Decisionmaking in Pediatric Palliative Care

描述（由申请人提供）：决策是提供姑息治疗和临终关怀的基本过程，先于并促成所有其他护理过程。然而，关于这个过程如何在充满情感的儿科实践领域中运作，人们知之甚少。这一修订提案的总体最终目标（针对2004年2月5日发布的PA-04-057“改善对垂死儿童及其家庭的护理”提交）是通过提高影响死亡体验的决策的质量和及时性来改善对垂死儿童的护理，而这反过来（我们假设）可以通过减少父母在过渡到姑息治疗方法时的不确定性和优柔寡断来实现。我们的基本理论模型规定，父母对孩子采用姑息治疗方法的决定的信心不仅受到预后和治疗选择信息的影响，还受到孩子的父母、成年人和医疗团队对希望、信任、预期损失的感知以及“问题和目标优先级一致性”程度的影响。反过来，父母的决策信心会影响后续决策的质量和及时性。我们的目的是：1)检验父母对希望、信任和预期损失的感知是否与姑息治疗团队参与时的决策信心有关；2)检验父母二人组和父母/医生三合一组对临终儿童问题和目标优先排序的一致性是否影响父母对决策信心的感知；3)检验父母决策信心对后续医疗保健使用的影响。本研究的结果将通过指导干预措施的设计来提高临终儿童及其家庭成员的护理质量：a)改善家庭成员之间的沟通；B)加强家庭成员与医生之间的沟通和信任；C)改善父母对预期损失和绝望的体验；d)通过改进认知和情感支持技术促进更及时和有效的决策。

DESCRIPTION (provided by applicant): Decision-making is a fundamental process in the provision of palliative and end-of-life care, preceding and precipitating all other care processes. Little is known, however, about how this process operates in the emotionally-charged realm of pediatric practice. The overarching ultimate goal of this revised proposal (submitted in response to PA-04-057, "Improving care for dying children and their families," released 5 February 2004) is to improve the care of dying children by improving the quality and timeliness of decisions that affect the experience of dying, which in turn (we postulate) can be accomplished by reducing parental uncertainty and indecision regarding transition to a palliative care approach. Our underlying theoretical model stipulates that parental confidence in the decision to adopt a palliative care approach for their child is influenced not just by prognostic and treatment option information but also by perceptions of hope, trust, anticipatory loss, and the degree of 'problems and goals prioritization concordance' among the child's parental adults and the healthcare team. In turn, parental decision-making confidence influences the quality and timeliness of subsequent decisions. We aim 1) To test whether parental perceptions of hope, trust, and anticipatory loss are related to decision-making confidence at the time of engagement of the palliative care team; 2) To test whether the degree of concordance between parental dyads, and among parental/physician triads, regarding how the dying child's problems and goals are prioritized influences parental perceptions of decision-making confidence; and 3) To test whether parental decision-making confidence affects subsequent health care usage. The findings from this study will improve the quality of care for dying children and their family members by guiding the design of interventions to a) improve communication among family members; b) enhance communication and trust between family members and physicians; c) ameliorate parental experiences of anticipated losses and hopelessness; and d) promote more timely and effective decision-making through improved cognitive and affective support techniques.