Inpatient end-of-life care delivery: discordance and concordance analysis of Canadian palliative care professionals’ and South Asian family caregivers’ perspectives

Abstract

Background: End-of-life care involves a multitude of functions delivered by a team of healthcare professionals. Family caregivers get involved in every aspect of the palliative care journey. Meeting the needs of ethnically diverse patients can be a daunting task for Western-trained healthcare professionals. Family and professional caregivers need to have a mutual understanding of perspectives and expectations to integrate family caregivers into end-of-life care. The South Asian population in Canada is fast growing, and very little is known about their understanding and expectations of end-of-life care. Methods: The purpose is to provide research-based knowledge on discordances and concordances of encounters and perceptions of end-of-life care delivery between South Asian family caregivers and palliative care health professionals. Individual interviews were conducted among seven palliative care professionals, in a tertiary care center, and seven South Asian family caregivers who have provided care, in the same inpatient center, for the same period. The constant comparison, a component of the grounded theory approach, was employed to compare the two types of caregivers’ perspectives that emerged in the qualitative data. Findings: The family caregivers were divided in their perception based on death denial and acceptance. The findings weaved the discordances and concordances of meaning assigned to palliative care to the three themes that emerged: the role of the family caregiver, communication needs and challenges, and barriers to the family caregiver participation in decision-making. The discordance between professionals and family caregivers arose in the death-denial group and concorded with the death-accepted group. The findings revealed a consequence of the survival optimistic bias, as creating dissatisfaction toward the end-of-life care delivery system when the palliative care professionals prognosticate imminent end-of-life. Conclusion: The family caregivers’ interactions and encounters were shaped by their acceptance or denial of the death of their family member in care. Gaining conceptual clarity on the meaning of palliative care and providing education on the process of end-of-life care delivery are crucial to integrating ethnically diverse family caregivers into the decision-making process.