Responder al deseo de adelantar la muerte en pacientes al final de la vida: síntesis de recomendaciones y guías clínicas / Responding to the Wish to Hasten Death in patients at the end of life: Synthesis of recommendations and clinical guidelines

OBJETIVO: Analizar y sintetizar la literatura existente sobre guías, protocolos y recomendaciones clínicas que den respuesta a un paciente que manifiesta deseo de adelantar la muerte (DAM). MÉTODO: Revisión de la literatura. Se diseñó una estrategia de búsqueda que se implementó en MEDLINE PubMed y en el metabuscador Google Académico. Se incluyeron en la revisión los artículos, protocolos, guías o procedimientos en los que se aportaban recomendaciones sobre el modo en que los profesionales deberían abordar el DAM, publicados hasta noviembre de 2015. Se extrajeron las distintas recomendaciones con una matriz de datos que sirvió para analizar y categorizar la información. RESULTADOS: Se incluyeron las recomendaciones publicadas en una guía clínica, un capítulo de libro, 5 artículos científicos y una página web. Las categorías obtenidas fueron: el contexto legal, el contexto de la comunicación con el paciente, temas a informar, aspectos a consensuar, habilidades de comunicación del profesional y responsabilidades del profesional. CONCLUSIONES: La síntesis de recomendaciones puede facilitar la práctica clínica a la hora de abordar el DAM

OBJECTIVE: To conduct an analysis and synthesis of the literature on guidelines, protocols and recommendations that respond to a patient manifesting a wish to hasten death (WTHD). METHOD: Literature review, a search strategy was designed of MEDLINE PubMed and Google Scholar meta-search engine. Articles, protocols, guidelines and procedures published up until November 2015 and offering recommendations on how professionals should address the WTHD were classified and the various recommendations were extracted in a matrix which served to analyse and categorise the data. RESULTS: Recommendations published in a clinical guide, a book chapter, five scientific articles and a website were obtained. It was noted that the experts attach importance to: legal context, communication context, issues to be informed, and issues for consensus, communication skills and professional duties. CONCLUSIONS: A synthesis of recommendations can facilitate clinical practice in addressing the WTHD

Cuidados paliativos en hematología clínica: experiencia de una consulta integrativa en pacientes con mieloma múltiple / Palliative care in clinical haematology: Experience of an integrative outpatient clinic in patients with multiple myeloma

OBJETIVO: Describir la experiencia tras el primer año de funcionamiento de una consulta integrativa de cuidados paliativos en pacientes con mieloma múltiple. Materiales y MÉTODOS: Se revisaron las historias clínicas de los pacientes visitados por primera vez en la consulta de cuidados paliativos en pacientes con mieloma múltiple. Durante la primera y las 3 siguientes visitas se evaluaron: dolor, anorexia, estreñimiento, insomnio, náuseas y vómitos, disnea, ansiedad y tristeza; mediante una escala visual numérica [0-10]. Se calculó la carga sintomática de los síntomas físicos y emocionales mediante el sumatorio de las puntuaciones de sus escalas visuales numéricas. La intensidad del dolor y su interferencia se evaluó mediante la versión española del Brief Pain Inventory modificada ad hoc. RESULTADOS: De febrero a diciembre 2013, se visitaron 67 pacientes (mediana desde el diagnóstico 355 días), y tras 3 visitas de seguimiento (mediana 60 días) la proporción de pacientes con dolor moderado-severo (escala visual numérica≥5) se redujo para el «dolor máximo» (57 vs.18%; p < 0,0001) y el «dolor promedio» (24 vs.2%; p < 0,0001). La proporción de pacientes sin interferencia por el dolor mejoró: actividad general (52 vs.82%; p = 0,0001), sueño (73 vs.91%; p = 0,01), estado de ánimo (52 vs.87,5%; p = 0,0001). La carga sintomática física y emocional, y la proporción de pacientes deprimidos (13 vs.5%; p = 0,001) mejoraron. CONCLUSIONES: La integración de los cuidados paliativos en la atención de los pacientes con mieloma múltiple no solo es posible, sino que mejora de forma significativa los síntomas emocionales y físicos

AIM: To describe the experience after the first year of operation of an integrative palliative care clinic for patients with multiple myeloma. MATERIALS AND METHODS: The medical records were reviewed of patients seen for the first time in the integrative palliative care clinic for patients with multiple myeloma. During the first, and the next 3 visits, pain, anorexia, constipation, insomnia, nausea and vomiting, dyspnoea, anxiety, and sadness were evaluated using a visual numeric scale [0-10]. The symptomatic burden of physical and emotional symptoms was calculated by summing the scores of their visual numeric scale. The pain intensity and its interference were assessed using the Spanish version of the Brief Pain Inventory modified ad hoc. RESULTS: From February to December 2013, 67 patients (median 355 days from diagnosis) were seen, and after 3 follow up visits (median 60 days from the first visit) the proportion of patients with moderate-severe pain (visual numeric scale ≥ 5) was reduced for 'worst pain' (57% vs.18%; P < .0001) and 'average pain' (24% vs.2%; P < .0001). The proportion of patients without interference from pain improved in, general activity (52% vs.82%; P=.0001), sleep (73% vs.91%; P =.01), and mood (52% vs.87.5%; P = .0001). There was also improvement in the physical and emotional symptom burden, and the proportion of depressed patients (13% vs.5%; P = .001). CONCLUSIONS: The integration of palliative care in the care of patients with multiple myeloma is not only possible, but also significantly improves the emotional and physical symptoms

Meaning in Life as a Mediator Between Physical Impairment and the Wish to Hasten Death in Patients With Advanced Cancer.

CONTEXT: Meaning in life (MiL) is a key factor for ensuring spiritual well-being and quality of life among patients with life-threatening illnesses. However, the role of MiL in relation to the wish to hasten death (WTHD) and its interaction with other physical and psychological factors in patients with advanced cancer has not yet been studied. OBJECTIVE: The objective of this study was to analyze the relationship between the WTHD and MiL and to propose a theoretical model of functional relationships among WTHD, performance status, depression, and MiL. METHODS: This is a cross-sectional study of 101 patients in a palliative care unit, who were assessed in the context of a clinical interview. Outcome measures included performance status, depression, MiL, and the WTHD. Structural equation modeling was used to analyze the functional relationships between these factors. RESULTS: The WTHD correlated significantly (P < 0.01) with MiL (r = 0.60), performance status (r = 0.548), and depression (r = 0.397). The structural equation modeling analysis showed that although there was no significant direct effect between performance status and the WTHD, there was a significant total effect because of the mediation of depression and MiL. The latter played the most significant role, accounting for 76.5% of the mediation. CONCLUSION: These results support the proposed model and provide evidence of a mediator effect of MiL and depression on the relationship between physical impairment and the WTHD in advanced patients. Our findings suggest that interventions to enhance MiL could help to address and/or prevent the emergence of a WTHD in this population.

Understanding meaning in life interventions in patients with advanced disease: A systematic review and realist synthesis.

BACKGROUND: Among patients with advanced disease, meaning in life is thought to enhance well-being, promote coping and improve the tolerance of physical symptoms. It may also act as a buffer against depression and hopelessness. As yet, there has been no synthesis of meaning in life interventions in which contextual factors, procedures and outcomes are described and evaluated. AIMS: To identify meaning in life interventions implemented in patients with advanced disease and to describe their context, mechanisms and outcomes. DESIGN: Systematic review according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and realist synthesis of meaning in life interventions using criteria from the Realist And Meta-narrative Evidence Syntheses: Evolving Standards project. DATA SOURCES: The CINAHL, PsycINFO, PubMed and Web of Science databases were searched. RESULTS: A total of 12 articles were included in the systematic review, corresponding to nine different interventions. Five articles described randomized controlled trials, two were qualitative studies, two were commentaries or reflections, and there was one pre-post evaluation, one exploratory study and one description of a model of care. Analysis of context, mechanisms and outcomes configurations showed that a core component of all the interventions was the interpersonal encounter between patient and therapist, in which sources of meaning were explored and a sense of connectedness was re-established. Meaning in life interventions were associated with clinical benefits on measures of purpose-in-life, quality of life, spiritual well-being, self-efficacy, optimism, distress, hopelessness, anxiety, depression and wish to hasten death. CONCLUSION: This review provides an explanatory model of the contextual factors and mechanisms that may be involved in promoting meaning in life. These approaches could provide useful tools for relieving existential suffering at the end of life.

What Gives Meaning in Life to Patients With Advanced Cancer? A Comparison Between Spanish, German, and Swiss Patients.

CONTEXT: Meaning in life (MiL) is a construct that varies across individuals, situations, cultures, and countries, and protects against emotional distress at the end of life. OBJECTIVES: To examine MiL in inpatients with advanced cancer from Barcelona, Spain, and to compare the findings with those obtained in German and Swiss samples. METHODS: This was a cross-sectional study in which the Schedule for Meaning in Life Evaluation (SMiLE) was administered. The SMiLE asks respondents to list individual areas that give meaning in their lives and then to rate their current level of importance and satisfaction with the listed areas. RESULTS: A total of 101 inpatients completed the SMiLE. The Index of Satisfaction was 76.8 ± 21.1, the Index of Weighting was 88.0 ± 13.0, and the Index of Weighted Satisfaction was 76.9 ± 20.7. Family, partnership, well-being, and friends were the four areas listed by the largest proportion of Spanish patients. Compared with the German sample, Spanish patients were more likely to list well-being (P < 0.01) and pleasure (P < 0.05) and less likely to list animals/nature, leisure time, and finances (P < 0.01). With respect to their Swiss counterparts, Spanish patients were more likely to list health (P < 0.01) and less likely to list friends, leisure time, animals/nature, and finances (P < 0.01). CONCLUSION: Differences were identified in the areas of MiL listed by the participants according to country of origin. Compared with their German and Swiss counterparts, the Spanish patients listed more areas involving interpersonal relationships. Interpersonal relationships, at both the family and wider social level, are reported to be the areas that give the greatest MiL to these patients. These aspects, therefore, should be considered when drawing up care plans designed to help patients achieve the maximum possible comfort and quality of life.