Percepção de pacientes com AIDS ou câncer sobre as intervenções terapêuticas ocupacionais pautadas no princípios da boa morte

Abstract

A good death is understood as one that is free or with minimal suffering, that respect the wishes of the deceased, such as being surrounded by family and friends, in the context of their choice, as having their participation in the preparations. Through Occupational Therapy it is understood that the ultimate human action is death and that this process can be assisted, aiming at a good death process for the dying person and the other social actors involved. In this context, the objective of the research was to describe and analyze the perception of patients with AIDS and cancer about occupational therapeutic interventions, based on the principles of a good death, regarding their autonomy, desires, wishes, conflicts, goodbyes and awareness of death. This is a qualitative, exploratory and descriptive field research, with non-probabilistic convenience sampling. The sample selection consisted of 12 participants, with a clinical diagnosis of AIDS or cancer in an advanced stage, coming from the Oncology and Infectious and Parasitic Diseases services of the Clinical Hospital of the Federal University of Triângulo Mineiro. They were submitted to three semi-structured interview scripts, and occupational therapeutic interventions based on preparatory activities for death. The data from the interviews were analyzed in their content to identify thematic categories and record the frequency of their occurrence. From the identification of seven central themes and 28 empirical categories, the results point to the experiences lived by the participants because of illness and the threat of death, through the expression of feelings, learning, occupational losses and the perception of prejudice regarding their clinical conditions. Autonomy was exercised when making decisions about treatments and in developing the Advance Directives of Will. Desires and dreams referred to travel, perform pleasurable and meaningful activities, undergo surgery, conquer their own home, find a loving partner, experience a good death, wishes for the funeral, material legacy and to remain alive. The pending issues referred to financial, judicial, administrative, functional, and relational issues, to be resolved in preparation for death. Farewells were understood as a process to be lived throughout the illness or in the final hours of life. The awareness of death permeated the perception of the death of family and friends, by the very finitude, by the acceptance or denial of it, by the conversations on the subject with family and friends, and by their preparation. Perceptions about Occupational Therapy interventions emerged through the acquisition of new knowledge about the death process, facilitating its acceptance; the gains related to the preparations, such as emotional improvement, the possibility of trusting the other and reestablishment of vital energy; by the feelings experienced in the therapeutic process, with comfort, relief and freedom being positive, and sadness and pain being negative, when faced with their own finitude. It appears that occupational therapeutic interventions change the perception of death regarding the importance of preparing for its arrival, reflecting on it, solving significant issues, accepting it, and living their desires and dreams in the residual time of their lives.