A tal da Boa Morte: Perspectivas dos familiares cuidadores de doentes oncológicos em cuidados paliativos sobre morte digna

Abstract

As a way of overcoming the biomedical model, already unable to meet the demands of healthcare alone in postmodernity, palliative care emerges as a multiprofessional care strategy to care for people with diseases that cannot be cured or that are life threatening, aiming to improve the quality of life of these and their families, through the prevention and relief of suffering. To this end, it aims to identify, evaluate and early treat pain and other physical, psychological, social and/or spiritual symptoms. Thus, it uses a holistic view of the subject, understanding him in all its dimensions. It also seeks to rescue the understanding of death as something inexorable to men, as part of the life cycle of every human being. Palliative Care interventions are used during all stages of the disease until the end. It does not intend to anticipate or postpone death, but affirms life until death occurs as naturally as possible. In Brazil, it is a relatively recent area of expertise. Only in 2018 did the Ministry of Health publish specific legislation guaranteeing palliative care within the Unified Health System. Until then, palliative care was foreseen only in legislation focused on cancer care. However, palliative care should focus on all life-threatening and chronic diseases, not just cancer. For this and other reasons, recent studies show that the quality of death in Brazil is not good. Given this finding, the need for this study arises. The present work aims to deepen the knowledge about the historical-cultural basis of palliative care. To achieve this, the following specific objectives were set: to know the attitudes towards death and dying over time; understand how the historical-cultural panorama favored the development of a new health care model: palliative care; identify the perspectives of family caregivers of cancer patients in palliative care about dignified death. This work is composed of two chapters that addresses the theme. Chapter 1 – “Anthropology of Health, Disease and Death: Understanding the bases of Palliative Care” is a theoretical study that seeks to understand attitudes towards death and dying throughout history, from a health anthropology perspective, elucidating the context that favored the development of the palliative care philosophy. Chapter 2 - “The Idea of a Good Death: Perspectives of Family Caregivers of Cancer Patients in Palliative Care” aims to identify the perspectives of family caregivers of cancer patients in palliative care on the concept of dignified death. It consists in an empirical work, with qualitative and exploratory approach. Data were collected at a High Complexity Oncology Care Unit in Campina Grande, PB, through in-depth interviews, sociodemographic questionnaire and field diary use. The Enunciation Analysis Technique was used to analyze the obtained data. Results were represented by Sense Association Trees. Five categories of analysis were reached. Often, in the literature and among participants, the terms good death and dignified death are used interchangeably, although they are semantically and etymologically distinct. Talking about death is still taboo, but people show a demand for speech and a desire to be heard. The discourses found are consistent with the scientific literature, although the participants did not have any type of professional education in health. Further studies in this area are recommended both for consolidating the philosophy of palliative care among health professionals, patients and families, as well as for demystifying this care and the fear of death in society.