Forms or Free-Text? Measuring Advance Care Planning Activity Using Electronic Health Records

Sophia N Zupanc; Joshua R Lakin; Angelo E Volandes; Michael K Paasche-Orlow; Edward T Moseley; Daniel A Gundersen; Sophiya Das; Akhila Penumarthy; Diana Martins-Welch; Edith A Burns; Maria T Carney; Jennifer E Itty; Kaitlin Emmert; James A Tulsky; Charlotta Lindvall

doi:10.1016/j.jpainsymman.2023.07.016

Forms or Free-Text? Measuring Advance Care Planning Activity Using Electronic Health Records

J Pain Symptom Manage. 2023 Nov;66(5):e615-e624. doi: 10.1016/j.jpainsymman.2023.07.016. Epub 2023 Aug 1.

Authors

Affiliations

¹ Department of Psychosocial Oncology and Palliative Care (S.N.Z., J.R.L., E.T.M., S.D., A.P., J.A.T., C.L.), Dana-Farber Cancer Institute, Boston, Massachusetts.
² Department of Psychosocial Oncology and Palliative Care (S.N.Z., J.R.L., E.T.M., S.D., A.P., J.A.T., C.L.), Dana-Farber Cancer Institute, Boston, Massachusetts; Harvard Medical School (J.R.L., A.E.V., J.A.T.), Boston, Massachusetts; Department of Medicine (J.R.L., J.A.T.), Brigham and Women's Hospital, Boston, Massachusetts.
³ Harvard Medical School (J.R.L., A.E.V., J.A.T.), Boston, Massachusetts; Department of Medicine (A.E.V.), Massachusetts General Hospital, Boston, Massachusetts; ACP Decisions (A.E.V.), Waban, Massachusetts.
⁴ Department of Medicine (M.K.P.), Tufts Medical Center, Boston, Massachusetts.
⁵ Department of Psychosocial Oncology and Palliative Care (S.N.Z., J.R.L., E.T.M., S.D., A.P., J.A.T., C.L.), Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Computer Science (E.T.M.), School of Engineering, Tufts University, Medford, Massachusetts.
⁶ Survey and Qualitative Methods Core (D.A.G.), Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Social and Behavioral Sciences (D.A.G.), Harvard T.H. Chan School of Public Health, Boston, Massachusetts.
⁷ Institute of Health System Science (D.M.W., E.A.B., M.T.C., J.E.I., K.E.), Feinstein Institutes for Medical Research, Manhasset, New York; Department of Medicine (D.M.W., E.A.B., M.T.C.), Zucker School of Medicine Hofstra/Northwell, New Hyde Park, New York.
⁸ Institute of Health System Science (D.M.W., E.A.B., M.T.C., J.E.I., K.E.), Feinstein Institutes for Medical Research, Manhasset, New York.
⁹ Department of Psychosocial Oncology and Palliative Care (S.N.Z., J.R.L., E.T.M., S.D., A.P., J.A.T., C.L.), Dana-Farber Cancer Institute, Boston, Massachusetts; Harvard Medical School (J.R.L., A.E.V., J.A.T.), Boston, Massachusetts; Department of Medicine (J.R.L., J.A.T.), Brigham and Women's Hospital, Boston, Massachusetts. Electronic address: Charlotta_Lindvall@dfci.harvard.edu.

PMID: 37536523
PMCID: PMC10592170 (available on 2024-11-01)
DOI: 10.1016/j.jpainsymman.2023.07.016

Abstract

Advance care planning (ACP) discussions seek to guide future serious illness care. These discussions may be recorded in the electronic health record by documentation in clinical notes, structured forms and directives, and physician orders. Yet, most studies of ACP prevalence have only examined structured electronic health record elements and ignored data existing in notes. We sought to investigate the relative comprehensiveness and accuracy of ACP documentation from structured and unstructured electronic health record data sources. We evaluated structured and unstructured ACP documentation present in the electronic health records of 435 patients with cancer drawn from three separate healthcare systems. We extracted structured ACP documentation by manually annotating written documents and forms scanned into the electronic health record. We coded unstructured ACP documentation using a rule-based natural language processing software that identified ACP keywords within clinical notes and was subsequently reviewed for accuracy. The unstructured approach identified more instances of ACP documentation (238, 54.7% of patients) than the structured ACP approach (187, 42.9% of patients). Additionally, 16.6% of all patients with structured ACP documentation only had documents that were judged as misclassified, incomplete, blank, unavailable, or a duplicate of a previously entered erroneous document. ACP documents scanned into electronic health records represent a limited view of ACP activity. Research and measures of clinical practice with ACP should incorporate information from unstructured data.

Keywords: Advance care planning; electronic health records; natural language processing; palliative care; research design.

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Review

Abstract

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