The Wrenching Dilemmas of a Caring Doctor Helping Those in Pain
In a city of pain, Dr. Edwin Perez has seen it all. As a New York City physician specializing in pain management, he's seen the lengths potential patients will go to for an opiate prescription. Sobbing and begging with knees on the floor are common, but the threats of suicide, “that's the bane of every pain doctor.” Once patients threaten to kill themselves if they don't get their script for pain medication, he must ask them if they are sure, because if so, and if they possess the means and the intent, he's required by law to call the police. “So far, everyone has backed down at that point, but I have had to call the cops for patients throwing chairs.”
He learned to be straight right off the bat. If he sees on the intake form a patient's interest in Oxycodone 30, he tells them immediately that “you won't walk out of here with a script for Oxy 30s. I will help you with your pain—physical therapy, other prescription painkillers and management techniques—but you will not get that specific prescription from me.” This prophylactic technique results in fewer disruptions because half of the potential patients respond at once with, “Thanks, I'll keep looking.”
Perez trusts his patients. He believes them when they tell him that they believe Oxy 30s manage their pain better than anything else, “but at the end of the day, I have to take care of my license.” He warns that the days of shopping for a doctor with a liberal pad for pain pills are numbered. “Eventually that game will come to an end.” New York state has been following the national lead of recommending that before prescribing narcotics, doctors check the electronic databases of a patient's doctor visits and their prescription history. For instance, the obvious red flag, “I see you got three Percocet scripts from three different doctors this year.”
“Plus,” Perez continues with a wry smile, “don't think we don't read the forums—because we do. We are aware that Oxy 30s have the highest resale value on the street.” Ninety pills at $30 to $45 a pop equals three or four grand a month, a vital sum of money for someone looking to feed their own habit or an elderly patient with no interest in opiates but in need of supplemental income. Asking for Oxycodone specifically also raises suspicion because Perez believes, “at the end of the day, I think its uniqueness is bogus. It really has no special ability compared to other mu-opioid painkillers. It's even more nauseating than fentanyl, and with so much variety in the receptors, it's hard to believe that only 30 milligrams of Oxycodone works for them.”
Despite his personal prohibition on that particular narcotic, Perez will still prescribe from the swathe of other painkillers derived from morphine and the other opium alkaloids, but with even seemingly honest pain docs like Ronald McIver spending 30 years in prison for drug trafficking, he must be cautious walking the line between the DEA's watchful eye and the needs of his patients.
Perez faces the well-known and much debated doctor's dilemma of opiate analgesics for the treatment of chronic pain. His journey to the pain clinics of the five boroughs reflects the nation's struggle with pain and the poppy.
Perez's journey through the fields of medicine demonstrate some of the system's current flaws. As the son of parents who immigrated from Puerto Rico and while growing up in Jersey City, New Jersey, where Spanish was the lingua franca of the neighborhood, he chose medicine over business because the latter seemed like a gamble and the former was “a way to buy myself more time before deciding on a career.”
As he went through the courses at the New Jersey Medical School, he grew interested in surgery, his eyes lighting up at “any kind of surgery. It was amazing. At the time, it fit my personality because I saw the world as black and white—no gray. Everything had a definite beginning and end. That is what surgery is—or what they pretend it is.” It was a competitive field to enter for newly minted MDs because of its high salaries and sexy allure, but as Perez squeezed into the program, he found the first two years to be “pure unadulterated torture” where he struggled to feel like he made a difference.
He remembers seeing a patient with terminal cancer whose lungs just collapsed. “I gave him the choice—we could re-inflate the lungs or let things take their course,” meaning a natural death within about 12 hours. “The patient said to me, 'I've been going through this so long—let's just let it go.'”
When Dr. Perez told his boss the patient's decision, he was told, “No, that's not your job to decide. Go inflate his lung.”
He finishes, “My life wasn't in great shape. I wasn't helping.”
With three years left in the program, he started to do “OK at surgery and bad at life.” The rules are getting better about not grinding interns into sleepless zombies prone to mistakes, but the habit persists out of a mixture of hospitals saving money and aging doctor/drill sergeants who like to put the rookies through the same gauntlet they suffered. Perez started falling asleep at red lights, on dates and with the stove lit. He credits his girlfriend at the time for changing his path by asking him to consider if this really was the life he wanted. This became a remarkable turning point in his life, “the first decision I really made on my own: What do I want? I want to help people but at not the cost of my own life.”
Friends and mentors recommended anesthesiology because it involved lots of time with patients, many different types of procedures and a focus on palliative medicine—a multidisciplinary approach to the reduction of pain and stress, no matter the patient's diagnosis. He enjoyed the field of anesthesia immediately because “you begin to feel like you're the gatekeeper acting in a patient's best interest. The surgeon always wants to cut. You can be the one to say that maybe now isn't the best time because of their heart or something else, making sure they're in the best shape before surgery.”
He found the work rewarding but amongst medical professionals, anesthesiology represents one of the four specialist categories sometimes referred to as RAPE doctors. Along with radiology, pathology and emergency medicine, these fields go by that acronym because in a hospital environment, these doctors don't have patients of their own and only serve as advisers who make recommendations to a presiding physician who retains the final say on a patient's treatment plan. Perez still works as an anesthesiologist half the time but it was a fellowship shadowing a pain doctor that inspired him on how to be a caring and effective physician.
Ignorance of Pain Is Not Bliss
A human being is a complex animal and many factors play into their pain. Perez never learned about pain in medical school and sees a field with a woeful lack of knowledge. He believes things are beginning to change as the medical schools realize they are creating a bunch of doctors afraid of prescribing narcotics, unaware of the range of options for treating pain and usually afraid to dig into a patient's case history and personal life. From his mentor, Dr. Andrew Kaufmann, he learned the importance of listening.
As a young doctor, he remembers witnessing the response of patients to Dr. Kaufmann. Their outpouring of gratitude amazed him. “I saw patients really thanking him, telling him he was the first to really listen to them, to take their pain complaint as real, to see them as a full person.” In this mentor, Perez found the physician he wanted to emulate. Kaufmann taught him patient Rule #1: You gotta believe.
“When a patient comes in, no matter how bizarre or strange the story, you must listen to the fine details and ask the questions.” Following this rule in his own practice, Perez caught many undiagnosed diseases that the previous physicians missed—cases of rheumatoid arthritis, rare genetic disorders and undiagnosed cancers—“All because no one was listening to the patient's pain. Their common complaint was that other doctors didn't believe them. You just gotta keep doing tests and rule out every biological cause you can imagine.”
Many patients come to him with diagnoses of fibromyalgia—a still mysterious disease, much more common in females—that involves chronic pain and fatigue among a host of other varied symptoms. For some doctors, the term seems to function as an updated diagnosis for “female hysterics,” a way to throw up their hands in defeat and focus on symptom management. Fibro is a diagnosis of exclusion, meaning that all the other potential physical causes must be ruled out by a process of elimination. Perez had one patient “who came in with a fibromyalgia diagnosis but never got tested for lupus. It's terrible.”
“That's where Dr. Kaufmann was great. Keep going, don't stop looking because someone somewhere along the line missed something. But in the end it was limiting because everything was biological.” It took Perez going out west to the University of Washington to learn about this in the biopsychosocial model.
First proposed by psychiatrist George Engel in a 1977 Science article, the biopsychosocial paradigm functions as a technical term for the popular concept of the “mind-body connection." A revolutionary yet eminently practical idea that states the health of the patient doesn't rest on biological causes alone but also on their thoughts and emotions at work in the environment of their socioeconomic status and culture. On a stint in Pacific Northwest, Perez saw the benefits of exercise therapy, psychiatry and going back to nature. He saw that all pain wasn't biological. “Emotional pain is real pain. We've all been there.”
The favorite example Perez enjoys sharing to demonstrate this concept occurred when a patient came to him asking for the removal of her spinal cord stimulator installed by another doctor a year ealier. These fascinating devices, first installed in the '70s as a treatment for chronic pain, are basically electrodes surgically inserted along the spinal column with a remote control allowing the patient to self administer electrical shocks as dictated by their pain. The mechanisms of why this works are still mysterious but they provide definitive relief in cases of failed back surgery and treating chronic pain conditions like complex regional pain syndrome. Perez asked why she wanted hers removed.
The patient quickly answered, “I don't use it anymore.”
“You haven't had any pain?” She shakes her head but as he looks at her chart, he sees that her back looks just as nasty as it did a year ago. He persists, “Is there anything in your life different than a year ago?”
“No. Nothing at all,” comes the rapid response.
“Humor me, please. Diet? Supplements? Anything at all?”
“Doctor, I'm telling you, nothing has changed. I just got a divorce, moved out of a house with really bad memories and my son, who hasn't talked to me in years, invited me to visit him at college. Besides that, nothing.”
He smiles broadly. “Thank you very much. I will remove your device next week.”
He explains, “Her pain was very real but it was brought out by her social circumstances. That's proof of biopsychosocial.”
When assessing a new patient, “I always start with a biological model. I make the assumption the pain is a biological issue. A long time ago in medicine, if you went to a doctor and said your belly hurt, they would say it was in your head. Then we found out about H. pylori,” the common stomach bacteria linked to ulcers, “and it turns out that it might not be just stress. I don't want to make a mistake and tell someone their pain is not physical just because I didn't dig deeper.” The causes of human pain are manifold and so are the many options to ease it.
How to Treat Pain?
When Perez tells patients they will not be getting Oxy 30s, he stresses the many options, not only the opioid pharmaceuticals ranging along the analgesic ladder from codeine syrup to fentanyl patches, but also antidepressive medications, Valium for anxiety, physical therapy, steroid injections, biofeedback, cognitive behavioral therapy and the ketamine infusions rapidly rising in popularity. Less proven methods but heartily endorsed by the alternative practioners include acupuncture (undifferentiable from sham needles according to a recent systematic review), light therapy, hypnosis and mindfullness meditation.
As they say, it's all in your head—but where else matters?
The CDC recently released guidelines for opioid prescription that were so rushed and unsupported by evidence that even the NIH's own pain committee called them “ridiculous” and “an embarrassment to the government.” Developed behind closed doors with special interest groups and with only 48 hours for public comment, the guidelines recommended not using pharmacological approaches to managing pain for anything less serious than cancer and went on to recommend limited quantities of painkillers for both acute and chronic conditions.
With pain being one of the great untreated areas of modern medicine, the CDC pushed harsh restrictions on some of the most effective tools. The Washington Legal Foundation charged the CDC with "blatant violations" of federal law for refusing to identify members of the advisory committee or to hold public hearings on a topic as heartfelt and varied as pain.
Pain patients agree the CDC guidelines are shortsighted and could have a disastrous impact on the pain community. In a survey of over 2,000 patients by Pain News Network and the Power of Pain Foundation, over 90% said the guidelines were discriminatory and would be more harmful than helpful to pain patients. Most said they had already tried non-opioid treatments, such as massage, acupuncture and cognitive behavioral therapy, and found that they didn’t work. Many predicted the guidelines would lead to more suicides in the pain community, and cause more addiction and overdoses, not less.
At the beginning of this year, the organization launched its #PatientsNotAddicts campaign to spread the message.
The FDA guide for opioid use summarizes the opinions heard from the majority of physicians in the field that when taken as prescribed, these opioid medications manage pain effectively and rarely cause addiction. When used in the course of treating acute pain from surgery and accidents, these drugs represent one of the last century's most important advances in the relief of human suffering. But they also can serve as the pharmaceutical pipeline to heroin, though to what extent is the matter of long and heated debate.
The opioid painkillers represent a vital aspect of pain management, but they're far more effective for the acute pain after a trauma than for the chronic pain of an ongoing condition. Tolerance builds inexorably and doses that would kill a full grown man can be taken daily by a young woman with fibromyalgia while still not more than taking the edge off her pain.
The cannabinoids seem to be a rising hope from the non-addictive treatment of chronic pain and autoimmune disorders according to no less an authority than the Institute of Medicine and a recent study in Journal of the American Medical Association found that states with legal medical marijuana to have a 25 percent decrease in painkiller deaths—presumably because of the well studied action of cannabinoids to potentiate the painkilling effect of opioids.
For the treatment of opiate addiction, pharmaceutical options abounds, only exceeded by the disagreements about their various efficacies. Perez cannot prescribe in-clinic treatments like methadone maintenance or the oral tablet Naltrexone. In a queer muzzling twist, none of these options can even be discussed by a doctor who didn't go through an entire fellowship in addiction medicine (though the most untrained and unrelated fields of medicine are allowed to prescribe the opiates).
He took the only option available and took a four-hour test administered by the American Association of Addiction Psychiatry that allowed him to administer Suboxone, a semisynthethic opioid available as a pill or sublingual film for under the tongue. It's a treatment preferred by some because it tends to have lower overdoses during the course of treatment although some patients don't find it strong enough to control their addiction. Perez is allowed to discuss Suboxone and Suboxone only.
Even as a doctor specializing in pain and regardless of any knowledge he may posses, he's legally barred from doing more than mentioning the names of the other treatment options. The ability of ketamine and ibogaine to treat addictions is being gradually recognized, though at a pace that feels glacial to the activists and researchers working for decades to spread the word, but that's an essay for another day).
In Burroughs' time, all the junk addicts looked for a croaker—the doctor with an open script pad who set the stage for the modern Florida pill mills of the Oxycontin Express—a documentary one of Perez's colleagues requires trainees to watch. Sitting in the waiting room of any needle exchange in the city and you hear hints and advice for doctors to check out as well as complaints about “prick doctors who never even listened to me.” Perez knows that some potential patients surely used such language about him, especially the half who leave when he makes his Oxy 30s speech. But when asked what he would change about the system, Perez hesitates, shakes his head slowly, and finally is unable to produce any easy answers.