A new study reveals the lack of research in end of life care resulting in an information gap that damages the quality of hospice care overall.
When you hear about medical breakthroughs like an experimental drug, the term “randomized controlled trial” (RCT) is often associated with the news. That’s because RCTs are considered the gold standard when it comes to unbiased clinical research. When investigators are conducting an RCT, that means one randomly chosen group of participants will receive a new treatment, while the other group will receive a control treatment—this might be the standard treatment commonly used, or a placebo treatment, or no treatment at all.
One of the challenges in providing hospice care is that there are so few RCTs that have been done in hospice settings. In fact, a University of Missouri School of Medicine researcher recently discovered that only 10 RCTs have taken place in U.S. hospices since 1985. Ten in 30 years! That sluggish pace is causing an information gap that damages the quality of hospice care overall.
“Improving care for hospice patients and their families depends, at least in part, on conducting high-quality research in hospice settings,” said Robin Kruse, Ph.D., research professor in the Department of Family and Community Medicine at the MU School of Medicine. “Research is how we make things better. Without research, we either maintain the status quo or implement programs that lack evidence.”
More troubling, none of the 10 studies identified by Kruse and her colleagues directly addressed managing pain—one of the biggest issues for hospice patients and their caregivers. Pain management for hospice patients currently relies heavily on research conducted on other patient populations, such as cancer patients. However, Kruse notes, “without targeted studies specifically in hospices, no one can know for sure if those are the best practices.”
RCTs can be hard to conduct in hospices since patients are so close to the end of their lives, but Kruse suggests several strategies that researchers could use, including using research staff who are embedded in hospices, and mining electronic health records for patient data.
The more RCTs that can be conducted in hospice settings, the better care can be given during the last part of people’s lives. It’s such an important transition for patients and their families; it seems well worth the effort to study it.