Decisionmaking in Pediatric Palliative Care

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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.