Children and Adolescents Participating in Research and Clinical Care Decisions at the End of Life

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Terminally ill and dying children and adolescents and their family members may be eligible to participate in research studies about the end of life. They may also be eligible to receive innovative care in place of or in addition to standard care. Each of these options requires decision making. Factors that can influence the inclusion of children or adolescents in such decision making include their ability to understand their health status and their options, their legal standing, the preferences of their family, and the critical nature of their health status. We recommend that, whenever possible, end-of-life decision making about research and innovative care options be initiated when the child or adolescent is able to participate.

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