Quality of death: The unspoken experiences of patients with advanced cancers in India - An exploratory qualitative study.

Abstract

End-of-life (EOL) care is a developing concept in India, with well-established practices in certain states like Kerala, but not in all the states. As there is a substantial stigma associated with death discussion across the Indian population, the experiences of caregivers of people with advanced cancer have not been explored. Our aim in this study was to explore the experience and perceptions of caregivers of people diagnosed with advanced cancer regarding the quality of the individuals' death. An exploratory study where the caregivers (n = 108) of advanced cancer patients, who died either during hospitalization or at home, were interviewed to assess quality of death (QOD), using an open-ended question to explore the sufferings of the patients in the final days and caregivers' coping mechanism. Majority of the patients died at home (n = 79, 73.1%). The thematic analysis of the transcripts resulted in seven sub-themes, which were categorized under four major themes, namely 'bodily discomfort', 'psychological experiences' with the sub-themes resilience and existential distress, 'awareness of prognoses' with the sub-themes aware, unaware and conjecture, and 'carers coping' with the sub-themes perceived strain and contentment. Patients under EOL care experience physical and psychological suffering, as reported by the caregivers. Efforts must be undertaken to reduce suffering by means of improving focus on and strengthening symptom management and enhancing psychosocial support, for optimally utilizing the available interventions to manage the physical symptoms and to address the psychosocial issues.