Las competencias comunes en el sistema de formación sanitaria especializada. Aprendiendo comunicación clínica y bioética a partir de la reflexión sobre la actividad clínica cotidiana / Common competences in the specialised health training system. Learning clinical communication and bioethics from the reflection on daily clinical activity

Es necesaria la búsqueda de una metodología y de herramientas para facilitar el aprendizaje práctico de las competencias comunes o transversales por los especialistas en formación. Para ello son deseables propuestas que orienten a partir de la experiencia docente en la clínica, al lado del paciente, como punto de partida. Se plantea como ejemplo el aprendizaje de la toma de decisiones compartidas al final de la vida con los representantes de pacientes incapaces, con el pronóstico, la fragilidad y los valores como guías para la toma de decisiones. Saber cómo proceder ante un paciente incapaz es una de las competencias que se deben adquirir dentro de la formación transversal de las especialidades en ciencias de la salud. En este trabajo, la reflexión sobre la experiencia vivida con una residente en la atención a una paciente incapaz permite abordar con una mejor estructuración la conversación difícil con el familiar de un segundo paciente incapaz. Enunciar de forma explícita detalles aparentemente conocidos o intrascendentes ayuda a sistematizar los procesos de cara a la mejora de éstos, su aprendizaje en la cabecera del paciente y su evaluación formativa. Se plantea una propuesta práctica sobre la que seguir trabajando, utilizando como apoyo la narrativa clínica.(AU)

It is necessary to find a methodology and tools to help specialists undergoing training learn the practical aspects of common or cross-disciplinary competences. To this end, it would be preferable to start out with proposals that provide guidance based on the teaching experience in the clinic, alongside the patient. An example could be learning about end-of-life decision-making shared with representatives of incapacitated patients, taking prognosis, frailty and values as guides to decision-making. Knowing how to deal with an incapacitated patient is one of the competences to be acquired as part of the cross-disciplinary training in health sciences specialties. In this paper, reflecting on the experience of a resident in the care of an incapacitated patient allows for a better structured approach to the difficult conversation with the relative of a second incapacitated patient. Explicitly stating seemingly known or inconsequential details helps to systematise processes aimed at improving them, learning at the bedside and formative evaluation. A practical proposal for further work is put forward, using clinical narrative as a support.(AU)

Seguimiento de pacientes con esclerosis lateral amiotrófica por un equipo de cuidados paliativos domiciliario / Follow-up of patients with amyotrophic lateral sclerosis by a home palliative care team

Antecedentes y objetivo: Pocos estudios describen el final de la vida de los pacientes con esclerosis lateral amiotrófica (ELA). Nuestro objetivo principal fue describir la trayectoria final de vidade pacientes con ELA seguidos por un equipo de soporte cuidados paliativos domiciliario (equipode soporte de atención paliativa domiciliaria [ESAPD]). El objetivo secundario fue examinar losfactores asociados con el lugar de muerte y supervivencia.Ámbito y diseño: Estudio observacional retrospectivo en una cohorte de pacientes diagnosticadoscon ELA y seguido por un ESAPD. Se analizaron variables sociodemográficas, la supervivenciadesde el inicio de la ventilación, supervivencia desde el inicio de la gastrostomía, consumode recursos sanitarios, uso de opioides, planificación anticipada de decisiones (PAD), lugar demuerte y causa de muerte.Resultados: Se incluyeron 60 pacientes. Los principales síntomas fueron disnea y disfagia. LaPAD fue trabajada en el 83 % de los pacientes. Cincuenta y dos (83 %) pacientes murieron endomicilio o en una unidad de cuidados paliativos. Se requirieron opioides durante las últimas24 h en el 47 % de los pacientes. La causa de muerte fue por insuficiencia respiratoria, infección respiratoria, muerte durante el sueño y rechazo del tratamiento para el 47, 16, 15 y 15 %respectivamente. El 25 % requirieron sedación paliativa. La supervivencia media desde el iniciode la alimentación enteral, la ventilación mecánica no invasiva y la ventilación invasiva fue de 7, 13 y 12 meses, respectivamente. El número promedio de visitas del ESADP fue de 14 (DE:12). Haber recibido información y no haber sido ingresado en el hospital durante el periodode estudio se asoció con un aumento significativo de la probabilidad de morir en el domicilio.Conclusiones: La causa de muerte más frecuente fue la insuficiencia respiratoria, que en la mayoría de los casos requirió tratamiento con opioides. Uno de cada 4 pacientes requirió sedación paliativa. (AU)

Background and objectives: Few studies have reported end of life for patients with amyotrophiclateral sclerosis (ALS). Our main objective was to describe the end-of-life trajectory of patientsmonitored by a palliative home care team (PHTC). The secondary objective was to examinefactors associated with place of death and survival.Setting and design: A retrospective, observational study in a cohort of patients diagnosed withALS followed by a PHCT. Sociodemographic variables, survival from start of ventilation andgastrostomy, use of health resources, opioid use, care planning, place of death, and cause ofdeath were analyzed.Results: Sixty patients were included. Main symptoms included dyspnea and dysphagia. Advancecare planning was possible for 83 %. Fifty-two (83 %) died at home or in a palliative care unit.The cause of death was respiratory failure, respiratory infection, death during sleep, and refusalof treatment for 47 %, 16 %, 15 % and 15 %, respectively. Opioids were required in 47 %, and 25 %needed palliative sedation. Average survival from start of enteral feeding, noninvasive mechanical ventilation, and invasive ventilation was 7, 13 and 12 months, respectively. Average of visitswas 14 (SD 12). Having received informal support and not having been admitted to hospitalduring the study period were associated with a significantly increased rate of dying at home.Conclusions: The most frequent cause of death was respiratory failure, most cases requiredopioids, and one out of every four needed palliative sedation. Most died at home. (AU)

[Knowledge and attitudes of health professionals towards advance directives]. / Grado de conocimiento y actitudes de los profesionales sanitarios sobre el documento de voluntades anticipadas.

OBJECTIVE: To evaluate the degree of knowledge and attitudes of medical and nursing professionals in two health departments to advance directives, as well as to examine their association with the sociodemographic and occupational variables of the professionals. METHODS: A cross-sectional survey on 329 health professionals was carried out through the internet and a standardised procedure. The knowledge and attitudes of the professionals about advance directives were examined using two validated questionnaires of 17 and 12 items, respectively. Sociodemographic and professional data were also collected from the participants. RESULTS: 45% of the professionals were physicians, with X¯=13,1 (SD: 8.3) years of professional experience. Sixty-seven point five percent were women and the mean age was 38.9 (SD: 9.2) years. Professionals had very positive attitudes towards the advance directives document (X¯=75.37;SD: 11.97;R=0-90), although their level of knowledge about them was medium-low (X¯=9.31;SD: 2.73;R=0-18). Both the level of knowledge and self-perception were associated with previous training in palliative care, experience with document management, reading, or the demand for information. Completing the document related to self-perception of knowledge. Attitudes towards the document related to experience in its use and a positive attitude toward training. CONCLUSIONS: The professionals showed positive attitudes towards the advance directive document although low knowledge about it. Experience with the document was the only variable associated with both the knowledge and the attitudes of the professionals.

Conocimientos y actitudes de profesionales de cuidados paliativos sobre voluntades anticipadas en región metropolitana, Chile / Palliative care professionals knowledge and attitudes regarding advance directives in metropolitan region, Chile / Conhecimento e atitudes dos profissionais de cuidados paliativos em diretrizes antecipadas na região metropolitana, Chile

Las Voluntades Anticipadas (vvaa) son una herramienta recomendada para la toma de decisiones en salud al final de la vida, fundamentadas en los principios de respeto por la autonomía y de beneficencia. En Chile no son reconocidas jurídicamente y no configuran una práctica habitual, existiendo escasa literatura teórica y empírica sobre el tema. Este trabajo tiene como objetivo determinar el nivel de conocimientos y actitudes sobre las vvaa en profesionales ­médicos(as), enfermeros(as), psicólogos(as)­ de cuidados paliativos. Se realizó un estudio descriptivo trasversal por medio de un cuestionario diseñado por la investigadora. Se invitó a participar a 107 profesionales de las 19 Unidades de Cuidados Paliativos del sistema de salud público de la Región Metropolitana, con una tasa de respuesta de 76.6% (n=82). La edad media de los participantes era de 40.4 ± 12 años, 80% mujeres. El 45.1% son médicos(as), el 34.1% enfermeros(as) y 20.7% psicólogos(as).El 98.8% refiere estar muy de acuerdo con que es conveniente para las personas planificar sus deseos sobre cuidados del final de la vida ­79% y 19.8% respectivamente­. Un 87% declara haber escuchado el término de las vvaa. En cuanto a conocimientos, sobre un total de 6 preguntas, el 64.6% de los participantes contestó menos de 4 correctas. El 70.8% responde acertadamente a la definición más apropiada. Se observa un alto reconocimiento del término de las VVAA, contrastando con un nivel de conocimiento relativamente bajo sobre los elementos específicos y legislativos de las mismas. Estos resultados demuestran una actitud positiva de los participantes hacia la planificación de cuidados al final de la vida.

Advance Directives are grounded on the principles of respect for autonomy and beneficence. They are recommended in order to facilitate better health decision-making at the end of life. In Chile, they are not legally recognised, and there is limited evidence on the practice, attitudes and knowledge of Advance Directives in our setting.This study aims to determine the degree of knowledge and attitudes towards Advance Directives in palliative care professionals (medical doctors, nurses, psychologists). A descriptive cross-sectional study was carried out by means of a questionnaire specifically designed for this study by the researcher. 107 professionals from the 19 Palliative Care Units in the public healthcare system in the Metropolitan Region were invited to participate. The response rate was 76.6% (n=82). Participant's average age was 40.4 ± 12 years, and 80% were women. Among the professionals, 45.1% were physicians, 34.1% nurses and 20.7% psychologists.A 98.8% of participants agree/strongly agree ­19.8% and 79% respectively­ that it is convenient for people to plan and write their wishes about end-of-life care. The term Advance Directives has been heard by 87% of respondents. Regarding knowledge, 64.6% of the participants answered correctly less than 4 over 6 questions, and 70.8% responded correctly to the most appropriate definition of Advance Directives. The high recognition of the term Advance Directives contrasts with a relatively low level of knowledge about specific and legislative elements of this issue. These results demonstrate a positive attitude of the participants towards end-of-life care planning.

As Diretrizes Avançadas são uma ferramenta recomendada para tomar decisões de saúde no final da vida, com base nos princípios de respeito à autonomia e da beneficência. No Chile, eles não são legalmente reconhecidos e há evidências limitadas sobre a prática, atitudes e conhecimento sobre o Diretrizes Avançadas em nosso meio.O presente trabalho tem como objetivo determinar o nível de conhecimentos e atitudes sobre Diretrizes Avançadas em profissionais (médicos, enfermeiros, psicólogos) de cuidados paliativos. Um estudo descritivo transversal foi realizado por meio de um questionário elaborado pelo pesquisador. Particioaram 107 profissionais das 19 Unidades de Cuidados Paliativos do sistema de saúde pública da Região Metropolitana, com una taxa de resposta de 76.6% (n=82). A idade média de 40.4 ± 12 anos, 80% mulheres. 45.1% médicos, 34.1% enfermeiros e 20.7% psicólogos.98.8% disseram então muito de acordo/de acordo (79% e 19.8% respetivamente) que é conveniente para as pessoas planejar e escrever seus desejos em relação aos cuidados de fim de vida. 87% afirmam ter ouvido o termo Diretrizes Antecipadas. Em termos de conhecimento, de um total de 6 perguntas, 64.6% dos participantes responderam menos de 4 corretas. 70.8% respondem corretamente à definição considerada mais apropriada. Há um alto reconhecimento do termo Diretrizes Antecipadas, contrastando com um nível relativamente baixo de conhecimento sobre elementos específicos e legislativos do mesmo. Estes resultados demonstram uma atitude positiva dos participantes em relação ao planejamento dos cuidados no final da vida.

[Validation of the knowledge and attitudes of health professionals in the Living Will Declaration process]. / Validación del cuestionario de conocimientos y actitudes de los profesionales sanitarios en el proceso de declaración de voluntades vitales anticipadas.

OBJECTIVE: Evaluate the validity and reliability of the knowledge and attitudes of health professionals questionnaire on the Living Will Declaration (LWD) process. DESIGN: Cross-sectional study structured into 3 phases: (i)pilot questionnaire administered with paper to assess losses and adjustment problems; (ii)assessment of the validity and internal reliability, and (iii)assessment of the pre-filtering questionnaire stability (test-retest). LOCATION: Costa del Sol (Malaga) Health Area. January 2014 to April 2015. PARTICIPANTS: Healthcare professionals of the Costa del Sol Primary Care District and the Costa del Sol Health Agency. There were 391 (23.6%) responses, and 100 participated in the stability assessment (83 responses). MAIN MEASUREMENTS: The questionnaire consisted of 2 parts: (i)Knowledge (5 dimensions and 41 items), and (ii)Attitudes (2 dimensions and 17 items). RESULTS: In the pilot study, none of the items lost over 10%. In the evaluation phase of validity and reliability, the questionnaire was reduced to 41 items (29 of knowledge, and 12 of attitudes). In the stability evaluation phase, all items evaluated met the requirement of a kappa higher than 0.2, or had a percentage of absolute agreement exceeding 75%. CONCLUSIONS: The questionnaire will identify the status and areas for improvement in the health care setting, and then will allow an improved culture of LWD process in general population.

[Knowledge and attitudes of health professionals to the living will declaration process]. / Conocimientos y actitudes de los profesionales sanitarios en el proceso de declaración de las voluntades vitales anticipadas.

OBJECTIVE: To identify the underlying interests of the Living Will Declaration (LWD) process and to determine the consensus, using a questionnaire, of the knowledge and attitudes of health professionals. DESIGN: A study was performed in two phases using a Delphi technique with a Rand method. 1. Dimensions proposed: generation of ideas and their subsequent prioritizing; 2. Proposal and prioritizing of items grouped into blocks of Knowledge and Attitudes, developed between August 2012 and January 2013. SETTING: The work was carried out by initial telephone contact with panellists, and then later by the panellists belonged to the Andalusia Public Health System. PARTICIPANTS: The criteria for selecting the eight components of the panel were knowledge and experience in the field of the freedom of the patient in Andalusia. RESULTS: The Knowledge identified included: 1 A) Legal and general aspects; 2 A) A conceptual definition; 3 A) Standardised LWD documents: 4 A) Practical experience; 5 A) Procedure and registering of the LWDs. The second block included Attitudes: 1 B) Attitudes of the professional in the application of LWDs in clinical practice, and 2 B) Attitudes of the professional in «complex¼ ethical scenarios The 7 panellists who finally took part proposed 165 items. After applying the prioritizing criteria, scores, and scenario selection, 58 (35.2%) items were identified as suitable scenarios. CONCLUSIONS: The proposed questionnaire included wide parcels of concepts and contents that, once validated, will help to measure the training interventions carried out on health professionals in order to improve knowledge and attitudes on the subject of LWDs.

[Advanced organ failure in the elderly. Some issues from a geriatrics, palliative medicine and bioethics perspectives]. / El anciano con enfermedad avanzada de órgano. Consideraciones desde la geriatría, la medicina paliativa y la bioética.

OBJECTIVE: To analyze the literature as regards the knowledge, skills and attitudes that these disciplines can provide in improving technical, ethical and human quality health care in the elderly with advanced organ failure, multimorbidity, frailty and progressive dementia. MATERIAL AND METHODS: A comprehensive review focused on available references on the interrelationship between geriatric medicine and palliative medicine, education in bioethics, prognostic tools, functional status, and the humanization of health care. RESULTS: Advance care planning, comprehensive geriatric assessment, the study of the values of the patient and their introduction in decision-making process, as well as the need to promote moral, care, and healthcare organizational ethics, are essential elements to achieve this objective. CONCLUSIONS: Practitioners and healthcare organizations should seek excellence as a moral requirement. To achieve this, there is a priority to acquire virtues of care and fundamental concepts of geriatric and palliative medicine, assessing functional status, advance care planning and patient/family needs as essential issues to protect, care for and promote them in all care settings.

[Advance care planning and severe chronic diseases]. / Planificación anticipada de decisiones en las enfermedades crónicas avanzadas.

INTRODUCTION: Advanced care planning (ACP) helps in make decisions on the health problems of people who have lost the capacity for informed consent. It has proven particularly useful in addressing the end of life. The aim of this study was to determine the prevalence of ACP in patients with severe chronic diseases. MATERIAL AND METHODS: Review of medical records of patients with dementia, amyotrophic lateral sclerosis, Parkinson's disease, chronic obstructive pulmonary disease or interstitial lung disease, heart failure, chronic kidney disease on dialysis and cancer, all in advanced stages. We collected data on living wills or registered prior decisions by the physician according to clinical planned. RESULTS: A total of 135 patients were studied. There was a record of ACP in 22 patients (16.3%). In most of them it was planned not to start any vital treatment in the event of high risk of imminent death and lacking the ability to make decisions. Only two patients were had a legal living will. CONCLUSION: The registration of ACP is relatively low, and this can affect decision-making in accordance with the personal values of patients when they do not have the capacity to exercise informed consent.