As physicians tighten their prescribing practices for opiates, patients feel punished for the actions of doctors they’ve never seen, such as at the now-closed Seattle Pain Centers. Patients deserve more understanding, experts say.
Chris Hegge has been taking opioids almost 20 years for relief from seven back surgeries, including a spinal fusion.
The drugs have helped him walk his dog, practice tai chi and lead a relatively pain-free life, said Hegge, 57.
But now the doctor he has relied on for relief is in trouble. His medical license was suspended in December for what state officials called “unprofessional” prescribing practices.
Hegge scrambled to find a new doctor before his pills ran out and pain and withdrawal kicked in. His current doctor wants to cut his dose by 10 percent a month.
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Hegge says he’s being punished for others’ misdeeds. “Why do innocent patients have to suffer because of doctors being investigated? Instead of fighting chronic pain,” Hegge said, “I’m fighting the system.”
After years of surging opioid prescriptions, leading to addiction and deaths, the pendulum swung back hard against abuse, culminating in the July shutdown of the Seattle Pain Centers (SPC), a chain of eight Washington clinics. That state action, amid allegations of improper oversight that may have contributed to patient deaths, sent 8,000 patients looking for new providers.
Pain-treatment experts express sympathy for “legacy” patients like Hegge, who were prescribed high doses of opioids before a new approach took hold with new state rules in 2012.
“They have reason to be upset because frankly they were caught up in a medical experiment that high-dose opiates were the way to go,” said Dr. David Tauben, chief of pain medicine at the University of Washington.
“It could take years to get these folks’ (doses) down because their bodies have been so transformed by exposures that create changes in the brain, spinal cord and elsewhere.”
Their problems are compounded by doctors who now fear sanctions for prescribing high doses — fears that may come from misunderstanding the state’s rules. Doctors don’t have to slash dosing for legacy patients, according to Tauben and others. It says so in state and federal guidelines.
That’s not much relief for Hegge.
“It’s like a primitive voice in my head keeps repeating, ‘have pain, stop the pain,’ ” he said, about a visit last month to an emergency room to seek help for pain, anxiety and symptoms of withdrawal.
“Never goes away”
Some doctors have long been reluctant to treat chronic non-cancer pain patients. With concerns about abuse and overdoses, and the complexity of diagnosing and treating pain, such patients tend to require more monitoring than a doctor’s schedule often allows.
“The amount of work to manage those patients safely and effectively is really high,” said Dr. Tom Schaaf, a member of an opioid-practices task force convened by the state medical and hospital associations.
No one knows what happened to all of the SPC patients and if any resorted to dangerous street drugs. Tauben, Schaaf and others believe the vast majority found new providers. Some were treated for withdrawal in emergency rooms.
“But from an ER perspective we’re not seeing large numbers of folks having difficulty accessing pain management at this point,” said Dr. Nathan Schlicher, an emergency physician in Tacoma, and member of the state opioid task force.
There was one suicide thought to be linked to the closure of SPC. Denny Peck, 58, of Thurston County, left a note in September saying he had run out of pills and couldn’t stand the pain caused by a commercial fishing accident 26 years earlier.
The SPC fallout appears to have fueled some doctors’ fears.
Robert Moran Jr., of Tumwater, said his doctor told him in July he was going to cut his dosage. “He just started saying, ‘We have to cut you back; I’m not going to lose my license,’ ” according to Moran, 60, who said his right arm, nerve-damaged in a motorcycle accident, aches more and is almost useless to him with a lower dose of painkillers.
He sleeps in a recliner because of the pain, he said, rarely showers and eats off disposable plates because he hasn’t been able to install the dishwasher he bought. “Imagine having a pain at the level of a bad toothache and it never goes away,” he said.
Moran’s doctor did not respond to requests for comment.
Under current state rules, Hegge and other patients sign a pain contract with their providers, agreeing to submit to random drug tests, pill-counting and other checks.
Hegge, now on disability, was a chemical-dependency counselor for 10 years. He weighs the costs and benefits of his morphine use, he said, including unpleasant side effects. He believes he’s a smart consumer.
But state officials suspended the license of his longtime doctor, Philip Roger Matthews, in December, saying he prescribed high doses with not enough care, endangering patients.
In his response, Matthews disputed that and called the suspension of his license “excessive and unwarranted.” He said he has not injured any patients and does not pose a risk to them.
His license remains suspended pending further action by the state. He did not respond to requests for an interview.
No upper limit
While legacy patients may deserve some flexibility, experts say the medical evidence is clear: there are more risks than benefits associated with daily doses above 120 milligrams of morphine, or the equivalent in other opioids.
Generally, doctors want to taper doses for patients like Hegge, who takes about 360 milligrams of morphine a day. But they should do it with care.
“Even a tiny reduction will be experienced by the patient’s central nervous system as increasing pain,” Tauben said. “It is a slow journey that involves an empathic response to these individuals caught in this shifting pendulum.”
Doctors will not lose their licenses just for prescribing above the state-recommended daily threshold of 120 milligrams of morphine, according to Tauben and others.
Doctors may prescribe above that limit, the rules state. If they do, they should consult with a pain specialist.
They don’t even need to do that if the patient meets criteria such as being on a tapering schedule, or the patient’s function is improved without apparent risk, or the prescribing physician has a certain amount of training in pain management.
But the rules “got distorted” by some, Tauben said.
The state Department of Health put out a reminder late last year — a month after Peck’s suicide.
“In fact, there is no upper limit for opioids in the Washington state pain rules,” wrote Melanie de Leon, executive director of the Medical Quality Assurance Commission, which disciplines doctors.
“While the opioid epidemic is a public health crisis, we must not forget the crisis that is the patient without relief from debilitating pain or functional improvement,” de Leon said.
Guidelines issued last year by the Centers for Disease Control and Prevention called for “very slow opioid tapers as well as pauses in the taper to allow gradual accommodation to lower opioid dosages.”
Schlicher, the ER doctor, said he thinks providers understand the rules. But they also have to safeguard against patients who don’t want to do what the doctor deems necessary and “bounce between providers,” he said, rather than building a relationship with a doctor that might evolve to allow higher dosing.
“I have sympathy for both sides, patients and doctors,” Schaaf said.
Micah Matthews, deputy director for the medical quality commission, said state officials tried to educate doctors about the new rules. They even went on a yearlong road show. “We gave presentations to some 5,000 practitioners around the state,” Matthews said.
If a patient thinks the state is interfering in his treatment, Matthews said “that’s an educational opportunity we’re willing to take on with the physician.”
He said patients should give his email to their doctors so they can ask Matthews or state medical consultants about appropriate practices under the rules.
Tauben advises patients to give de Leon’s “technical assistance” memo to their doctors or clinic administrators. Patients should also encourage their doctors to visit a weekly teleconference the UW hosts to discuss complex chronic pain cases, he said.
Above all, Schaaf said, patients shouldn’t give up their “search for finding a doctor who will listen and be honest with you about your condition but is willing to compromise with you toward a goal of least medication with best functional status.”