Opioid crisis: Pain patients pushed to the brink

Opioid crisis: Pain patients pushed to the brink; Overdose prevention efforts have had unintended — and dire — consequences By Markian Hawryluk, The Bulletin, @markianhawryluk – Jun 5, 2017

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

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.

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.

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.

Anyone active in pain is getting contacted with a lot of very heart wrenching stories. You’re trying to curb abuse, but you’re actually making the medication less available for appropriate users.
— Dr. Daniel Carr, pain specialist at Tufts University, Boston

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.

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.”

“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.

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.

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.

“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.”

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.

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.

Considering suicide

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

“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.

“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

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.

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.

“‘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.”

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.”

We’re interested in hearing about how the opioid epidemic and the public health response to it are affecting patients and doctors, family members and addicts.

Fill out our online survey at bendbulletin.com/opioidsurvey . There are separate sections for patients, providers, family members and those with addictions. Please know these responses will be held confidential and nothing will be shared without express permission.