Family Perceptions of Strategies to Facilitate End-of-Life Decisions

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DESCRIPTION (provided by applicant): Significance: Family members of patients dying in the ICU are faced with agonizing dilemmas, the consequences of which may haunt them for a lifetime. Providing these family members with meaningful support and information is imperative. Nurses, by virtue of the time spent at the bedside and knowledge of patient and family needs, are in a unique position to support family members. The literature provides ample studies of how nurses perceive they are involved in EOL decision-making and several studies describing what family members perceive that they need from health care professionals in general. What is lacking is literature that describes the family members perceptions of the specific strategies that nurses use to support their decision-making and how family members respond to these strategies. Because nurses may act on instinct, the strategies they use may or may not be helpful to family members. The proposed study will build on prior work by exploring in greater depth the specific strategies that family members perceive nurses using and how family members respond to these strategies. Purpose: This study aims to explore how family members respond to nursing strategies to support EOL decision-making, including family members perceptions of the strategies nurses use, how these strategies change over the trajectory of decision-making, and how these strategies affect their ability to make decisions consistent with the goals of the patient and their ability to cope with the stress of making EOL decisions. Methods: In this prospective, longitudinal, qualitative descriptive study, I will identify ICU patients who are likely to need complex decision-making and use narrative style interviewing techniques to explore the family members' perceptions of the strategies nurses use and the effectiveness of these strategies. Participants will be recruited from a 16 bed adult medical ICU at Duke Hospital, a tertiary care university hospital system. Summary: Knowledge from this study will pave the way for spreading expert nursing practices by leading to interventions targeting the areas identified as important by family members, most likely to improve their well being, and feasible in ICU environment. With this knowledge, nurses will be able to interact with families based on empirical data, rather than on instinct, and to help family members to make decisions that are consistent with the patient's goals and to cope with the burden of EOL decision-making. PUBLIC HEALTH RELEVANCE: When patients in the ICU are dying, their family members may be faced with hard choices, such as whether or not to stop life support or put in a feeding tube. In order to promote the emotional health of these family members, it is important to identify nursing actions that are helpful to them so that all nurses can be trained in how to help family members making these choices.