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)

Preference for death at home and associated factors among older people in the city of Belo Horizonte, Brazil / Preferência por morrer em casa e fatores associados de pessoas idosas da cidade de Belo Horizonte, Brasil

Abstract We examined people's preferences for place of death and identified factors associated with a home death preference. We asked a representative sample (N = 400) of older people (≥ 60 years) residents in the city of Belo Horizonte, about their preferences for place of death in a situation of serious illness with less than a year to live. Data were analyzed using binomial regression to identify associated factors. 52.2% indicate home as the preferred place of death. Five variables were associated with preference for death at home: those living with 1 child (odds ratio (OR)0.41; 95% confidence interval (CI):0.18-0.92; ref: without children); being in education for up to 4 years (OR0.42; 95% CI:0.20-0.89; ref: higher education); finding it difficult to live with the present income (OR3.18; 95% CI:1.53-6.62; ref: living comfortably); self-assessed fair overall health (OR2.07; 95% CI:1.06-4.03; ref: very good health) and selecting "choosing who makes decisions about your care" as the care priority that would matter to them the most (OR2.43; 95%CI:1.34-4.40; ref: dying in the place you want). Most respondents chose home as preferred place of death. However, most residents of Belo Horizonte die in hospitals, suggesting that preferences are not being considered.

Resumo Examinamos as preferências das pessoas para o local da morte e identificamos os fatores associados com a preferência pela morte em casa. Perguntamos para uma amostra representativa (N = 400) de pessoas idosas (≥ 60 anos) residentes da cidade de Belo Horizonte, sobre suas preferências pelo local da morte numa situação de doença grave, com menos de um ano de vida. Os dados foram analisados utilizando regressão binomial para identificar os fatores associados. Indicaram a casa como o local preferido de morte, 52,2%. Cinco variáveis foram associadas à preferência por morte em casa: aqueles que vivem com 1 criança (odds ratio(OR)0,41; intervalo de confiança (CI)95%:0,18-0,92; ref: nenhuma criança); ter até 4 anos de escolaridade (OR0,42; CI95%:0,20-0,89; ref: ensino superior); ser difícil viver com o rendimento atual (OR3,18; CI95%:1,53-6,62; ref: vive confortavelmente); avaliar a sua saúde geral como razoável (OR2,07; CI95%:1,06-4,03; ref: saúde muito boa) e selecionar "escolher quem toma decisões sobre os cuidados" como a prioridade de cuidado mais importante (OR2,43; CI95%:1,34-4,40; ref: morrer no local que se quer). A maioria dos entrevistados expressaram preferência por morrer em casa. No entanto, a maioria dos residentes de Belo Horizonte morre nos hospitais, sugerindo que as preferências não estão sendo consideradas.

Expectativas de los pacientes respecto de la consulta con un médico de familia: estudio de corte transversal / Patient expectations regarding consultation with a family doctor: cross-sectional study

Antecedentes. El modelo biopsicosocial propone que la atención de la salud se centre en las necesidades de las personas.Sin embargo, no siempre los profesionales de la salud conocen adecuadamente lo que esperan de los encuentros clínicos sus pacientes. Objetivo. Explorar las expectativas respecto de sus encuentros clínicos de los/as pacientes atendidos por médicos de familia en un Centro de Salud de Atención Primaria del Conurbano Bonaerense (Buenos Aires, Argentina). Métodos. Estudio observacional descriptivo de corte transversal llevado a cabo sobre una muestra consecutiva de pacientes que acudieron a las consultas médicas de un centro de salud. Se les pidió a los pacientes que de un listado de diez potenciales expectativas, valoraran y priorizaran las más importantes para esa consulta. Resultados. Fueron entrevistadas 146 personas (91 % mujeres) con una mediana de edad de 30 años.Las expectativas más mencionadas (94 % de las personas encuestadas) fueron que el médico demuestre interés y escuche a sus pacientes, y que les brinde explicaciones sobre sus problemas y dudas. Conclusiones. Hemos podido documentar que las expectativas de nuestros pacientes respecto de sus entrevistas clínicas están muy vinculadas a su componente actitudinal (predisposición a escuchar con interés sus problemas) y al de las habilidades comunicacionales del profesional de la salud (explicaciones). (AU)

Background. The biopsychosocial model proposes that health care focus on the needs of people. However, health profes-sionals do not always know what their patients expect from clinical meetings. Objective. To explore the expectations regarding their clinical meetings of the patients attended by family doctors in aPrimary Health Care Center of Buenos Aires, Argentina. Methods. Descriptive cross-sectional observational study carried out on a consecutive sample of patients who attendedthe medical consultations of a health center. Patients were asked to rate and prioritize the most important ones for thatconsultation from a list of ten potential expectations. Results. 146 people (91 % women) with a median age of 30 years were interviewed.The most mentioned expectations (94 % of the people surveyed) were for the doctor to show interest and listen to theirpatients, and to give them explanations about their problems and doubts. Conclusions. We have been able to document that our patients' expectations regarding their clinical interviews are closelylinked to their attitudinal component (predisposition to listen with interest to their problems) and to the communication skillsof the healthcare professional (explanations). (AU)

La perspectiva del paciente del ensayo clínico / The clinical trial patient's perspective

Introducción: El reclutamiento de pacientes en ensayos clínicos es lento. Se desconoce la perspectiva de estos pacientes y las barreras que perciben para participar en estos estudios. Objetivo: Identificar la percepción de los sujetos de investigación sobre la participación en ensayos clínicos. Métodos: Estudio descriptivo transversal, realizado desde septiembre/2014 hasta septiembre/2015. Se emplearon técnicas cualitativas y cuantitativas. Se trabajó con sujetos sanos y pacientes participantes en ensayos clínicos. Se exploraran ventajas y barreras percibidas en relación con su participación e intereses. Resultados: Le confirieron importancia social al ensayo clínico. El 96,7 por ciento señaló como ventaja la oportunidad de acceder a un tratamiento. Las barreras más importantes fueron el desconocer su estado de salud (65 por ciento) y no entender lo explicado (60,8 por ciento). Al 92,5 por ciento le gustaría le informaran los resultados y el 87,5 por ciento consideró que esta sería una manera de agradecerle su participación. Conclusiones: Los sujetos sanos poseen un conocimiento básico sobre ensayos clínicos, pero insisten en la necesidad de educación y comunicación a la población. Le confieren importancia social y muestran disposición a participar aunque reconocen cierto temor y asumen una responsabilidad. Los pacientes que participan en un ensayo clínico lo consideran ventajoso pues reciben un tratamiento que puede mejorar su salud, y tienen prioridad para realizarse pruebas diagnósticas. No entienden lo que se le propone y la dificultad para acceder al sitio de investigación es señalada como posible barrera. Así mismo, los pacientes muestran un marcado interés en conocer el resultado de la investigación(AU)

Introduction: Recruitment of patients in clinical trials is slow. The perspective of these patients and the barriers that they perceive to participate in these studies are unknown. Objective: To identify the perception of research subjects about participation in clinical trials. Methods: Descriptive cross-sectional study carried out from September 2014 to September 2015. Qualitative and quantitative techniques were used. Healthy subjects and participant patients in clinical trials were involved. Advantages and perceived barriers were analyzed in terms of their participation and interests. Results: The participants attached some social importance to the clinical trial. In the group, 96.7 percent pointed out that the opportunity to have access to a treatment was an advantage. The most important barriers were ignoring their health status (65 percent) and not understanding the explanations provided (60.8 percent). On the other hand, 92.5 percen would like to be informed about the results and 87.5 percent felt that the aforementioned would be a way of thanking them for their participation. Conclusions: Healthy subjects have a basic knowledge of clinical trials, but they insist on the need for education of and communication with the population. They attach social importance to the participation in clinical trials and are willing to do so, although they admit feeling some fear and assuming this type of responsibility. The patients participating in a clinical trial consider it advantageous because they receive treatment that may improve their health, and are prioritized in performance of diagnostic tests. Lack of understanding about the proposals of the trials and difficulties in acceding to the research website are identified as possible barriers. The patients are also very interested in knowing the results of the research study(AU)

Preferencias de los pacientes sobre la información de su enfermedad / Patients' preferences for information in health care decision-making

Se realizó una encuesta a pacientes que concurrían a servicios de cardiología para conocer cómo preferían ser informados sobre su estado de salud, y las características sociodemográficas asociadas con estas preferencias, considerando los siguientes ítems: conocimiento sobre la enfermedad, información sobre opciones terapéuticas y toma de decisiones. De 770 encuestados, 738 (95.8%) respondieron completamente el formulario. Se observó una tendencia a confiar sólo en el médico para obtener información (81.7%), a querer conocer las opciones de tratamiento y poder opinar (85.9%) y en menor medida, a la participación de la familia en las decisiones (63.2%). El 9.6% deseaba recibir la información mínima necesaria o "no saber nada" sobre una presunta enfermedad grave. Los varones fueron menos proclives a solicitar opciones y dar opinión (OR: 0.64), dando menos libertad a la participación familiar (OR: 1.31). Los de menor nivel socioeconómico reclamaron menos opciones (OR: 0.48) y dieron menor participación familiar (OR: 1.79). Los provenientes de otros países de Sudamérica tuvieron una menor tendencia a reclamar opciones y manifestar opinión (OR: 0.60); y los de menor nivel educativo confiaron menos en el conocimiento del médico (OR: 1.81), exigieron menos opciones (OR: 0.45) y prefirieron no conocer la gravedad de la enfermedad (OR: 0.56). El análisis de las variables demográficas permitió definir distintas preferencias de información asociadas a la edad, sexo, procedencia, educación, religión y estado de salud. Se concluye que, aunque es imperativo promover la autonomía del paciente, se deben conocer las preferencias individuales antes de informar y comprometer al paciente en el proceso de toma de decisiones sobre su enfermedad.

A survey was carried out among patients who concurred to cardiologic services to know how patients preferred to be informed about their health status, and the demographic characteristics associated to these preferences, considering the following items: knowledge about the disease, information about different therapeutic options and decision-making. From 770 people surveyed, 738 (95.8%) answered the form completely. A trend to trust only in the doctor's knowledge to obtain information (81.7%), in wanting to know the options of treatment and express one's point of view (85.9%), and to involve the family in the decisions (63.2%) was observed. 9.6% preferred to receive the minimum necessary information or "to know nothing" about an alleged serious disease. Males tended less to request options and give opinion on the subject (OR: 0.64), giving less freedom to family involvement (OR: 1.31). People with a lower social and economical level claim fewer options (OR: 0.48) and gave less family participation (OR = 1.79). Natives from other South American countries had a minor tendency to demand for options and express their thoughts (OR: 0.60); and the ones with lower education level trusted less in the doctor's knowledge (OR: 1.81), demanded fewer options (OR: 0.45) and chose not to know the severity of the disease (OR: 0.56). The analysis of the demographical variables allowed to define preferences associated to age, sex, origin, education, religion and health status. In conclusion, although it is imperative to promote the patient's autonomy, individual preferences must be taken into account before informing and compromising the patient in decision-making about his disease.

Client provider interaction; some basic findings

Although evidence suggests that the quality of care in Ministry of Health and Population [MOHP] clinics has improved and in many aspects is quite good yet other aspects including client-provider interaction is still deficient. The aim of the present study was to: provide base -line data on a wide range of indicators relating to quality of family planning services. It would also measure indicators of clients' perceptions of interaction with clinical staff, knowledge about family planning methods and satisfaction with provided services. The study is a cross-sectional facility based survey conducted in two governorates of Lower Egypt namely Menoufia and Sharkia. These represent two of the lowest governorates with the highest discontinuation rates and the lowest contraceptive prevalence rates. Two districts were randomly chosen from each of the selected governorates. Six family planning clinics were chosen to represent the different types of MOHP family planning facilities in each district, yielding a total of 24 clinics in both governorates. Field work was conducted during a four week period from October to November, 2000. All new and returning family planning clients who visited the study clinics during the recruitment period were eligible for the exit interview. Of these clients, the first 30 clients who visited the study clinics during the recruitment period were selected, with priority of selection given to new clients. A total of 726 clients completed the exit interview [434 new and 292 returning family planning clients]. In addition, a total of 240 family planning consultations were observed in this study with an average of 10 consultations per clinic. Study findings found the overall information exchange in all clinics to be inadequate, specifically information items considered essential for the determination of the clients' needs. Discussion of STDs and assessment of clients' risk of contracting an STD was also deficient where the total mean score for information exchange was found to be 5. Data generated from observations sessions showed that the mean number of methods discussed during encounters was 2.4. Data from the client exit interviews showed that 77% of new clients reported that they were given enough information about all methods and 71% were told about method use. Being informed of the possibility of switching to other methods was reported by only 60% of clients. The majority of clients received what they came for, with the exception of monopills [not available] and condoms. An index with a maximum value of 12 for counselors and 9 for physicians' interactions was computed. The mean score of counselors' and physicians' interactions was 4.9 and 4.0.The majority of clients were able to answer correctly the questions regarding pills [89%], injections [87%], and IUD [88%]. However, this was not the case for NORPLANT[R] [34%] or STD safety [5%]. The mean score of correct answers for specific methods was low. Overall, satisfaction was found to be acceptable with few exceptions. Of the core satisfaction areas on the questionnaire, the issue that was most frequently mentioned as causing dissatisfactions to the clients was the waiting time. Finally the study concluded that: The issue of CPI should be stressed upon as a mean of FP service quality improvement. Providers should be encouraged to sustain the good quality interpersonal relationship perceived by the clients. Provider attitudes towards information exchange in relation to STDs/A IDS should be investigated and addressed. Clients should be encouraged to take a proactive role in the delivered services. As well, family planning method shortages and biases for/against specific methods should be overcome in all MOHP clinics in order to ensure a meaningful choice for clients and to enable clients to achieve their fertility goals