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.

[Wish to hasten death in home palliative care. Look for your seven percent.] / El deseo de adelantar la muerte en cuidados paliativos domiciliarios. Busca tu siete por ciento.

OBJECTIVE: The wish to hasten death has been little researched in the area of Mediterranean countries and we are not aware of specific studies on its particularities in home care in our setting. The aim of this work was to investigate the prevalence and evolution of wish to hasten death in home care, analysing its relationship with physical, emotional, spiritual, ethical and social-family unrest. METHODS: Longitudinal observational study in palliative home care in Catalonia. 43 teams agreed on the level of complexity after the first visit and after the discharge of the patient with the HexCom model, which classifies the desire to anticipate death into Low complexity (no or sporadic manifestation); Medium (persistent desire that requires specific treatment); or High (persistent desire that is considered potentially refractory). For the comparison of proportions, Pearson's Chi-squared test was used and a multivariate logistic regression analysis was performed, in which the dependent variable corresponded to the desire to hasten initial death. The level of significance was p≤0.05. RESULTS: The total number of patients included in this study was 1,677, of whom 1,169 (69.7%) were oncologic. The prevalence of desire to hasten death was 6.67%. It was related to spiritual distress, especially lack of meaning (OR 3.25) and lack of connection (OR 3.81), to psychoemotional distress (OR 2.34) and to ethical distress. Protective factors were spiritual distress in relation to transcendence (OR 0.50), the caregiver being a partner (OR 0.50) and being cared for by a team that included psychology and social work (OR 0.34). The desire to anticipate death is stable in 71.6% of patients. CONCLUSIONS: The desire to anticipate death is a changing and complex phenomenon that can emerge at any time. The presence of psycho-emotional, spiritual-existential and ethical discomfort, especially in patients without a partner, should make us take a proactive attitude to identify it early.

OBJETIVO: El deseo de adelantar la muerte ha sido poco investigado en el área de los países mediterráneos y no conocemos estudios específicos sobre sus particularidades en atención domiciliaria en nuestro entorno. El objetivo de este trabajo fue investigar la prevalencia y la evolución del deseo de anticipar la muerte en atención domiciliaria, analizando su relación con el malestar físico, emocional, espiritual, ético y sociofamiliar. METODOS: Estudio observacional longitudinal en el ámbito de la atención domiciliaria paliativa en Catalunya. 43 equipos acordaron el nivel de complejidad tras la primera visita y tras el alta del paciente con el modelo HexCom, el cual clasifica el deseo de anticipar la muerte en complejidad Baja (manifestación nula o esporádica); Media (Deseo persistente que requiere tratamiento específico); o Alta (Deseo persistente que se considera potencialmente refractario). Para la comparación de proporciones se utilizó la prueba de Ji cuadrado de Pearson y se realizó un análisis de regresión logística multivariante, en el que la variable dependiente correspondía con el deseo de adelantar la muerte inicial. El nivel de significación fue p≤0,05. RESULTADOS: El número total de pacientes incluidos en este estudio fue de 1.677, de los cuales 1.169 (69,7%) eran oncológicos. La prevalencia de deseo de anticipar la muerte fue del 6,67%. Se relacionó con el malestar espiritual, ante todo con la falta de sentido (OR 3,25) y de conexión (OR 3,81), con el malestar psicoemocional (OR 2,34) y con el malestar ético. Fueron factores protectores el malestar espiritual en relación con la transcendencia (OR 0,50), que el cuidador fuese la pareja (OR 0,50) y ser atendido por un equipo en el que se incluyese psicología y trabajo social (OR 0,34). El deseo de anticipar la muerte fue estable en el 71,6% de los pacientes. CONCLUSIONES: El deseo de anticipar la muerte es un fenómeno cambiante y complejo que puede emerger en cualquier momento. La presencia de malestar psicoemocional, espiritual-existencial y ético, sobre todo en pacientes sin pareja, nos han de hacer tomar una actitud proactiva para identificarlo precozmente.

Trayectorias de complejidad en el final de la vida: un estudio multicéntrico prospectivo observacional longitudinal / End-of-life complexity trajectories: a prospective, longitudinal observational multicenter study

Antecedentes: La complejidad se ha convertido en un tema central en cuidados paliativos. Se describe la evolución de la complejidad en atención domiciliaria y su relación con la ubicación de la muerte. Métodos: Estudio observacional de una cohorte prospectiva en el ámbito de la atención provista por los equipos de soporte a la atención domiciliaria en Cataluña. Los equipos evaluaron y acordaron el nivel de complejidad tras la primera visita y al exitus. El modelo HexCom incluye seis áreas de necesidades (clínicas, psicológicas, espirituales, sociofamiliares, éticas y relacionadas con la muerte), con tres niveles de complejidad: alto, moderado y bajo. Resultados: n = 648 pacientes: oncológicos 426 (65,7 %). Murieron en casa 364 (56,2 %), aumentando hasta el 86,4 % en los enfermos con demencia y al 81 % en los enfermos con fragilidad (p < 0,001). La puntuación de complejidad aumentó de 42 a 114 (p < 0,001), y este aumento fue más acusado en el grupo neurológico (de 32 a 213, p < 0,001). Se halló una asociación lineal entre complejidad y ubicación de la muerte (p < 0,001). La complejidad clínica y la sociofamiliar se asociaron a la ubicación de la muerte fuera del domicilio (p < 0,000). Conclusiones: La complejidad aumenta a medida que nos acercamos a la muerte, y esto se cumple en los grupos de pacientes oncológicos, con fallo de órgano y en los pacientes neurológicos, pero no en la demencia y la fragilidad/multimorbilidad. La complejidad se asocia con la ubicación de la muerte, principalmente en las áreas clínica y sociofamiliar. (AU)

Background: Complexity has become a central issue in palliative care. The evolution of complexity in home care and its relationship to place of death are described. Methods: An observational, prospective cohort study in the context of the care provided by home care supporting teams in Catalonia. Teams evaluated and agreed upon a complexity level after their first visit and after patient demise. The HexCom model includes six need areas (clinical, psychological, spiritual, family environment, ethical, and related to death) with three levels of complexity: high, moderate, and low. Results: n = 648 patients, of which 426 (65.7 %) were cancer patients. A total of 364 (56,2 %) subjects died at home, this figure reaching up to 86.4 % for patients with dementia, and to 81 % for fragile patients (p < 0.001). The Complexity Score increased from 42 to 114 (p < 0.001), an increase that was most pronounced in the neurological group (from 32 to 213, p < 0.001). A linear relationship was found between complexity and place of death (p < 0.001). Clinical and family environment complexity was associated with places of death outside the place of residence (p < 0.000). Conclusions: Complexity increases as death is approached, a relationship that holds for cancer patients, patients with organ failure, and neurological patients, but not for those with dementia or fragility/multimorbidity. Complexity is associated to place of death, mainly in the clinical and family environment areas. (AU)

Assessing Face Validity of the HexCom Model for Capturing Complexity in Clinical Practice: A Delphi Study.

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.

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

BACKGROUND: 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. METHODS: 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. RESULTS: 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%). CONCLUSIONS: 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.