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Fear of investigation can hinder treatment
Survey finds pain management impacted
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, report researchers at Oregon Health Sciences University’s Center for Ethics in Healthcare.
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, 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. Why is it that we can make so much headway, have giant coalitions of people who work on this state-wide, in every hospice and nursing home, and elsewhere — we have all of our change agents in action — yet, in every study we’ve done, I can’t find any improvement in the management of pain."
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 center reported then that previously gathered data showed that complaints of pain levels of dying patients increased to 57% from 33% in late 1997.
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 by family members, coupled with an noticeable change in physician prescribing practices due to increased fears of regulatory sanctions, says Tolle.
"Late 1997 was a volatile time in Oregon’s political and regulatory climate. Events such as the legalization of physician-assisted suicide and an extensive pre-ballot media campaign about end-of-life care were just a couple of things happening at the time," she notes.
Threats make no difference
In 1999, the Oregon state medical board became the first in the nation to discipline a physician for the undertreatment of pain and the state’s physicians were put on alert that failure to adequately treat pain could endanger their medical licenses.
Since that time, 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.
"We have some studies that are still in press, but 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."
The recent report by the nonprofit group Last Acts, Means to a Better End: A Report on Dying in America Today, featured a state-by-state analysis of how states scored on several key end-of-life care issues. When it came to pain management, Oregon ranked in the lower 50, Tolle adds.
"Some of that may be that we have taught people to better ask about and record information about levels of pain," she says. "But I have no information that we have seen reduced suffering, and we do studies all the time. We have a whole research program devoted to end-of-life care."
Surveys conducted by the center asked physicians about the reports of pain at the end of life, says Tolle.
The cause, according to those surveyed, was that "sometimes their colleagues were prescribing less" medication than was necessary, she reports.
When asked why they would be prescribing less, the respondents indicated fear of investigation by the state medical board and fear of investigation by the Drug Enforcement Agency.
"What this says is that fearfulness and perception are real and they are a factor in the problem of inadequate treatment of pain and suffering in the dying," she says.
In most situations, it is not a case of a physician or nurse consciously deciding to undertreat a patient’s pain, but with their overall tendency to be conservative rather than aggressive when treating pain, she says.
"We are not talking about people prescribing zero — we are talking about prescribing less than what is necessary to achieve relief," she notes. "The nurse calls and says, This patient is in terrible pain.’ And they say, Give a little bit more,’ instead of saying, Double the medication and call me back in 15 minutes.’"
The surveys also indicated that nurses were not being very aggressive in pursuing the physicians and aggressively treating the patient’s pain when they could, Tolle says.
"If they have a range, 10-15 mg every two to four hours, are they giving 10 every four, instead of 15 every two?" she asks.
The responses of health care providers surveyed indicates that most of the reluctance is operating on a subliminal level with health care providers who are very risk averse and afraid of getting into trouble or being singled out.
"I think most providers want to avoid any scrutiny at all," Tolle notes. "If they hear about a physician who was investigated by the medical board and then cleared, after all the publicity is over and everything is said and done, it doesn’t matter much to them that the charges were dropped. They don’t want to face that at all," she notes. "If you are a new doctor and you just graduated from medical school with $120,000 in loan debt, how likely are you to be willing to take that chance?"
The current climate, with the U.S. attorney general promising to scrutinize all prescribing of controlled substances by Oregon physicians, promises to put the state’s doctors in even more of a squeeze, she says.
"We are concerned and trying to emphasize to Oregon’s doctors that they should document more, not prescribe less," she says. "If you write in the chart, metastatic cancer, pain 10, morphine doubled,’ can your intention be more clear?"
That’s the message the center is sending, she says. But she fears her words will get lost in a cloud of misperception.
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(6):374-7.