Family reports of cancer pain, pain relief, and prescription access

PURPOSE: The authors 1) describe family caregiver reports of degree of pain, pain relief, and prescription access in persons with advanced cancer during the last 4 weeks of life and 2) test for differences according to geographic location and care setting. DESCRIPTION OF STUDY: A randomized, stratified sample of 375 caregivers was produced from a list of all state residents who died of cancer in 1994. Written informed consent was received from 170 family caregivers (46%) who were then interviewed by telephone. Caregivers responses regarding pain intensity, pain relief, prescription access, and care setting were analyzed. RESULTS: Eighty-six percent (n = 147) of caregivers reported that pain was a problem, and 61% (n = 103) recalled a great deal to quite a bit of pain compared with 25% (n = 44) who recalled some or little pain. The mean degree of pain was 2.23 (SD +/- 1.32) on a scale of 1 (a great deal) to 5 (no pain). Of 140 caregivers reporting pain relief date, 46% (n = 64) reported that interventions either stopped the pain or that pain became much better, whereas 54% (n = 76) reported that interventions made the pain a little better, had no effect, or made it worse. The overall mean of pain relief was 2.62 (SD +/- .87) on a scale of 1 (usually stopped the pain) to 5 (made it worse). Greater degrees of pain were associated with reports of less pain relief (r = -19; P = .02). No differences in pain or pain relief were found across county type or patient care setting. Caregivers in the institution-only group (n = 61) reported the most pain relief. Many in this latter group were served by hospice and home health nurses and only 4% of the entire sample were served by physicians alone. Notably, 12% (n = 21) of the sample reported problems filling prescriptions. Of these, half had difficulty obtaining medicine because it was "not available." A total of 48 problems with prescription access were found that were distributed evenly across county types and patient care settings. CLINICAL IMPLICATIONS: Findings suggest that caregiver reports about the degree of pain or the effectiveness of pain interventions do not vary by residence or care setting at the end of life. Pain relief is moderate at best. Health professionals in all patient care settings should routinely address the issue of obtaining and paying for prescriptions, and local cancer pain task forces should be formed to advocate for better pain relief. An additional solution is to equip families with problem-solving skills specific to cancer pain.