Integrating Palliative Care in Pediatric Oncology: Evidence for an Evolving Paradigm for Comprehensive Cancer Care

Abstract

Background: The demonstrated benefit of integrating palliative care (PC) into cancer treatment has triggered an increased need for PC services. The trajectory of integrating PC in comprehensive cancer centers, particularly pediatric centers, is unknown. We describe our 8-year experience of initiating and establishing PC with the Quality of Life Service (QoLS) at St. Jude Children's Research Hospital.

Methods: We retrospectively reviewed records of patients seen by the QoLS (n=615) from March 2007 to December 2014. Variables analyzed for each year, using descriptive statistics, included diagnostic groups, QoLS encounters, goals of care, duration of survival, and location of death.

Results: Total QoLS patient encounters increased from 58 (2007) to 1,297 (2014), new consults increased from 17 (2007) to 115 (2014), and mean encounters per patient increased from 5.06 (2007) to 16.11 (2014). Goal of care at initial consultation shifted from primarily comfort to an increasing goal of cure. The median number of days from initial consult to death increased from 52 days (2008) to 223 days (2014). A trend toward increased outpatient location of death was noted with 42% outpatient deaths in 2007, increasing to a majority in each subsequent year (range, 51%-74%). Hospital-wide, patients receiving PC services before death increased from approximately 50% to nearly 100%.

Conclusions: Since its inception, the QoLS experienced a dramatic increase in referrals and encounters per patient, increased use by all clinical services, a trend toward earlier consultation and longer term follow-up, increasing outpatient location of death, and near-universal PC involvement at the end-of-life. The successful integration of PC in a comprehensive cancer center, and the resulting potential for improved care provision over time, can serve as a model for other programs on a broad scale.

Copyright © 2016 by the National Comprehensive Cancer Network.

Figures

Figure 1

Number of initial QoLS consultations per year, total QoLS patient encounters per year and mean number of QoLS encounters per patient by year of the patient’s initial QoLS consultation (March 2007 – December 2014). *The mean number of encounters per patient for 2014 includes only those patients whose initial QoLS consultation occurred between January 1, 2014, and September 30, 2014, to allow for 365 days of potential follow-up before death. Data for all the other years include all patients seen that year.

Figure 2

Goals of care for patients at initial QoLS consultation (January 2008 – December 2014). Cure- receiving disease directed therapy with realistic chance of cure, Prolong life with focus on cure- receiving disease directed therapy with goal disease stabilization and less likely chance of cure, Prolong life with focus on comfort- receiving disease directed palliative therapy for life prolongation without curative intent, Comfort only- receiving palliative therapy for symptom management only *n represents the number of initial QoLS consultations in each calendar year.

Figure 3

Length of time between the date first seen at St. Jude and date of initial QoLS consultation (January 2008 – December 2014). *n represents the number of initial QoLS consultations in each calendar year.

Figure 4

Patients’ survival duration from initial QoLS consultation (January 2008 – December 2014). *n represents the number of initial QoLS consultations in each calendar year. The 2014 analysis includes only those patients whose initial QoLS consultation occurred between January 1, 2014, and September 30, 2014, to allow for 365 days of potential follow-up before death. Data from all the other years include all patients seen that year. The maximum follow-up for all patients each year was set to 365 days in order to normalize data for comparison.

Figure 5

Location of death of patients for whom the QoLS provided consultation (March 2007 – December 2014). *n represents the number of initial QoLS consultations in each calendar year.

Figure 6

Percentage per quarter of deceased St. Jude patients who received palliative care services before death (Quarter 2 2008 – Quarter 4 2014).