Dying at the Margins: Reflections on Justice and Healing for Inner-City Poor (TH316)

Abstract

•Explain the unique factors that shape the illness experience for those challenged by economic and racial barriers.•Enhance skills in cultural humility and cultural competence.•Improve care of disadvantaged populations by deepening understanding of how to develop approaches that are specifically tailored to meet the needs of those who live and die at the margins.•Formulate strategies to advance public policies to address disparities in care for disadvantaged populations. Those challenged by economic and racial barriers suffer more than the rest of us—in life and death. Many patients who live and die at the margins experience mistrust and disempowerment as they navigate serious illness and the complexity of the medical systems that care for them. This presentation will describe how the intersection of racial and economic disempowerment with dying creates burden and suffering that is difficult to imagine. It also delineates how patients and families draw on social and spiritual capital to develop resilience and strategies for coping. If one listens carefully to the narratives of patients that run throughout the session, an enhanced vision of palliative and hospice care will emerge. This view declares that dying is far more than just a medical problem. It reminds that care of the dying is best done in meaningful collaboration with the community. It also advances a call to action for clinicians of all types to extend their skills and leadership into the arena of local and national policy, and to remind policymakers of their obligation to improve the healthcare system for vulneable patients and their loved ones. It also encourages us to develop practices that challenge conventional norms of care or risk not being able to ease the suffering of those among us who are often forgotten about or ignored. The presentation gives voice to the voiceless—the urban dying poor—and connects them to the voices of leaders in end-of-life care. It emphasizes that best practices in caring require developing skills in cultural humility and competence. Living and dying at the margins create unique stress and strain. When understandings and professional competency in serving the vulnerable are strenghened, the grim circumstances of the poor's lives may be eased into peace, dignity, and enhanced respect throughout the dying experience.