On July 26, Todd Graham, 56, a well-respected rehabilitation specialist in Mishawaka, Indiana, lost his life. Earlier that day, a woman complaining of chronic pain had come to Graham’s office in hope of receiving an opioid such as Percocet, Vicodin, or long-acting OxyContin. He reportedly told her that opioids were not an appropriate first-line treatment for long-term pain—a view now shared by professionals—and she, reportedly, accepted his opinion. Her husband, however, became irate. Later, he tracked down the doctor and shot him twice in the head.
This horrific story has been showcased to confirm that physicians who specialize in chronic pain confront real threats from patients or their loved ones, particularly regarding opioid prescriptions. But Graham’s death also draws attention to another fraught development: In the face of an ever-worsening opioid crisis, physicians concerned about fueling the epidemic are increasingly heeding warnings and feeling pressured to constrain prescribing in the name of public health. As they do so, abruptly ending treatment regimens on which many chronic pain patients have come to rely, they end up leaving some patients in agonizing pain or worse.
Last month, one of us was contacted by a 66-year old orthopedic surgeon in Northern California, desperate to find a doctor for herself. Since her early 30s, Dr. R suffered from an excruciating condition called Interstitial Cystitis (IC). She described it as a “feeling like I had a lit match in my bladder and urethra.” Her doctor placed her on methadone and she continued in her medical practice on a relatively low dose, for 34 years. As Dr. R told one of us, “Methadone has saved my life. Not to sound irrational, but I don't think I would have survived without it.” Then a crisis: “Unfortunately for me, the feds are clamping down on docs prescribing opiates. My doctor decided that she did not want to treat me anymore, didn't give me a last prescription, and didn’t wait until I found another pain doctor who would help me.” For the past 30 years, Dr. R has been an advocate for better treatment of IC and reports “many suicides in the IC patient population due to the severity of the pain.”
Thankfully, Dr. R found someone to treat her. Doug Hale, 53, of Vermont was less fortunate. On Oct. 11, 2016, he died by suicide.
"My husband Doug took his own life after being cut off abruptly from his long-term therapy for intractable chronic pain,” his wife, Tammi, wrote in a survey collected by a rehabilitation scholar. His pain was caused by interstitial cystitis, severe migraines, and a back condition. A doctor had prescribed methadone and oxycodone since 2001, according to Tammi Hale, but then “said he would not risk his [medical] license.” Her husband “lasted six weeks, all the while desperately searching for help” but he made a conscious choice not to pursue alcohol or illegal drugs. He said he wanted to live to see his grandchildren and to grow old with me, his wife wrote, “but the pain drove him to suicide as he could not bear a life of intractable pain.”
So, he waited until his wife was out running errands, went to the far end of their backyard, and shot himself. Doug Hale left a suicide note stating that no one but his wife had helped him and that “the doctors were all puppets who basically just wanted to cover their own backs well.”
In 2016, a physician wrote a searing personal account of losing his sister, a chronic pain patient, in the Journal of the American Medical Association. William Weeks of Dartmouth Geisel School of Medicine, described Hailey’s death. A “caring, devoted, and motivated woman,” Haley injured her back at 35 when she was thrown from a horse. Her back never got better, and she qualified for federal disability payments. Over 14 years she received opioids and sedatives from a single pain physician, reaching high doses of both. When illness struck her physician, he retired, leaving her with a one-month prescription and a list of doctors.
As Weeks wrote, “My sister made appointments with several of the physicians [but at] every appointment, she was told that the physician would be unwilling to prescribe her current medication regimen. At every appointment, she was told that she would need to dramatically reduce her use of opioids and benzodiazepines. At every appointment, she felt that the medical establishment, which had prescribed these medications for a decade and a half, had abandoned her. Having not found a physician to manage her medications, she tried to wean herself, if only to extend her medication supply.” She accelerated her alcohol use, wound up in an emergency room—and then a jail cell where she died, six weeks after her last prescription.
Finally there is the anguished report from Mark Ibsen, a doctor based in Montana. On Aug. 4, he posted a video of himself with a distraught patient. “This patient is suicidal due to sudden severe cuts in her medications,” reads the tagline. Ibsen, who is currently entwined in a legal battle over his own practice of prescribing opioids to people with chronic pain, explains the urgency:
This is Kirsten. She’s here for a cannabis card. And we’re going to approve her. She has been on chronic pain medication. And the reason I want to show you this is that she can’t move her neck. She is operating stiffly. She lost all her muscles in her neck, when she had hardware placed by a doctor and it got infected, and she has had chronic pain since then. She has been on opiates for 11+ years. She is suddenly weaning, due to her doctor’s insistence. Just see your scar back here. That’s her scar. And this lady is in agony… She is on a third of her morphine and a third of her oxycodone. She is suicidal. And she has been abandoned by the medical profession. … And we just talked about how if she were an animal, we would euthanize her for this kind of suffering... So I am sending out a plea. I don’t know what I am pleading for, except this lady is suicidal, and this is a preventable suicide. If she could get her opiates, she wouldn’t be trying to kill herself. …This is a crime scene… as this lady deteriorates and gets more and more suicidal. Senator Tester can you help us?
The ordeals of Dr. R, Doug Hale, Hailey Weeks, and Kristin are being replicated across the country. Every week, one of us receives notice of suicides and overdoses by patients across the country who are distraught in the wake of having their dosages reduced. Eighteen months ago, Kertesz cared for a patient who had shot himself in the hand in the parking lot of a local hospital after his primary care doctor stopped maintaining even stable patients on opioids. That doctor had bought into a fallacy that’s been circulating medical practices: that the Centers for Disease Control and Prevention said all prescribing should stop.
It is no secret that one contributing factor to the current opioid crisis is the overreliance on and, at least in retrospect, irresponsible use of opioid-based pain medication. Promiscuous prescribing by physicians gained momentum in the early 1990s and continued for much of the next decade. Aggressive marketing by makers of long-acting painkillers, along with unfounded reassurances that they were safe, played a role in the explosion of prescribing—as did the culture of medical practice which rewarded hospitals based on patient satisfaction ratings, hurried visits, and a dearth of ready insurance-covered alternatives.
It should be noted that the chief risk of liberal prescribing—that is, giving a month’s worth of pills when two days were needed; prescribing opioids when extra-strength aspirin and a heating pad would do—was not so much that the patient for whom painkillers would become addicted or overdose. That can happen, particularly when the patient is also depressed, chronically anxious, or has a history of substance abuse, but it is not especially common: “Rates of carefully diagnosed addiction have averaged less than 8 percent [of patients receiving prescriptions] in published studies,” a 2016 review in the New England Journal of Medicine found. Others offer figures of 0.7 percent to 6 percent, a figure cited by the CDC itself. While those figures are high enough to merit a serious doctor-patient conversation, the bigger danger has always been that excess medication was feeding the rivers of pills coursing through many neighborhoods, and that as more painkillers circulated, more opportunities arose for nonpatients to obtain them, abuse them, and die.
As the pill problem has grown, physicians, medical centers, and state health authorities sought to bring prescribing under better control with education, new norms, and prescription registries that pharmacists and doctors could use to detect patients who “doctor shopped” for painkillers and even forged prescriptions. To a welcome degree, this worked: Since 2010, when opioid prescribing peaked, painkiller-related overdose deaths have begun to decline. (Now, heroin and illicit fentanyl are responsible for most opioid-related deaths.) Seventeen states have passed laws or regulations that limit doses or duration for acute pain, and several federal bills are under consideration. Last year, the American Medical Association recommended that pain be removed as a “fifth vital sign” in professional medical standards, another attempt to limit the overprescribing of opioid pain medication.
The pendulum has swung back in the other direction. We are now experiencing the painful backlash to overzealous prescribing of opioid painkillers (that was itself a backlash to the undertreatment of unremitting noncancer pain). The bad news is that many patients treated with high opioid regimens have been caught in the crossfire. Amid regulations, pharmacy payment restrictions, and intimations that doctors are the major culprits in this epidemic, doctors are increasingly sensing pressure to reduce doses, even among patients who are benefiting from the medication and using it responsibly.
On Oct. 1, for example, Colorado’s Medicaid requirement on dose-lowering goes into effect. It requires physicians to reduce the number of painkillers already being prescribed to patients with chronic pain to a one-size-fits-all threshold. Exception clauses do exist but given the notorious inefficiency of state bureaucracy and the priming of physician anxiety lest they not act, more needless suffering may well be an unintended fallout.
What’s more, there is no consensus among physicians on the proper role of opioids in the management of chronic pain. There is a “civil war” between clinicians who treat pain, according to Daniel B. Carr, president of the American Academy of Pain Medicine. “One group believes the primary goal of pain treatment is curtailing opioid prescribing,” he explained. “The other group looks at the disability, the human suffering, and the expense of chronic pain.”
The debate would recede if only there were reliable data to guide physicians. But the wisdom of involuntary reduction is not backed by evidence, according to a recent review in the Annals of Internal Medicine titled “Patient Outcome in Dose Reduction or Discontinuation in Long Term Opioid Therapy.” Comprehensive longitudinal data regarding opioids’ benefits in chronic pain patients is mostly lacking, as is the case for nearly all alternatives.
The 2016 Guideline for Prescribing Opioids for Chronic Pain from the CDC was introduced to provide general principles for how to treat people with chronic pain. It does not endorse mandated reduction. Instead the guideline indicates, correctly, that opioids should rarely be a first option for chronic pain. Indeed, some patients now on chronic treatment might have been successfully directed toward alternative remedies, such as physical therapy, anti-convulsant drugs, localized injections, or electrical stimulation when they first became ill, diverting them from opioids in the first place.
The guideline also recommends that doctors carefully weigh the risks and benefits of maintaining the current doses of opioids in patients already on them. This means, to us, that
doctors should discuss reductions with patients on long-term opioids, offer other options, and proceed with very slow tapering if the patient is interested. It turns out, in fact, that some patients welcome the chance to reduce the dose and even feel more alert once this is done. Nonetheless, there exists a contingent for whom only opioids work and who seem to benefit at a stable dose.
We seem to have come, in a tragic way, full circle. Doctors, in particular, have been open in acknowledging their role in the opioid crisis and are trying to balance appropriate prescribing with a duty to treat pain in an effective and compassionate way. Their challenge today is the mirror image of the balancing act they tried to perform back in the 1990s, when efforts to compensate undertreatment of pain gained momentum and led to overcorrection.
Everyone is trying to do the right thing, but the system sometimes fails patients who need opioids to manage chronic pain. As physicians negotiate this uneasy terrain, they need more data, less ideology—no matter how well-intentioned—and a case-by-case mentality. Until then, the clinical anecdotes that are accumulating should serve as powerful cautionary tales.