Title: Adequacy of treatment in terminally ill patients
Abstract: Authors' replySir—Rianne de Wit suggests that objective measures rather than patients' satisfaction should be used to assess pain.The most important outcome at the end of life is the actual measure of patients' experiences, because that is what must be at the optimum in the last days of life. Objective measures that do not correlate with experiences patients deem important are distracting; they frequently make physicians focus on making the numbers better rather than improving the lives of patients.Contrary to the prevailing emphasis on pain as the key outcome for end-of-life care, we noted that most patients were willing to tolerate pain even when it was substantial, to avoid troublesome side-effects. We agree that the intensity of pain for dying patients is too high and advocate the development of better pain treatments. However, these data also suggest that in trying to improve care at the end of life, we should not focus only on pain and the intensity of pain. Other things matter, and according to our data these things matter more than pain intensity to dying patients. Assessment of the quality of end-of-life care on pain intensity is a less relevant outcome measure than that of side-effects and other symptoms, such as depression, confusion, and incontinence.We agree that patients' education about pain management needs to be a priority. Patients' opinions of over-medication and inevitable addiction are counterproductive to achieving satisfactory treatment. Indeed, patients need to be informed that pain relief can be achieved and in a way that does not result in many of the feared side-effects. Authors' reply Sir—Rianne de Wit suggests that objective measures rather than patients' satisfaction should be used to assess pain. The most important outcome at the end of life is the actual measure of patients' experiences, because that is what must be at the optimum in the last days of life. Objective measures that do not correlate with experiences patients deem important are distracting; they frequently make physicians focus on making the numbers better rather than improving the lives of patients. Contrary to the prevailing emphasis on pain as the key outcome for end-of-life care, we noted that most patients were willing to tolerate pain even when it was substantial, to avoid troublesome side-effects. We agree that the intensity of pain for dying patients is too high and advocate the development of better pain treatments. However, these data also suggest that in trying to improve care at the end of life, we should not focus only on pain and the intensity of pain. Other things matter, and according to our data these things matter more than pain intensity to dying patients. Assessment of the quality of end-of-life care on pain intensity is a less relevant outcome measure than that of side-effects and other symptoms, such as depression, confusion, and incontinence. We agree that patients' education about pain management needs to be a priority. Patients' opinions of over-medication and inevitable addiction are counterproductive to achieving satisfactory treatment. Indeed, patients need to be informed that pain relief can be achieved and in a way that does not result in many of the feared side-effects. Adequacy of treatment in terminally ill patientsStefan Weiss and colleagues (April 28, p 1311)1 report that the number of inadequately treated patients among terminally ill patients is not as large as perceived, based on the fact that most patients are willing to tolerate pain. In reaction, Sam Hjelmeland Ahmedzai in his April 28 commentary2 argues that patients choose pain because the alternative of troublesome side-effects is even worse. Weiss' study is unique because of the large number of patients from various diagnostic groups. I suggest, however, that Weiss' conclusion might be based on a misinterpretation of results. Full-Text PDF