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Creating a palliative and end-of-life program in a cure-oriented pediatric setting: the zig-zag method
Joann Harper1, Pamela S Hinds, Justin N Baker
1Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee 38105-2794, USA. joann.harper@stjude.org
Summary
Establishing comprehensive palliative and end-of-life (EoL) care in pediatric oncology is achievable. This involves building consensus and integrating EoL programs within research centers focused on cures.
Area of Science:
- Pediatric Oncology
- Palliative Care
- End-of-Life Care
Background:
- Children with advanced cancer experience significant suffering.
- Palliative and end-of-life (EoL) care are crucial for alleviating this suffering.
- Integrating EoL care into pediatric oncology research centers presents unique challenges.
Purpose of the Study:
- To describe methods for achieving institutional commitment to a pediatric end-of-life care program.
- To outline strategies for establishing the philosophical, research, and educational foundations of such a program.
Main Methods:
- Conducted 10 staff focus groups to assess current palliative and EoL care perceptions.
- Performed baseline medical record reviews of 145 patients to identify EoL characteristics.
- Developed a strategic plan, new research protocols, and funding trajectories.
Main Results:
- Gained full institutional commitment for the EoL care program.
- Established foundational elements including a vision statement, strategic plan, research protocols, and publication/funding goals.
- Demonstrated feasibility of integrating advanced EoL care within a cure-focused pediatric setting.
Conclusions:
- A state-of-the-art palliative and EoL program can be successfully established in pediatric oncology settings.
- Achieving this requires consensus building and leveraging diverse institutional resources.
- Integrating EoL care complements, rather than contradicts, a research center's mission to find cures.
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