Comunicación de la verdad en oncología desde la visión de la bioética médica / Communication of the truth in oncology from the perspective of medical bioethics

RESUMEN Introducción: La relación médico paciente en oncología se basa en el respeto por la vida, unido de forma constante en la aceptación de la vulnerabilidad y al reconocimiento de la inevitabilidad de la muerte. La comunicación de la verdad, particularmente cuando se trata de informar malas noticias, es una situación estresante, difícil y que demanda la adecuada preparación del personal de la salud. Objetivo: Comentar sobre los fundamentos de la comunicación de la verdad en las enfermedades oncológicas y los puntos relevantes en la relación médico paciente. Desarrollo: Comunicar la verdad entraña varios dilemas éticos en oncología y a veces la información se maneja incorrectamente por el equipo médico. El consenso es no mentir, sin normas rígidas, "ocultar la verdad" y la "conspiración del silencio"; no son del todo errados, el profesional de la salud debe respetar el derecho del paciente de estar informado y a su autonomía, lo que facilitará la toma de decisiones. La relación médico paciente ya cede el terreno a formas más personalistas de relación y el respeto a la libertad individual. Conclusiones: Los fundamentos de la comunicación de la verdad en la enfermedad oncológica, se basan en los principios de la ética y bioética médica, la verdad garantiza una comunicación transparente y enriquecedora. Los puntos relevantes de la RMP consisten en lograr la adecuada alianza terapéutica entre el médico y paciente, en la mejora de su calidad de vida.

ABSTRACT Introduction: The doctor-patient relationship in oncology is based on respect for life, constantly linked to the acceptance of vulnerability and the recognition of the inevitability of death. The communication of the truth, particularly when it comes to reporting bad news, is a stressful and difficult situation that requires the proper preparation of health personnel. Objective: To comment the fundamentals of the communication of the truth in oncological diseases and the relevant points in the doctor-patient relationship. Development: Communicating the truth involves several ethical dilemmas in oncology and sometimes the medical team handles the information incorrectly. The consensus is not to lie, without rigid rules, "hide the truth" and the "conspiracy of silence"; are not entirely wrong, the health professional must respect the patient's right to be informed and their autonomy, which will facilitate decision-making. The doctor-patient relationship is already giving way to more personal forms of relationship and respect for individual freedom. Conclusions: The fundamentals of the communication of the truth in oncological disease are based on the principles of medical ethics and bioethics, the truth guarantees a transparent and enriching communication. The relevant points of the doctor patient relationship consist of achieving the adequate therapeutic alliance between the doctor and the patient, in order to improve their quality of life.

Avoidant Coping of the Decision-Making Process on the Location of Care in Old Age: A Possible Conspiracy of Silence?

The conspiracy of silence is extremely important due to both its high incidence and its consequences. This process usually occurs in situations of palliative care, or death; however, this concept is also mentioned in the literature linked to other contexts. Therefore, our objective was to study whether the conspiracy of silence may be extrapolated to the context of decision-making on the location of care in old age. To this end, we first analyzed the in-depth semi structured qualitative interviews conducted with older people, caregivers, and professionals, about decision-making on the location of care in old age. Subsequently, a comparative analysis was performed between the basic elements of the conspiracy of silence and this decision-making. Our findings revealed an avoidance process developed by all three groups. Furthermore, this decision-making presents similarities with the conspiracy of silence in the process of avoidance coping and denial that is developed. However, there are significant differences, as information is not withheld from the older person, who has an active attitude in the process of avoidance. Decision-making on the location of care in old age does not exactly match the conspiracy of silence process, but it does seem to correspond to a pact of silence.

Dialéctica de la esperanza en pacientes con pronóstico de vida limitado. Aspectos éticos y narrativos / Dialectic of hope in patients with a limited life expectancy. Ethical and narrative aspects

El derecho del paciente a conocer su información clínica se corresponde con el deber del profesionalsanitario, en especial del médico responsable de su atención, a proporcionárselo. Sin embargo, en el casode los enfermos cuyo pronóstico de vida es limitado, esto presenta varias dificultades. Determinar el con-tenido de este derecho es complicado, porque depende de las circunstancias. Esto favorece la conspiraciónde silencio, cuya causa principal puede cifrarse en el mantenimiento de la esperanza del paciente. Ahorabien, condenar al paciente a una falsa esperanza impide que éste elabore un proceso de duelo, que exigerenunciar a aquélla y abrirse a otra esperanza indeterminada de contenido abierto. En este trabajo trata-mos de bosquejar la estructura de este proceso dialéctico, que puede explicarse, en términos narrativos, através de la estructura del mito heroico, que resulta operativo aun cuando falte la estructura energéticadel carácter moral y que es graduable a la medida de cada persona.(AU)

The patient’s right to know his/her clinical information corresponds with the duty of the health careprofessional, especially the physician responsible for his/her care, to provide it. However, in the case of pa-tients whose life prognosis is limited, this presents several difficulties. Determining the content of this rightis complicated because it depends on the circumstances. This favors the conspiracy of silence, the maincause of which can be found in the maintenance of the patient’s hope. However, condemning the patientto a false hope prevents him/her from developing a grieving process, that requires renouncing that hopeand embracing another undetermined hope of open content. In this work we try to outline the structure of this dialectical process, which can be explained, in narrative terms, through the structure of the heroicmyth, which is functional even when the energetic structure of the moral character is missing and which isadjustable for each person.(AU)

Pacto de silencio y derecho a la información en pacientes gravemente enfermos. Escribiendo el último capítulo de la vida / Pact of silence and right to information in seriously ill patients. Writing the last chapter of life

Hoy nadie duda, al menos en los países de tradición occidental, de que el titular del derecho a la información clínica es el paciente sobre cuya salud versa dicha información, como ha sido institucionalmente reconocido en distintas leyes e instrumentos internacionales. Sin embargo, es todavía posible constatar ciertas prácticas que van en sentido contrario a este común asenso; señaladamente, aquella que, con un sesgo paternalista, omite la obligación de informar adecuadamente al enfermo al que se le ha diagnosticado una enfermedad grave con un pronóstico de vida limitado. Aunque son variadas las razones habitualmente invocadas para justificar esta reticencia, se puede afirmar que, en el fondo, todas concurren al objetivo de que el paciente no pierda la esperanza de recobrar la salud. En este estudio tratamos de poner de manifiesto que este objetivo priva al paciente de la oportunidad de escribir con sentido el último capítulo de su vida y de sentir el aliento de una esperanza nueva y verdaderamente libre, ocasionándole un perjuicio mayor que el que se le trata de evitar (AU)

Today no one doubts, at least in Western countries, that the holder of the right to clinical information is the patient whose health as has been institutionally recognized in several laws and international instruments. However, it is still possible to observe certain practices that go against this common assumption; particularly those that, with a paternalistic bias, omit the ob-ligation to provide adequate information to the patient who has been diagnosed with a serious illness with a limited life prognosis. Although the reasons usually invoked to justify this reti-cence are varied, it can be affirmed that, in the end, they all concur with the objective that the patient should not lose hope of recovering his or her health. The aim of this paper is to show that this objective deprives the patient of the opportunity to write meaningfully the last chap-ter of his or her life and to find the strength of a fresh and truly free hope, thus causing a greater harm than the one it is intended to prevent (AU)

Avui ningú dubte, almenys als països de tradició occidental, que el titular del dret a la informació clínica és el pacient sobre la salut del qual versa aquesta informació, com ha estat institucionalment reconegut en diferents lleis i instruments internacionals. No obstant això, és encara possible constatar certes pràctiques que van en sentit contrari a aquest comú consens; senyaladament, aquella que, amb un biaix paternalista, omet l'obligació d'informar adequadament el malalt al qual se li ha diagnosticat una malaltia greu amb un pronòstic de vida limitat. Encara que són variades les raons habitualment invocades per a justificar aquesta reticència, es pot afirmar que, en el fons, totes concorren a l'objectiu que el pacient no perdi l'esperança de recobrar la salut. En aquest estudi tractem de posar de manifest que aquest objectiu priva al pacient de l'oportunitat d'escriure amb sentit l'últim capítol de la seva vida i de sentir l'alè d'una esperança nova i veritablement lliure, ocasionant-li un perjudici major que el que se li tracta d'evitar (AU)

Hypertension management: experiences, wishes and concerns among older people-a qualitative study.

OBJECTIVES: Sixty-five per cent of older people have hypertension, but little is known about their preferences and concerns regarding hypertension management. Guidelines on hypertension lack consensus on how to treat older people without previous cardiovascular disease (CVD). This asks for explicit consideration of patient preferences in decision making. Therefore, the aim of this study was to explore older peoples' experiences, preferences, concerns and perceived involvement regarding hypertension management. DESIGN: Qualitative interview study. SETTING: Participants were selected from 11 general practitioner (GP) practices in the Netherlands and purposively sampled until data saturation was achieved. Semistructured interviews were conducted, audio recorded and analysed by two researchers using thematic analysis. PARTICIPANTS: Fifteen community dwelling older people aged 74-93 years with hypertension and without previous CVD participated. RESULTS: Interviewees rarely started the conversation about hypertension management with their GP, although they did have concerns. Reasons for not discussing the subject included low priority of hypertension concerns, reliance on GPs or trust in GPs to make the right decision on their behalf. Also, interviewees anticipated regret of reducing medication, fearing vascular incidents. Interviewees would like to discuss tailoring treatment to their needs, deprescription of medication and ways to reduce side effects. They expected GPs to be more transparent on treatment effects. CONCLUSION: Older people describe having little involvement in hypertension management, although they have several concerns. Since GPs are also known to be hesitant to bring up this subject, we signal a conspiracy of silence about antihypertensive medication. Through breaking this silence, GPs can facilitate shared decision-making on hypertension management and better tailored care.

Despedida silenciada: equipe médica, família, paciente: cúmplices da conspiração do silêncio / Silenced farewell: medical staff, family, patient: accomplices in the conspiracy of silence

A comunicação, mesmo ao fim da vida, é ferramenta importante. Ter informações sobre diagnóstico e prognóstico permite que pacientes e família vivenciem esse período de forma menos dolorosa. Quando se estabelece o pacto ou conspiração do silêncio, isso já não é possível. O pacto do silêncio é descrito como um acordo implícito ou explicito, por parte dos familiares, amigos e profissionais, de alterar a informação ao paciente com a finalidade de ocultar o diagnóstico ou a gravidade da situação. Esse tema é importante perante a incidência ainda elevada desse pacto na atualidade e pelas consequências dele. Este artigo teórico tem o objetivo de discorrer sobre este tema com base na pesquisa bibliográfica de estudos originais que apontam as causas, consequências e indicam possíveis estratégias de intervenções que estão sendo utilizadas para diminuir a incidência do pacto. Porém ainda são necessárias mais intervenções naquele sentido, pois, ainda hoje, se vivenciam mortes solitárias e despedidas silenciadas.

Communication, even at the end of life, is an important tool. Having information on diagnosis and prognosis lessens the pain for patients and their families. When we establish the pact or conspiracy of silence, this is no longer possible. The pact of silence is described as an implicit or explicit agreement on part of family members, friends and professionals. They agree to omit information from the patient in order to hide the diagnosis and/or the severity of the situation. This topic is important due to the high incidence of this pact today and the consequences of it. This theoretical paper aims to discuss this topic based on the bibliographical research of original studies that point to the causes and consequences and that indicate possible strategies of interventions that are being used to reduce the incidence of the pact. But there is still a need for more interventions because, even today, we experience lonely deaths and silent farewells.

Despedida silenciada: equipe médica, família, paciente – cúmplices da conspiração do silêncio / Silenced farewell: medical staff, family, patient –accomplices in the conspiracy of silence

A comunicação, mesmo ao fim da vida, é ferramenta importante. Ter informações sobre diagnóstico e prognóstico permite que pacientes e família vivenciem esse período de forma menos dolorosa. Quando se estabelece o pacto ou conspiração do silêncio, isso já não é possível. O pacto do silêncio é descrito como um acordo implícito ou explicito, por parte dos familiares, amigos e profissionais, de alterar a informação ao paciente com a finalidade de ocultar o diagnóstico ou a gravidade da situação. Esse tema é importante perante a incidência ainda elevada desse pacto na atualidade e pelas consequências dele. Este artigo teórico tem o objetivo de discorrer sobre este tema com base na pesquisa bibliográfica de estudos originais que apontam as causas, consequências e indicam possíveis estratégias de intervenções que estão sendo utilizadas para diminuir a incidência do pacto. Porém ainda são necessárias mais intervenções naquele sentido, pois, ainda hoje, se vivenciam mortes solitárias e despedidas silenciadas.(AU)

Communication, even at the end of life, is an important tool. Having information on diagnosis and prognosis lessens the pain for patients and their families. When we establish the pact or conspiracy of silence, this is no longer possible. The pact of silence is described as an implicit or explicit agreement on part of family members, friends and professionals. They agree to omit information from the patient in order to hide the diagnosis and/or the severity of the situation. This topic is important due to the high incidence of this pact today and the consequences of it. This theoretical paper aims to discuss this topic based on the bibliographical research of original studies that point to the causes and consequences and that indicate possible strategies of interventions that are being used to reduce the incidence of the pact. But there is still a need for more interventions because, even today, we experience lonely deaths and silent farewells.(AU)

Psicodrama y sociodrama transgeneracional / Psicodrama e sociodrama transgeracional / Trans-generational psychodrama and sociodrama

Tras una introducción acerca del concepto de transmisión transgeneracional del trauma colectivo, se detalla y analiza un sociodrama en relación a la figura del dictador Franco, desde los elementos emocionales y técnicos.

Após uma introdução breve do conceito de transmissão transgeracional do trauma coletivo, apresentamos e analisamos os aspectos emocionais e técnicos de um sociodrama relacionado à figura do ditador Franco.

After a short description of trans-generational transmission of collective trauma, we present and analyse the emotional and technical aspects of a Sociodrama related to the figure of Franco the dictator.

A conspiração do silêncio no ambiente hospitalar: quando o não falar faz barulho / A conspiracy of silence in the hospital environment: when the talk is not noise

O presente estudo traz em seu contexto a abordagem do silêncio como forma de expressão no ambiente hospitalar, suas várias facetas e presentificações. Objetivou-se avaliar de que forma o silenciar apresenta-se entre paciente, família e equipe diante de um diagnóstico, tratamento ou terminalidade. No total foram dez participantes, seus familiares e equipe multiprofissional envolvida. Tomou-se um questionário semiestruturado para poder se ter um norte do que seria levantado para responder aos questionamentos e hipóteses criadas inicialmente. Nos resultados observou-se que em momentos o silêncio aparece como proteção seja do familiar, do paciente ou da equipe; em outros momentos como uma forma de expressão que faz barulho; ora como uma escolha, ora como uma imposição. Mas em todos os momentos percebe-se que o silêncio vem camuflar ou maquiar uma situação que traz consigo dor, angústias e medos diante do desconhecido ou da certeza inaceitável. Pode-se considerar que através da busca em tentar compreender como e por que acontece o silêncio, obtiveram-se ricas demonstrações da fragilidade humana diante de si e do outro; diante da saúde e doença; diante da vida e da morte.(AU)

This study brings into context the approach of silence as a form of expression in a hospital environment, its various facets and presentificações. To assess how the silence presents itself between the patient, family and staff before a diagnosis, treatment or terminal. A total of ten participants, their families and the multidisciplinary team involved. Became a semi - structured to be able to have a north that would be raised to answer the questions and hypotheses initially created. There was a silence that at times appears to be protective of the family of the patient or staff, and other times as a form of expression that makes noise, sometimes as a choice, either as an imposition. But at all times realize that silence comes camouflaging or disguising a situation that brings pain, anguish and fears of the unknown or certainly unacceptable. By looking at trying to understand how and why the silence happens, we obtained a rich demonstration of human frailty in the face of self and others, on health and disease, with life and death.(AU)