The Seattle Pediatric Palliative Care Project: Effects on Family Satisfaction and Health-Related Quality of Life

Purpose: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999–2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled participants. The program was designed to enhance patient–provider communication using the Decision-making Tool (DMT) and experimented with comanagement by clinicians and insurers to support decisionmaking in advanced serious pediatric illness. Design: The project design consisted of ethical decision-making, provider education, and flexible administration of health benefits through co-case management between insurers and care providers. The evaluation study design is a nonexperimental pretest, posttest design comparison of pediatric quality of life and family satisfaction at program entry with repeated measures at 3 months postprogram entry. Quality of life was measured with parent proxy reports of health-related quality of life using the PedsQL™ Version 4.0, and...