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.

Authority without identity: defending advance directives via posthumous rights over one's body.

This paper takes a novel approach to the active bioethical debate over whether advance medical directives have moral authority in dementia cases. Many have assumed that advance directives would lack moral authority if dementia truly produced a complete discontinuity in personal identity, such that the predementia individual is a separate individual from the postdementia individual. I argue that even if dementia were to undermine personal identity, the continuity of the body and the predementia individual's rights over that body can support the moral authority of advance directives. I propose that the predementia individual retains posthumous rights over her body that she acquired through historical embodiment in that body, and further argue that claims grounded in historical embodiment can sometimes override or exclude moral claims grounded in current embodiment. I close by considering how advance directives grounded in historical embodiment might be employed in practice and what they would and would not justify.

Do New Neuroimaging Findings Challenge the Ethical Basis of Advance Directives in Disorders of Consciousness?

Some authors have questioned the moral authority of advance directives (ADs) in cases in which it is not clear if the author of the AD is identical to the person to whom it later applies. This article focuses on the question of whether the latest results of neuroimaging studies have moral significance with regard to the moral authority of ADs in patients with disorders of consciousness (DOCs). Some neuroimaging findings could provide novel insights into the question of whether patients with DOCs exhibit sufficient psychological continuity to be ascribed diachronic personal identity. If those studies were to indicate that psychological continuity is present, they could justify the moral authority of ADs in patients with DOCs. This holds at least if respect for self-determination is considered as the foundation for the moral authority of ADs. The non-identity thesis in DOCs could no longer be applied, in line with clinical and social practice.

Withdrawal of life-sustaining therapy.

PURPOSE OF REVIEW: The aim of this review is to examine literature relating to the withdrawal of life-sustaining therapy (WLST). RECENT FINDINGS: Discussions regarding end-of-life issues in adults and children are not occurring comprehensively. Discussions relating to the WLST in the pediatric population varies by institution and may vary by race, age, health insurance, diagnosis, and severity of illness. Completing advance directives prior to placement of life-sustaining treatments is not consistent practice. With the WLST, differences in perspectives exist between medical specialties, within one specialty at different levels of training, and in physicians' ethical and psychological responses to the WLST. The timing of WLST appears to be influenced by ICU strain and communication issues. Study outcomes differ regarding the functionally favorable survival of patients who have had WLST. Universal guidelines for the WLST may not address individual patient circumstances. SUMMARY: Discussions of end-of-life issues early in the course of a patient's health care will contribute to the healthcare team's understanding and respect of the patient's wishes. This article addresses the withdrawal of left ventricular assist devices; attending physicians and physicians in training perspectives of WLST; do physicians distinguish between withholding and WLST; the timing of WLST; guidelines for the process of WLST; and pediatrics and end-of-life decisions.

How Surrogates Decide: A Secondary Data Analysis of Decision-Making Principles Used by the Surrogates of Hospitalized Older Adults.

BACKGROUND: Many hospitalized adults do not have the capacity to make their own health care decisions and thus require a surrogate decision-maker. While the ethical standard suggests that decisions should focus on a patient's preferences, our study explores the principles that surrogates consider most important when making decisions for older hospitalized patients. OBJECTIVES: We sought to determine how frequently surrogate decision-makers prioritized patient preferences in decision-making and what factors may predict their doing so. DESIGN AND PARTICIPANTS: We performed a secondary data analysis of a study conducted at three local hospitals that surveyed surrogate decision-makers for hospitalized patients 65 years of age and older. MAIN MEASURES: Surrogates rated the importance of 16 decision-making principles and selected the one that was most important. We divided the surrogates into two groups: those who prioritized patient preferences and those who prioritized patient well-being. We analyzed the two groups for differences in knowledge of patient preferences, presence of advance directives, and psychological outcomes. KEY RESULTS: A total of 362 surrogates rated an average of six principles as being extremely important in decision-making; 77.8% of surrogates selected a patient well-being principle as the most important, whereas only 21.1% selected a patient preferences principle. Advance directives were more common to the patient preferences group than the patient well-being group (61.3% vs. 44.9%; 95% CI: 1.01-3.18; p = 0.04), whereas having conversations with the patient about their health care preferences was not a significant predictor of surrogate group identity (81.3% vs. 67.4%; 95% CI: 0.39-1.14; p = 0.14). We found no differences between the two groups regarding surrogate anxiety, depression, or decisional conflict. CONCLUSIONS: While surrogates considered many factors, they focused more often on patient well-being than on patient preferences, in contravention of our current ethical framework. Surrogates more commonly prioritized patient preferences if they had advance directives available to them.

La donación en asistolia controlada (tipo III de Maastricht) en pediatría / Pediatric organ donation following controlled circulatory death (Maastrich category III)

La población infantil presenta una mayor morbimortalidad en lista de espera de trasplante y una mayor dificultad para la obtención de donantes pediátricos; la evolución a muerte encefálica es excepcional en este grupo de edad. La donación en asistolia tipo III se determina tras la certificación de la muerte del paciente por criterios circulatorios y respiratorios, tras la decisión previa e independiente de adecuación del esfuerzo terapéutico (AET). Actualmente los resultados parecen apoyar que los órganos de donación en asistolia no tienen una peor supervivencia que los procedentes de una donación tras la muerte encefálica. La aplicación de protocolos de donación en asistolia controlada podría aumentar significativamente el número de donantes y trasplantes, lo que beneficiaría no sólo a la población pediátrica, sino también a la adulta, al aumentar el número de órganos disponibles. Sin embargo, en la edad pediátrica, sobre todo en la etapa neonatal, existen algunas particularidades en este tipo de donación que son objeto de debate; entre ellas, la identificación de pacientes candidatos, la definición de fallecimiento o la subrogación del consentimiento de donación. En este artículo se revisan los aspectos éticos que deben tenerse en cuenta en la aplicación de este tipo de protocolos, tanto en la decisión de realizar una AET como en la información y el consentimiento informado, el manejo y los cuidados paliativos, el proceso de retirada del soporte vital, la certificación de fallecimiento y el soporte familiar (AU)

Children constitute a specific population who face a higher risk of mortality and morbidity while on a transplant waiting list and who encounter greater difficulty in finding suitable organ donors, since progression towards brain death is exceptional in this age group. Maastricht category III organ donation after circulatory determination of death is defined as that which occurs following confirmation of death using circulatory and respiratory criteria in patients who die as a result of the decision to limit therapy, which must have been made previously and independently. Results published in the current literature seem to indicate that survival of organs donated after circulatory death is not lower than that of organs donated after brain death. The establishment of controlled cardiac death organ donation protocols could significantly increase the number of donors and transplants, which would imply a great number of available organs, thus benefitting not only children but also the adult population. There is, however, a number of particular aspects pertaining pediatric and especially neonatal patients which are subject to debate, such as the identification of transplant candidates, the definition of death and the withdrawal of consent for organ donation. In this article, the ethical issues that can arise during the implementation of these protocols are reviewed, including those related to the decision to limit therapy, the way of conveying information and obtaining informed consent, medical management and palliative care, the process of life-support withdrawal, death certification and bereavement support (AU)

Las órdenes de no reanimar: ¿siempre consensuadas?. Respuesta / Do-notresuscitate orders: always with consensus?. Reply

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The implausibility of response shifts in dementia patients.

Dementia patients may express wishes that do not conform to or contradict earlier expressed preferences. Our understanding of the difference between their prior preferences and current wishes has important consequences for the way we deal with advance directives. Some bioethicists and gerontologists have argued that dementia patients change because they undergo a 'response shift'. In this paper we question this assumption. We will show that proponents of the response shift use the term imprecisely and that response shift is not the right model to explain what happens to dementia patients. We propose a different explanation for the changed wishes of dementia patients and conclude that advance directives of dementia patients cannot be simply put aside.

Beyond competence: advance directives in dementia research.

Dementia is highly prevalent and incurable. The participation of dementia patients in clinical research is indispensable if we want to find an effective treatment for dementia. However, one of the primary challenges in dementia research is the patients' gradual loss of the capacity to consent. Patients with dementia are characterized by the fact that, at an earlier stage of their life, they were able to give their consent to participation in research. Therefore, the phase when patients are still competent to decide offers a valuable opportunity to authorize research, by using an advance research directive (ARD). Yet, the use of ARDs as an authorization for research participation remains controversial. In this paper we discuss the role of autonomous decision-making and the protection of incompetent research subjects. We will show why ARDs are a morally defensible basis for the inclusion of this population in biomedical research and that the use of ARDs is compatible with the protection of incompetent research subjects.

Papel del médico de familia en la cumplimentación y registro del documento de instrucciones previas / Role of the family doctor in the completion and registration of advance directives documents

La actitud de los profesionales sobre el testamento vital no es homogénea y varía en función de la especialidad, la experiencia y de las propias creencias; todavía muchos médicos siguen teniendo miedo de incomodar a los pacientes. No es igual la situación que se plantea para el profesional en un hospital de agudos con un paciente relativamente desconocido que lo que pueda surgir en una unidad de cuidados paliativos o en la consulta del médico de familia que es el que atiende de forma integral al paciente. En atención primaria se dispone de una situación privilegiada para acercarnos a la vida y los valores de nuestros pacientes y sus familiares y no solo a la enfermedad, lo que hace que sea el lugar adecuado para orientar y asesorar al paciente sobre la preparación y registro del documento de últimas voluntades (AU)

The attitude of professionals about living wills (advance directives) is not homogenous and varies depending on the specialty, experience and beliefs. Many doctors are still afraid of inconveniencing patients. The situation confronting the professional in an acute care hospital with a relatively unknown patient in a palliative care unit is not the same as consulting a family doctor who is caring for the patient holistically. Primary care has a unique position to approach the life and values of our patients and their families and not just the disease, which makes it the right place to guide and advise the patient on the preparation and registration of living wills (AU)

Conocimiento y valoración por parte de los ciudadanos de Cataluña sobre las voluntades anticipadas y la atención al final de la vida / Knowledge and assessment of advance directives and end-of-life care by the public in Catalonia

OBJETIVO: Este trabajo aporta información sobre el conocimiento y la valoración que hacen los ciudadanos catalanes del documento de voluntades anticipadas y de la atención al final de la vida. MÉTODOS: Estudio descriptivo a partir de los datos de la Encuesta de Salud de Cataluña que se realizó durante el segundo semestre de 2011 a una muestra (n = 1.394) representativa de la población catalana no institucionalizada, mediante un equipo de encuestadores que visitó los domicilios de las personas seleccionadas de manera aleatoria. Se realizó un análisis bivariable con el test de la «t» de Student y análisis de la varianza (ANOVA) para comparar medias y un análisis multivariable mediante un modelo de regresión logística utilizando como variable dependiente haber hecho o querer hacer un documento de voluntades anticipadas (DVA). RESULTADOS: En una escala de 0 a 10 los ciudadanos valoran especialmente evitar el sufrimiento físico y psíquico (9), poder hablar con su familia (8,8), ser informados adecuadamente (8,6), participar en la planificación de la atención (8,4), designar un representante (8,4) y disponer de su vida y acabar con ella cuando lo consideren conveniente (8,1). El DVA es moderadamente conocido (44,4%), bien valorado (7,6 en una escala de 0 a 10), pero poco utilizado (solo el 1,9% de las personas entrevistadas lo ha hecho). Un 63,1% manifiesta la voluntad de hacerlo y el 61,4% considera importante la ayuda de los profesionales sanitarios para realizarlo. CONCLUSIONES: Existe una disociación entre los deseos expresados por las personas entrevistadas y la realidad. Es necesario encontrar estrategias que disminuyan esta disociación, entre ellas, una mayor implicación de los profesionales asistenciales en la ayuda a la planificación anticipada de la atención y la elaboración del DVA (AU)

OBJECTIVE: Information on the knowledge and assessment of the Catalonian public on advance directives and end-of-life care is presented. METHODS: Descriptive study based on data from the Health Survey of Catalonia, administered during the second half of 2011 to a sample (n = 1,394) representing the non-institutionalized population of Catalonia by a survey team that visited the residences of randomly selected people. RESULTS: On a scale of 0-10 citizens especially valued, avoiding physical and psychological suffering (9), speaking with their family (8.8), being properly informed (8.6), participating in care planning (8.4), designating a representative (8.4), and to be responsible for their own life and to terminate it if they wish to do so. (8.1). The advance directives document is moderately known (44.4%), valued (7.6 on a scale of 0 to 10), but little used (only 1.9% of respondents has made such a document); 63.1% express a willingness to do so and 61.4% considered the help of health professionals to make one as important. CONCLUSIONS: There is dissociation between respondents' wishes and reality. In order to reduce this dissociation, strategies have to be found, such as greater involvement of health care professionals in advance care planning and development of advance directives document