Chest
Volume 128, Issue 1, July 2005, Pages 280-287
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Clinical Investigations in Critical Care
Quality of Dying in the ICU: Ratings by Family Members

https://doi.org/10.1016/S0012-3692(15)37958-7Get rights and content

Study objectives

To explore the quality of the dying experience and associations to higher quality ratings for people who died in an ICU.

Design

Retrospective study using medical record review and surveys of family members with the Quality of Dying and Death (QODD) instrument.

Setting

Four ICUs affiliated with a university and a Veterans Affairs Medical Center.

Participants

Ninety-four family members of 38 ICU decedents.

Measurements and results

We explored associations between components of the ICU experience and the overall rating of the quality of the dying experience. Overall, family members reported that symptoms were poorly controlled: pain under control most or all of the time in 47%, and breathing comfortably most or all of the time in 3% of patients. Families expressed a moderate and variable view of the quality of dying resulting in an overall ICU QODD score of 60 ± 14 (on a scale of 0 to 100) [mean ± SD]. Higher ICU QODD scores were associated with control of pain (r = 0.42, p = 0.009), control of events (r = 0.62, p < 0.001), a “preparation for death” aspect of the dying experience—feeling at peace with dying (r = 0.69, p < 0.001), and a “whole-person concern”—keeping one’s dignity and self-respect (r = 0.50, p < 0.001).

Conclusions

After adjusting for symptom and personal care scores, certain whole-person and preparation-for-death aspects of the dying process, and not aggressiveness of end-of-life care, remained the most associated to quality ratings. While future research should explore the important predictors of quality of dying in the ICU, this study suggests that care at the end of life in the ICU include not only managing pain, but also supporting dignity, respect, and peace, and maximizing patient control.

Section snippets

Study Design and Sampling Strategy

We performed interviews with multiple family members of patients who died in an ICU to measure the quality of the dying experience. We enrolled family members of patients who died in any of four ICUs of either a university teaching hospital or an academic Veterans Affairs Medical Center (VA). All deaths during the calendar year 2000 were reviewed for inclusion. Inclusion criteria required that the decedents were at least 21 years old at the time of death and died in the ICU after a stay of at

Recruitment and Patient/Family Characteristics

We identified 365 ICU deaths at the study sites during the study year. One hundred eight decedents met the inclusion criteria, and families of 38% of the eligible decedents were enrolled; details on enrollment were reported in a prior publication.29 The most common reasons cited for nonparticipation of family members were family members feeling too emotional (32%) or only one family member willing to participate (24%). Ninety-four family members completed the interview. Sixty-eight percent of

Discussion

Family members reported a moderate and variable quality of dying and death in the ICU in this study, resulting in an average ICU QODD score of 60 points out of 100 (SD, 14). This average score and SD were comparable to that reported in a prior study23 of all deaths in one community, where the total score was 67 (SD, 15). Our analysis confirmed the importance of pain control for quality dying in the ICU. Consistent with prior studies1113151617 of hospitalized dying, symptoms were infrequently

Conclusion

In conclusion, we found that family members perceive a moderate and variable quality of dying and death in the ICU. The aspects associated with higher family ratings of the quality dying in the ICU, included pain control, control of events, feeling at peace with dying, and keeping one’s dignity and self-respect. Because of the high prevalence of death in the ICU, continued efforts to understand the experience of dying in the ICU will be important for improving quality of care in the ICU

Five Additional ICU Questions Added to the QODD Instrument

How well was X (name) 1 month before her/his death?30 0 = no evidence of disease; no restrictions; 1 = some signs or symptoms of disease, ambulatory, able to carry out light housework or office work; 2 = able to care for most needs of self, unable to carry out work activities, up and about more than half of waking hours; 3 = disabled, limited self care, confined to bed or chair more than half of waking hours, requires special care and assistance; 4 = completely disabled requiring hospital-like

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    This work was performed at Oregon Health & Science University and Portland Veterans Affairs Medical Center.

    This study was supported by grants from the Northwest Health Foundation, the American Lung Association of Oregon, and the General Clinical Research Center of Oregon Health & Science University by National Institute of Health grant PHS 5 M01 RR00334.

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