DISCUSSION
Despite evidence that early involvement of PPC results in improved quality of patient and parent life, a systematic review published in 2019 showed that only half of pediatric oncology patients receive any palliative care service prior to death, and such care tends to be late in the disease course.32 This project utilized improvement methodology and easily replicated interventions to increase the time between PPC involvement and patient death while also reducing the time between PPC involvement and initial cancer diagnosis. The project complimented Division goals of both improving patient care experiences and meeting national benchmarks, leading to clinician buy-in. Establishing standard recommendations for PPC involvement across our Division reduced previous barriers such as uncertainty about the timing of PPC consult. Our work empowered providers to consult PPC early and perhaps helped to minimize the perceived stigma surrounding palliative care documented in previous studies.32,33This initiative was a joint effort between the PPC team and Oncology Division.
Despite overall success, there were ongoing challenges and limitations within the project including EMR documentation and use of a limited target list. Even with the creation of the standard EMR documentation tool about PPC consultation, its utilization was poor which hindered further identification of barriers to PPC involvement. The agreed-upon target list of diagnoses (TABLE 1 ) did not include all diagnoses with EFS <50%. However, we chose to limit this list so as not to overwhelm either our oncologists or PPC while also serving as a test of feasibility. To address these limitations, we identified several next steps. The low use of the standard EMR documentation tool may be because it was not embedded in existing templates. As such, one solution is to create a standardized new diagnosis note that incorporates documentation about PPC consultation. And given the success of the project, the target list could be expanded. We would also like to note that while we feel our work was instrumental in our institution surpassing the USNWR benchmark of 75% of refractory cancer patients receiving PPC involvement >30 days prior to death, we are unable to definitively tie our work to this outcome and other confounders may have impacted results.
Future directions for this project relate to expanding the target list, creating long-term sustainability, formalizing standards, and surveying patients and families. Expansion of the target list should include all patients with a projected EFS < 50%, all patients with relapsed cancers, and other targeted populations such as those referred to the Bone Marrow Transplant or Experimental Therapeutics teams. As the project team’s oncology fellows graduate, sustaining this project will fall upon identified PPC and oncology team champions that are invested in creating an improvement task force to build on our efforts. These champions will need to formalize standard operating procedures for collaboration between PPC and oncology to help improve ongoing collaboration in an effort to reduce role ambiguity. Ongoing evaluation to assess patient and family perceptions of PPC involvement could provide further direction, given that known barriers to PPC involvement include the notions that families may not be receptive to PPC and that providers fear alienating families.25,29
In summary, this project illustrates the feasibility of using improvement methodology to increase PPC involvement in pediatric oncology patients. Lessons learned include building consensus with the clinicians involved, understanding barriers to success, ensuring buy-in from involved parties, and setting guidelines that may be easily tracked. Future directions offer room for ongoing collaboration between members of the PPC and oncology teams.