Vol IIX, Oct `04

• When does palliative care begin? Does it only begin when death is imminent?
• What happens when palliative care is started sooner rather than later?
• What are the advantages and disadvantages of agreeing with patients to withhold certain care interventions early in their illness versus when death is imminent?
• Why is the average time of hospice time two weeks? Are outcomes improved by earlier admission to hospice?
• What is the patient’s perspective on end-of-life care? What difference do educational initiatives make? What happens when we get terminal patients more involved in their care?

Hughes urges researchers to address questions that are “generalizable.” She observes, “There is a lot of information in case studies and other reports that involve a handful of patients. We need more studies that look at large numbers of patients. This calls for practitioners to partner with colleagues in other facilities so that they can pool their resources and involve more patients in their studies.” Hughes suggests that novices can minimize their lack of experience by “seeking out opportunities to work with experienced researchers.” “Focus on individuals who are really trying to make a difference in end-of-life care randomized clinical trials,” she recommends. She adds, “Collaborate with other researchers who have strengths to make up for your weaknesses.”

It is essential to consider how a research question fits into the large scope of research. “You really need to focus on something that will make a difference or change practice. This is especially important because research dollars are becoming tight,” says Hughes. Before you pursue an idea, she suggests asking yourself, “How does my idea fit in with all the research out there on end-of-life care and what do physicians need to know to provide better care to terminally ill patients?”