IOS Press, WORK: A Journal of Prevention, Assessment & Rehabilitation, 1(40), p. 63-73, 2011
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Objective: Family support in end-of-life decision-making is critical, yet this issue receives little attention. The purpose of this research is to provide insight into how the clinical ethicist can effectively support family caregivers when making end-of-life healthcare decisions. It further suggests how the clinical ethicist can provide support to other healthcare professionals who work with family caregivers in making end-of-life healthcare decisions. Participants and methods: Using a grounded theory approach, a theoretical sampling of 20 family caregivers previously involved in end-of-life decision-making were interviewed. Semi-structured in-depth interviews were audiotaped, and transcribed. Results: Interviews were analyzed using a constant comparative approach. The analysis resulted in the identification of three categories related to the experience of decision-making: the impact of healthcare decision-making on individual and family well-being, the effectiveness of healthcare professionals in supporting families, and the role of the ethicist. Conclusions: The results demonstrated the challenges that family members encounter when faced with end-of-life decision-making. The participants identified the importance of having access to a clinical ethicist who, with objectivity and specific training, can better meet the needs of family caregivers and improve the process of decision-making at the end-of-life.