Speaking for Our Father.

A living will is a document in which an individual can communicate his or her health care choices to loved ones in the event that he or she is unable to do so directly. Many surrogate decision-makers use living wills as guides; however, the existence of such documents does not entirely relieve them of their burden. Surrogate decision-makers often need to consider the impact of the personal and family burdens entailed by their decisions, and the stress accompanying these burdens regularly creates high levels of anxiety and depression. This stress can be exacerbated when two surrogate decision-makers are at loggerheads as to the best way forward. This case study illustrates the effects of stress accompanying disagreement among surrogate decision-makers-here, the patient's adult sons-and demonstrates that a process of listening can help the bioethicist identify the values that are important to the patient and, consequently, to the surrogate as well, and use these values to help address the issue.

Interface do testamento vital com a bioética, atuação profissional e autonomia do paciente / Correlation of living will, bioethics, professional activity and patient autonomy / Relación entre testamento vital, bioética, actuación profesional y autonomía del paciente

RESUMO Objetivo Analisar a relação do testamento vital com os aspectos bioéticos, a atuação profissional e a autonomia do paciente. Método Trata-se de uma reflexão teórica, realizada a partir de busca nos bancos de dados, Biblioteca Virtual de Saúde, Pubmed e Scielo utilizando os vocábulos "testamento vital", "direito do paciente", "bioética", "autonomia pessoal" e "profissional de saúde", e os respectivos termos na língua inglesa. A partir da leitura dos resumos encontrados foram selecionados aqueles que atendiam ao objetivo proposto e localizados os textos completos, os quais foram lidos criticamente, para subsidiar essa reflexão. Resultados As análises trazem reflexões da bioética aplicada às questões de Finitude da vida, o conhecimento dos profissionais de saúde quanto os direitos do paciente em doença terminal, bem como a autonomia do paciente quanto aos seus direitos previsto pelo testamento vital. Conclusão O "Testamento Vital" ainda é um termo pouco conhecido, mas precisa de uma maior divulgação e conhecimento entre os profissionais de saúde e a população, pois o mesmo diz respeito à legitimação de um direito do paciente, em momento crucial de sua existência humana.(AU)

ABSTRACT Objective To analyze the correlation between living will and bioethical aspects, professional performance and patient autonomy. Methods Theoretical reflection after a search conducted in the Virtual Health Library, PubMed and SciELO databases, using the words "living will", "right of the patient", "bioethics", "personal autonomy" and "health professional", as well as the corresponding terms in Portuguese. Based on the reading, abstracts that met the proposed objective were selected and full texts were subsequently consulted and read critically to support this reflection. Results Analyzes led to reflect on bioethics applied to health professional knowledge on the rights of terminally ill patients, as well as their autonomy regarding their living will. Conclusion "Living will" is still a poorly understood term that needs greater dissemination and knowledge among health professionals and the population, as it addresses the legitimacy of patient's rights at a crucial moment of human life.(AU)

RESUMEN Objetivo Analizar la relación del testamento vital con los aspectos bioéticos, la actuación profesional y la autonomía del paciente. Método Consiste en una reflexión teórica, realizada a partir de la búsqueda en los bancos de datos, Biblioteca Virtual de Salud, PUBMED y SciELO utilizando los vocablos "testamento vital", "derecho del paciente", "bioética", "autonomía personal" y "profesional de la salud", y sus respectivos términos en la lengua inglesa. A partir de la lectura de los resúmenes encontrados fueron seleccionados aquellos que atendían al objetivo propuesto y localizados los textos completos, los cuales fueron leídos críticamente, para sustentar esa reflexión. Resultados Los análisis traen reflexiones de la bioética aplicada a las cuestiones de finitud de la vida, el conocimiento de los profesionales de salud como los derechos del paciente en enfermedad terminal, así como la autonomía del paciente en cuanto a sus derechos previstos por el testamento vital. Conclusión El "Testamento Vital" todavía es un término poco conocido, pero necesita una mayor divulgación y conocimiento entre los profesionales de la salud y la población, pues lo mismo se refiere a la legitimación de un derecho del paciente, en el momento crucial de su existencia humana.(AU)

Conocimientos y actitudes de enfermeras de onco-hematología ante el documento de voluntades anticipadas / Knowledge and attitudes of nurses of onco-hematology related to the living will document

RESUMEN Introducción: Las voluntades anticipadas o testamento vital permiten que una persona pueda, anticipadamente, manifestar sus deseos y opciones para que se tengan en cuenta cuando no pueda hacerlo personalmente. En la planificación anticipada de decisiones la enfermera participa activamente en la explicación del proceso compartido. Su conocimiento y actitud ante las voluntades anticipadas son clave. Objetivo: Identificar el grado de conocimiento de los profesionales de Enfermería sobre las voluntades anticipadas, y conocer su actitud y opinión respecto al documento de voluntades anticipadas. Métodos: Estudio observacional descriptivo transversal entre marzo y agosto 2016 en el 100 por ciento del equipo de Enfermería del Instituto Clínico de Enfermedades Hemato-Oncológicas del Hospital Clínic de Barcelona (n=59) mediante cuestionario validado de 12 preguntas, con respuestas tipo Likert escala 1-10 (1 menos favorable-10 más favorable) a las cuestiones planteadas sobre las voluntades anticipadas. Se realizaron estadísticos de tendencia central, dispersión y contraste. Resultados: La edad media fue 36,92 (IC95 por ciento 33,85 39,98); años experiencia media: 13,41 (IC95 por ciento 10,37 16,44), media de conocimientos sobre voluntades anticipadas: 5,59 (IC95 por ciento 5,0 6,19), media puntuación total: 8,63 (IC95 por ciento 8,42 8,85). La edad, años de experiencia y tipo de contrato son las variables que ofrecieron diferencias significativas en conocimientos sobre el documento de voluntades anticipadas y en su predisposición realizarlo el próximo año. Conclusiones: Los conocimientos sobre las voluntades anticipadas entre enfermeras expertas son mejorables, especialmente entre las de menor edad y experiencia. Sin diferencias entre grupos, la actitud de las enfermeras hacia el registro del documento de voluntades anticipadas es muy favorable y lo consideran muy útil para familias y profesionales(AU)

ABSTRACT Introduction: Anticipated wills or the life will allow a person to express, in advance, his/her wishes and options, so that they are taken into account when they cannot do it personally. In advanced decision planning, the nurse participates actively in the explanation of the shared process. Their knowledge and attitude towards the anticipated wills are essential elements. Objective: To identify the degree of knowledge among nursing professionals about anticipated wills, and to know their attitude and opinion regarding the papers for anticipated wills. Methods: Cross-sectional, descriptive and observational study carried out between March and August 2016 in 100 percent of the nursing team at the Clinical Institute of Hemato-Oncological Diseases of Hospital Clínic of Barcelona (n=59) through a validated questionnaire made up by 12 questions, with Likert type responses scale 1-10 (1: less favorable-10: more favorable) to the questions raised about the anticipated wills. Statistics for central tendency, dispersion and contrast were used. Results: The average age was 36.92 (95 percent CI 33.85, 39.98); years of average experience: 13.41 (95 percent CI 10.37 16.44), average knowledge about anticipated wills: 5.59 (IC95 percent 5.0 6.19), average total score: 8.63 (95 percent CI 8), 42, 8.85). The age, years of experience, and type of contract are the variables that offered significant differences in knowledge about the papers for anticipated wills and their willingness for presenting such paper next year. Conclusions: The knowledge about anticipated wills among expert nurses is improvable, especially among those at younger ages and with less experience. Without differences among groups, the nurses' attitude towards the registration of the paper for anticipated wills is very favorable, as they consider it very useful for families and professionals(AU)

[Patients' declared intentions and emergency medicine]. / Patientenwille und Akutmedizin.

Patients with complex medical problems and acute life-threatening diseases deserve a physician with the capability of rapid decision making. Despite an emergency scenario with several unknown or uncertain variables an individual therapeutic plan needs to be defined for each patient. In order to achieve this goal the physician must define medical indications for each form of treatment. Secondly, the patients declared intentions must be respected concerning the previously defined medical indications; however, very often the patients' will is not known. It is very difficult to define an individual treatment plan especially if the patient is not able to adequately communicate. In these situations a custodian is helpful to find out the patients declared intentions towards the current medical situation. If there is no advance directive, family members often have to act as surrogates to find out what therapy goal is best for the individual patient. The patients' autonomy is a very highly respected ethical priority even when the ability for the otherwise usual practice of shared decision-making between physician and patient is compromised. Therefore, in order to do justice to this demanding situation it is necessary to deal with the characteristics of the physician-patient-relatives relationship in emergency medicine.

Aspectos bioético-jurídicos de las instrucciones previas o testamento vital en el contexto normativo español / Bioethical and legal issues of advance directives or living wills in the context of Spain / Aspectos bioético-jurídicos das instruções prévias ou testamento vital no contexto normativo espanhol

La discrepancia que genera la institución de las instrucciones previas se aprecia en distintos niveles -ético, jurídico social-, y alcanza incluso al ámbito terminológico, esto es, los términos empleados para referirse a esta institución no son en absoluto pacíficos o unívocos: desde testamentos vitales, voluntades o directivas anticipadas, deseos expresados anteriormente, etc., lo que lleva a cierta confusión sobre si se trata o no de la misma figura y a cierta inseguridad jurídica, ámbito por cierto sumamente prolijo en este sentido. No obstante la abundante legislación y doctrina sobre el particular, existe poca información acerca de la forma de registrar el documento, la posibilidad de consultarlo o los límites para su cumplimiento. Este artículo trata de ofrecer mayor luz al respecto, en el seno de la normativa española.

The discrepancy generated by advanced directives is observed in several levels -ethical, legal and social-, and reaches even the terminological field, that is, the terms employed to refer to the issue are not distinct or indifferent at all: from living will to advanced directives to wishes previously expressed, etc., which confers some confusion about whether it refers to the same issue or to some legal insecurity, field otherwise very complex in this sense. In spite of the abundant legislation and doctrine about the issue, there is little information about the way to register the document, the possibility to consult it and the limits about its fulfillment. This article tries to offer more understanding of the issue considering the norms of Spain.

A discrepância que gera a instituição das instruções prévias é apreciada em distintos níveis -ético, jurídico social-, e alcança inclusive o âmbito terminológico, isto é, os termos empregados para se referir a esta instituição não são em absoluto pacíficos ou unívocos: desde testamentos vitais, vontades ou diretivas antecipadas, desejos expressados anteriormente, etc., o que leva a certa confusão sobre se se trata ou não da mesma figura e a certa insegurança jurídica, âmbito por certo sumamente prolixo neste sentido. Não obstante a abundante legislação e doutrina sobre o particular, existe pouca informação acerca da forma de registrar o documento, a possibilidade de consultá-lo ou os limites para seu cumprimento. Este artigo trata de oferecer maior luz a respeito, no seio da normativa espanhola.

To Feed or Not to Feed? A Case Report and Ethical Analysis of Withholding Food and Drink in a Patient With Advanced Dementia.

It is well established that competent patients have the right to refuse artificial nutrition and hydration. There is less clarity regarding withholding nutrition in patients who lack decision-making capacity but who are still physically able to eat and drink. This case highlights the ethical dilemma of withholding food and drink in a patient with advanced dementia.

[Passive euthanasia and living will]. / Passzív eutanázia és végakarat.

This article deals with the intentional distinction between murder of first degree and passive euthanasia. In Hungary, active euthanasia is considered to be a murder of first degree, whilst the Netherlands, Belgium, Luxemburg and Switzerland have legalized the active form of mercy killing in Europe. The palliative terminal care, when e.g. giving pain-killer morphine to the patient, might result in decreasing the patient's life-span, and thus causing indirect euthanasia. However, the legal institution of living will exists in several counter-euthanasia countries. The living will allows future patients to express their decision in advance to refuse a life-sustaining treatment, e.g. in case of irreversible coma. The institution of living will exists in Germany and in Hungary too. Nevertheless, the formal criteria of living will make it hardly applicable. The patient ought to express his/her will before a notary public in advance, and he/she should hand it over when being hospitalized. If the patient is not able to present his/her living will to his/her doctor in the hospital, then his/her only hope remains that he/she has given a copy of the living will to the family doctor previously, and the family doctor will notify the hospital.

[End-of life decisions in intensive care units. Influence of patient wishes on therapeutic decision making]. / Therapiezieländerungen auf einer internistischen Intensivstation. Einfluss von Willensäußerungen der Patienten auf Therapieentscheidungen.

BACKGROUND: Among the ethical principles in medicine, respect for patient autonomy has gained the highest revaluation in recent decades. In Germany this was fostered by new legal regulations which came into effect in 2009 and clarified issues regarding end-of-life (EOL) decisions. In this study the influence of direct or mediated wishes of patient wills on EOL decisions in a medical intensive care unit (ICU) were investigated. METHODS: A retrospective analysis of all patients who died in the years 2009-2010 while being treated in the medical ICU of a large German university hospital was carried out. RESULTS: During the observation period 3,401 patients were treated in the ICU of whom 19 % (n=658) died in hospital. Of the 658 patients who died 126 (19 %) had received unlimited therapy, life support was withheld in 241 patients (37 %) and life support was withdrawn in 245 patients (37 %). In 46 patients (7 %) palliative care was instituted from the beginning of the ICU stay. In 104 cases (16 %) the patients themselves made the EOL decision and in 78 cases (12 %) an advance directive was given. A legal healthcare proxy was designated in 8 %. In 541 cases (82 %) the relatives were involved in the EOL decisions. No serious or unsolvable conflicts with relatives were experienced. Involvement of a court of law was not necessary in any of the cases. CONCLUSIONS: In a high percentage of the patients (81 %) who died during the course of intensive care treatment EOL policies were in place. The patients or their relatives were almost always involved in the decision making process. The current German law is in concordance with the established EOL practice in this intensive care unit.

The use of advance care planning to guide decisions about artificial nutrition and hydration.

Advance care planning is important to ensure that patients, when competent, can influence the kind of medical care they receive if they lose decision-making capacity. Because decisions by surrogates to for-go nutrition support remain controversial, specific inclusion of artificial nutrition and hydration as a part of advance care planning has taken on growing importance. This article reviews the choices about artificial nutrition and hydration that are possible using conventional advance directives such as the living will, the instructional directive, values histories, and combination directives. It summarizes the legal basis for such documents. It also describes the ways that physicians' orders to limit treatment can help implement decisions about the use of artificial nutrition and hydration. Finally, it stresses the importance of clarifying with patients and families the risks and benefits of nutrition support in a variety of common situations such as advanced dementia and metastatic cancer as an essential prerequisite to meaningful advance care planning.

Managing do-not-resuscitate orders in the perianesthesia period.

Perianesthesia care often involves the use of pharmacologically potent drugs, increasing the risk of cardiopulmonary depression and arrest. For patients with terminal diseases, it may be difficult to decide whether cardiopulmonary arrest in the perianesthesia period is a result of anesthetic medications, surgical intervention, or the disease process. It is imperative that the patient maintains autonomy and is treated according to his or her wishes regarding do-not-resuscitate (DNR) orders. Some hospitals automatically suspend DNR orders for patients undergoing surgery, whereas others provide patients the option of no, limited, or full resuscitation. This article promotes the premise that all DNR orders should be reviewed and reconsidered with patients before consent for surgery.