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Original Research: CRITICAL CARE MEDICINE |

Potential for Response Bias in Family Surveys About End-of-Life Care in the ICU

Erin K. Kross, MD; Ruth A. Engelberg, PhD; Sarah E. Shannon, RN, PhD; J. Randall Curtis, MD, MPH, FCCP
Author and Funding Information

Affiliations: From the Division of Pulmonary and Critical Care Medicine (Dr. Kross) and Division of Pulmonary and Critical Care Medicine (Drs. Engelberg and Curtis), Harborview Medical Center, and the Department of Biobehavioral Nursing and Health Systems (Drs. Shannon and Curtis), School of Nursing, University of Washington, Seattle, WA.

Correspondence to: J. Randall Curtis, MD, MPH, FCCP, Professor of Medicine, Division of Pulmonary and Critical Care, Box 359762, Harborview Medical Center, University of Washington, Seattle, WA 98104; e-mail: jrc@u.washington.edu


This research was performed at Harborview Medical Center, University of Washington, Seattle, WA.

Funding/Support: This study was funded by a grant from the National Institute of Nursing Research [R01NR05226].

Reproduction of this article is prohibited without written permission from the American College of Chest Physicians (www.chestjournal.org/site/misc/reprints.xhtml).


© 2009 American College of Chest Physicians


Chest. 2009;136(6):1496-1502. doi:10.1378/chest.09-0589
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Background:  After-death surveys are an important source of information about the quality of end-of-life care, but response rates generally are low. Our goal was to understand the potential for nonresponse bias in survey studies of family members after a patient's death in the hospital ICU by identifying differences in patient demographics and delivery of palliative care between patients whose families respond to a survey about end-of-life care and those whose families do not.

Methods:  We performed a cohort study of patients who died in the ICU at 14 hospitals. Surveys were mailed to family members 1 to 2 months after the patient's death. Chart abstraction was completed on all patients, assessing demographic characteristics and previously validated indicators of palliative care.

Results:  Of the 2,016 surveys sent to families, 760 were returned, for a response rate of 38%. Patients whose family members returned the surveys were more likely to be white (88% vs 74%, respectively; p < 0.001); to be older (71 years vs 69 years, respectively; p = 0.015); and to have received more indicators of palliative care, including medical record documentation of family present at death, involvement of spiritual care, and dying after a decision to limit life-sustaining therapies (p < 0.05).

Conclusions:  Patients whose family members responded to a survey about end-of-life care were more likely to be white, older, and have indicators of palliative care documented in the medical record. Because these patients likely received higher quality palliative care, these findings suggest that the response bias in end-of-life care research is toward overestimating the quality of palliative care.

Trial registration:  ClinicalTrials.gov Identifier: NCT00685893

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