How to Manage the Suffering of the Patient and the Family in the Final Stage of Life: A Qualitative Study

Abstract

Background: The end of life and death have changed from being issues managed within the family, assumed as part of life, to occur within health institutions for the majority of patients. The amount of patients dying at home has decreased, and the roles of families and communities in death and dying have become involuted, threatening related traditions and knowledge. As a result, a need to promote the end of life at home in this new self-serving society has arisen. In that context, the main objective of this study was to find out what patients and their families need during the end-of-life process in order to feel effectively accompanied at this time. Methods: With that objective, a descriptive qualitative study was conducted via the content analysis of data from semi-structured interviews and focus groups. This research adhered to the COREQ guidelines. The sample consisted of 36 informants selected via intentional sampling of family members and patients integrated into the Comprehensive Palliative Care Process (PAI Paliativos). Results: The results suggest the existence of several common needs such as communication and presence, including the conspiracy of silence as an important factor generating suffering for both. However, there are specific needs such as autonomy, dignity, and respect for patients, which must be taken into account. Conclusions: The results of this study will allow us to establish intervention strategies for effective accompaniment of patients’ family members at the end of life and the avoidance of ethnocentrism in this process. This study was retrospectively registered with the (nursrep-1194226) on the (21 April 2023).

Keywords

• palliative care
• end-of-life care
• chronicity
• aging
• elderly care
• nursing homes