic vegetative state.

Validation of Korean Version of Coma Recovery Scale-Revised (K-CRSR)

OBJECTIVE: To determine the validity and reliability of the Korean version of the Coma Recovery Scale-Revised (K-CRSR) for evaluation of patients with a severe brain lesion. METHODS: With permission from Giacino, the developer of the Coma Recovery Scale Revised (CRSR), the scale was translated into Korean and back-translated into English by a Korean physiatrist highly proficient in English, and then verified by the original developer. Adult patients with a severe brain lesion following traumatic brain injury, stroke, or hypoxic brain injury were examined. To assess the inter-rater reliability, all patients were tested with K-CRSR by two physiatrists individually. To determine intra-rater reliability, the same test was re-administered by the same physiatrists after three days. RESULTS: Inter-rater reliability (k=0.929, p < 0.01) and intra-rater reliability (k=0.938, p < 0.01) were both high for total K-CRSR scores. Inter- and intra-rater agreement rates were very high (94.9% and 97.4%, respectively). The total K-CRSR score was significantly correlated with K-GCS (r=0.894, p < 0.01), demonstrating sufficient concurrent validity. CONCLUSION: K-CRSR is a reliable and valid instrument for the assessment of patients with brain injury by trained physiatrists. This scale is useful in differentiating patients in minimally conscious state from those in vegetative state.

Efficacy of the All-in-One Therapeutic Strategy for Severe Traumatic Brain Injury: Preliminary Outcome and Limitation / 대한신경손상학회지

OBJECTIVE: Despite recent advances in medicine, no significant improvement has been achieved in therapeutic outcomes for severe traumatic brain injury (TBI). In the treatment of severe multiple traumas, accurate judgment and prompt action corresponding to rapid pathophysiological changes are required. Therefore, we developed the “All-in-One” therapeutic strategy for severe TBI. In this report, we present the therapeutic concept and discuss its efficacy and limitations. METHODS: From April 2007 to December 2015, 439 patients diagnosed as having traumatic intracranial injuries were treated at our institution. Among them, 158 patients were treated surgically. The “All-in-One” therapeutic strategy was adopted to enforce all selectable treatments for these patients at the initial stages. The outline of this strategy is as follows: first, prompt trepanation surgery in the emergency room (ER); second, extensive decompression craniotomy (DC) in the operating room (OR); and finally, combined mild hypothermia and moderate barbiturate (H-B) therapy for 3 to 5 days. We performed these approaches on a regular basis rather than stepwise rule. If necessary, internal ecompression surgery and external ventricular drainage were performed in cases in which intracranial pressure could not be controlled. RESULTS: Trepanation surgery in the ER was performed in 97 cases; among these cases, 46 had hematoma removal surgery and also underwent DC in the OR. Craniotomy was not enforced unless the consciousness level and pupil findings did not improve after previous treatments. H-B therapy was administered in 56 cases. Internal decompression surgery, including evacuation of traumatic intracerebral hematoma, was additionally performed in 12 cases. Three months after injury, the Glasgow Outcome Scale (GOS) score yielded the following results: good recovery in 25 cases (16%), mild disability in 28 (18%), severe disability in 33 (21%), persistent vegetative state in 9 (6%), and death in 63 (40%). Furthermore, 27 (36%) of the 76 most severe patients who had an abnormal response of bilateral eye pupils were life-saving. Because many cases of a GOS score of ≤5 are included in this study, this result must be satisfactory. CONCLUSION: This therapeutic strategy without any lose in the appropriate treatment timing can improve the outcomes of the most severe TBI cases. We think that the breakthrough in the treatment of severe TBI will depend on the shift in the treatment policy.

Utility of Susceptibility-Weighted Imaging in Comatose Patients after Cardiac Arrest: A Preliminary Study

PURPOSE: This study was conducted to examine the efficacies of susceptibility weighted images (SWI) for predicting the clinical prognosis of comatose patients following cardiac arrest. METHODS: Thirty-two patients who were resuscitated from cardiac arrest and underwent brain magnetic resonance imaging (MRI) were retrospectively investigated and compared to 32 subjects with normal brain MRI findings who served as controls. The SWI readings were divided into three categories: prominent, diminished, and normal. Comatose patients were divided into two groups: those with a Glasgow-Pittsburgh cerebral performance category (CPC) of 1-2 (good outcome group) and those with a CPC of 3-5 (poor outcome group). RESULTS: Of the 32 patients, 17 (53.1%) showed good neurological outcomes upon hospital discharge. Normal patterns on SWI were mainly seen in the good outcome group (15 patients, 88.2%), while diminished patterns and prominent patterns were frequently found in the poor outcome group (13 patients, 88.7%). The combination of diminished pattern and prominent pattern predicted poor outcome with 86.7% sensitivity (95% confidence interval, 69.5%-100%) and 88.2% specificity (95% confidence interval, 72.9%-100%). CONCLUSION: The SWI findings correlate with the outcome of hypoxic-ischemic encephalopathy and may be a useful adjunct of vegetative state or death in comatose patients after cardiac arrest.

Nutritional Assessment in Vegetative and Minimally Conscious Patients

The aim of this study is to investigate the nutritional status in vegetative state (VS) and minimally conscious state (MCS) patients, and to identify correlation between the duration from onset and indices indicating nutritional status. This study included a total of 37 VS and MCS patients. For nutrition assessment, the body mass index (BMI), biochemical parameters such as hemoglobin, total lymphocyte count, albumin and cholesterol levels were measured. The mean BMI was 21.31 ± 2.81 kg/m2. Only 4 patients (10.81%) were classified as underweight, 24 patients (64.86%) had normal BMI, 6 patients (16.22%) were overweight, and 3 patients (8.11%) were obese. The partial correlation coefficients showed that duration from onset has a positive correlation with BMI, and a negative correlation with cholesterol level. This study suggests that regular and properly prescribed enteral feeding in VS and MCS patients would supply stable and appropriate nutrition. Further study is needed with additional nutrition assessments reflecting muscle mass.

Lived Experience of the Mother's Caring of Adult Children with Persistent Vegetative State

PURPOSE: The purpose of this study was to deepen understanding the nature of the care experience by the mothers with adult children in persistent vegetative state. METHODS: Participants were 7 mothers caring for their adult children in persistent vegetative state. Data were collected individually through in-depth interviews on their lived experiences. Also texts were included as data from literary works, novels, movies, essays, and arts containing on patients with persistent vegetative state and their mothers. Data were analyzed by van Manen's phenomenological methodology. RESULTS: The essential themes of caring experiences of the mothers were as follows. The theme in relation to lived time has shown as back to the past and caring experience related lived body has emerged as locked the body in children. The theme related lived space was getting into the swamp and the theme in lived others was derived as lonely struggle into. CONCLUSION: The nature of mothers' caring experiences for adult children in persistent vegetative state is summarized as ‘Do not off hand of hope in a locked state’. This study suggests long-term supports are necessary for mothers to care persistent vegetative state children.

Neuroética. Ética de la neurociencia / Neuroethics. Ethics of neuroscience

Actualización del extenso y variado concepto de la neuroética. Se discute la responsabilidad profesional, tanto de médicos como de otros profesionales vinculados con las diversas ramas de la neurociencia, relacionados con la salud y la enfermedad de los pacientes afectados de un proceso que comprometa al sistema nervioso central o periférico. Se analiza el espectro amplio de la neurociencia y su vinculación con la neurotecnología. Se enumeran los diversos tipos de iatrogenia. Descripción de cuatro pacientes en estado vegetativo y muerte cerebral. Se plantea la actitud y responsabilidad del profesional médico analizando y discutiendo el enfoque terapéutico correspondiente. Se recuerdan las desviaciones de la neuroética durante el período nazi, antes y durante la Segunda Guerra mundial. Se mencionan situaciones médicas especiales que plantean aspectos neuroéticos.

Update of broad concept of neuroethics. The liability of different members related to neuroscience connected to health and disease of the central and peripheral nervous system are discussed. The importance of neuroethics with neurotechnology. Different types of iatrogenic disturbances are mentioned. Four patients with vegetative state and cerebral death, and the medical responsibility in the therapeutic approach are analyzed. Deviations of neuroethics during the nazi period and the second world war are described. Some especial medical situations with neuroethics aspects are commented.

Limitação de esforço terapêutico na pessoa com lesão encefálica grave / La limitación del esfuerzo terapéutico en persona con lesión cerebral grave / Limitation of therapeutic effort in person with severe brain injury

As discussões a respeito das condutas de limitação de esforço terapêutico (LET) são frequentes nas unidades de terapia intensiva e na especialidade médica oncológica e são também importantes em contextos hospitalares de internação de longa permanência para vítimas de grandes traumas e agravos que necessitam de cuidados prolongados à saúde e de reinserção social. Na prática clínica, a tomada de decisão para LET é complexa e deve envolver o indivíduo, a família e a equipe multiprofissional. O objetivo deste artigo é discorrer a respeito da LET como um abrangente processo de "adequação de medidas" por agregação consensual de fatores centrado na pessoa, pautado por intensificação dos cuidados paliativos...

Las discusiones acerca de las conductas de limitación del esfuerzo terapéutico (LET) son comunes en las unidades de cuidados intensivos y oncología y también son importantes en hospitales de larga estancia para las personas víctimas de traumatismos graves y lesiones que requieren atención de salud a largo plazo y la reintegración social. En la práctica clínica, la toma de decisiones para la LET es compleja y debe abordar al individuo, la familia y el equipo multiprofesional. El propósito de este artículo es discutir sobre LET como un proceso integral de "adecuación de medidas" mediante la agregación consensual de factores centrados en la persona, marcado por la intensificación de los cuidados paliativos...

Discussions about the limitation of therapeutic effort are common in intensive care units and oncology and are also important in long stay hospitals for victims of major trauma and injuries that require long-term health care and social reintegration. In clinical practice, the decision making for limitation of therapeutic effort is complex and multifactorial and should involve the individual, the family and the multidisciplinary team. The purpose of this article is to discuss about limitation of therapeutic effort as a comprehensive process of "adjustment of measures" for consensual aggregation of person-centered factors, marked by intensification of palliative care...

Bioética: Todo lo técnicamente posible, ¿es éticamente admisible? / Approach to Nutritional Support from a Bioethical

Introduccion: la decisión sobre la administración, no instauración o retirada de nutrición e hidratación artificiales (NHA) en situaciones clínicas límite es fuente de dilemas éticos. Objetivo: Realizar una aproximación al debate bioético en materia de NHA en pacientes en Estado Vegetativo Persistente, con demencia avanzada y enfermos terminales; analizar los valores que más frecuentemente pueden entrar en conflicto; analizar el proceso de toma de decisiones sobre administración, no instauración, o retirada de NHA; destacar el rol del Licenciado en Nutrición en el mismo. Desarrollo: Existen posiciones encontradas en cuanto al valor de la vida y la consideración de la NHA como cuidado básico o tratamiento médico; los beneficios, riesgos y costos objetivos y subjetivos de la NHA, y la consecuente valoración de su utilidad/futilidad; y los valores de los sujetos en cuestión. El paciente competente tiene el derecho de decidir sobre su propio tratamiento. El Licenciado en Nutrición puede jugar un rol inestimable en el proceso deliberativo de toma de decisiones bioéticas en estos casos.Conclusiones: El debate sobre dilemas éticos que involucran ala NHA en situaciones clínicas límite puede ser incómodo, pero debe ser ineludible. Los Licenciados en Nutrición están en posición de ofrecer una mirada distintiva, por lo que pueden y deben ser capaces de promover y participar activamente del proceso deliberativo de toma de decisiones.