She felt she had broken her patient.
He was a former laborer and fisherman, hobbled by chronic back pain after several work accidents. He came to her when his doctor moved out of town.
“This is a troubling situation,” Dr. Lucinda Grande, a Lacey primary-care doctor, wrote in her notes. “He is on an extremely high dose of opioids.” His daily dosage was more than six times the amount warranting caution, according to Centers for Disease Control and Prevention (CDC) guidelines.
It was 2015. Roughly 700 Washington residents a year were dying from opioid overdoses. Everyone – from law enforcement to regulatory bodies to public officials — was telling doctors to prescribe less.
Grande gradually cut Richard’s dosage of OxyContin by a third. (The Seattle Times is using only the first name of some patients, and not identifying others, to protect their privacy or at their request.) It did not go well. Over the next two years, the single dad, who even on medication describes his back pain as being so intense that he can hardly breathe, went from low-functioning to bedridden. He was unable to care for his two children, depressed and desperate to go back to his earlier level of medication.
Ultimately, Grande agreed to take him back up, with the blessing of his prior doctor, a pain specialist. But she said: “It was really scary.”
She feared he was in danger of overdosing. She might face questions from authorities about a high-dose prescription, maybe even risk her license.
This is what it’s like to treat patients on opioids at a time when the drugs are seen as a scourge of society. Health-care providers who do so — and many refuse — face stigma, a tangle of rules and guidelines, medical and ethical challenges and potential scrutiny that has not only shut down clinics locally and nationally but has led to arrests.
“Everyone’s confused and scared,” said Dr. Miroslav Backonja of the University of Washington’s Center for Pain Relief.
Stephanie McManus, spokeswoman for the Washington Medical Commission, which handles doctor licensing, disciplinary investigations and policy education, said that may be true only for some doctors. “Most Washington MDs are well-trained, informed and know there is nothing to fear” from rules that give doctors the “final say in what is prescribed to their patients,” she said.
In late May, however, a commission news release acknowledged “confusion and concern.”
Time spent with providers and their patients — in settings ranging from Grande’s suburban practice, to an even smaller office operated by a Lakewood nurse practitioner, to a Harborview Medical Center primary-care clinic serving thousands — illustrates the difficult issues at play.
Only a couple of decades ago, a consensus arose that pain was being undertreated and deserved to become a “fifth vital sign,” along with a patient’s blood pressure, pulse rate and so on. An estimated 50 million adult Americans suffer from chronic pain.
Even in the medical field, most agree: Providers leaned excessively on opioids, pushed by pharmaceutical marketing, particularly long-acting OxyContin, invented around the same time. “Pill mills,” cycling patients through with minimal evaluation, cropped up. Addiction and overdoses spiraled.
That couldn’t go on. But now, asks the UW’s Backonja: “What do we do?” There’s little scientific evidence to show the way.
Health officials have stepped in, attempting to limit opioid use while recognizing its role in alleviating pain. “Generally, I think we’re moving to a better place,” said Dr. Tom Schaaf, president of the Washington State Medical Association. But misunderstandings abound, on the part of insurance companies, pharmacies and public officials as well as providers.
The medical commission’s news release said some believe the state’s opioid-prescribing rules – newly revised to apply across medical disciplines, though cancer, hospice and inpatient care are exempt – set pill limits and mandate that doctors cut off patients from prescriptions. They do not.
The rules do require, as before, that providers consult a pain specialist when prescribing an opioid dosage above a certain level: the equivalent of 120 milligrams of morphine.
But, confusing providers all the more, that differs from the cautionary threshold used by the CDC: the equivalent of 90 morphine milligrams.
The federal guidelines are not binding, the commission’s release pointed out, and what’s more, even those have been misinterpreted — as the CDC itself recently said. Its threshold was not meant as a hard limit, nor justification for abrupt tapering among patients long accustomed to higher dosages — so-called “legacy patients.”
“These practices can result in severe withdrawal symptoms including pain and psychological distress, and some patients might seek other sources of opioids,” the agency warned.
In Washington, the rates of patients getting opioid prescriptions and subsequently overdosing have dropped sharply — about 40% since 2009 in the case of deaths due to opioids received from health-care providers. But heroin deaths have spiked — more than fourfold since 2009, taking the lives of 306 residents in 2017. Street fentanyl has also proved increasingly fatal. As a result, there’s been little progress in driving down the rate of opioid overdoses overall, but it hasn’t kept climbing here as it has nationally.
Also worrying, said state Health Officer Dr. Kathy Lofy, are reports of providers declining to prescribe opioids at all. “We want people to get adequate pain care,” she said.
The revised state rules condemn nontreatment and undertreatment, as well as overtreatment. “A practitioner who refuses to treat the condition (chronic pain) properly,” the medical commission explained in a statement, “including the appropriate utilization of opioids when opioids are clearly indicated, would be practicing below the standard of care.”
Finding the right balance can be hard. A December Human Rights Watch report, derived from research in Washington and Tennessee, found dozens of patients suffering from inadequate medication and providers it deemed “not allowed to be compassionate.”
A federal task force has suggested modifying the CDC guidelines to put more weight on provider discretion, but there’s pushback. In April, state Attorney General Bob Ferguson and 38 counterparts nationwide sent a letter to the U.S. Department of Health and Human Services saying the revisions would be a “rollback.” Instead, the AGs declared, the task force should “clearly state that there is no completely safe opioid dose, and that higher doses are particularly — and predictably — risky.”
Walking the tightrope
The attitude toward opioids when Grande went to medical school in the late 1990s was simple, she said: “No dose was too high.” But a residency at an Olympia family-medicine practice convinced her otherwise.
As she wrote in a journal article, patients refilled prescriptions early, demanded more and showed uncontrolled anger. They were addicted, a subject she knew something about, as the daughter of a mentally troubled lawyer, now deceased, who she said became homeless and hooked on heroin. It’s part of why she said she’s drawn to difficult patients cast out by other providers.
But opioids, she determined, turned people “into monsters.”
Her views evolved again, though, after joining a six-person Lacey practice in 2011, and inheriting patients from a retiring doctor. Some had been using opioids for years and didn’t seem addicted (addiction, with its insatiability and irrationality, is considered different from dependence).
She developed a multitiered approach. For addicts, she helped start a free walk-in clinic in Olympia in January that distributes the treatment drug buprenorphine. With legacy patients on opioids, she both treads gingerly and tries out alternatives.
One April afternoon, 80-year-old Donna, a retired bartender and great-grandmother of two dozen, tried to make herself comfortable on Grande’s exam table. Sitting the wrong way, she said, caused “stabbing pain,” and walking, which she did slowly and unevenly, was hard, too.
She traces her pain problems back to when she was 5 and lit herself on fire playing with matches. But it’s arthritis in her spine that in recent years led to opioid prescriptions.
She felt worse after a January fall in a windstorm. Grande had her try an antidepressant with pain-relieving properties. “It helped a little,” Donna said. What about another steroid injection? Grande suggested. She wrote a referral.
Although Donna put her pain at a still-high 8 out of 10, Grande was encouraged. Dressed in a brightly flowered pantsuit and sparkly sandals, the 80-year-old “looked pretty perky today” and said she was able to go grocery shopping with the help of a walker.
Staying the course with a moderate oxycodone dose, her eminently pleasant patient never asking for more, makes sense to Grande.
Others make her think on her feet.
A lawyer with a big personality came in one day for his first appointment. He managed a flourishing career despite taking a large dosage of opioids for back pain that at one time, he said, made him feel like his life was nothing.
“I don’t want to rock the boat,” Grande said. Then the lawyer told her he didn’t want to take urine tests or sign the contract she gives all patients on opioids, which includes a pledge to not take illegal drugs.
The lawyer also used marijuana for pain and pointed out weed is still illegal according to the feds, despite state legalization.
Grande didn’t push the point, but after his appointment she looked over the state rules and saw firm mandates for urine tests and written agreements spelling out conditions for medication. She would have to talk to him about it.
The Prescription Monitoring Program, started in 2011 to let providers see which controlled substances patients are receiving from all sources, recently began tracking how providers’ prescribing habits compare with their peers. Grande showed a report from 2017 noting she had prescribed opioids — often buprenorphine, which can be used for pain as well as addiction treatment with much less risk of overdose – for an average of 103 people a month, compared to an average of 20 per month among family-medicine doctors.
Such reports — including a more recent version looking at specific kinds of prescribing and sent to providers in the top 95th percentile — do not trigger investigations, assured Washington Medical Commission Chair Dr. Alden Roberts in a recent newsletter. Rather they are meant to get providers to assess their own practices, according to an explanation sent with the newest report.
Uncertainty hangs over many of the state’s metrics. “I don’t think we exactly know what these targets should really be,” said Lofy, the state health officer. She was going over an online dashboard of figures related to opioid prescriptions, showing for instance that 16.7 per 1,000 state residents received chronic opioid prescriptions in the last quarter of 2018 — a 29% drop from 2015.
Grande has questions in her own mind when it comes to Richard, whom she called “the most flaming, blatant example” of the challenges she faces.
On the one hand, she said, “You can see he’s just a regular guy.” Richard had just driven in from his home 30 miles away, wearing shorts and a plaid shirt, calm to the point of somnolence, explained to some extent by a sleepless night dealing with the death of a newly adopted dog.
Richard’s neck was also hurting, and she injected him with a local anesthetic, a technique she said was rarely used by doctors. “Oh wow,” he said, feeling immediate relief.
On the other hand, the doctor related, Richard presented her with a number of “weird circumstances” and displays of poor judgment.
There was the story about leaving his pills in a broken-down car, necessitating a new prescription. She watched him closely after that.
Most worrisome was the time he cut OxyContin pills in half. Grande said he had a good reason: He was trying to comply with her recommendation for a lower dose but couldn’t get the right pills from his pharmacy.
The move could have been fatal. Cutting the timed-release pills releases a rush of medication.
Though nothing bad happened, she recognized “most doctors would say, forget it.” Instead, she said to herself, “I’m going to work with him and figure out how to keep him going.”
How many red flags are too many? That’s a really hard question, said Dr. Jared Klein, a UW School of Medicine assistant professor who works in Harborview’s Adult Medicine Clinic, where he estimates several hundred of its primary-care patients take opioids. “Each provider has a different level of comfort for how long they’re willing to hang in there.”
Sometimes, said the 37-year-old physician, “you’re kind of walking this tightrope.” He said he does it, despite wariness of opioids, because he worries about patients being left behind.
One Monday afternoon, Klein saw Anthony, who had been having so much trouble sleeping lately because of burning pain shooting down his arms that he had started drinking a couple fingers of whiskey before bed.
“Oh wow, OK,” the doctor said he was thinking. Though Anthony was on only a low dose of the opioid Tramadol, Klein was already concerned about mixing that with sedatives prescribed for mental health, a potentially dangerous combination. Here, now, was another sedative: alcohol.
Klein betrayed no alarm outwardly. But he suggested something with sobering implications: naloxone, a medication that reverses an opioid overdose. “If you’re not opposed, I’m going to write a prescription,” Klein said.
As he has been doing more often, the doctor also recommended trying cognitive behavioral therapy, in the hopes it could retrain the way Anthony’s brain reads pain signals.
“I’ll try anything,” said Anthony, a middle-aged former construction worker. He longed to get off opioids, but feared the resulting pain. “I don’t know where the middle ground is, to be honest with you.”
“If they arrest me”
Pain is subjective. That’s one of the main problems in assessing the need for medication, said Dr. Dan Nelson, part of a Kirkland orthopedic practice and the host of a KTTH radio show that he says makes him “the Frasier of chronic pain.”
With diabetes, you can check someone’s blood sugar. For other conditions, there are X-rays and blood tests.
There is no test for pain.
“We have to go primarily by what you tell us,” Nelson said. “That’s a little scary for doctors … There’s always that fear of being scammed.”
He’s largely stopped prescribing opioids — in part, he said, because his focus on procedures, like injections and implanted pumps, is taking up all his time; and in part because providers today have to wonder with every prescription whether they’re leaving themselves open to a lawsuit or a visit from the Drug Enforcement Administration (DEA).
The specter of the DEA certainly looms over the Lakewood offices of Aileen Wedvik.
When the agency in 2017 raided the office of prominent California pain doctor Forest Tennant, Wedvik, an advanced registered nurse practitioner, was spooked. It was not the first such raid, or the one closest to home. In 2016, the DEA paid a visit to one of eight clinics run by Dr. Frank Li of Seattle Pain Centers, and the state suspended Li’s license, charging him with failing to properly monitor his patients’ use of opioid prescriptions.
Wedvik knew Tennant as a respected specialist. If he could get in trouble, anyone could, she said. And Wedvik, though never disciplined, had already faced complaints to the state questioning her “medication management,” including one from a Premera Blue Cross official who noted a patient received the equivalent of roughly 1,200 milligrams of morphine.
In early 2018, Wedvik sent a letter to patients telling them she was switching from a pain specialty to primary care. She continued prescribing opioids, but slashed dosages. “We got some of them down so far, they couldn’t walk anymore,” she said.
One patient, a veteran with ongoing pain and neuropathy after multiple back surgeries, recalled: “Every month, I’d dread the next appointment. How much lower is it going to be?
“She has no idea how close I came.” To what, he didn’t say, and he bristled when asked if he thought about suicide, something others have reportedly turned to after being cut off from medications, as noted in an April statement by the Food & Drug Administration. He simply had no strength left, he said.
Wedvik noticed he had gotten weak, pale and sweaty. Many patients, she said, did fine once they got over the withdrawal that came with less medication, and the tolerance that necessitated more drugs for effect. But some, Wedvik finally determined, could not manage.
With those patients, she reversed course. “If they arrest me, they arrest me,” she resolved.
Still, as patient after patient testified to during appointments on a recent Friday, one 48-year-old woman with fingers so gnarled from arthritis they bent at improbable angles, pain is ever present.
The veteran, 53, speaking through grimaces, described his as an odd mixture of burning and freezing: “Like if I wrapped sparklers from the Fourth of July and tied them to my legs and lit them all. And then flushed them with ice water.”
When he told Wedvik about an expected hassle getting one medication from his pharmacist — the right dose would no longer be available — the nurse practitioner suggested something she said she was not doing with everyone.
Before opening a solo practice, she had worked in a practice treating residents of senior communities. Through that work, she had met a “long-term care pharmacist” who also worked in those communities, and he had spoken with her recently to offer his services to her patients.
“He knows we give higher doses. He says that’s not a problem,” Wedvik related. The DEA was not interested in pharmacies like his, he told her.
Wedvik, 62, who also once worked at a men’s prison in Shelton, has a tough side. Her contract with patients on opioids stipulates they agree to have their blood drawn whenever she requests; understand rudeness or opioid overuse will result in getting kicked out of the practice; and she will report illegal behavior to authorities.
Before seeing the nurse practitioner, an assistant counts the number of pills left in patients’ bottles.
“It’s like being treated like a criminal,” said one patient, a woman with long gray hair and a spine she said was a mess.
She didn’t hold it against Wedvik but indicated that’s the way things are these days. In spite of all that, many patients say Wedvik is the first provider they’ve had who really listens to them.
On this day, Wedvik heard something that surprised her. A 60-year-old woman came in who, years before, had suffered an aneurysm that initially left her unable to walk or talk, ending her career as a prosecutor. She recovered those functions, but has disabling headaches.
Opioids help, she said. But she takes a lot less than she used to, due to Wedvik’s cutback.
The former prosecutor recounted how she went from lifting weights at the YMCA several times a week — “I was actually a person, do you know what I mean?” — to staying in bed much of the time, crying.
“I would leave my ambulance,” said her husband, a medic who came to the appointment with her, “and come home and comfort her.”
Wedvik, in the process of writing new prescriptions, stopped short. “I’m so sorry,” she said. “I didn’t realize.”
She X’d out the scrips. The former prosecutor’s level of medication would be going up.