Three weeks after her last appointment, Sonja Mae Jonsson got a call from her doctor’s office in Waldport, telling her she needed to come in. Her urine drug screen had tested positive for a drug she hadn’t been prescribed. The doctor would no longer prescribe her any pain medication.
Linda Jonsson, a registered nurse, had taken over her daughter’s care after a traumatic brain injury when she was 32, and carefully monitored her daughter’s medications. She pleaded with the clinic they had made a mistake. Without the pain medications, they would be condemning her daughter to a life of pain. But doctors had seen too many patients become addicted to painkillers and wind up overdosing. They were cutting her off.
A doctor in Lincoln City agreed to renew her medications until they could find a new pain specialist. For the next year, the Jonssons scoured the Oregon Coast for a pain clinic that would take her. They hadn’t found one a year later when her doctor left the area. Sonja felt she was out of options.
She swallowed an entire bottle of pills.
The nation’s struggle to corral the runaway opioid overdose epidemic with new restrictions on pain medications is backing pain patients into a corner. Patients are being dropped by their doctors, forced to cut their doses drastically and endure dangerous withdrawals, or abandoned to cope with a medically created opioid dependence on their own. Patients who have always taken their medications as prescribed say they are treated like drug addicts and are increasingly driven to despair.
Lost among the thousands of overdoses the health care system is trying to prevent is a small, but worrisome shadow effect of suicides among chronic pain patients who feel their suffering is the unintended consequence of the response.
“We all have a sense of desperation as the immense number of opioid deaths pile up, but the response is increasingly misdirected,” said Dr. Stefan Kertesz, an addiction medicine specialist at the University of Alabama at Birmingham School of Medicine. “A significant number of chronic pain patients are killing themselves, and that should be a concern to society at large when people die as a result of something done to care for them.”
Sonja survived her suicide attempt, and her mother bought a metal lockbox to safeguard her pills. Sonja had been diagnosed with a traumatic brain injury in 2006 while living in Alaska. She told her mother a water tubing accident had affected her balance, and that she fell in her bathroom, hitting her head against a cast iron tub. She told her best friend that her husband had pushed her.
Divorced, broke and in constant pain, she moved to Depoe Bay in 2010 to live with her parents, Linda and Sven. Doctors at a pain clinic in Corvallis had developed a plan that included managing her pain with Percocet and oxycodone. The clinic in Waldport managed that plan, including monthly urine tests to check that she was actually taking the pills as prescribed.
The injury had changed her personality, and the normally sweet, outgoing woman was developing an increasingly difficult demeanor, prone to violent outbursts. She had become sensitive to loud noises and bright lights. There was little she could do but lie in bed in their mobile home just a stone’s throw from the ocean, tormented by noise of the neighbor’s radio. The pain, she told her mother, felt like an ax in the back of head.
How we got here
Opioid prescribing rose dramatically starting in the 1990s as drug companies exploited — some argue they created — a concern that doctors weren’t adequately treating pain. Sales reps told physicians that patients in legitimate pain wouldn’t become addicted, and regulators began tracking how well physicians treated pain. Every Oregon physician was required to undergo hours of training on pain management that emphasized liberal use of prescription opioids drugs like oxycodone or morphine.
Doctors and dentists were sending patients home with scores of pain pills. Many of those patients developed a physiological dependence on opioids and an increasing tolerance that required higher and higher doses to control their pain and stave off withdrawal. Pills were stolen or diverted to feed an increasing population with outright addiction.
Whether addictions started with a prescription or recreational use, the rate of addiction and overdose quickly spiraled out of control.
When pills became more expensive or harder to get, many turned to illicit opioids like heroin, and a black tar heroin distribution network expanded to meet demand. Dealers tried to extend their supply of heroin by adding a cheaper synthetic opiate called fentanyl that is 100 times more potent. Too much fentanyl in a dose of heroin creates a deadly combination that is now driving continued growth in overdose rates. By 2015, 91 Americans were dying each day from an opioid overdose. Health officials decided that to end the cycle, they had to stop the flood of pills.
While law enforcement shut down pill mills and medical boards targeted rogue doctors, the health system focused on reining in overprescribing.
In 2016, the Centers for Disease Control and Prevention, along with other health groups, issued prescribing guidelines to reduce the supply of pain pills. The guidelines emphasize a more judicious approach to prescribing, a careful weighing of the benefits and risks before starting a patient on painkillers or increasing the dose. Doctors should avoid prescribing patients more than 90 milligrams of morphine equivalent per day, the agency said, or carefully justify their decision to do so.
To get under that threshold, some doctors cut doses overnight. Some patients were referred to pain specialists. Others were dropped, left with no alternative than to go to the black market.
“It happens every day,” said Dr. Anna Lembke, a psychiatrist with Stanford University Medical Center, and author of a book on the prescription drug epidemic, titled “Drug Dealer, MD.” “Doctors suddenly realize that they have a patient who’s on a high dose or using in a risky way and just decide they’re going to bail. They tell patients, ‘I don’t treat pain anymore’ or ‘You’re too high risk.’”
Chronic pain patients who always took their medications as prescribed, who never refilled doses early or doctor-shopped to get extra pills, got caught up in the stampede.
“There are people who are totally innocent in this situation. They went to the doctor, they took their pills as prescribed, and they got cut off,” said Dr. Benjamin Schwartz, founder of Recovery Works Northwest, an addiction treatment practice in Portland.
Even patients on modest doses of opioids, well within the prescribing guidelines, may find themselves forced off their medications.
“Anyone active in pain is getting contacted with a lot of very heart-wrenching stories,” said Dr. Daniel Carr, a pain specialist at Tufts University in Boston. “You’re trying to curb abuse, but you’re actually making the medication less available for appropriate users.”
For more than 15 years, Debra Bonanno has struggled with an intense pain in the center of her chest. Despite scores of tests and surgeries, doctors have never been able to find the cause. They prescribed her massive doses of extended-release morphine — up to 900 mg per day — to keep her pain in check. In 2015, Washington state passed a new opioid prescribing law requiring anyone taking more than 120 mg of morphine equivalent dose to see a pain specialist. With no such specialists in her hometown of Spokane, Washington, Bonanno traveled to Seattle. When doctors there heard her daily morphine dose, they looked at each other in disbelief. Even if they started her taper that day, one of them would have to write the prescription to get her started.
“Nobody wanted to write it for anything that high,” she said.
She agreed to a taper plan and after six months weaned herself off the morphine. Now she must stretch a supply of 30 pills of Dilaudid — a fast-acting opioid painkiller — the entire month.
“Sometimes I’m afraid to take some because I’m worried about the next attack,” she said. With 10 days left before her next refill, she had just two pills remaining. “There are some days that I literally crawl to the other room.”
Only one of 12 recommendations in the CDC guidelines addresses what to do with patients like Bonanno who are already on high doses. Recommendation No. 7 calls for physicians to weigh the benefits and harms of opioid prescriptions for patients every three months. If the benefits do not outweigh the harms, doctors should look at other therapies, and work with the patient to taper to lower doses or to stop taking it entirely.
Kertesz said many have misread that to mean that they should reduce doses in patients who are currently stable and that reducing dosages actually helps that person.
“The CDC guidelines absolutely did not recommend that practice, and there’s not a shred of evidence to show that it is safe or effective,” he said. “And we have a mountain of anecdotal evidence to show that it causes the death of the patient in a certain number of instances.”
At the National Rx Drug Abuse & Heroin Summit in Atlanta in April, Dr. Deborah Dowell, a CDC senior medical adviser and coauthor of the guidelines, said that approach was not the authors’ intent.
“We do hear stories about people being involuntarily taken off opioids,” she said. “We specifically advise against that in the guidelines.”
Patients should be tapered off medications slowly, she said, at a rate of 10 percent per week, even slower for those who have been on their medications long term. For many medications, a large sudden drop in dose can have dangerous effects. What makes opioids so addictive also creates some of the worst symptoms of withdrawal.
When she moved from Canada to Oregon several years ago, Michele Mullenberg had been taking extended-release morphine sulfate for nine years to stem the pain of psoriatic arthritis. Doctors in La Pine were hesitant to renew her prescriptions, but after reviewing her medical records and calling the clinic in Canada, they reluctantly agreed. But when a blood test at one appointment showed Mullenberg had been drinking, her doctor gave her an ultimatum: quit drinking or stop the morphine. Frustrated with being treated “like a drug addict,” she lashed out, “Fine, take me off.”
For the next six weeks she suffered through the consequences of her rash decision to quit cold turkey. Constant nausea, terrible diarrhea — she felt horribly ill.
“It was living hell,” the 68-year-old widow said. “I will never go back on morphine again unless it was going to be for my lifetime. I’m not going to go through that again.”
But the loss of her pain medications has had a profound effect on her life. She used to go on long walks, but now moving has become painful. She can’t vacuum or clean her house.
“It feels like everything is a whole lot more effort,” she said. “It’s almost embarrassing.”
Without her pain meds, her world has become much smaller.
Melissa Weimer, an assistant professor of medicine at Oregon Health & Science University, said prescribing guidelines were never meant as an across-the-board mandate.
“If a provider just applies them without doing any due diligence or evaluation of the patient, well, likely, you’re going to have a poor outcome,” she said.
Weimer recently looked at what happened when a single clinic tried to taper its high-dose opioid patients off their pain medications. Of 116 patients, less than half were able to successfully drop their doses below the recommended level within a year.
“In a strange way, we train people to basically increase doses without thought, and we never trained anybody to decrease doses of opioids,” Weimer said. “There was never an exit strategy.”
Nonetheless, the CDC guidelines and its dose threshold are quickly becoming a de facto mandate, a bright line to distinguish between appropriate and inappropriate opioid use, and a yardstick by which to evaluate doctors.
“The guidelines very strongly emphasize dose and dose alone as the way of understanding the risk of overdose and risk of death,” Kertesz said. “And that really isn’t a scientific understanding of the research that’s been done on overdose risk.”
He gives the example of a patient with chronic obstructive lung disease stemming from a lifetime of smoking on 270 milligrams of morphine equivalent dose. That patient may be at lower risk for overdose than someone on just 60 milligrams but with bipolar disorder and anxiety.
While studies suggest that those on higher doses of prescription opioids are at higher risk for overdose, it’s not clear that opioids alone are responsible. Most overdose deaths involve multiple substances in people with complex health and psychological and social problems. It’s often a combination of factors that leads to their death.
Some insurance companies won’t cover opioids above the CDC threshold, and health systems are setting hard ceilings with forced tapers to get patients under their limits.
The National Center for Quality Analysis has proposed evaluating health plans based on how many of their patients are on high opioid doses. Many health systems, including the Veterans Administration, are establishing dashboards where doctors can see in real time their opioid prescribing data.
“When a doctor cuts the dose or discharges the patient, it helps the doctor look good in the eyes of their employer, in the eyes of the regulators, even if the patient dies,” Kertesz said. “I cannot think of any other situation in healthcare where having your patient die actually makes you look better.”
At least 11 states have passed legislation based on an opioid threshold. Maine went so far as to ban prescriptions of more than 100 mg of morphine equivalent per day, other than for cancer or end-of-life care, and requires that all patients be tapered below that limit by July 1.
Patients can be cut off from their medications as law enforcement shuts down clinics with risky prescribing practices. When the Drug Enforcement Agency shut down a pain clinic in Baltimore in May, it closed the doors on thousands of patients. With no advance warning, the city’s health department could do little more than warn hospitals in the area to be prepared for a surge in overdoses.
Many like to think of pain patients and individuals with addictions as two distinct groups, but studies suggest there may be more crossover than realized. One study that interviewed 150 young adults in New York and Los Angeles who took illegally obtained pain relievers found that more than half had severe pain, and a quarter had been denied prescription opioids to treat it.
The data show that young adults are more likely to overdose on heroin, while older adults are more likely to die from prescription opioids. In part that’s because physicians are more reluctant to prescribe opioids to young adults than to older patients. But increasingly, even older patients are having trouble getting pain killers from their doctors.
“We don’t know whether they would go to purchase drugs on the streets,” Kertesz said. “But we are seeing those people kill themselves.”
Struggling to care for her 42-year old daughter alone 24 hours a day, Linda drove Sonja to Bend last summer, hoping to find a foster care home. In August, as Linda was doing laundry in a Bend motel, Sonja asked her mother for one last favor.
“I’ve got to leave this world, and I don’t want to do this alone,” she said.
“Sonja, you can’t ask me to do this,” Linda said.
“Mommy, I don’t want to die,” she told her, “but I have to.”
Unwilling to discuss the notion any longer, Linda said she turned back to the laundry as Sonja slipped quietly from the room.
The role of prescribing limits and involuntary tapers in patient suicides may be hard to tease out. Chronic pain patients have higher rates of suicide regardless, and studies have shown the risk of suicide increases when patients are prescribed opioids. And some opioid deaths considered accidental overdoses may in fact be suicides. A 2015 Australian study of chronic pain patients found only one factor was significantly correlated with suicide ideation: how much the pain interfered with their ability to live their lives.
Lana Kirby, a retired paralegal and chronic pain patient from Ellenton, Florida, has collected more than 2,300 survey responses from pain patients about their experiences under the new CDC guidelines. While the survey wasn’t a random sampling, some 68 percent said they’d had their doses lowered, and 56 percent had been discharged from a physician’s practice. More than half said they have considered suicide.
“They’re confined to their home and in some cases, they’re confined to their beds. Many of these people have plans and those plans include rational suicide,” said Terri Lewis, a patient advocate and rehabilitation specialist at Southern Illinois University. “For some of these folks, there is nothing else that provides hope. It’s the best of all bad solutions.”
Pain specialists say most chronic pain patients will do better by reducing their opioids and relying more on other pain management modalities, such as physical therapy, yoga, acupuncture or mindfulness training. But that can be a long, slow process, and in many rural areas, those alternative approaches are just not available.
“We screwed up as a medical community massively around prescribing opioids for persistent pain, and I think we now have an equally misguided notion that we can just take away those opioids and insert appropriate evidence-based therapy,” said Dr. Rachel Solotaroff, medical director for Central City Concern in Portland. “It’s not a Lego set. You can’t just take out one piece and insert another.”
Dr. Jessica LeBlanc, a primary care physician with Mosaic Medical in Bend, said it can often take a year of talking before a patient is ready to begin a taper, and then another year or two before they can successfully implement the alternative strategies and reduce their dosages.
“Patients have already been discriminated against because they’re on opiates, so the first things we talk about probably should not be about weaning their medications,” she says. “It should be more about what else is working for them. What more can we do?”
Dr. Andrew Kolodny, co-director of Physicians for Responsible Opioid Prescribing, said much of the backlash about prescribing guidelines and legislation has come from patients scared they will be forced off their medications.
“These patient groups are being very effectively manipulated by what I would refer to as the opioid lobby,” he said. “The opioid lobby is able to manipulate them and tell them that they’re being basically punished because of the drug abusers, and through the efforts of CDC and PROP or state legislatures to stop the drug abusers, that they are being made to pay the price.”
But he argues that many of those patients aren’t getting the benefits from opioids they think they are.
“I see them as victims of our era of aggressive prescribing,” he said. “And we need a compassionate response.”
For the 10 million Americans on long term opioids, doctors should help them reduce their dose, and if possible, come off the drugs altogether, he said. Some may need medications, like methadone or buprenorphine, that act on the same receptors as opioids without providing the same type of high or the same overdose risk.
“We’re just starting to make some efforts on supply control, but we have not done an adequate job at all — not even close — of seeing that people who are opioid addicted can access treatment,” Kolodny said. “They have to see that treatment is easier to access than heroin or pills.”
A health disaster
Critics say that reducing access to opioids without adequately expanding access to treatment is harming patients.
“The reduction of the opioid analgesic supply has been an unmitigated disaster,” said Leo Beletsky, assistant professor of law and health sciences at Northeastern University in Boston.
The focus on reducing supply, he said, does little to help those with existing addictions or to reduce their risk of overdose, and doesn’t address the root causes of addiction. Prescription drug monitoring programs were established to better identify when patients were drug-seeking or doctor-shopping. But doctors often reacted by firing those patients. A recent survey of nearly 800 primary care practices found that 78 percent had discharged a patient for violating their chronic pain or controlled substance policies.
“That’s a huge public health disaster,” Beletsky said. “You want to have those patients in your practice, you want to focus on them, you want wrap them in care, you want to engage them on an even more intense level.”
When those patients are cut off from health care services, their risk increases tenfold, he said. “That person is probably not going to show up in the health care system again until they overdose.”
Linda collected the laundry and returned to her motel room at 8 o’clock that evening. She saw the metal lockbox lying open on the table, the padlock broken. She didn’t need to read the note her daughter had written. She knew what Sonja had done and why she had done it. After intervening in two previous suicides, Linda couldn’t interfere anymore.
“I just wasn’t going to fight it anymore. She tried so hard, but she couldn’t handle the pain,” Linda said. “I held her for a while and we said our goodbyes.”
Sonja looked up at her mother one last time, and said, “I’m sleepy. I’m really sleepy.”
Linda lay down on the bed next to her and watched her daughter sleep. At 8:30 the next morning, she heard Sonja take one last gasp. She checked her pulse.
Sonja had asked her mom not to call anyone until she could no longer be revived. Linda waited 15 minutes and then called the police.
“My daughter has passed,” she told them.
The day before, Sonja had called her friend Alexander Myhill. They had become close years earlier in Alaska and he remained a lifeline to the outside world. Sonja talked about the burden she had become on her mother. She felt alone. She felt hopeless. She felt defeated.
“‘I just can’t do this anymore, I just cannot live with this level of pain any longer,’” he recalled her saying. “It was not her wish to die. She wanted to live, but there’s no way a person can live with that kind of pain for that long, and not just simply give up.”
Myhill had previously stopped Sonja from killing herself, calling the police in Depoe Bay when he heard her plans. This time he didn’t try to talk her out of it. He asked about her fondest memories and she recounted stories of going camping in Alaska.
Sonja had once been a vibrant, independent young woman. She would camp and fish all alone at a remote lake in the Alaskan backcountry in prime grizzly bear territory. Now she had become entirely dependent on others.
“She realized the only way she could go back there was in her mind,” Myhill said. “She enjoyed closing her eyes and thinking about those places. They brought her peace.”
Nine months later, Linda said she still sees her daughter every night when she closes her eyes. It brings her no peace.
“(The clinic) told me she’ll be one of those drug overdose statistics,” Linda said. “It was just the opposite. People are killing themselves because they can’t handle the pain and they’re not being helped.”