What Is the True State of Family Satisfaction With Palliative Care?

Although much of the research regarding end-of-life care has depended on survey responses from patients’ family members, response rates typically are low (ie, ≤ 65%). In a recent investigation by Erin K. Kross, MD, of Harborview Medical Health Systems, Seattle, and colleagues, the characteristics of the typical survey responder may lead to study findings that overestimate the quality of palliative care.

As reported in the December 2009 Chest, Dr. Kross and colleagues mailed questionnaire booklets, which included the Quality of Dying and Death questionnaire and the Family Satisfaction with the ICU survey, to the families of patients from 14 hospitals in the Seattle-Tacoma, Washington, area who had died within the past two months in the ICU after a minimum stay of six hours and within 30 hours of transfer from the ICU. Families were instructed to complete the surveys, or to return blank questionnaires or to contact the study office by telephone to withdraw from the study. Subsequently, families were categorized as responders or nonresponders. Data from patients’ charts were abstracted, including educational level, marital status, and estimated median income.

Of 2,016 eligible deaths with chart abstraction data during the study period, 706 had a survey packet completed by a family member (response rate, 37.7%). Across hospital sites, the response rates differed significantly—from 20.8% to 63.0%. “Family members of patients who were white, older, and married were more likely to respond to the survey than family members of nonwhite, younger, or unmarried patients,” the investigators observed. Patient sex, type of insurance, ICU length of stay, education level, admission source to the hospital, trauma as a cause of death, or estimated income did not appear to be factors.

Family presence at the time of death, dying after a decision to limit life- sustaining therapies, and spiritual care involvement while in the ICU increased likelihood of families responding to the survey, after adjustment for age, sex, race, and hospital site. These “indicators of palliative care” are associated with high family ratings of the quality of dying or high ratings of family satisfaction with care, the investigators noted, citing previous research.

The response rates observed in the current study are consistent with that seen in prior investigations, the researchers noted. Prior studies also have shown that “black patients, on average, prefer and receive more aggressive life-sustaining treatments than white patients; therefore, the differences in response rates between white and nonwhite patients’ family members may introduce additional bias in the assessment of quality of end-of-life care in the hospital ICU,” the study authors added.

The investigators acknowledged several limitations, including their inability to determine the reasons for nonresponse, which may include lack of contact information and a perceived respondent burden for having to fill out a long, detailed survey. In addition the researchers were not able to determine the differences between families who chose not to return the survey and those who never received it. However, the strengths of the study included the large number of patients who died in the ICU and the variety and number of hospital sites.

—Adriene Marshall

Suggested Reading
Kross EK, Engelberg RA, Shannon SE, Curtis JR. Potential for response bias in family surveys about end-of-life care in the ICU. Chest. 2009;136(6)1496-1502.

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