Understanding the experience of pain in terminally ill patients

Background Terminally ill patients commonly experience substantial pain. Un resolved pain has been cited as evidence that end-of-life care is of poor q uality. However, the data on which that conclusion is based are limited. We aimed to provide additional data on the experience of pain in such patient s. Methods We interviewed 988 terminally ill patients from six randomly select ed US sites. We asked them who had treated their pain in the previous 4 wee ks (primary-care physician, pain specialist, or both), and whether they wan ted more pain medication than they were receiving, or why they did not want more. Findings 496 (50%) terminally ill patients reported moderate or severe pain . 514 (52%) individuals had seen a primary-care physician for treatment of pain in the previous 4 weeks and 198 (20%) saw a pain specialist. Of those who had been treated by their primary-care physician, 287 (29%) wanted more therapy, 613 (62%) wanted their pain therapy to remain the same, and 89 (9 %) wanted to reduce or stop their pain therapy. Several reasons for not wan ting additional therapy were offered-fear of addiction, dislike of mental o r physical side-effects, and not wanting to take more pills or injections. We saw no association between disease and amount of pain between disease an d the desire for more treatment. Black patients were more likely to seek ad ditional pain therapy, see a pain specialist, and refuse additional medicat ion because of fear of addiction than other populations. Interpretation Although half of terminally ill patients experienced moderat e to severe pain, only 30% of them wanted additional pain treatment from th eir primary-care physician. The number of patients experiencing pain remain s too high. However, the number is not as large as perceived. Additionally, most are willing to tolerate pain. Furthermore, the experience of pain is constant across major terminal diseases.