Fear of investigation can hinder treatment

Survey finds pain management affected

Despite all of its successes in improving care for patients facing the end of life, Oregon still has not made headway in treating pain and suffering, according to researchers at the Center for Ethics in Healthcare at Oregon Health Sciences University in Portland.

Statewide, Oregon has made aggressive moves over the past decade to improve health care for its residents — particularly those facing serious or terminal illnesses. And initiatives aimed at improving end-of-life care planning, access to hospice care, and use of advance directives and living wills have all reported overwhelming success, says Susan Tolle, MD, the center’s director. "But when people die, we are not seeing progress with treatment of pain," she explains. "We are seeing progress on every other front, but not that one."

In 2000, the center published a study in the Western Journal of Medicine reporting that 54% of family members of dying patients in 1998 reported their loved one experienced moderate or severe pain in the last week of life.1 In addition, the study said previously gathered data showed that the percentage of dying patients who complained of pain increased from 33% in late 1997 to 57% in 2000.

Although researchers could not be certain why such a dramatic increase was reported, the feeling at the time was that there was both a greater awareness about pain treatment options on the part of family members and a noticeable change in physician prescribing practices due to increased fears of regulatory sanctions, says Tolle.

Now, the Center for Ethics in Healthcare has gone back to take a second look at the number of patients and families reporting pain and suffering at the end of life, expecting to find improvement, says Tolle. They were wrong. "What we are finding is that there is something different about the politics of changing end-of-life planning, and making that work, and changing the practice of pain management," she says. "There appears to be something more vulnerable about pain management, and we have certainly found it harder to bring about profound change."

In most situations, it is not a case of a physician or nurse consciously deciding to undertreat a patient’s pain, but rather there being an overall tendency to be conservative rather than aggressive when treating pain, she says.


1. Tolle SW, Tilden VP, Hickman SE, et al. Family reports of pain in dying hospitalized patients: A structured telephone survey. West J Med 2000; 172:374-377.