The Drug-Seeker: an Urban Legend?

I doubt there are many people involved in the wonderful world of chronic pain on either the treatment side or the lack of treatment side who haven't heard of that malicious and devious creature known as the drug-seeker. Depending on one's point of view, he is either a Svengali-like manipulator able to hypnotize even the most jaded doctors into forking over Vicodin by the jugful or a pathetic, toothless rube claiming to be allergic to every drug known to man except that one beginning with a "d" (Dilaudid, or Demerol). To hear some doctors talk about it, it seems that everyone with pain is either a drug seeker or a wuss who couldn't handle a paper cut without an IV morphine drip. But it seems the drug-seeker is universally blamed by both doctors and patients alike for the hostile and negative attitudes people with chronic pain routinely encounter from the medical profession.

One of the interesting things about the drug-seeker phenomenon as it is often described on many medical blogs is that you often read accounts of drug seekers that are remarkably consistent from one blog to the next, as if everyone has encountered the exact same guy using the same pathetic story to scam for drugs. Usually, it will be an ER nurse or ER doctor talking about a guy who claims to be allergic to "Tylenol, ibuprofen, and every other NSAID, and Toradol doesn't do it for me; but I can take Vicodin and that other drug that begins with a "d"...uh, I had it the last time I was here...what's that thing called...oh, that's right! Dilaudid! (or Demerol, both powerful narcotics). If you read medical blogs a lot, and I do, you will likely encounter some version of this story with only minor variations.

In fact, this story is so common that someone has even begun marketing an assortment of magnets and buttons on cafepress.com with a guy in a hospital gown voicing this very story!

The caption reads:
"YEAH RIGHT!

Well, I hurt my back about three months ago and heat and ice just aren't cutting it. I'm allergic to Tylenol, Ibuprofen and Naproxen and Toradol just doesn't work for me. I had really good luck with that one medicine I got the last time I was here. What was it called? It started with a "D". I think.. Does Demerol sound right?

It starts with a "D" all right!
DRUG SEEKER!"

The thing about this story is that it's obvious that anyone actually using this line is going to earn himself a one-way ticket onto the blacklist and can forget about ever getting drugs in that hospital again. No doctor would be likely to give meds to a guy like this particularly as they all claim to have heard this story a million times, so you would think that by a simple process of evolution the drug scammers would either put their heads together and come up with a better spiel than this, or would be forced to give up on trying to score drugs at the ER.

Yet according to the DEA, drug scammers are so sophisticated that there is allegedly an "epidemic" of prescription drug abuse and diversion going on, and drug seekers must therefore be quite skilled at obtaining drugs (of course, the DEA is full of crap, too, but I digress). This is particularly true as most people with real chronic pain problems report incredible difficulty getting doctors to take their pain seriously and prescribe any painkillers at all, let alone an adequate dose, and frequently report being accused of drug-seeking or of being whimps who can't take pain. If soaking your spear with the blood of your first "drug-seeker" is a rite of passage for many docs, being falsely accused of being one is a rite of passage for people with chronic pain.

In truth I can see how a sophisticated drug addict who knows how to play the game would have a far better chance of getting pain meds than some poor girl who has never had severe pain in her life, but one day injures her back and limps into the ER complaining of severe pain. She naively says she's allergic to NSAIDs, but her friend gave her an OxyContin that worked great for the pain, and "can I have one of those?", not realizing that she just signed her own arrest warrant and won her doctor $50 bucks from the "first drug seeker of the night" pool.

So I would imagine anyone actually dumb enough to use a story like our poster boy above would more likely be a legitimate chronic pain patient who doesn't know any better than a scammer, and that this archetypal drug seeker you encounter on so many many med blogs is in reality just an urban legend, stitched together like Frankenstein from bits and pieces torn from real people with real pain who were too naive to know they were walking into a minefield when they stepped into their doctor's office and used the "P" word for the first time. It is highly improbable that so many different doctors, in so many different places, would have had so many encounters with this many individual patients who all presented with almost identical stories.

Snopes.com, the noted debunker of urban legends, defines urban legends as:

...narratives which put our fears and concerns into the form of stories or are tales which we use to confirm the rightness of our world view. As cautionary tales they warn us against engaging in risky behaviors by pointing out what has supposedly happened to others who did what we might be tempted to try. Other legends confirm our belief that it's a big, bad world out there, one awash with crazed killers, lurking terrorists, unscrupulous companies out to make a buck at any cost, and a government that doesn't give a damn.

Folks commonly equate 'urban legend' with 'false' (i.e., "Oh, that's an urban legend!"). Though the vast majority of such tales are pure invention, a handful do turn out to be based on real incidents, and whether or not something actually happened has no bearing on its status as an urban legend. What lifts true tales of this type out of the world of news and into the genre of contemporary lore is the blurring of details and multiplicity of claims that the events happened locally, alterations which take place as the stories are passed through countless hands. Though there might indeed have been an original actual event, it clearly did not happen to as many people or in as many places as the various recountings of it would have us believe.

It definitely seems as if our archetypal drug seeker story meets the definition of an urban legend, both in the sheer improbability of its being true in so many different areas, as well as the fact that it serves to "confirm the rightness" of the medical profession's "world view," which is to err on the side of undertreating pain in patients with legitimate pain problems. If you can convince yourself that everyone with adverse reactions to drugs or who requests a drug by name is an addict, you don't have to go home and hate the person you see staring back at you in the mirror each morning.

Perhaps you should.

How common is "drug seeking" really? No one has ever done a formal study of actual drug-seeking behavior that I'm aware of, but there have been numerous studies on the incidence of actual opiate addiction in chronic pain patients and in the general population as a whole, and every study I am familiar with show very low rates in both groups, the highest estimate being less than 3 percent for cp'ers using a rather bizarre definition of "opioid use disorder," whatever the hell that is, and 1 percent for the general population. So it is really hard to see where this legion of Toradol-shunning Dilaudid zombies is coming from, given the naked facts.

But facts are things that are readily discarded whenever they prove inconvenient in the world of medicine, just as they are in the rest of our world. Far better to cling to convenient half-truths and urban legends if they make you doctors feel better about yourselves, because after all, it's all about you. Most likely, there is at most a small minority of pain patients who fall into the category of drug-seeker and a very large majority of people with legitimate pain problems being falsely accused of drug-seeking out of ignorance and bigotry. Many of those people are forced into the role of drug-seeker by the very fact that doctors are reluctant and unwilling to treat pain aggressively, thus it becomes a self-fulfilling prophesy. If a guy shows up in your ER with excruciating pain and you give him 10 Vicodin, why are you shocked that he would add a "zero" to the "10?" What choice did you give him? Maybe if you had treated his pain appropriately with an adequate amount of medication for the $1,600 he brought into your hospital he wouldn't have had to do that.

But that fact is just too inconvenient for you to hear, isn't it?

VA's Health Records Software Allows Blacklisting of Veterans

The Veterans Health Information Systems and Technology Architecture (VistA) is a system-wide electronic health records program employed by the United States Veterans Health Administration to enable doctors in any VA hospital or outpatient clinic to quickly create and review patient records as well as order medications and tests. Computerized medical records improve efficiency, reduce the need for repeated tests, and reduce the potential for medical errors. Used properly, they are a powerful tool for improving the quality and efficiency of patient care. But they have a dark side, as well. The same technology that enables a VA doctor in San Diego to review an MRI within minutes of its being performed in New York allows any doctor within the system to view any negative, inflammatory or libelous statements that may be included in the patient’s record, possibly prejudicing the doctor against a particular veteran, and compromising if not sabotaging that veteran’s medical care.

The VistA electronic medical records software contains a feature called a “Patient Record Flag” (PRF) that gives doctors in the VA system the ability to blacklist patients who in their opinion are disruptive or pose a potential risk to the health and safety of patients and staff, or who have exhibited drug-seeking behavior. When a doctor in the VA system accesses a patient's electronic record, there is a small button labeled "Flag" in the upper right-hand corner of the menu that appears with the patient's record, and doctors can easily read or enter remarks about "problem patients" by clicking on that button, which will be highlighted in bold red letters if there are any entries, but is otherwise greyed-out (see image below).



The PRF is by design readily accessible to anyone within the system with access to a computer terminal, including receptionists and administrative clerks, and thus compromises patient confidentiality. While ostensibly designed to protect the safety and wellbeing of patients and staff from patients with a documented history of threats or acts of violence, the Patient Record Flag has enormous potential for abuse, and can be used by a doctor to demonize or libel a patient who has filed a complaint against the doctor, or who has simply engaged in behavior the doctor personally finds suspect or annoying. Patient blacklisting is a particularly insidious form of libel, as it can and often does result in denial of medical care and puts the patient's life, health and privacy at risk.

Patient blacklisting is a fairly common but rarely discussed problem throughout the US medical system even though it is widely considered to be unethical and is often illegal as well. Doctors use these blacklists as a means of alerting other doctors to patients they feel may pose a problem, but they are also used to punish patients for no other reason than the patients in question annoyed the doctor or filed complaints against him, and are often a willful attempt at medical sabotage. Sometimes doctors will specifically request that a particular patient be denied medical care. Other times, doctors will voluntarily refrain from providing care due to the fear a particular patient might file a lawsuit against him or might be a drug seeker. Since denial of proper treatment can lead to the injury or death of a patient, blacklisting is in reality a form of medical assault and malicious libel.

But despite their widespread use, medical blacklists tend to be fairly local in scope, often existing exclusively within a particular hospital or shared across a few local hospitals, doctors and pharmacies. These blacklists are usually informal, often just a notebook maintained in the ER of "problem patients," such as "drug seekers" or "frequent flyers" (patients who come to the ER looking for drugs to treat their pain or to get high, or with a perceived excessive number of visits). It is remarkably easy to get added to a blacklist, particularly for chronic pain patients who are routinely stigmatized as "addicts" by uninformed or unethical physicians who frequently confuse legitimate requests for pain treatment with the behavior of drug addicts looking to get high. Some private pharmacy chains also maintain records of any "drug-seeking" behavior they perceive to have encountered and share this info throughout their own computer networks, as well as with doctors upon request.

But the VA has unfortunately moved this primitive practice into the 21st Century by incorporating the ability to blacklist patients right into its software, which means that any patient who is so branded is going to have a problem not just in his local VA hospital or outpatient clinic, but throughout the entire VA system. Although the VA publishes a guideline for the use of the PRF (Patient Record Flags Phase III User Guide, available here) it is possible for a doctor to write anything he wants in the PRF, and unless the patient finds out about it, which is unlikely, he will not be able to challenge it. This documentation describes the PRF thusly:

Patient record flags are used to alert VHA medical staff and employees of patients whose behavior and characteristics may pose a threat either to their safety, the safety of other patients, or compromise the delivery of quality health care. These flag assignments are displayed during the patient look-up process (pg 1, PRF user guide).

Perhaps recognizing the potential for abuse of the PRF, the VA also notes in its guideline that:

PRFs should never be used to punish or to discriminate against patients; nor should they be constructed merely for staff convenience. The effectiveness of PRFs depends upon limiting their use to those unusual risks that threaten the safe delivery of health care. Threats to the effective use of PRFs are their misuse and their overuse." (p 27, PRF user guide)

PRFs need to be free of redundant language, slanderous or inflammatory labels, and language that provides insufficient information or guidance for action.
(p 29, PRF user guide)

But it is difficult to see how adopting a guideline that many doctors in the system have probably never bothered to read is going to prevent abuse of this system. Though the VA requires that all PRFs be reviewed every 2 years or whenever a patient requests a review, as noted below, there is no requirement for notifying a patient that he has in fact been red-flagged and the damage is often done by the time a patient figures out he's been blacklisted, if he ever does. Two years is a long time to have to go without proper medical care because some doctor at the VA didn't like your attitude, and there is no guarantee the review process will remove frivolous or libelous PRFs.

As part of the patient health record, all PRF are under authority of the Chief of Staff at each facility and must be reviewed at least every 2 years. A reminder for upcoming review must be generated 60 days prior to the 2-year anniversary date of the PRF. NOTE: PRFs must be accorded the same confidentiality and security as any other part of the heath record. (p 28, PRF user guide)

However, it is unlikely the confidentiality of patients is being protected when the VA authorizes nearly anybody within the system with access to a computer terminal, including enrollment clerks, insurance and billing staff, and travel clerks to access the PRF.

While some strategy to alert the staff in VA hospitals of patients who have a proven history of violence may seem logical and warranted, the mechanism they have chosen amounts to little more than a blacklist where any doctor can voice hostile opinions about patients he doesn't like and effectively sabotage any patient's care.

The VistA software's built-in blacklist is of particular concern to veterans with chronic pain problems, as patients complaining of pain are the most frequent targets of blacklists in other medical contexts and some blacklists are maintained exclusively for "drug-seekers." VA's guidelines specifically allow the PRF to be used to red flag patients who exhibit "drug-seeking" behavior (pg 23) without specifically defining exactly what that behavior is. In fact there is no consensus definition as to what actually constitutes "drug-seeking behavior" and the term lacks scientific precision. For the most part, drug-seeking behavior is whatever the doctor says it is, based on nothing more than medical folklore or his own prejudices. Chronic pain patients often find themselves branded with the modern-day equivalent of the Scarlet Letter (in this case, the "A" is for "addict.") for no other reason that they exhibited behaviors that are often associated with real drug addicts, a phenomenon known as "pseudoaddiction." Dr. Frank B. Fisher, a Harvard-trained general practitioner and chronic pain advocate in California, describes pseudoaddiction thusly:

The term pseudoaddiction was coined in 1989 to describe chronic pain victims mistakenly diagnosed as suffering from opioid addiction after they were driven, by undertreated pain, to display certain drug-related behaviors. Simply stated, pseudoaddiction is a misdiagnosis that results from undertreatment of chronic pain. When this diagnosis is made, the medical system has erred. Recognition that patients are frequently harmed by misdiagnosis of addiction should prompt an aggressive search for undertreatment of pain. Unfortunately, this usually does not happen. Instead, when a patient displays certain behaviors, he is typically threatened with termination of his treatment, rather than questioned about its effectiveness. (Source)

So clearly, labeling a patient as a "drug-seeker" is not only libelous, it is unscientific as it is impossible to determine whether a person is an addict or not simply through behavioral cues. Of course, doctors certainly do not need to use the PRF feature to blacklist a patient, but can do so through more traditional means or by simply entering libelous or inflammatory comments in other areas of the patient's medical record. But the mere existence of the PRF suggests to any doctor in the VA system that blacklisting a patient is not only a permissible but a desirable thing to do, even when that blacklisting doesn't fall within the parameters of the stated guidelines, which are problematic in themselves. Thanks to the VA's creation of an officially-sanctioned, computerized blacklist, many veterans may find themselves unfairly branded for the "crime" of being wounded during their service and demanding treatment for their pain.

(The VistA software was developed at taxpayer's expense and is public domain and can be downloaded with a Freedom of Information request, but the website also has a downloadable demo available here.)