En busca del buen morir / In search of a good death

La muerte siempre ha generado desconcierto, por lo que acompañar en este proceso de final de vida conlleva un alto compromiso existencial. Si a esta difícil tarea se le agregan los condicionantes hospitalarios o legales que sufren los enfermos en su agonía, estamos ante una muerte aterradora, muy distante de una partida que pueda ser considerada amorosa. Como sabemos, la palabra "clínica" hace referencia a la práctica de atender al pie de la cama del paciente, aliviando el dolor del que está por partir; sin embargo, el "corsé legal" de la muerte está alejando al médico de aquel que debiera recibir toda su atención y sus cuidados, atándole el brazo para acompañarlo en el buen morir. Deberíamos debatir y acordar una estrategia que enriquezca la experiencia del momento final de la vida, de modo que ese conjunto acotado de pacientes pueda elegir su forma de partir. Es de un valor incalculable despertar la compasión en este tema tan importante que preocupa al ser humano desde los inicios de la civilización. Sería muy fructífero que aprovechemos la transmisión de sabiduría de siglos de antiguas culturas que han sabido cuidar con humildad la vida hasta el instante de morir. (AU)

Death has always implied confusion, so accompanying this end-of-life process entails a highexistential commitment. If we add to this difficult task the hospital or legal constraints suffered bypatients in their agony, we are facing a terrifying death, very far from a departure that can be considered a loving one. As we know, the word "clinical" refers to the practice of caring for the patient very close to the bed, alleviating the pain of whom is about to leave; however, the "legal corset" of death is separating the doctor from the one who should receive all his attention and care, preventing him from accompanying the pacient in his/her good dying. We should discuss and agree on a strategy that enriches the experience of the end of life, so that patients could choose the way to leave. It is of incalculable value to awaken compassion on this important issue that has concerned human since the beggining of civilization. It would be very fruitful if we take advantage of the enormous wisdom of ancient cultures that have humbly cared for life until the moment of death. (AU)

Physician-Assisted Suicide for Patients with Head and Neck Cancer.

A retrospective observational cohort study was conducted using data from Oregon's Death with Dignity Act (DWDA) to characterize patients with head and neck cancer (HNC) who seek physician-assisted suicide (PAS). Between 1998 and 2018, a total of 57 patients with HNC received DWDA prescriptions, of whom 39 (68.4%) died by administration of the prescribed medication. There were no associated complications with medication administration. The most commonly involved subsites were oral cavity (33.3%) and oropharynx (30.8%), and the most commonly cited end-of-life concerns were loss of ability to engage in activities that make life enjoyable (79.5%) and loss of autonomy (74.4%). There were no differences in age, race, marital status, or hospice enrollment rates between patients with HNC who died by administration and those who were prescribed but did not administer the medication. Patients who died by administration were generally less educated as compared to those who were prescribed but did not administer the medication (P = .015).

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.

Characterizing 18 Years of the Death With Dignity Act in Oregon.

Importance: Numerous states have pending physician-aided dying (PAD) legislation. Little research has been done regarding use of PAD, or ways to improve the process and/or results. Objectives: To evaluate results of Oregon PAD, the longest running US program; to disseminate results; and to determine promising PAD research areas. Design, Setting, and Participants: A retrospective observational cohort study of 991 Oregon residents who had prescriptions written as part of the state's Death with Dignity Act. We reviewed publicly available data from Oregon Health Authority reports from 1998 to 2015, and made a supplemental information request to the Oregon Health Authority. Main Outcomes and Measures: Number of deaths from self-administration of lethal medication versus number of prescriptions written. Results: A total of 1545 prescriptions were written, and 991 patients died by using legally prescribed lethal medication. Of the 991 patients, 509 (51.4%) were men and 482 (48.6%) were women. The median age was 71 years (range, 25-102 years). The number of prescriptions written increased annually (from 24 in 1998 to 218 in 2015), and the percentage of prescription recipients dying by this method per year averaged 64%. Of the 991 patients using lethal self-medication, 762 (77%) recipients had cancer, 79 (8%) had amyotrophic lateral sclerosis, 44 (4.5%) had lung disease, 26 (2.6%) had heart disease, and 9 (0.9%) had HIV. Of 991 patients, 52 (5.3%) were sent for psychiatric evaluation to assess competence. Most (953; 96.6%) patients were white and 865 (90.5%) were in hospice care. Most (118, 92.2%) patients had insurance and 708 (71.9%) had at least some college education. Most (94%) died at home. The estimated median time between medication intake and coma was 5 minutes (range, 1-38 minutes); to death it was 25 minutes (range, 1-6240 minutes). Thirty-three (3.3%) patients had known complications. The most common reasons cited for desiring PAD were activities of daily living were not enjoyable (89.7%) and losses of autonomy (91.6%) and dignity (78.7%); inadequate pain control contributed in 25.2% of cases. Conclusions and Relevance: The number of PAD prescriptions written in Oregon has increased annually since legislation enactment. Patients use PAD for reasons related to quality of life, autonomy, and dignity, and rarely for uncontrolled pain. Many questions remain regarding usage and results, making this area suitable for cancer care delivery research.

Acerca de las directivas médicas anticipadas en la legislación nacional argentina / About advance medical directives in the Argentine national legislation

Las directivas anticipadas constituyen una oferta relativamente reciente. La novedad, genera dudas diversas en la esfera asistencial. Se duplica el artículo, publicado el 23 de junio de 2016 en la Revista Microjuris(MJ-DOC-9927-AR | MJD9927) y basado en la disertación que efectuará el autor el 6 de agosto de 2015 en la Facultad de Ciencias Jurídicas y Sociales (UNLP) durante el Seminario intensivo Bioética y nuevo Código Civil y Comercial Argentino

Desarrollos recientes en la jurisprudencia sobre el derecho a morir / Recent case law about the right to die

This paper reviews the sentences dictated between 1993 and 2002 by the Supreme Courts of Canada and the Unites States, the House of Lords and Supreme Court of the United Kingdom and the European Human Rights Court, about the validity of the legal prohibition of assistance for suicide. These sentences constituted a judicial consensus about the right to die. This consensus recognized the legal right of patients to reject medical treatments but did not recognize the right to be assisted by a physician to commit suicide. This exclusion is changing in the recent case law of Canada and the United Kingdom, which accepts the fundamental right of terminal patients to medically assisted suicide.

Sedación agónica en niños: ¿es moralmente ética?

La sedación en la agonía (S.A) resulta una práctica profesional aplicable a todos aquellos enfermos que en pocos días u horas irremediablemente transitan el camino hacia la muerte y que por otro lado, presentan síntomas molestos e incontrolables de diverso orden, tales como dolor insoportable, disnea severa, desasosiego o hemorragias. Su aplicabilidad está demostrada y avalada por asociaciones de cuidados paliativos del orden nacional e internacional y su alcance llega a todos los individuos con enfermedades crónicas, progresivas, incurables y en fase terminal, de todas las edades, en quienes los intentos por aliviar síntomas molestos no ha cumplido su cometido, habiendo llevado de modo previo medidas habituales o progresivas para el control de las manifestaciones desagradables, que producen disconfort e indignidad a la hora de morir. En base a los principios extraídos de la deontología médica y de la bioética, que regulan las praxis profesionales, la S.A ha de aplicarse siempre sobre las bases de la refractariedad del síntoma, la definición inequívoca de terminalidad de la enfermedad, sustentándose en sólidas bases de la relación médico paciente, respetando a ultranza el consentimiento informado y apoyándose por fin en el acabado conocimiento de farmacocinética y dinámica de los medicamentos empleados durante su aplicación. Existen controversias y sensaciones desencontradas en la sociedad respecto de la superposición de la técnica de S.A, con formas de eutanasia (pasiva- activa-slow eutanasia), sin embargo la práctica bien entendida y argumentada da por resultado una sensación de “buen morir” y de respeto por la dignidad del ser sufriente. Toda vez que el paciente agónico, en ejercicio de su autonomía lo requiera, la técnica puede y debe ser aplicada

ABSTRACT: The sedation in the agony (S.A) turns out to be a professional practice applicable to all those patients that in a few days or hours irremediably travel the way towards the death and that on the other hand, they present troublesome and uncontrollable symptoms, of diverse order such as unbearable pain, severe difficulty in breathing, uneasiness or hemorrhages. His applicability is demonstrated and supported by associations of taken care palliative of national and international order and his scope comes to all the individuals with chronic, progressive, incurable diseases and in terminal phase, of all the ages, in whom the attempts for relieving troublesome symptoms it has not fulfilled his assignment having led to forward the habitual or progressive measures for the control of the disagreeable manifestations, which produce Indignity at the moment of dying.On the basis of the principles extracted from the medical business ethics and from the bioética, which regulate the professional practices, the S.A it has to be applied always on the bases of the refractariedad of the symptom, the unequivocal definition of terminalidad of the disease, being sustained in solid bases of the relation medical patient, respecting extreme the informed assent and resting finally on the finished knowledge of farmacocinética and dynamics of the medicines used during his application

[End of life, promoting the collegial procedure]. / Fin de vie, promouvoir la procédure collégiale.

The "Leonetti" law introduced the need for a collegial procedure to approach the decision to limit or stop treatment. Collegiality is not easy in daily professional practice. There are cultural and institutional obstacles, specific to caregivers. Interdisciplinary meetings can be put in place in order to support the lead doctor and to ensure the decisions taken are the best for the patient's particular situation.