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Original Investigation
August 2015

End-of-Life Care Intensity Among Adolescent and Young Adult Patients With Cancer in Kaiser Permanente Southern California

Author Affiliations
  • 1Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts
  • 2Division of Population Sciences’ Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, Massachusetts
  • 3Department of Research and Evaluation, Kaiser Permanente Southern California, Pasadena
  • 4Kaiser Permanente Southern California, Pasadena
  • 5Department of Pediatric Oncology, Kaiser Permanente Southern California, Pasadena
JAMA Oncol. 2015;1(5):592-600. doi:10.1001/jamaoncol.2015.1953

Importance  Cancer is the leading disease-related cause of death among adolescents and young adults (AYAs), but little is known about the care that AYA patients with cancer receive at the end of life (EOL).

Objective  To evaluate the intensity of EOL care among AYA patients with cancer.

Design, Setting, and Participants  Cross-sectional study of Kaiser Permanente Southern California (KSPC) cancer registry data and electronic health records for 663 AYA patients with either stage I to III cancer and evidence of cancer recurrence or stage IV cancer at diagnosis. All patients were treated within KSPC, an integrated health care delivery system, and died between 2001 and 2010 before age 40 years (age range at time of death, 15-39 years).

Main Outcomes and Measures  (1) Chemotherapy use in the last 14 days of life; (2) intensive care unit (ICU) care in the last 30 days of life; (3) more than 1 emergency department (ED) visit in the last 30 days of life; (4) hospitalization in the last 30 days of life; and (5) a composite measure of medically intensive EOL care including any of the aforementioned measures.

Results  Eleven percent of patients (72 of 663) received chemotherapy within 14 days of death. In the last 30 days of life, 22% of patients (144 of 663) were admitted to the ICU; 22% (147 of 663) had more than 1 ED visit; and 62% (413 of 663) were hospitalized. Overall, 68% of patients (449 of 663) received at least 1 medically intensive EOL care measure.

Conclusions and Relevance  Most AYA patients received at least 1 form of medically intensive EOL care. These findings suggest the need to better understand EOL care preferences and decision making in this young population.