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The Quality Of Dying And Death: Is It Ready For Use As An Outcome Measure?

J. Randall Curtis, Lois Downey, Ruth A. Engelberg
Published 2013 · Medicine
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phase after the 2011 great East Japan earthquake: pneumonia as a signifi cant reason for hospital care. and Escherichia coli lung infection after a tsunami disaster. If you can't measure it, you can't improve it. Not everything that counts can be measured. Not everything that can be measured counts. T he juxtaposition of these two quotes is not novel, but it is particularly appropriate for a discussion of measuring the quality of dying and death. The quote by Lord Kelvin captures the challenge that gave rise to efforts to develop a measure of the quality of dying and death. In the past 3 decades, landmark studies highlighted the poor quality of end-of-life care, with many patients dying with signifi cant pain and other symptoms while receiving a high intensity of life-sustaining treatments they did not want, and families often were left with tremendous emotional and fi nancial burdens. 1-4 As a result of these fi ndings, and in line with Lord Kelvin's adage, efforts arose to develop accurate measures of the quality of the dying experience. The Quality of Dying and Death (QODD) questionnaire was one such measure developed from a conceptual model that separated the following three related concepts: the quality of end-of-life care, the quality of life at the end of life, and the quality of dying and death. 5 In the 1990s, our research group set out to develop a measure of the quality of dying and death. We used focus groups; one-on-one interviews with patients, family members, and clinicians; and a literature review to create a 31-item measure that asked participants to rate each item on a scale from 0 to 10, where 0 was a terrible experience and 10 was an almost perfect experience. 6 We chose to conduct these ratings after death to capture the full experience of dying, although this limited us to respondents other than the patient. We then conducted a series of studies that assessed the reliability and validity of this measure across a range of settings, including the community, hospice, hospital, and ICU. 7-11 We created a total score by simply summing the scores on the items that were completed and linearly transforming to a score from 0 to 100. Psychometric analyses of the QODD suggested moderate adherence to the following classic measurement standards: total scores with no fl oor or ceiling effects, an approximately normal distribution and good reliability …
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