Experiências de final de vida: características, impacto no processo do morrer e implicações para a relação mente-cérebro

Abstract

This study investigated the prevalence, content, and meaning of End-of-Life Experiences (ELEs) from the perspective of patients in Palliative Care (PC) in Brazil, addressing a gap in the literature predominantly focused on studies with family members and professionals, and in North American and European contexts. The thesis is structured into five main sections: 1) Literature Review and Justification: This section addresses the end-of-life phase, the importance of PC, the concept of quality of death, and ELEs, along with their implications in the dying process and the mindbrain relationship. 2) Methodology: This section details the multicenter, longitudinal, and mixed-methods design of the study, conducted in three Brazilian PC units with patients, family members, and healthcare professionals. Clinical data from patients (PPS and CAM) were collected, and questionnaires on ELEs (patients and family members) and PHQ-9 and QoDD scales (family members) were administered. Professionals completed questionnaires on prior observations of ELEs and participated in interviews. Statistical analysis included descriptive statistics, association tests (chi-square, ANOVA/Kruskal-Wallis), and multivariate models to identify predictors of ELEs and quality of death, adjusted for clinical and sociodemographic variables. The qualitative analysis of interviews is ongoing, utilizing MAXQDA software (version 2024) and Bardin's content analysis perspective. 3) Results: Presented in the format of articles and book chapters, this section includes descriptive and preliminary inferential results from the doctoral candidacy report, an article exclusively focused on descriptive results, and academic productions related to the central theme of the thesis and correlated topics. Of the 85 patients included, the majority were religious/spiritual (63% moderately/highly religious, 98% believed in God, 65% believed in life after death). Approximately 34% reported ELEs, with these experiences being more frequent in the last eight days of life. Nearly half (49%) of ELEs occurred during sleep, 80% were perceived as real, and 52% involved deceased loved ones. Notably, 36% were comforting and 27% were distressing, and 78% occurred in lucid patients. The prevalence was lower and more distressing compared to North American samples. 4) Discussion: Although the ELEs observed in this study presented characteristics consistent with the literature, a relatively high proportion of distressing experiences suggests that, in addition to individual factors, cultural, social, and economic aspects can influence not only the frequency but also the affective tone of these experiences. The majority of ELEs were reported by patients without delirium, although cases of hypoactive delirium reported ELEs to a lesser extent, underscoring that the differentiation between ELEs and delirium is a critical point for clinical practice. Misinterpretation of these experiences can result in both unnecessary medicalization of subjectively meaningful experiences such as ELEs and the neglect of delirium conditions that require intervention. 5) Final Considerations: The consistency of ELE characteristics in Brazilian patients with those observed in other cultural contexts suggests that these experiences are a natural aspect of the dying process. It is therefore crucial to better understand how contextual and cultural factors affect their interpretation and emotional impact, especially considering the potential exacerbation of the death taboo during the pandemic. The results reinforce the need to train healthcare professionals for a careful assessment of mental states at the end of life, integrating neuropsychiatric, phenomenological, existential, and spiritual aspects. Furthermore, cross-cultural research employing standardized methodologies is essential to distinguish universal patterns from cultural variations in ELEs, thereby improving end-of-life care to make it more sensitive to the cultural and individual needs of patients. Additionally, these studies will provide robust data for scientific investigation into the possibility of the existence of consciousness beyond the brain.