title: Understanding the experience of pain in terminally ill patients.
abstract: BACKGROUND
  Terminally ill patients commonly experience substantial pain. Unresolved pain has been cited as evidence that end-of-life care is of poor quality. However, the data on which that conclusion is based are limited. We aimed to provide additional data on the experience of pain in such patients.
  
  
  METHODS
  We interviewed 988 terminally ill patients from six randomly selected US sites. We asked them who had treated their pain in the previous 4 weeks (primary-care physician, pain specialist, or both), and whether they wanted more pain medication than they were receiving, or why they did not want more.
  
  
  RESULTS
  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 wanting additional therapy were offered-fear of addiction, dislike of mental or physical side-effects, and not wanting to take more pills or injections. We saw no association between disease and amount of pain between disease and the desire for more treatment. Black patients were more likely to seek additional pain therapy, see a pain specialist, and refuse additional medication because of fear of addiction than other populations.
  
  
  CONCLUSIONS
  Although half of terminally ill patients experienced moderate to severe pain, only 30% of them wanted additional pain treatment from their primary-care physician. The number of patients experiencing pain remains 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.
authors.affiliation: Department of Clinical Bioethics, Warren G Magnuson Clinical Center, National Institutes of Health, Building 10, Room 1C118, Bethesda, MD 20892, USA. sweiss@nih.gov
authors.forename: S C
authors.initials: SC
authors.lastname: Weiss
authors.forename: L L
authors.initials: LL
authors.lastname: Emanuel
authors.forename: D L
authors.initials: DL
authors.lastname: Fairclough
authors.forename: E J
authors.initials: EJ
authors.lastname: Emanuel
mesh_terms: D000328:Adult; D000368:Aged; D000700:Analgesics / Q000009:adverse effects / Q000627:therapeutic use*; D016009:Chi-Square Distribution; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D010146:Pain / Q000188:drug therapy* / Q000523:psychology*; D010147:Pain Measurement; D010166:Palliative Care; D012959:Socioeconomic Factors; D013727:Terminal Care; D016312:Treatment Refusal / Q000523:psychology; D014481:United States
chemical_list: D000700:Analgesics