Dying with Dignity : Is This a Universal Concept?

Peer reviewedPublisher PD

Barriers to the development of palliative care in Western Europe

The Eurobarometer Survey of the <i>EAPC Task Force on the Development of Palliative Care in Europe</i> is part of a programme of work to produce comprehensive information on the provision of palliative care across Europe. Aim: To identify barriers to the development of palliative care in Western Europe. Method: A qualitative survey was undertaken amongst boards of national associations, eliciting opinions on opportunities for, and barriers to, palliative care development. By July 2006, 44/52 (85%) European countries had responded to the survey; we report here on the results from 22/25 (88%) countries in Western Europe. Analysis: Data from the Eurobarometer survey were analysed thematically by geographical region and by the degree of development of palliative care in each country. Results: From the data contained within the Eurobarometer, we identified six significant barriers to the development of palliative care in Western Europe: (i) Lack of palliative care education and training programmes (ii) Lack of awareness and recognition of palliative care (iii) Limited availability of/knowledge about opioid analgesics (iv) Limited funding (v) Lack of coordination amongst services (vi) Uneven palliative care coverage. Conclusion: Findings from the EAPC Eurobarometer survey suggest that barriers to the development of palliative care in Western Europe may differ substantially from each other in both their scope and context and that some may be considered to be of greater significance than others. A number of common barriers to the development of the discipline do exist and much work still remains to be done in the identified areas. This paper provides a road map of which barriers need to be addressed

Cuidados al Paciente y su Familia al Final de la Vida: La Anticipación Compasiva

El final de la vida va acompañado de sufrimiento y penalidades que pueden ser aliviados en las unidades de Cuidados Paliativos (CP) con una atención compasiva. El objetivo de este trabajo consiste en describir el concepto de “anticipación compasiva” como una forma de cuidar al paciente y a su familia al final de la vida desde la perspectiva tanto de los profesionales, profesores y estudiantes de las ciencias de la salud, como de las personas con enfermedad avanzada y sus familiares. Se ha empleado para ello una metodología cualitativa. Los datos se recogieron a través de entrevistas en profundidad y de grupos focales, siendo analizados y codificados usando la técnica de la teoría fundamentada. Se obtuvo la aprobación de un Comité de Ética. La muestra intencionada fue de 29 participantes: pacientes y familiares de pacientes con enfermedad avanzada, profesionales asistenciales de CP y expertos en bioética, profesores universitarios y estudiantes de Ciencias de la Salud. Los datos se recogieron en un Hospital de CP en Madrid, España. Los participantes valoran positivamente la anticipación compasiva de los profesionales que supone estudiar y reflexionar sobre las posibles complicaciones que pueden derivarse de la situación de enfermedad avanzada que padece el enfermo y dialogar con él acerca de las posibles actuaciones al respecto. El artículo concluye que la compasión es una virtud que implica adelantarse a las necesidades de los pacientes para que el enfermo pueda tomar decisiones compartidas acertadas. Es lo que se denomina anticipación compasiva. Son necesarios ulteriores estudios que profundicen en las características de la anticipación compasiva y cómo desarrollarla de forma óptima en los pacientes al final de la vida. End of life is frequently accompanied by suffering and hardships that can be alleviated in the Palliative Care (PC) units by applying compassionate advance care. It is the aim of this paper to describe the concept of "compassionate advance care" as a way of caring for the patient and his family at the end of life from the perspective of both professionals, teachers and students of the health sciences, and persons with advanced disease and their families. A qualitative methodology was used. Data were collected through in-depth interviews and focus groups, and analysed and coded using the theory of Grounded Theory. Approval of an Ethics Committee was obtained. The intentional sample consisted of 29 participants, who were patients and relatives of patients with advanced disease, PC professionals and experts in bioethics, university professors and Health Sciences students. Data were collected in a PC Hospital in Madrid, Spain. The participants positively valued the compassionate advance care provided by professionals: analysing and reflecting on possible complications that may arise from the advanced disease situation suffered by the patient and establishing a dialogue with him about possible actions in this regard. The paper concludes that compassion is a virtue that implies anticipating the needs of patients, thus allowing the patient to make the right shared decisions. This is what the term Compassionate Advance Care Planning entails. Further studies are needed to delve into the characteristics of compassionate Advance Care Planning and how to optimally implement it in patients at the end of life. To admit the opposite is to enter a spiral where the dignity of the human being would become an object of weighting with respect to another value, which, in a hypothetical conflict could be postponed by another. However, Palliative Care takes into account the social dimension of the end of life of the human being. They take care of the sick human being in its entirety. That is why they are the option most in line with the dignity of the human being at the end of his life

Surgery for anomalous aortic origin of coronary arteries : a multicentre study from the European Congenital Heart Surgeons Association

OBJECTIVES: We sought to describe early and late outcomes in a large surgical series of patients with anomalous aortic origin of coronary arteries. METHODS: We performed a retrospective multicentre study including surgical patients with anomalous aortic origin of coronary arteries since 1991. Patients with isolated high coronary takeoff and associated major congenital heart disease were excluded. RESULTS: We collected 156 surgical patients (median age 39.5 years, interquartile range 15-53) affected by anomalous right (67.9%), anomalous left (22.4%) and other anatomical abnormalities (9.6%). An interarterial course occurred in 86.5%, an intramural course in 62.8% and symptoms in 85.9%. The operations included coronary unroofing (56.4%), reimplantation (19.2%), coronary bypass graft (15.4%) and other (9.0%). Two patients with preoperative cardiac failure died postoperatively (1.3%). All survivors were discharged home in good clinical condition. At a median follow-up of 2 years (interquartile range 1-5, 88.5% complete), there were 3 deaths (2.2%), 9 reinterventions in 8 patients (5 interventional, 3 surgical); 91.2% are in New York Heart Association functional class <= II, but symptoms persisted in 14.2%; 48.1% of them returned to sport activity. On Kaplan-Meier analysis, event-free survival at follow-up was 74.6%. Morbidity was not significantly different among age classes, anatomical variants and types of surgical procedures. Furthermore, return to sport activity was significantly higher in younger patients who participated in sports preoperatively. CONCLUSIONS: Surgical repair of anomalous aortic origin of coronary arteries is effective and has few complications. Unroofing and coronary reimplantation are safe and are the most common procedures. The occurrence of late adverse events is not negligible, and long-term surveillance is mandatory. Most young athletes can return to an unrestrained lifestyle

Low nadir CD4+ T-cell counts predict gut dysbiosis in HIV-1 infection

Human immunodeficiency virus (HIV)-1 infection causes severe gut and systemic immune damage, but its effects on the gut microbiome remain unclear. Previous shotgun metagenomic studies in HIV-negative subjects linked low-microbial gene counts (LGC) to gut dysbiosis in diseases featuring intestinal inflammation. Using a similar approach in 156 subjects with different HIV-1 phenotypes, we found a strong, independent, dose-effect association between nadir CD4+ T-cell counts and LGC. As in other diseases involving intestinal inflammation, the gut microbiomes of subjects with LGC were enriched in gram-negative Bacteroides, acetogenic bacteria and Proteobacteria, which are able to metabolize reactive oxygen and nitrogen species; and were depleted in oxygen-sensitive methanogenic archaea and sulfate-reducing bacteria. Interestingly, subjects with LGC also showed increased butyrate levels in direct fecal measurements, consistent with enrichment in Roseburia intestinalis despite reductions in other butyrate producers. The microbiomes of subjects with LGC were also enriched in bacterial virulence factors, as well as in genes associated with beta-lactam, lincosamide, tetracycline, and macrolide resistance. Thus, low nadir CD4+ T-cell counts, rather than HIV-1 serostatus per se, predict the presence of gut dysbiosis in HIV-1 infected subjects. Such dysbiosis does not display obvious HIV-specific features; instead, it shares many similarities with other diseases featuring gut inflammation

Registro Español de Trasplante Cardiaco. XXXI Informe Oficial de la Asociación de Insuficiencia Cardiaca de la Sociedad Española de Cardiología

Introducción y objetivos Se presentan las características clínicas y los resultados de los trasplantes cardiacos realizados en España con la actualización correspondiente a 2019. Métodos Se describen las características clínicas y los resultados de los trasplantes cardiacos realizados en 2019, así como las tendencias de estos en el periodo 2010-2018. Resultados En 2019 se realizaron 300 trasplantes (8.794 desde 1984; 2.745 entre 2010 y 2019). Respecto a años previos, los cambios más llamativos son el descenso hasta el 38% de los trasplantes realizados en código urgente, y la consolidación en el cambio de asistencia circulatoria pretrasplante, con la práctica desaparición del balón de contrapulsación (0, 7%), la estabilización del uso del oxigenador extracorpóreo de membrana (9, 6%) y el aumento de los dispositivos de asistencia ventricular (29%). La supervivencia en el trienio 2016-2018 es similar a la del trienio 2013-2015 (p = 0, 34), y ambas mejores que la del trienio 2010-2012 (p = 0, 002 y p = 0, 01 respectivamente). Conclusiones Se mantienen estables tanto la actividad del trasplante cardiaco en España como los resultados en supervivencia en los últimos 2 trienios. Hay una tendencia a realizar menos trasplantes urgentes, la mayoría con dispositivos de asistencia ventricular. Introduction and objectives: The present report describes the clinical characteristics and outcomes of heart transplants in Spain and updates the data to 2019. Methods: We describe the clinical characteristics and outcomes of heart transplants performed in Spain in 2019, as well as trends in this procedure from 2010 to 2018. Results: In 2019, 300 transplants were performed (8794 since 1984; 2745 between 2010 and 2019). Compared with previous years, the most notable findings were the decreasing rate of urgent transplants (38%), and the consolidation of the type of circulatory support prior to transplant, with an almost complete disappearance of counterpulsation balloon (0.7%), stabilization in the use of extracorporeal membrane oxygenation (9.6%), and an increase in the use of ventricular assist devices (29.0%). Survival from 2016 to 2018 was similar to that from 2013 to 2015 (P = .34). Survival in both these periods was better than that from 2010 to 2012 (P = .002 and P = .01, respectively). Conclusions: Heart transplant activity has remained stable during the last few years, as have outcomes (in terms of survival). There has been a trend to a lower rate of urgent transplants and to a higher use of ventricular assist devices prior to transplant