Advance Healthcare Directives: Binding or Informational Value?

Advance directives entail a refusal expressed by a still-healthy patient. Three consequences stem from that fact: (a) advance refusal is unspecific, since it is impossible to predict what the patient's conditions and the risk-benefit ratio may be in the foreseeable future; (b) those decisions cannot be as well informed as those formulated while the disease is in progress; (c) while both current consent and refusal can be revoked as the disease unfolds, until the treatment starts out, advance directives become effective when the patient becomes incapable or unconscious; such decisions can therefore not be revoked at any stage of the disease. Therefore, advance directives are binding for doctors only at the stage of advance treatment planning, i.e., only if they refer to an illness already in progress.

Against autonomy: How proposed solutions to the problems of living wills forgot its underlying principle.

Significant criticisms have been raised regarding the ethical and psychological basis of living wills. Various solutions to address these criticisms have been advanced, such as the use of surrogate decision makers alone or data science-driven algorithms. These proposals share a fundamental weakness: they focus on resolving the problems of living wills, and, in the process, lose sight of the underlying ethical principle of advance care planning, autonomy. By suggesting that the same sweeping solutions, without opportunities for choice, be applied to all, individual patients are treated as population-level groups-as a theoretical patient who represents a population, not the specific patient crafting his or her individualized future care plans. Instead, advance care planning can be improved through a multimodal approach that both mitigates cognitive biases and allows for customization of the decision-making process by allowing for the incorporation of a variety of methods of advance care planning.

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.

TRIAD XII: Are Patients Aware of and Agree With DNR or POLST Orders in Their Medical Records.

OBJECTIVE: The aim of the study was to determine (1) whether do-not-resuscitate (DNR) orders created upon hospital admission or Physician Orders for Life-Sustaining Treatment (POLST) are consistent patient preferences for treatment and (2) patient/health care agent (HCA) awareness and agreement of these orders. METHODS: We identified patients with DNR and/or POLST orders after hospital admission from September 1, 2017, to September 30, 2018, documented demographics, relevant medical information, evaluated frailty, and interviewed the patient and when indicated the HCA. RESULTS: Of 114 eligible cases, 101 met inclusion criteria. Patients on average were 76 years old, 55% were female, and most white (85%). Physicians (85%) commonly created the orders. A living will was present in the record for 22% of cases and a POLST in 8%. The median frailty score of "4" (interquartile range = 2.5) suggested patients who require minimal assistance. Thirty percent of patients requested cardiopulmonary resuscitation and 63% wanted a trial attempt of aggressive treatment if in improvement is deemed likely. In 25% of the cases, patients/HCAs were unaware of the DNR order, 50% were unsure of their prognosis, and another 40% felt their condition was not terminal. Overall, 44% of the time, the existing DNR, and POLST were discordant with patient wishes and 38% were rescinded. Of the 6% not rescinded, further clarifications were required. Discordant orders were associated with younger, slightly less-frail patients. CONCLUSIONS: Do-not-resuscitate and POLST orders can often be inaccurate, undisclosed, and discordant with patient wishes for medical care. Patient safety and quality initiatives should be adopted to prevent medical errors.

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)

[Correlation of living will, bioethics, professional activity and patient autonomy]. / Interface do testamento vital com a bioética, atuação profissional e autonomia do paciente.

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.

Why I wrote my advance decision to refuse life-prolonging treatment: and why the law on sanctity of life remains problematic.

This paper, pursuing themes indefatigably defended in this journal and elsewhere by Professors Jenny and Celia Kitzinger, explains what led me to write my own advance decision (AD) to refuse life-prolonging treatment if I become legally incapacitated to make my own healthcare decisions for longer than 3 months and am medically assessed as very unlikely to regain such legal capacity. I attach my Advance Decision to Refuse Life Prolonging Treatment to the online version of this paper for comment advice and possible general interest. I argue that while a Supreme Court judgement in 2013, followed by a Court of Protection judgement in 2015 greatly ameliorate my earlier concerns about excessive judicial emphasis on the sanctity of life, certain current requirements in the Code of Practice to the Mental Capacity Act 2005 and in the Rules of the Court of Protection, especially Practice Direction 9E, concerning permanent vegetative state and minimally conscious state, seem clearly to contradict aspects of that Supreme Court judgement. If the logical implications of those legal requirements were thoroughly implemented medical practice would be substantially and undesirably skewed towards provision of treatments to prolong life that are unwanted, non-beneficial and wasteful of healthcare resources. I urge that these legal requirements are modified to make them consistent with the Supreme Court's judgement in Aintree v James.

Navigating Ethical Conflicts Between Advance Directives and Surrogate Decision-Makers' Interpretations of Patient Wishes.

There is little guidance on what clinicians should do when advance directives (or living wills, specifically) are challenged, particularly when surrogate decision-makers' interpretations of patients' wishes conflict with the living will. In our commentary, we make a controversial argument suggesting that overriding living wills can be ethically preferable to the alternative of strictly adhering to them. We propose four ethical considerations for determining whether it is ethically supportable to override living wills.

[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.

Living Wills in Italy: Ethical and Comparative Law Approaches.

In this article, advance directives will be analysed through ethical and comparative law approaches. Their importance, the two different types of advance directives and the so-called three steps hierarchy, will be discussed. Living wills will be treated in detail, considering the criticism they have attracted, as well as their known benefits. A thorough examination of the latest version of Arts. 3 and 4 of Italian Bill No. 2350, as approved by the Italian Senate in March 2009 and then amended by the Chamber of Deputies in July 2011, is included. This bill grants advance directives advisory force, limits their application in time and does not allow the validity of oral declarations. This political decision limits autonomy. Furthermore, there are doubts about the constitutionality of this bill, especially with respect to Arts. 2, 13 and 32 of the Italian Constitution, related to the right of self-determination. Further, this article will include a comparative approach of the legal aspects, with particular attention to the French and German models. To conclude, some ethical principles that the Italian legislator must take into consideration are indicated. In addition, some possible modifications of this Bill are suggested based on the experience of other European legislation.

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.

Alzheimer, dementia and the living will: a proposal.

The world population aged significantly over the twentieth century, leading to an increase in the number of individuals presenting progressive, incapacitating, incurable chronic-degenerative diseases. Advances in medicine to prolong life prompted the establishment of instruments to ensure their self-determination, namely the living will, which allows for an informed person to refuse a type of treatment considered unacceptable according to their set of values. From the knowledge on the progression of Alzheimer disease, it is possible to plan the medical care, even though there is still no treatment available. Irreversible cognitive incapacity underlines the unrelenting loss of autonomy of the demented individual. Such a loss requires the provision of specific and permanent care. Major ethical issues are at stake in the physician-patient-family relationship, even when dementia is still at an early stage. The authors suggest that for an adequate health care planning in Alzheimer disease the living will can be presented to the patient in the early days of their geriatric care, as soon as the clinical, metabolic or even genetic diagnosis is accomplished. They also suggest that the appointment of a health care proxy should be done when the person is still in full enjoyment of his cognitive ability, and that the existence and scope of advance directives should be conveyed to any patient in the early stages of the disease. It follows that ethical guidelines should exist so that neurologists as well as other physicians that deal with these patients should discuss these issues as soon as possible after a diagnosis is reached.

[Ethical issues of artificial nutritional support]. / Ethische Fragen der künstlichen Ernährung.

This review article discusses some ethical issues of clinical nutrition according to the Beauchamp and Childress principles of bioethics: "respect for autonomy, nonmaleficence, beneficence, and justice".