title: Creating a palliative and end-of-life program in a cure-oriented pediatric setting: the zig-zag method.
abstract: Children living with and dying of advanced-stage cancer suffer physically, emotionally, and spiritually. Relief of their suffering requires comprehensive, compassionate palliative and end-of-life (EoL) care.However, an EoL care program might appear inconsistent with the mission of a pediatric oncology research center committed to seeking cures. Here the authors describe the methods used to achieve full institutional commitment to their EoL care program and those used to build the program's philosophical, research, and educational foundations after they received approval. The authors convened 10 focus groups to solicit staff perceptions of the hospital's current palliative and EoL care. They also completed baseline medical record reviews of 145 patient records to identify key EoL characteristics. The authors then crafted a vision statement and a strategic plan, implemented new research protocols,and established publication and funding trajectories. They conclude that establishing a state-of-the-art palliative and EoL program in a cure-oriented pediatric setting is achievable via consensus building and recruitment of diverse institutional resources.
authors.affiliation: Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee 38105-2794, USA. joann.harper@stjude.org
authors.forename: Joann
authors.initials: J
authors.lastname: Harper
authors.forename: Pamela S
authors.initials: PS
authors.lastname: Hinds
authors.forename: Justin N
authors.initials: JN
authors.lastname: Baker
authors.forename: Judy
authors.initials: J
authors.lastname: Hicks
authors.forename: Sheri L
authors.initials: SL
authors.lastname: Spunt
authors.forename: Bassem I
authors.initials: BI
authors.lastname: Razzouk
mesh_terms: D000047:Academies and Institutes / Q000458:organization & administration*; D001291:Attitude of Health Personnel; D019985:Benchmarking / Q000458:organization & administration; D002648:Child; D032921:Consensus; D003479:Curriculum; D017144:Focus Groups; D006801:Humans; D020380:Needs Assessment; D015404:Nursing Methodology Research; D009859:Oncology Nursing / Q000193:education / Q000458:organization & administration*; D015279:Organizational Culture; D009937:Organizational Objectives; D010166:Palliative Care / Q000458:organization & administration*; D010371:Pediatric Nursing / Q000193:education / Q000458:organization & administration*; D010687:Philosophy, Nursing; D010934:Planning Techniques; D011367:Professional Staff Committees / Q000458:organization & administration; D016730:Program Development / Q000379:methods*; D019984:Quality Indicators, Health Care / Q000458:organization & administration; D011795:Surveys and Questionnaires; D013714:Tennessee