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In their own voices: families discuss end-of-life decision making–part 2

Publication year
Berg, S.
238-42, 237

This two part series of articles presents poignant narratives based on interviews done with two mothers who suffered the worst pain imaginable–the pain of losing a child. Each woman describes an insensitive health care system with providers unaware of parental views and needs when confronted with difficult decisions during their children’s illnesses and subsequent deaths. Each woman also hoped that telling her story might help nurses and other health care providers better understand how to help. Part 1 of the series is the story of a professional, highly educated mother who experienced periods of extreme distress while she tried to give her premature daughter an identity and meaningful life in the neonatal intensive care unit and the difficulties faced when she was transferred to another unit as she became more ill Part 2 of the series is the story of a highly devoted working mother who tried to understand the information that was rarely offered to her as she lived through the extreme surgical and uncertain medical interventions given her toddler daughter with a fast-growing brain tumor. Both women faced hard decisions along their daughters’ illness trajectories. Both hoped for support from their health care providers in being active in decision-making. These narratives are in their own voices, from their own points of view.

Research abstracts