End-of-life decision making by adolescents, parents, and healthcare providers in pediatric oncology - Research to evidence-based practice guidelines

Participating in end-of-life decisions is life altering for adolescents wit h incurable cancer, their families, and their healthcare providers. However , no empirically developed and validated guidelines to assist patients, par ents, and healthcare providers in making these decisions exist. The purpose of the work reported here was to use three sources (the findings of three studies on decision making in pediatric oncology, published literature, and recommendations From professional associations) to develop guidelines for end-of-life decision making in pediatric oncology. The study designs includ e a retrospective, descriptive design (Study 1); a prospective, descriptive design (Study 2); and a cross-sectional, descriptive design (Study 3). Set tings for the pediatric oncology studies included a pediatric catastrophic illness research hospital located in the Midsouth (Studies 1 and 2); and th at setting plus a children's hospital in Australia and one in Hong Kong (St udy 3). Study samples included 39 guardians and 21 healthcare providers (St udy 1); 52 parents, 10 adolescents, and 22 physicians (Study 2); and 43 par ents (Study 3). All participants in the studies responded to six open-ended questions. A semantic content analysis technique was used to analyze all i nterview data. Four nurses independently coded each interview; interrater r eliability per code ranged from 68% to 100% across studies. The most freque ntly reported influencing factors were "information on the health and disea se status of the patient," "all curative options having been attempted," "t rusting the healthcare team," and "feeling support from the healthcare prov ider." The agreement across studies regarding influencing factors provides the basis for the research-based guidelines for end-of-life decision making in pediatric oncology. The guidelines offer assistance with end-of-life de cision making in a structured manner that can be formally evaluated and ind ividualized to meet patient and family needs.