Juan Pedro Alonso

Learning from the public: Citizens describe the need to improve access, provision and recognition of end-of-life care in a population-based study from seven countries in Europe

Background: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. Methods: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, the Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. Results: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. Conclusions: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery.

Cuidados paliativos: entre la humanización y la medicalización del final de la vida

This paper analyzes the palliative care of terminal patients, examining the tensions between the humanization of care and the progressive medicalization at the end-of-life situation. The research upon which the article is based adopts a qualitative methodological approach derived from interviews with professionals and patients and ethnographic observations in a palliative care unit in the City of Buenos Aires, Argentina. The article describes the configuration of personalized and comprehensive health care based on the core values of more humanized end-of-life care promoted by palliative care supporters. Similarly, the paper analyzes how these practices are assisted by progress in the medicalization process in which the dimension of care is considered less an unprofessional area of medical practice than an area of care in which specific technical skills and know-how are employed. The articles explores how instead of being divergent, the logic of care and medicalization work in a complementary fashion.

Transmissão de diagnóstico em psiquiatria e atribuição de identidades: perspectivas dos profissionais

La sociologia de la salud y la antropologia medica han tematizado extensamente las consecuencias de los diagnosticos en la vida de las personas. Sin embargo, el proceso por medio del cual los diagnosticos se transmiten constituye un aspecto poco abordado de la practica medica. El objetivo de este articulo es analizar la perspectiva de profesionales acerca de la transmision de diagnosticos psiquiatricos: si hacerlo o no, cuando y como, entre otras dimensiones. A partir de datos provenientes de dos investigaciones, basadas en entrevistas en profundidad con psiquiatras de la ciudad de Buenos Aires, el articulo sostiene que la decision de comunicar o no el diagnostico depende del sentido que los profesionales atribuyen a las categorias diagnosticas. Las dudas que caracterizan el acto de transmision son parte de las dificultades de asumir el paradigma de la enfermedad libre de valoraciones subjetivas.

Transmisión del diagnóstico en psiquiatría y adscripción de identidades: perspectivas de los profesionales

La sociologia de la salud y la antropologia medica han tematizado extensamente las consecuencias de los diagnosticos en la vida de las personas. Sin embargo, el proceso por medio del cual los diagnosticos se transmiten constituye un aspecto poco abordado de la practica medica. El objetivo de este articulo es analizar la perspectiva de profesionales acerca de la transmision de diagnosticos psiquiatricos: si hacerlo o no, cuando y como, entre otras dimensiones. A partir de datos provenientes de dos investigaciones, basadas en entrevistas en profundidad con psiquiatras de la ciudad de Buenos Aires, el articulo sostiene que la decision de comunicar o no el diagnostico depende del sentido que los profesionales atribuyen a las categorias diagnosticas. Las dudas que caracterizan el acto de transmision son parte de las dificultades de asumir el paradigma de la enfermedad libre de valoraciones subjetivas.

Derechos en el final de la vida: el rechazo de tratamientos médicos en los tribunales argentinos

This paper addresses the judicialization of end of life medical decision-making, as part of the advance of the justice system in the regulation of medical practice and the rise of recognition of patient autonomy. The article analyzes, from a sociological standpoint, legal decisions regarding treatment refusal at the end of life produced by the Argentine courts between 1975 and 2015. Based on a qualitative design, 38 sentences collected from jurisprudential databases using key terms were analyzed. First, judicialized cases during the period are described; these are characterized by a high proportion of claims presented by health institutions, a pro-treatment bias in the legal actions requested, and a high percentage of unnecessary litigation in the absence of conflicts or in situations that do not require court intervention. Second, legal and extralegal factors affecting the justiciability of decisions to refuse or withdraw medical treatments, such as changes in the law and processes of politicization of claims, are analyzed.

Communicating psychiatric diagnoses and identities: professionals’ perspectives

La sociologia de la salud y la antropologia medica han tematizado extensamente las consecuencias de los diagnosticos en la vida de las personas. Sin embargo, el proceso por medio del cual los diagnosticos se transmiten constituye un aspecto poco abordado de la practica medica. El objetivo de este articulo es analizar la perspectiva de profesionales acerca de la transmision de diagnosticos psiquiatricos: si hacerlo o no, cuando y como, entre otras dimensiones. A partir de datos provenientes de dos investigaciones, basadas en entrevistas en profundidad con psiquiatras de la ciudad de Buenos Aires, el articulo sostiene que la decision de comunicar o no el diagnostico depende del sentido que los profesionales atribuyen a las categorias diagnosticas. Las dudas que caracterizan el acto de transmision son parte de las dificultades de asumir el paradigma de la enfermedad libre de valoraciones subjetivas.

El tratamiento del dolor por cáncer en el final de la vida: estudio de caso en un servicio de cuidados paliativos de la Ciudad Autónoma de Buenos Aires

Cancer pain relief has been defined as a worldwide public health challenge in the last decades and has recently been included in public debates as a human rights issue. However, barriers to the provision of adequate pain management continue to exist. This article analyzes the cancer pain treatment provided in a palliative care setting in the Autonomous City of Buenos Aires, focusing on how professionals and patients implement and negotiate the terms and adherence to the pain treatment. Based on a qualitative approach that triangulates data from semi-structured interviews and from ethnographic observations, the article addresses the way pain is measured and assessed and the strategies of health professionals in establishing pain treatment protocols. The article also describes the rhetoric regarding the right to pain relief developed by health professionals through their practice and discusses the limitations of that rhetoric.Cancer pain relief has been defined as a worldwide public health challenge in the last decades and has recently been included in public debates as a human rights issue. However, barriers to the provision of adequate pain management continue to exist. This article analyzes the cancer pain treatment provided in a palliative care setting in the Autonomous City of Buenos Aires, focusing on how professionals and patients implement and negotiate the terms and adherence to the pain treatment. Based on a qualitative approach that triangulates data from semi-structured interviews and from ethnographic observations, the article addresses the way pain is measured and assessed and the strategies of health professionals in establishing pain treatment protocols. The article also describes the rhetoric regarding the right to pain relief developed by health professionals through their practice and discusses the limitations of that rhetoric.