ABSTRACT
Investigators who conduct clinical pain research are required to obtain voluntary informed consent from patients. However, little is known about what information patients expect when they decide whether to enroll in such studies. It is important that investigators understand these information needs so they can effectively and clearly describe the research risks and potential benefits that matter to potential subjects. By understanding these needs for information, investigators may also be better able to anticipate patients' concerns and to recruit subjects more efficiently. This study was designed to define information needs that patients have when they decide whether to participate in clinical pain research. This paper describes these information needs, and identifies clinical and demographic variables associated with specific needs.
Subject(s)
Informed Consent , Pain/psychology , Patient Education as Topic , Patient Satisfaction , Adult , Aged , Aged, 80 and over , Clinical Trials as Topic/standards , Female , Humans , Male , Middle Aged , Pain/drug therapy , Patient SelectionABSTRACT
OBJECTIVES: To assess the possible benefits and challenges of hospice involvement in nursing home care by comparing the survival and needs for palliative care of hospice patients in long-term care facilities with those living in the community. DESIGN: Retrospective review of computerized clinical care records. SETTING: A metropolitan nonprofit hospice. PARTICIPANTS: The records of 1,692 patients were searched, and 1,142 patients age 65 and older were identified. Of these, 167 lived in nursing homes and 975 lived in the community. MEASUREMENTS: Patient characteristics, needs for palliative care, and survival. RESULTS: At the time of enrollment, nursing home residents were more likely to have a Do Not Resuscitate order (90% vs 73%; P < .001) and a durable power of attorney for health care (22% vs 10%; P < .001) than were those living in the community. Nursing home residents also had different admitting diagnoses, most notably a lower prevalence of cancer (44% vs 74%; P < .032). Several needs for palliative care were less common among nursing home residents, including constipation (1% vs 5%; P = .02), pain (25% vs 41%; P < .001), and anticipatory grief (1% vs 9%; P < .001). Overall, nursing home residents had fewer needs for care (median 0, range 0-3 vs median 1, range 0-5; rank sum test P < .001). Nursing home residents had a significantly shorter survival (median 11 vs 19 days; log rank test of survivor functions P < .001) and were less likely to withdraw from hospice voluntarily (8% vs 14%; P = .03). However, there was no difference in the likelihood of becoming ineligible during hospice enrollment (6% for both groups). CONCLUSIONS: These results suggest that hospices identify needs for palliative care in a substantial proportion of nursing home residents who are referred to hospice, although nursing home residents may have fewer identifiable needs for care than do community-dwelling older people. However, the finding that nursing home residents' survival is shorter may be of concern to hospices that are considering partnerships with nursing homes. An increased emphasis on hospice care in nursing homes should be accompanied by targeted educational efforts to encourage early referral.
