Survey burden for family members surveyed about end-of-life care in the intensive care unit

Abstract

Context: Family surveys are an important source of information about quality of end-of-life care in the intensive care unit (ICU). The burden associated with completing such surveys is not well studied.

Objectives: 1) To assess the predictors of burden that families report with completing surveys for patients who died in the ICU and 2) to examine associations between quality-of-care ratings and survey burden.

Methods: Data were collected from 14 hospitals as part of a cluster randomized trial to integrate palliative care into the ICU. Survey questions included demographics, quality of dying, satisfaction with care, and overall level of burden associated with survey completion. Patient characteristics were identified from chart abstraction and death certificates. Multivariable linear regression with robust SEs was used to examine associations between survey burden, subject characteristics, and family ratings of quality of care.

Results: Of the families surveyed, 62% rated the survey to be no or low burden. Family members of older patients reported less survey burden (P = 0.016), and those who lived with the patient reported higher survey burden (P = 0.043). Family members reporting lower ratings of satisfaction with care and quality of dying reported higher survey burden (P < 0.001).

Conclusion: Most families reported no to low burden. Family members who live with their loved one are particularly vulnerable to survey burden and those of older patients report less burden. The association between low quality-of-care ratings and survey burden suggests that the response bias in this type of research is toward overestimating quality of care.

Trial registration: ClinicalTrials.gov NCT00685893.

Figure 1

Distribution of ratings of survey burden by 1079 family members completing a survey of end-of-life care in the ICU