Novel Data Linkages to Characterize Palliative and End-Of-Life Care: Challenges and Considerations

J Pain Symptom Manage. 2019 Nov;58(5):851-856. doi: 10.1016/j.jpainsymman.2019.07.017. Epub 2019 Jul 23.


Context: Working groups have called for linkages of existing and diverse databases to improve quality measurement in palliative and end-of-life (EOL) care, but limited data are available on the challenges of using different data sources to measure such care.

Objectives: To assess concordance of data obtained from different sources in a novel linkage of death certificates, electronic health records (EHRs), cancer registry data, and insurance claims for patients who died with cancer.

Methods: We joined a database of Washington State death certificates and EHR to a data repository of commercial health plan enrollment and claims files linked to registry records from Puget Sound Cancer Surveillance System. We assessed care in the last month including hospitalizations, intensive care unit (ICU) admissions, emergency department visits, imaging scans, radiation, and hospice, plus chemotherapy in the last 14 days. We used a Chi-squared test to compare differences between health care in EHR and claims.

Results: Records of hospitalization, ICU use, and emergency department use were 33%, 15%, and 33% lower in EHR versus claims, respectively. Radiation, hospice, and imaging were 6%, 14%, and 28% lower, respectively, in EHR, but chemotherapy was 4% higher than that in claims. These differences were statistically different for hospice (P < 0.02), hospitalization, ICU, ER, and imaging (all P < 0.01) but not radiation (P = 0.12) or chemotherapy (P = 0.29).

Conclusion: We found substantial variation between EHR and claims for EOL health-care use. Reliance on EHR will miss some health-care use, while claims will not capture the complex clinical details in EHR that can help define the quality of palliative care and EOL health-care utilization.

Keywords: Palliative care; cancer; databases; electronic health records; end-of-life; insurance claims.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Databases, Factual
  • Electronic Health Records
  • Hospice Care / methods
  • Hospitalization
  • Humans
  • Information Storage and Retrieval
  • Intensive Care Units
  • Palliative Care / methods*
  • Registries
  • Terminal Care / methods*
  • United States