- The Other Opioid Crisis: How False Narratives Are Hurting Patients
- The Other Opioid Crisis: A Failure of Care
- The Other Opioid Crisis: How the Criminal Justice System Imperils Patients and Physicians
- The Other Opioid Crisis: Ethical Issues Surrounding Opioid Regulation
You are sick and you go to your doctor. Who should have final say on the course of treatment? You? The doctor? Someone else? The answer is not as universal or as obvious as it seems.
In India, where I grew up, the norm is that the physician lays out the course of treatment, and the patient follows it without question, rarely even asking about so much as side effects of prescribed medications. The U.S. is quite different, with patients seeking second and even third opinions. Treatment proceeds with the patient’s consent, and written consent is generally required for anesthesia and surgical procedures. Informed consent, rooted in respect for patients’ autonomy and right to privacy, matters. Lack of consent can trigger legal liability.
Even in countries with slightly less expansive notions of personal autonomy, medical decision-making generally is supposed to be a matter between patients and medical experts, keeping the best interest of the patients in mind. The case of pain patients and their physicians, however, is much more complicated, with many of these principles being outright abandoned without regard to scientific evidence. Policies that focus on restricting opioid access of chronic pain patients cause significant suffering while failing to address illegal opioid use, which causes the vast majority of overdoses and deaths. Policymakers should recognize that the costs of such restrictions far outweigh any benefits. Prohibition has once again failed, only this time, the collateral damage includes pain patients and their families.
Decision-Making for Pain Patients
The 20 million Americans (including myself) who live with high-impact noncancer chronic pain are a diverse population, sharing two characteristics. First, we experience chronic pain from a source other than the active treatment of cancer. The causes vary, including congenital diseases such as sickle cell, currently incurable diseases such as migraines and Crohn’s, and physical trauma such as veterans’ active-duty injuries, civilian work injuries and other accidents. Second, we have complicated medical histories. Most of us have incurable diseases that must be managed for the rest of our lives. Most of us have more than one disease. “Average” does not apply to us.
In addition to my primary diagnosis, I also have comorbidities that leave me in constant pain. Nonetheless, I am fortunate that I need to coordinate care between only two specialists. I am also fortunate that I live in a metro area with access to these specialists. Most of the millions of my fellow chronic pain patients have even more complex conditions and far more limited access to care.
In an ideal world, treatment decisions would be made cooperatively between patient and physician, while respecting the patient’s agency, dignity and autonomy. We live in a world that is very far from ideal. Too many people who are completely removed from the decision—and do not bear the costs of being wrong—have become involved, or wish to be involved, in what should be a private decision between patient and physician. Policymakers, bureaucrats and law enforcement all have seen fit to push their own vision of what is appropriate chronic pain treatment, with little regard to the reality of the complex care needed by Americans living with high-impact chronic pain.
Government regulations surrounding the prescription of opioids, however, often leave chronic pain patients suffering without hope of relief, especially as the rhetoric about the opioid crisis has heated up. Most of the soaring number of fatal overdoses in the past several years are due to illicit fentanyl analogs that have never been part of medical supply chains, but policymakers cling to the notion that medical use is the source of the problem.
A Flawed Risk Analysis
Policymakers have two broad arguments about the risks of prescribing opioids. The first is that the risks of opioid dependence outweigh the relief these medications provide. The second is the fear that prescribed opioids will be diverted into the illicit market—either by the patient or by a medication thief. These justifications have not changed even though opioid prescriptions have fallen by two-thirds between 2012 and 2020. Fatal overdoses during the same time have more than tripled, as illicit fentanyl analogs have flooded the streets.
In reality, none of pain patients’ treatment options are risk free. Leaving pain untreated carries its own risks, not just in drastically reduced functioning and quality of life, but in increased risk of suicide, stroke, cardiac arrest and other medical complications. This risk is almost never mentioned; the Centers for Disease Control and Prevention (CDC), for example, do not seriously consider the risks of untreated pain even in the 2022 revision of its opioid prescribing guidelines, despite the many thousands of comments submitted by patients during the rulemaking process. The only risk the CDC considered is that of developing substance use disorder. This, according to various studies, is relatively rare in cases of medical use. If the patient has not previously displayed addictive behavior, medical use of opioids very rarely results in the patient developing substance use disorder.
This distorted risk analysis has led to an overemphasis on reducing opioid doses, even for patients who have no effective treatment alternative. The Department of Veterans Affairs, for example, executed its Opioid Safety Initiative in 2013 to sharply reduce the number of opioid prescriptions, but it failed to follow up to observe patient outcomes. Military suicide rates jumped soon after. Correlation, of course, is not causation. The agency, however, considered the Opioid Safety Initiative a success simply because the target of lower total opioid prescriptions was met.
Patient Agency and Autonomy
The war on drugs and the narrative that medical use has been a significant route to substance use disorder have resulted in a steady erosion of autonomy of both patient and physician decision-making in the treatment of chronic pain. In 40 states, laws limit physicians’ discretion in prescribing opioids for pain relief, such as the quantity they may prescribe. Further, all states maintain prescription drug monitoring databases. In many states, law enforcement can use these to access personal information about patients, and about physicians’ prescribing patterns, without probable cause or a warrant.
There is a strong overtone of ableism and paternalism in these policies. An invisible disability should not warrant stripping away the right to decide whether and what medical treatment choices are appropriate. The Drug Enforcement Administration (DEA), Congress and the state legislature should not participate in a discussion that should be limited to my medical team and me, assuming that the treatment is approved by the Food and Drug Administration.
Society has made significant gains in understanding that people with disabilities have autonomy, dignity and agency. The progress seems slower, however, when it comes to invisible disabilities and chronic pain. The conflation of medical with nonmedical opioid use, and of physical dependence with substance use disorder, is both the cause and effect of ableism and paternalism. Restricting our medical autonomy restricts our life choices. For many if not most of us, access to pain management determines whether we can participate in life—whether we can work, how we can parent our children and how self-sufficient we can be.
Effects on Medical Practitioners
Restricting the medical use of opioids harms physicians as well as patients. Law enforcement surveillance, and the real fear of loss of their license to practice, is part of the calculus for physicians when deciding how to treat pain patients. My own neurology practice stopped prescribing opioids in 2016. Drs. Stefan Kertesz and Allyson Varley point out that some reductions in dosage might well be happening because “many clinicians are reacting to a fraught public discourse and to external pressures as well, including measures that rate the quality of their work.”
Most law enforcement monitoring is done through the state-level prescription drug monitoring programs and an opaque metric called the NarxScore. The DEA conducts raids based on these data, disrupting care for hundreds of patients, even though the NarxScore does not provide any information on whether the physician is prescribing “for a legitimate medical purpose . . . acting in his usual course of practice,” as required by the Controlled Substances Act of 1964 and explained in the Supreme Court’s recent Ruan v. United States decision.
Excessive monitoring of prescription opioid use harms both doctors and patients. Three people died after the DEA raided Dr. Bockoff in November 2022—a couple who committed suicide, and a patient who died a month later. Dr. Bockoff had a small practice treating complex patients; for the couple who committed suicide, Dr. Bockoff was the third pain management doctor they’d consulted who was shut down by the DEA. Being a pain management specialist is a high-risk profession in the U.S. these days. Some physicians were vindicated in the wake of the Ruan decision, but physicians are rightly concerned about their livelihoods should they fall afoul of opioid prescription regulations. Further, patients cannot wait the years that litigation takes. They need continuity of care.
In the most recent version of its guidelines for prescribing opioids, the CDC chose 50 milligrams morphine equivalent (MME) as the level at which increased caution in prescribing opioids is warranted, down from 90 MME in its 2016 guidelines. Even though the CDC repeats its caveat about the need for individualized decisions, insurers and doctors are unlikely to risk exceeding the CDC recommendations, if recent history is any guide. The CDC chose to ignore evidence that MME is largely meaningless as a pharmaceutical measure. It also chose to largely ignore the pleas of pain patients about the harm caused by the 2016 guidelines, which the American Medical Association highlighted.
A single metric, problematic on its own, becomes the precursor to catastrophe when it is applied to a wildly varying group of patients with complex comorbidities, of different races, sizes, sexes and rates of metabolizing medication. Add in cops acting as medical decision-makers, and we have the world that chronic pain patients must navigate and survive in, all while coping with poor health.
The Way Forward
Pain patients are an extraordinarily vulnerable group. The current policies are devasting for people using opioids with a legitimate prescription, but they are just as bad for people with substance use disorder.
The conflation of medical use by patients with illicit use and street drugs has distorted the delivery of care to millions of patients. Doses are tapered at rates rapid enough to harm patients, medications are changed without patients’ consent, patients face abandonment by their physicians, doctors leave practice and the DEA threatens even more raids. The Iron Law of Prohibition ensures that illicit drugs continue to become more deadly, and fatal overdose numbers rise. It is past time to reexamine failed policies.
The war on drugs and the resulting opioid policies destroyed my friend Arianne’s family. A spine injury sustained in a tree cutting accident in 2010 left her a chronic pain patient; after the CDC’s 2016 guidelines, she became a pain refugee, one of the many who could not find a physician to prescribe the medications she needed. Her daughter, Desiree, was putting her life back together but was unable to access legitimate medical treatment for her panic disorder. She lost her life in 2022 to a counterfeit Xanax. Now, the many years of untreated pain have left Arianne unable to take care of her grandchild.
The Ruan decision provides a way to rein in the DEA’s worst excesses. But a multiyear-long litigation, with the physician’s license suspended for the duration, is not particularly helpful for patients or physicians, even if a court ultimately rules in the doctor’s favor.
Raids on doctors need to stop. Pain management doctors, far from being “pill mills,” are simply trying to treat complex patients no other physician will treat. With treatment, chronic pain patients have a better quality of life; without it, they suffer needlessly. Additionally, individuals have the right to make autonomous decisions to access care.
State policymakers must step up to ensure that the regulations governing opioid use actually help as intended. The current policies have failed to prevent opioid overdoses or help people with substance use disorder. Instead, fatal overdose numbers have climbed as expanding swathes of pain patients have been cut off from care.
The current policies harm everyone. They penalize patients who need treatment, causing them to suffer needlessly, while failing to prevent the harms they’re trying to address. Protecting physicians to allow them to treat patients using their best medical judgment, without fear of arbitrary metrics and law enforcement raids, is critical in restoring autonomy to both patients and physicians.