Contexts of awareness in end-of-life palliative care: a grounded theory (Research Proyect FFI2016-76927-P- AEI/FEDER, UE)

Abstract

Background/aims: Clinical communication with terminally-ill patients guarantees dignity and facilitates decision-making. This communication is not always open and different contexts of awareness have been described. In these contexts, patients may or may not know the extent of their illness and prognosis ('open awareness', 'closed awareness', 'suspected awareness' and 'mutual pretence'). The objective of this study was to understand the professional-patient communication process and the awareness contexts established in palliative care patients. Methods: A qualitative study based on Grounded Theory was designed. For data collection, ten in-depth interviews were conducted on patients included in palliative care programmes. Data analysis was performed after including the transcription of the interviews and the field notes into ATLAS.ti software for coding. An open, axial and selective coding process was carried out by using the constant comparative method and theoretical sampling. Results: From the analysis, the following central category emerged: Patients´ pristine struggle to live prevents full acceptance of finitude and death. Three categories explain this central category: (1) Fear compromises the dignity of the person up until their final moment; (2) The state of open awareness liberates the communicative process of the person and (3) When facing death, a process of confrontation takes place that fluctuates between acceptance and denial. Conclusions: Open and honest communication helps the patient enter in a state of open awareness about their disease and prognosis. In this way, coping process is eased, although it continues to be a tortuous process for patients and families alike. Closed awareness (silent conspiracy) and mutual misleading are roadblocks to the acceptance of death. A positive attitude, participating in leisure activities, or taking part in support groups all encourage acceptance in those facing the end of life. References: Fernández‐Sola, C., Granero‐Molina, J., Díaz‐Cortés, M. D. M., Jiménez‐López, F. R., Roman‐López, P., Saez‐Molina, E., ... & Hernández‐Padilla, J. M. (2018). Characterization, conservation and loss of dignity at the end‐of‐life in the emergency department. A qualitative protocol. Journal of Advanced Nursing, 74(6), 1392-1401. Glaser, B., & Strauss, A. (2017, First edition 1999). Discovery of grounded theory: Strategies for qualitative research. Routledge, London. Glaser, B.G & Strauss, A.L. (2005, First edition 1965). Awareness of Dying. Routledge. Correa-Casado, M. & Hernández-Padilla, J-M. (2020). “Interaccionismo simbólico y teoría fundamentada”. In Fernández-Sola, C., Granero-Molina, J., Hernández-Padilla, J. M. Eds Comprender para cuidar. Avances en Investigación cualitativa en Ciencias de la Salud. Editorial Universidad de Almería-Universidad Autónoima de Chile, pp. 86-101. Brighton L, Selman L, Bristowe K, Edwards B, Koffman J & Evans J. (2019) Emotional labour in palliative and end-of-life care communication: A qualitative study with generalist palliative care providers. Patient Education and Counseling, 102(3),494-502. Schapira, L. (2015) Communications by Professionals in Palliative Care. Clinics in Geriatric Medicine, 31(2), 231–243. http://doi.org/10.1016/j.cger.2015.01.005