Do rules hamper remedies for pain?

BAINBRIDGE ISLAND -- Amy Chouinard suffers from chronic pain that makes sitting, standing and even lying for long periods a torment. Yet every three months, the 50-year-old Bainbridge Island woman makes an excruciating nine-hour drive to Oregon on a simple errand -- to renew her prescription for painkillers.

The reason, she says, is simple: Chouinard can't find a doctor in Washington willing to prescribe her opioids, the strongest class of painkillers, including morphine, OxyContin and Vicodin. Yet she says the potent narcotics offer the only relief for the degenerative disc disorder and fibromyalgia that flay her body with pain and fatigue.

"It's horrible, horrible pain," Chouinard said. "There are many times when I wish I had cancer instead," she adds, so that people might be more empathetic.

And it's unlikely Chouinard will find relief closer to home any time soon.

In March, Washington became the first state in the nation to adopt a suggested daily limit on opioid doses, part of an effort to stem a decadelong trend of rising opioid-related deaths and near doubling of average opioid doses.

While not mandatory, it has alarmed some doctors who specialize in pain and others. Critics worry that the guidelines will further spook doctors who already are rattled by the prosecutions of dozens of physicians around the country in overprescribing narcotics. The consequence, they fear, will make it harder for legitimate patients to obtain powerful painkillers.

The state calls those fears unwarranted and said it simply wants to safeguard against doctors prescribing too many opioids for too long.

"Even physicians themselves don't even realize that patients are getting into trouble," said Dr. Gary Franklin, the medical director of the state's Department of Labor and Industries who helped write the guidelines.

Overdose

Until about a decade ago, doctors reserved opioids largely for patients who had cancer. Wider use has come recently as doctors learn more about pain management and researchers have reported that only a small percentage of patients who properly take opioids ever become addicted. But it wasn't until the late 1990s that Washington's workers'-compensation program began covering opioids.

Almost immediately, accidental deaths became a concern here and elsewhere in the nation. Between 1996 and 2002, 32 injured workers in Washington died after accidentally overdosing on opioids, according to state data.

In 1996, the state's typical workers'-compensation patient took 88 milligrams of morphine-equivalent doses a day. In 2005, the average daily dose was 151 milligrams -- a jump that state officials suspect is caused by an increased tolerance.

Some states already have opioids guidelines for people covered by state programs, such as starting doses for new patients. But Washington has gone further by setting a suggested daily-dosage ceiling.

Long-term use of opioids can pose hazards for both doctors and patients, said Dr. Jeffery Thompson, medical director of Washington Medicaid. For instance, high doses of it can actually exacerbate pain, which then can prompt doctors to prescribe even more.

Physicians who don't specialize in pain treatment "don't have the knowledge or all the tools," Thompson said. "These are very difficult clients."

The state created the opioids guidelines specifically for those primary-care physicians. The advisory is intended for patients with chronic pain, not for people with cancer or temporary pain or pain associated with terminal illnesses.

The guidelines do not dictate a limit on narcotics dosages, and there are no sanctions for exceeding the guidelines.

The biggest fear is that doctors simply will stop prescribing opioids to legitimate patients.

"Because it comes from a government agency, the guidelines could be perceived by many as imposing new restrictions," said Aaron Gilson, an associate director with the Pain & Policy Studies Group at the University of Wisconsin.

The state strongly recommends that patients rarely take more than 120 milligrams of morphine or its equivalent per day (for example, 800 milligrams of codeine is equivalent to 120 milligrams of morphine). For doses above that level, physicians are advised to send patients to pain specialists.

The state also advises doctors to ask patients to take random urine tests to verify that they're taking the prescribed medications, as well as to rule out illegal drug use.

The guidelines were published by the Agency Medical Directors Group, the medical chiefs of six Washington agencies, including those that oversee the workers'-compensation, veterans-affairs, Medicaid and state-employees' health programs.

No ceiling

Pain specialists and patients' advocates are deeply critical, not least because they say the suggested dosage is arbitrary and not justified by any clinical evidence.

Opioids affect every patient differently, they argue. So what might be sufficient for one person won't even dent another person's pain, said Dr. James Gordon, a neurologist at Northwest Hospital in Seattle.

"There is no ceiling to the effects of opioids," he said. For some patients, "the more you get, the better it works."

Marilee Donovan, clinical nurse specialist with Kaiser Permanente Northwest's pain-management clinic in Portland, estimated that 20 percent of her patients exceed the 120-milligram threshold. She said some patients may legitimately warrant 1,000 milligrams or more daily.

"You wouldn't call a diabetic who needs large amounts of insulin an addict," Donovan said.

Gordon, for one, also objects to the state urging random drug tests.

"The assumption is that the drugs are going to be abused unless we monitor them," he said. "That suggestion is at worst inappropriate and at best unnecessary."

All three experts say pain specialists are already scarce, so there won't be enough to handle the anticipated referrals. Patients say it's virtually impossible to find pain specialists in Eastern Washington.

Thompson, the state Medicaid official, rejects the argument that patients will suffer. And it will make things easier on doctors, he says.

"If you use the guidelines, [doctors] are less likely to be sued or get in trouble with the state," he said. "I think we actually improve the health-care system."

Scant help

Amy Chouinard says the past 15 years of unremitting pain would have been unbearable without narcotics. Yet she says she has seen a half a dozen doctors in Washington over the years -- neurologists, anesthesiologists, orthopedists -- who have offered scant help.

They've given her cortisone shots, muscle relaxants and anti-inflammatory drugs, none of which offered lasting relief.

They told her they do not prescribe opioids. Chouinard wonders whether they suspected her of being an addict.

"Most people think I look fine," said Chouinard, a one-time real-estate agent. "It's not like I have a rash or broke my leg."

Five years ago, Chouinard found a doctor in Oregon who would prescribe Norco, a combination of acetaminophen and hydrocodone that is also sold under the brand name Vicodin. Chouinard takes seven pills a day, which adds up to just over half of the state's suggested daily limit. That's only enough medication to dull, not kill, her pain.

Chouinard's Oregon doctor also gives her random urine tests, which helps physicians establish clinical records of their care. Chouinard says she accepts the indignity as the price for partial relief.

"Not having people believe you is almost as bad as having the pain itself," she said. "When you find a doctor like mine, you're so grateful that they believe you."

Kyung Song: 206-464-2423 or ksong@seattletimes.com