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.