L’Hexàgon de la Complexitat (HexCom)

Es descriu el procés de creació d’un instrument per a la valoració de les necessitats i els recursos de les persones en situació de final de vida ateses en el seu domicili per un equip transdisciplinari (Hexàgon de la Complexitat, HexCom) i, al mateix temps, s’explora la seva utilitat clínica, tant en la valoració inicial dels pacients i les seves famílies com en l’epícrisi. Consta de sis àrees de necessitat (clínica, psíquica, espiritual, sociofamiliar, ètica i mort) i 18 subàrees en la versió final, i de quatre àrees de recursos i fortaleses. S’aplica en un estudi retrospectiu sobre malalts terminals amb tumor cerebral i en un estudi prospectiu en malalts terminals no oncològics. És un instrument breu però complet, que permet una aproximació transdisciplinària de la complexitat en la clínica diària i que és capaç de detectar canvis

Rumors i llegendes contemporànies a Catalunya:una enquesta sistemàtica

En aquest treball es fan conèixer els primers resultats d'una enquesta sistematica sobre relats folklòrics feta dins del projecte "Rumors i llegendes contemporanies: diacronies i sincronies", financat pel Centre de Promoció de la Cultura Popular i Tradicional de Catalunya i integrat dins de l'inventari del Patrimoni Etnologic de Catalunya (IPEC).This study presents the first results of a systematic survey on folk narrative carried out in the project "Rumors and Contemporary Legends: Diachronies and Synchronies", financed by the Centre de Promoció de la Cultura Popular i Tradicional de Catalunya, and integrated into the Invento y of Catalan Ethnological Heritage (PEC)

Describing Complexity in Palliative Home Care Through HexCom : A Cross-Sectional, Multicenter Study

Complexity has become a core issue in caring for patients with advanced disease and/or at the end-of-life. The Hexagon of Complexity (HexCom) is a complexity assessment model in the process of validation in health-care settings. Our objective is to use the instrument to describe differences in complexity across disease groups in specific home care for advanced disease and/or at the end-of-life patients, both in general and as relates to each domain and subdomain. Cross-sectional study of home care was conducted in Catalonia. The instrument includes 6 domains of needs (clinical, psychological/emotional, social/family, spiritual, ethical, and death-related), 4 domains of resources (intrapersonal, interpersonal, transpersonal, and practical), and 3 levels of complexity (High (H), Moderate (M), and Low (L)). Interdisciplinary home care teams assessed and agreed on the level of complexity for each patient. Forty-three teams participated (74.1% of those invited). A total of 832 patients were assessed, 61.4% of which were cancer patients. Moderate complexity was observed in 385 (47.0%) cases and high complexity in 347 (42.4%). The median complexity score was 51 for cancer patients and 23 for patients with dementia (p<0.001). We observed the highest level of complexity in the social/family domain. Patients/families most frequently used interpersonal resources (80.5%). This study sheds light on the high-intensity work of support teams, the importance of the social/family domain and planning the place of death, substantial differences in needs and resources across disease groups, and the importance of relationship wellbeing at the end-of-life

Descripció i consens dels criteris de complexitat assistencial i nivells d’intervenció en l’atenció al final de la vida

Nivells assistencials; Atenció al final de la vida; Malalts terminalsNiveles asistenciales; Atención al final de la vida; Enfermos terminalesWelfare levels; Attention to the end of life; Terminally illAquest document pretén ser una eina que faciliti l’organització de l’atenció al final de la vida de la persona amb malaltia avançada/terminal i la seva família, especialment pel que fa a la coordinació entre recursos i l’adequació en la utilització de serveis. L’enfocament no es basa en l’orientació diagnòstica ni en el pronòstic vital de la persona, sinó en la selecció, com a població diana, de les deu patologies proposades per McNamara en la seva estimació de mínims. Aquestes deu patologies són: càncer, insuficiència cardíaca, insuficiència hepàtica, insuficiència renal, insuficiència respiratòria, esclerosi lateral amiotròfica (malalties de la motoneurona), malaltia de Parkinson, corea de Huntington, malaltia d’Alzheimer (demències) i sida. D’acord amb els objectius prioritaris de la línia estratègica del Pla director sociosanitari d’atenció al final de la vida, també s’ha considerat oportú considerar com a subjectes d’atenció especial els pacients geriàtrics pluripatològics, els afectats d’insuficiència orgànica crònica avançada, els pacients amb malalties neurodegeneratives i els malalts de sida. Aquest document planteja un pas més en l’evolució de les cures pal·liatives i s’orienta cap a la complexitat de les diferents necessitats i característiques que pot presentar la persona amb malaltia avançada/terminal i la seva família. Per primera vegada, es disposa d’un document de consens en què es defineixen diferents nivells de complexitat associats amb les necessitats globals de la persona i la seva família i es proposa la intervenció de cadascun dels nivells assistencials del sistema sanitari català amb què compta l’atenció al final de la vida

Assessing Face Validity of the HexCom Model for Capturing Complexity in Clinical Practice : a Delphi study

Funding: This research was funded by INSTITUT CATALÀ DE LA SALUT, grant number 7Z19/008.Capturing complexity is both a conceptual and a practical challenge in palliative care. The HexCom model has proved to be an instrument with strong reliability and to be valid for describing the needs and strengths of patients in home care. In order to explore whether it is also perceived to be helpful in enhancing coordinated and patient-centred care at a practical level, a methodological study was carried out to assess the face validity of the model. In particular, a Delphi method involving a group of 14 experts representing the full spectrum of healthcare professionals involved in palliative care was carried out. The results show that there is a high level of agreement, with a content validity index-item greater than 0.92 both with regard to the complexity model and the HexCom-Red, HexCom-Basic, and the HexCom-Clin instruments, and higher than 0.85 regarding the HexCom-Figure and the HexCom-Patient instruments. This consensus confirms that the HexCom model and the different instruments that are derived from it are valued as useful tools for a broad range of healthcare professional in coordinately capturing complexity in healthcare practice

Gender and observed complexity in palliative home care : A prospective multicentre study using the hexcom model

This study analyses gender differences in the complexity observed in palliative home care through a multicentre longitudinal observational study of patients with advanced disease treated by palliative home care teams in Catalonia (Spain). We used the HexCom model, which includes six dimensions and measures three levels of complexity: high (non-modifiable situation), medium (difficult) and low. Results: N = 1677 people, 44% women. In contrast with men, in women, cancer was less prevalent (64.4% vs. 73.9%) (p < 0.001), cognitive impairment was more prevalent (34.1% vs. 26.6%; p = 0.001) and professional caregivers were much more common (40.3% vs. 24.3%; p < 0.001). Women over 80 showed less complexity in the following subareas: symptom management (41.7% vs. 51,1%; p = 0.011), emotional distress (24.5% vs. 32.8%; p = 0.015), spiritual distress (16.4% vs. 26.4%; p = 0.001), socio-familial distress (62.7% vs. 70.1%; p = 0.036) and location of death (36.0% vs. 49.6%; p < 0.000). Men were more complex in the subareas of "practice" OR = 1.544 (1.25-1.90 p = 0.000) and "transcendence" OR = 1.52 (1.16-1.98 p = 0.002). Observed complexity is related to male gender in people over 80 years of age. Women over the age of 80 are remarkably different from their male counterparts, showing less complexity regarding care for their physical, psycho-emotional, spiritual and socio-familial needs

La prestación de ayuda a morir en el contexto del deseo de anticipar la muerte

Resumen: La entrada en vigor de la Ley Orgánica de Regulación de la Eutanasia en junio de 2021 obliga a los clínicos a un replanteamiento de su quehacer profesional ante una nueva prestación que expande los límites de lo que hasta ahora se iba considerando correcto. Una nueva prestación que recae en todo el sistema sanitario, pero especialmente sobre los profesionales de atención primaria. Más allá de los aspectos procedimentales y de tipo moral, es necesario replantearse la valoración del paciente que expresa su deseo de morir. En esta revisión partimos de la relativamente reciente definición de deseo de anticipar la muerte (DAM), sus causas, la epidemiologia y el diagnóstico diferencial; se profundiza en los diferentes marcos mentales que se encuentran en el proceso de morir y en el concepto de «buena muerte», y finalmente se analizan los caminos que pueden llevarnos a la prestación de ayuda a morir en el marco de la legislación actual. El DAM es específico de las peticiones en caso de «enfermedad grave y avanzada», no en los otros supuestos contemplados por la Ley. Ante una petición de activar la prestación de ayuda a morir en el contexto de DAM, es decir, en proximidad de muerte, sería necesario procurar aumentar la sensación de control por parte del paciente, empezar a trabajar el duelo y, ante un proceso administrativo que va a ser necesariamente largo, contemplar la adecuación del esfuerzo terapéutico y la sedación como opciones posibles. Entendemos que es fundamental no crear falsas expectativas a pacientes/familiares y no sobrecargar a los profesionales con tareas administrativas que probablemente serán fútiles. Un equilibrio difícil ante la petición de acceso a un derecho al que el paciente siempre debe poder acceder. Abstract: The entry into force of the Organic Law on the Regulation of Euthanasia in June 2021 obliges clinicians to reconsider their professional work, in the face of a new service that expands the limits of what was considered correct until then. This new service affects the entire healthcare system, but especially primary care professionals. Beyond the procedural and moral aspects, it is necessary to rethink the assessment of the patient who expresses a wish to die. In this review, we start with the relatively recent definition of the wish to hasten death (WTHD), its causes, epidemiology and differential diagnosis. Then, we examine the different mental frameworks found in the process of dying and the concept of a «good death». Finally, we analyse the paths that can lead to the provision of aid in dying within the framework of current legislation. The WTHD is specific to requests in case of «serious and advanced illness», not in other cases contemplated by the Law. When faced with a request to activate the Aid in Dying Prestation in the context of WTHD (that is, in the proximity of death), it becomes necessary to increase the patient's sense of control and begin to work on grief. Besides, in the face of an administrative process that will necessarily be long, adapting the therapeutic efforts and sedation should be considered as possible options. We understand that it is essential not to create false expectations for patients/families and not to overload healthcare professionals with administrative tasks that will be futile. It is difficult to balance these in the face of a request for a right to which the patient should always have access

Complejidad asistencial y lugar de muerte en atención domiciliaria paliativa

Resumen: Objetivo: Examinar las asociaciones entre las dimensiones del modelo de complejidad asistencial HexCom y la ubicación de la muerte. Método: Estudio observacional longitudinal multicéntrico en pacientes con enfermedad avanzada tratados por los equipos de soporte a la atención domiciliaria en Cataluña. Se recogieron edad, sexo, estado funcional y cognitivo, tipo de enfermedad, cuidador/a principal, trabajador/a familiar, lugar de la muerte y complejidad tras la primera visita. Se realizó un análisis de regresión de Cox multivariante. Resultados: Participación de 1527 pacientes (72% oncológicos), atendidos una mediana de 35 días. El 45% fallecieron en su domicilio. La probabilidad de morir en casa era mayor cuando se detectaba un mayor deterioro funcional (hazard ratio [HR]: 7,67; intervalo de confianza del 95% [IC95%]: 4,93-11,92), cuando el sujeto era varón (HR: 1,19; IC95%: 1,02-1,39), cuando la edad era >80 años (HR: 1,41; IC95%: 1,20-1,66) y cuando se detectaba complejidad en relación a la situación de últimos días (HR: 2,24; IC95%: 1,69-2,97). Era más probable no morir en casa si se padecía cáncer (HR: 0,76; IC95%: 0,64-0,89), si se detectaba un pobre apoyo externo al grupo familiar (HR: 0,79; IC95%: 0,67-0,93), si el/la paciente no se sentía en paz con los demás (HR: 0,54; IC95%: 0,39-0,75) o si había falta de acuerdo en la planificación del lugar de la muerte (HR: 0,57; IC95%: 0,48-0,68). Conclusiones: La valoración de la complejidad asistencial a través del modelo HexCom-Clin puede contribuir a una mejor planificación anticipada de decisiones al incorporar entre sus dimensiones el sentirse en paz con los demás, el soporte externo al núcleo familiar y el grado de acuerdo sobre el lugar de muerte. Abstract: Objective: To examine the associations between the dimensions of the HexCom care complexity model and the place of death. Method: Multicenter longitudinal observational study in patients with advanced illness cared for by home care support teams in Catalonia. Age, gender, type of illness, main caregiver, external support, place of death and the sub-areas of care complexity provided by HexCom were registered. A multivariate Cox regression analysis was performed. Results: Participation of 1527 patients (72% oncology), cared for a median of 35 days. 45% died at home. The probability of dying at home was greater when a greater functional impairment was detected in the initial assessment (hazard ratio [HR]: 7.67; 95% confidence interval [95%CI]: 4.93-11.92), when the patient was male (HR: 1.19; 95%CI: 1.02-1.39), was over 80 years old (HR: 1.41; 95%CI: 1.20-1.66) and when care complexity was detected in relation to being in a situation of last days (HR: 2.24; 95%CI: 1.69-2.97). It was more likely not to die at home in the case of cancer (HR: 0.76; 95%CI: 0.64-0.89), or if poor external support to the family group was detected in the first evaluation (HR: 0.79; 95%CI: 0.67-0.93), or that the patient did not feel at peace with others (HR: 0.56; 95%CI: 0.40-0.79), or lack of agreement on the planning of the place of death (HR: 0.57; 95%CI: 0.48-0.68). Conclusions: The assessment of the complexity of care through the HexCom-Clin model can help to improve advance planning of decisions by incorporating among its dimensions the feeling of peace with others, the external support to the family nucleus and the degree of agreement on the place of death

Implementation of Assisted Dying in Catalonia : Impact on Professionals and Development of Good Practices. Protocol for a Qualitative Study

The approval of the Spanish Law for the Regulation of Euthanasia in March 2021 entails a profound social change that has direct implications for professional practice at all levels of care. There is no information available about the experiences of the professionals participating in the process of implementing the law in our country, nor any guide as to what might represent good practices in euthanasia in the context of the Mediterranean countries. Due to the complexity of the concepts often associated with assisted dying processes (such as suffering, dignity and moral compass), it is essential that systematic and detailed research be conducted on how professionals understand their experiences of euthanasia, and that it be conducted during the initial stages. We intend to carry out a qualitative study with a constructionist orientation to gain insight to the social constructs underlying professionals' initial experiences. It consists of a series of in-depth interviews conducted in two phases: the first being exploratory and the second phenomenological. Sampling will be purposive and substantiated and have the following variation criteria: profession, age, and gender. Participants will be recruited through the Guarantee and Review Commission of Catalonia, and the scope of the study is all of Catalonia. We expect the participation of 31 professionals. The research will be conducted by a multidisciplinary team with the direct participation of researchers from different levels of healthcare, university research centers and civil society through all phases of the study. The expected results are: (a) A detailed description of the experiences of the professionals involved in the implementation of the law; and (b) The identification of the foundations for a guide to good practices in euthanasia in the Mediterranean setting