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The influence of the pediatric critical care culture on end-of-life decision making Northway, Tracie L.

Abstract

The primary goal of the pediatric intensive care unit (PICU) health care team is to make critically ill children better. In many instances, the professionals working within the PICU come to understand that this goal is unachievable. Shifting the focus of care away from cure and toward comfort and a good death within the context of high technology and a focus on cure can be exceedingly difficult. The purpose of this study was to investigate the nature of pediatric critical care culture in Canada and its influences on end-of-life decision making for children for whom the possibility of cure is remote or non-existent. Guided by the qualitative method of ethnography, a rich and detailed description of the cultural influences of pediatric critical care on end-of-life decision making was obtained through semi-structured interviews with eleven PICU nurses and six PICU physicians from seven Canadian PICUs. Each of the participants had experience in caring for dying children and their families. Analysis focused on identifying cultural values and perspectives by comparing PICU cultures and the processes surrounding end-of-life decision making. The findings from this study suggest that practitioners value a sense of control over the PICU environment and end-of-life decision making. This need to control is apparent in how the dying process is managed. Physicians and nurses endeavour to orchestrate and plan for a child's death through the deliberate creation of a plan for managing the end of a child's life. Additional values and beliefs which influence end-of-life decision making focus on protecting the family and staff from emotional pain and suffering, valuing a "good quality of life", presenting a "united front", and maintaining loyalty to "the plan". Nurses describe experiencing emotional distress when requested to continue care aimed at cure when these efforts seemed futile. They describe feeling constrained within their practice to influence end-of-life decision making. Physicians describe a less emotional and more analytical response to demands for ongoing treatment under "unrealistic expectations". In essence, the unpredictability of death combined with the complexities of the pediatric critical care environment (e.g., technology, types and acuity of patient illnesses, access and flow issues, and nurse-family-physician relationship dynamics) create tremendous challenges for meeting the goals of a "planned death". This study is unique because it specifically addresses how the pediatric critical care culture influences end-of-life decision making. The findings of this study suggest a need to develop a deeper understanding of how the struggle to control dying in PICU impacts end-of-life decision making in order to improve upon the end-of-life experiences for dying children and their families. Further research and education are required that focus on: developing a better understanding of the concept, actualization and implications of control in a PICU; strategies to improve interdisciplinary end-of-life decision making within a family-centered care model; improving upon the current practices aimed at caring for dying children and their families in a non-hospice setting; developing strategies for individuals to explore their understanding and comfort with end-of-life care; and developing and sustaining collaborative relationships between health care professionals and families.

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