Monday, September 17, 2007

"Drug Vacations" and Equianalgesic Dosage Coversion

By Old Goat

Sooner or later it's going to happen, If you are fortunate enough to find pain care to begin with. Take the same dose every day for a number of years and you will build up a tolerance to the medication. This is a normal and natural process. Your doctor can make it a most abnormal and uncomfortable process, as they do with many things to those of us in pain, making simple things complicated. You may be able to get some small increases from them. They act like it's a gift they bestow upon you, when in fact tiny increases, those that are barely felt by the patient are doing great damage, by simply increasing your tolerance to your medication with little to no benefit. Be on the lookout for that as it won't be long before your tolerance is shot to hell, with no real success, and you have reached the upper level of that doctors comfortable prescribing zone. The next step is something called a "drug vacation," which is anything but. This involves taking you off your medication altogether, preferably through a tapered withdrawal, and giving you some time off the drug in order for you to lose your tolerance so that you may later start back on the drug at a lower dose, but with the same effect as the higher dose you once took. The disadvantage of this approach is that you have to go through withdrawl, albeit with medical supervision, and have to spend some time without pain relief.

A more modern approach is to use an "opiate rotation," which involves using one opiate medication for a period of time, and then when you have developed a tolerance to it, switching to another opiate where the "cross-tolerance" (the ability of one drug to cause you to develop tolerance to another) is not as high, meaning you can start the new med at a dose lower than the usual equinalgesic dose. What this means is that if you were taking, say, oxycodone for a long while, you might be switched to methadone which has low cross-tolerance with oxycodone, and would remain on that until you developed tolerance and then switched back to oxycodone or another opiate.

While this approach is better than a "drug vacation," if is not handled correctly the patient can go into withdrawal or suffer increased pain, or alternately suffer from a possible overdose. This is especially true when switching to methadone in rotation. It is very important that the dosage conversion is done accurately and with due attention to the phenomenon of cross-tolerance and the fact it is not equal for all opiate medications. The reason I bring this up to you is my (former) pain doc did inadequate opiate rotations quite a good number of times, the last time missing the equivalency of the dose by 90% ! I wish I was kidding. They had done it by as much as 50% before, and of course the fault was laid at my feet, that I was not giving the medication enough time. I had to show them I knew where to find a dose converter, both as a chart (too much math involved for me) as well as a calculator. I want everyone to be able to find out if their doctor is being up front or shorting you mercilessly. The only drug that is not included in these tables and this calculator is the Duragesic (Fentanyl) patch. However I have also included the link that's a converter specifically designed for Fentanyl. Always double check their conversion, even if it's just with your pharmacist. Too high can be just as bad as too low. Dr Alexander DeLuca has an article illustrating just how complex this can be here.

Here's the table:

Here's the calculator:

Here's the one for our friends using the Fetanyl patch:

Now it's time for my disclaimer- all the numbers you will get when you crunch them through these converters are ballpark guesstimates. Every person and every pain is different. We aren't talking about candy here; it's much better to suffer from a mild (or severe for that matter) case of opiate withdrawal than the alternative of respiratory arrest and dying, Never kid yourself no matter how much opiate experience you have that you are invulnerable and it can't happen to you. But if your dose is only a 10th of what it should be, and you are feeling like crap, you now have the evidence to take to your doctor and a few days of feeling like shit isn't going to help and they better check their math again.
Here's hoping it never happens to you, but if it ever does you have the tools and the power to do something about it.

Pain free days to everyone--og

Saturday, September 15, 2007

Video on Opiate Medication and Pseudoaddiction

This video on chronic pain, pseudoaddiction and the appropriate prescribing of opiate medications was produced by the Maryland Board of Physicians. It touches on a lot of subjects, but is primarily aimed at doctors and focuses on improving the ability of doctors to prescribe opiates safely, effectively and in accordance with the law and also on helping to allay the fears doctors have of losing their licenses or addicting their patients if they use these drugs to treat pain. The link is at:

The video begins with two actors playing a doctor and a patient and depicts an interaction between a skeptical doctor and a nervous and defensive patient who has just moved into town and is looking to get a refill on the script for morphine she got from her previous doctor. This part of the video has a lot to teach both doctors and patients, as it shows doctors a classic case of pseudoaddictive behavior, and also shows patients how not to behave when they go to their doctor's office, particularly if they are a new patient.

The actress in the video walks into the doctor's office and gets right to the point: I'm here for a refill of my pain medication. The doctor gets a little defensive and starts to question her about the necessity of such a high dosage, and she in turn gets angry, defensive and frustrated as she tries to reason with the doctor and convince him that she needs this medication to function, nothing else works and not only are NSAIDs useless, but they gave her a GI bleed. The doctor remains skeptical but finally offers to call and discuss the matter with her previous doctor.

The doctor in the video is oblivious to the impact his attitude is having on the patient, and no doubt thinks she may be an addict based on her excitability and frantic demands for medication. But the patient has good reasons for being as nervous as she is, as she is utterly dependent on this medication to function, and if she is cut off abruptly, not only will she have to deal with the torture of her pain, but could go into seizures or withdrawal. She is, basically, looking at the barrel of a gun and wondering if the person holding it is going to shoot. This would make anyone a little nervous.

A chronic pain patient faces feelings like this every time he or she walks into your office. Going to a doctor's office, especially a new doctor, can be like facing your own execution: you are in a constant state of anxiety wondering if this will be the time that the medications you need to function are going to be taken away from you based on a false accusation of abuse or diversion, or simply because the doctor is no longer "comfortable" in prescribing them for you. This is particularly true if you already have a shaky relationship with a doctor, or you're a new patient and don't know what to expect.

Doctors need to understand just how incredibly stressful this really is and though the doctor in that video is asking his questions in a calm, straightforward way, many doctors will confront their patients in a far angrier and more accusatory tone simply because they asked for an increase in their meds as tolerance began to set in. That pseudoaddictive behaviors such as anger and defensiveness and frantic requests for meds can arise under these circumstances is something doctors should be prepared for.

At the same time, patients need to be aware that walking into a new doctor's office and immediately requesting a refill for a narcotic is practically guaranteed to get you labeled a drug-seeker. If you still have any credibility left after that one act, it will quickly be squandered by getting angry and defensive as the patient in this video does. One of the cardinal rules of dealing with doctors is never, ever lose your cool and get angry or defensive unless the doctor is doing something outrageous. While many doctors seem to feel they can vent their anger at you at will, few seem willing to reciprocate by allowing you to act human from time to time. Getting angry can and often does result in you getting denied treatment, and could get you blacklisted as a "problem patient" or drug-seeker as well. No matter how much you're provoked, try to respond calmly and with reason and logic. This doesn't mean be a doormat and let the doctor abuse you: you should definitely resist that. It just means don't give him a reason to be angry with you, and try to be as respectful as possible, just as you would in a less stressful situation with anybody else. Remember the doctor has a right to question you about your medication as well as ask you what other treatments you've tried. Try not to get defensive about this.

The second thing you should never do is walk into a new doctor situation without a complete copy of your previous medical records, and if you have a really good relationship with your previous doctor, you should ask your old doctor to contact your new doctor in advance to discuss the reason for your visit. It is far better for a doctor to hear you are looking to transfer management of your pain condition using opiate medications from your physician than to hear it from you. This will also give you advance warning if the new doctor is unwilling to treat your pain, so you won't have to wait weeks just to get rejected. If this isn't possible, you might want to suggest that the new doctor call your old doctor right from the word go rather than waiting for him to suggest it. Your best advocate in cases like this is the doctor you already have, as doctors are more inclined to trust another physician than you, and your new doctor can more easily justify prescribing meds if he understands the reasons your previous doctor did so.

While that video might be a little cheesy (where did they get that music from?), what it lacks in style it makes up for in substance, and is definitely worth a thorough review by both doctors and patients.

Drug-Seeking 101

In this video, "Nurse Bob" shows drug-seekers what they need to do to score drugs in the ER. I can't tell whether he's being serious or just joking, maybe he's just trying to be ironic, but I think there are a few lessons for people with real chronic pain in this video because it says a lot about how we are perceived when we come into an ER or doctor's office complaining of pain. He also illustrates a certain behavior many people with cp have that can exacerbate chronic pain.

In the video, Nurse Bob shows you how to get in and out of a chair if you want to be taken seriously by ER staff. I have seen many people with chronic back pain over the years and they do tend to get in and out of chairs like this and I have an interesting story that shows why that's a bad idea.

I have a friend who I met in a chronic pain support group whose primary problem is (or was) severe upper back pain. She had struggled for years with it, went to PT, multiple doctors and had multiple tests done, and of course when they couldn't find anything wrong told her it was all in her head, was the result of repressed anger, stop exaggerating your pain...da da da, da da da. One of the most difficult things for her was getting in and out of chairs, which was extremely painful, and a lot of times it would take multiple attempts for her to get out of a chair, which was painful to watch. She used to lift herself out of her chair with her arms by grabbing the armrests just as Nurse Bob demonstrates in the video.

One day, we had a Feldenkrais practitioner come and give a lecture to our group, and she observed the way my friend got in and out of chairs. Turns out that lifting yourself out of a chair like that is extremely inefficient mechanically, as you are literally lifting almost your entire body weight with your arms, in an extremely awkward position, and then trying to stand up from this position. This places enormous strain on your upper back which can lead to chronic pain problems. The instructor showed my friend the proper way to get out of a chair, which is not to lift yourself slowly with your arms, but to lean forward, placing your center of gravity over your knees while placing your hands on your knees, and then lift yourself up using your legs, rather than your arms, in one smooth motion, maintaining forward momentum as you do so. Your arms should play little role in lifting you up. My friend began to practice getting out of a chair like this, and within three weeks the chronic pain problem she had had for years was gone, and she hasn't had problems since. After all those years of seeing the "experts" at doctor's offices and PTs, no one ever noticed that the way she got out of chairs was extremely problematic, even though difficulty getting out of chairs was her primary complaint in addition to pain. If Nurse Bob is right, if she had gotten out of chairs correctly her pain may have been dismissed.

The moral of the story here is that doctors and PTs don't know everything, and you really need to be proactive and educate yourself about all the alternatives and be aware of factors that can perpetuate or cause your pain. Don't just wait for some doctor to find the answer for you, but engage in a little "solution-seeking" behavior.

Secondly, there is the issue of chronic vs. acute pain. Nurse Bob is correct when he says that doctors and nurses are more suspicious of people who've had pain for a long time than someone who just injured his back moving something heavy. You see this all the time in ER blogs, with doctors complaining of people with chronic pain as opposed to acute pain coming to the ER, as they figure you should have had enough time by now to find a physician to help you, and if you are coming to the ER, it is either because you were too lazy to look for a primary care doctor, or you just got fired by a doctor for a drug abuse issue. The possibility you might have a severe acute exacerbation of your chronic pain escapes many of them, so if you're ever forced to go to the ER, you might want to emphasize that the pain your are dealing with is a lot worse than usual and be specific if there is a causative factor, like you slip and fell.

Either way, they don't look too kindly on cp'ers in the ER, so the best advice here is to avoid the ER like the plague if you have cp, unless you simply can't take the pain. Try and find a pain specialist who understands pain, is not a shot jockey (does nothing but injections) and hopefully can see you in a timely manner. Having a good primary care is important too as you need someone to orchestrate all your treatments, because we do get sick from other things, as well.

Finally, there is the issue of keeping it simple. Nurse Bob's advice to drug-seekers is to claim a back injury and don't rehash a litany of symptoms like abdominal pain or headaches. Unfortunately, this advice applies to us, as well. Many doctors have difficulty with the idea that you can have more than one thing wrong with you at a time, and if you have multiple chronic pain problems, it confuses the hell out of them and they don't know where to begin. But many of us do in fact have complex problems and we want solutions to all those problems, and not just one of them, so this is a real dilemma. I have a very complex cp problem, and I can't tell you how many times I've seen a doctor's eyes glaze over, and then they shake their heads and stop me as I'm explaining what's wrong with me. I've learned to keep it simple. Many doctors can't handle complexity, which is why they reach for simplistic explanations of complex problems, like "psych case," or "drug-seeker."

If you have multiple chronic pain problems, but are in the ER because you just slipped and re-injured your back, try to keep the focus on your back and don't go into excruciating detail about everything that's wrong with you. If you need treatment for everything that's wrong with you, try to find a doctor who can walk and chew gum at the same time. Even with a sympathetic and competent physician, you might want to compartmentalize your problems, and deal with specific pain issues one at time with your doctor rather than throwing them at him in one shot.

I don't think Nurse Bob's intent is to encourage drug-seeking. He is simply acknowledging the reality that drug-seekers exist, and is trying to streamline the process of dealing with them to make it easier for all parties concerned. It is a purely pragmatic approach. We too have to acknowledge reality, and must learn what is expected of us by doctors, what attitudes or behaviors can make or break our medical care, and adjust our behaviors accordingly. Doing so is not manipulative, nor is it a surrender to the unfairness of this system, or acquiescence to the abuses we so often encounter. It is simply dealing with reality, and that's the real lesson you should get from Nurse Bob's video.

Friday, September 14, 2007

A Blacklist by Any Other Name Would Stink as Bad

Whitecoat Rants has just posted a timely article on the use of patient blacklists in the ER on his blog under the title "The List."

If you’ve worked in an ED, you have a list. It may be written or it may be kept in the back of your head somewhere, but you have a list.
You always give the benefit of the doubt to patients in pain, but there are a few that keep coming back that make you say “hmmmmmm” to yourself.

Why does he call it “The List?” Why doesn't he call it what it is, a “blacklist?” Because it is both illegal and unethical to have one? While I don’t doubt most ER docs get some real drug-seekers from time to time, I’m willing to bet most people on that list have been falsely accused, Whitecoat's assertion of giving patients the “benefit of the doubt” notwithstanding. You don’t give someone the “benefit of the doubt” by putting them on a blacklist, what you do is you appoint yourself judge, jury and executioner and pronounce a lifetime sentence of denial of treatment, at least at that hospital. Being blacklisted can and does result in the denial of care and injury or even death to a patient who has been so stigmatized. After all, that is its purpose.

It’s notable how many doctors are proponents of tort “reform” and the idea that if they injure or kill someone through error or negligence they should not have to pay for that. Certainly, they shouldn’t have to pay for life. But what happens to a guy who really is a drug seeker, really did screw up this one time in his life, and learns his lesson and cleans up his act afterwards? Apparently, he deserves to be punished for the rest of his life, even if the next time he shows up in the ER it is for a legitimate problem. Let’s not even ask what happens to someone who’s been falsely accused, and maybe has to stick a gun in his mouth to get pain relief because he isn’t going to get it from a doctor. Funny how doctors don’t seem to think the victims of blacklisting should maybe get a second chance if they ever show up in real pain after that, but think doctors should be absolved of responsibility for their own screw-ups. Apparently, altering a piece of paper is a more heinous crime than altering someone’s existence. Once he’s on that blacklist, a patient is branded for life with the Scarlet Letter “A” for “addict.”

Blacklisting is a time-honored tool of repression by totalitarian governments and featured prominently in the struggle for workers rights here in the US. Dissidents in the Soviet Union were branded with psychiatric illnesses, most often schizophrenia, and barred from employment in government agencies and universities. In US labor history, blacklists were used as a weapon against union members and their leaders and would be shared across companies in a given industry to deny jobs to those with union sympathies. In any context, blacklists are almost always a tool of oppression designed to deny someone access to something they need or desire.

Although Whitecoat's blacklist seems aimed at drug-seekers, in reality, patients can be and often are blacklisted for other reasons as well, particularly for filing complaints against doctors. Trudy Newman, in her article "DEADLY MEDICAL PRACTICES," discusses some of the ways in which patients may find themselves blacklisted and the implications for their medical care:

Patients who dare to question or challenge their doctor’s authority, or the medical treatment that they receive, may find that they become BLACKLISTED (i.e. denied specialist care). Physicians demonstrate a stronger allegiance to their colleagues, than they do towards their innocent and trusting patients. Patients with iatrogenic illnesses often become victims of the blacklist. The problems usually start when medical mistakes are made (either intentionally or unintentionally) and denied. Then the lies and cover-up begin. Documents are often modified, falsified, mysteriously disappear, or important information is excluded from the record. Doctors will go to great lengths to avoid being held accountable, and are generally protected by their professional associations. Once the patient is blacklisted he can then expect to be subjected to character assassination from the medical profession. The patient can anticipate being attacked, discredited and demonized. How dare a patient challenge a doctor's authority? To avoid taking any responsibility for their errors, actions or behavior, doctors--and their governing bodies--will often employ the same tactics that communist countries use to quash political dissent. The patient will be labeled "difficult" or "psychiatric." Such pejorative labels are given to divert attention away from the negligent, incompetent or malpracticing doctor. Patients should not take such labels personally, because these labels say more about the physicians than they do about the patients. Blacklisting is not an error. Blacklisting is an intentional act.

Given the serious and deadly consequences of being blacklisted, doctors who engage in this practice should face criminal charges, but seldom if ever do. At most, I would imagine you would have a case for a libel suit if you could in fact prove you were blacklisted, but many times the blacklist is not a physical list at all, but just a bunch of doctors talking amongst themselves. In either case, the damage is all too real. If you know or suspect that you have been blacklisted, don't let the matter sit and fester, contact a lawyer and demand that your name be removed from the list. Your life may depend on it.

Whitecoat finishes his "rant":

The good thing about The List is that once people know they are on the list, they don’t visit the ED nearly as much.
The sad part about the list is that we have to have a List at all.

The sad part is that doctors are allowed to get away with it.

More on Drug Seekers

In a recent post I talked about how certain online depictions of the "drug-seeker" have taken on the characteristics of an urban legend. While I stand by my remarks, I want to make it clear that I do recognize that drug seekers actually exist, and that they can cause a lot of headaches for doctors and nurses, particularly at times when there are real crises going on. But urban legends are not necessarily completely false; sometimes they are based on actual events or have a grain of truth to them, but they rise to the status of urban legend when that truth gets blown way out of proportion or becomes a self-fulfilling prophesy as confirmation bias sets in and people who are guilty of nothing but displaying one or more characteristics associated with drug-seekers find themselves branded and denied treatment. The reality of drug-seeking has clearly been grossly exaggerated, and due to the problem of confirmation bias, any evidence that a particular person or group of people may not be drug-seekers is discarded, and any "evidence," no matter how tenuous, that the same person or persons are drug-seekers gets reinforced and exaggerated. Confirmation bias is, of course, the basis of bigotry.

But like anything else, there are two sides to every story. We have doctors saying they are inundated with drug seekers, and cp'ers saying they are being falsely accused of drug-seeking and denied treatment as well as being blacklisted. I know without the slightest doubt which of these two events constitutes the greater crime, with denial of treatment being utterly barbaric and drug-seeking amounting to a nuisance, but my opinion on the validity of either viewpoint naturally tends to be biased towards the experience of cp'ers because that is what I know, and because I have experienced what they talk about myself.

But in a recent Usenet debate where I had posted my article "Drug Seekers: an Urban Legend?", a poster named Trisha provided what I thought were very balanced responses to some of my comments which I think are worth repeating here. Trisha has the unique perspective of having been a nurse for many years and experiencing drug seekers firsthand, as well as being a chronic pain patient and experiencing the problem of being falsely accused of drug-seeking and treated contemptuously by the medical profession. I feel her comments provide a much-needed perspective from the middle ground. The comments with the > thingies are mine:

"Even with a letter from my neurologist and approval from my pain management specialist, I've been refused care at an emergency room locally because they thought I was drug-seeking. Never mind that I have documented allergies to NSAID drugs, and that I'm already on Methadone for my pain....they offered me Toradol, an NSAID, or nothing. They said they'd call the neurologist and talk to him, but they weren't changing their minds. Then they had the balls to bill me for "services rendered." What services? The laughing and talking behind my back they didn't think I heard? The snide comments? The implication that I wanted to get stoned? The suggestion that even with a pulse of 136 and a blood pressure of 147/110 I wasn't in pain? Sure. Let me run right to the bank and get your money. Okay. NOT!

> Viewing so many people as drug
> seekers is really the result of ignorance and bigotry, and is
> unscientific. But to treat everyone contemptuously and to deny
> treatment to people on the basis of one's experiences with a handful of
> people is simply uncivilized.

I'm trying to think of how to put that it makes sense to someone but me...
If you go to a place, any place, and there are 586 people acting well, and behaving, and being civilized and such, and one creep is a blathering drunk, yammering at the top of his/her lungs, making inappropriate comments, falling over things, reeking like a brewery... At the end of it all, are you going to remember the 586 well-behaved people, or the jerk? What sticks out more in your memory? "Hey, remember the time we went to ------ and there was that one guy falling all over the place? What an idiot!"

It's not really ignorance. It is bigotry. I will agree with that. It's the cumulation of outstanding and memorable experiences. As an oncology nurse I witnessed the death of hundreds of people, but only a handful stand out in my mind 10 years after leaving that field. They were different. Mostly good different, but different nonetheless.

I agree it's uncivilized, but our society seems to be heading in that direction anyhow. Witness road rage. Where has traffic courtesy gone? How about the Visa commericals where people paying with cash are looked at as holding the line up? It's not so much about being kind or considerate any's each man/woman for themselves, and, yes, that has invaded healthcare just like everything else, and it sucks. I can't argue that point. It also sucks when I go to the grocery store and the cashier acts like she's doing me a favor by ringing up my groceries, forgetting that it's the shoppers that pay her wages. It stinks when someone in a big old nasty Navigator or Hummer thinks that because they are in that behemoth on wheels that screams, "I'm rich and you're not!" and I'm driving a (gasp!) used minivan that they have the right to cut me off, whip in front of me and slow down, or weave into my lane, all the while gabbing on the cell phone, reading the newspaper, and yelling at the kids watching a DVD or 3 in the back seat because they don't have enough time to spend with their kids and choose instead to pacify them with things.

> I suspect there are
> a helluva lot more crooks and creeps in the medical profession,
> percentage wise, then there are drug addicts among cp'ers.

Again, point taken. However, the loud obnoxious ones are the ones that make an impression, and they taint the memory and attitude, and it rolls over to the next person in chronic pain, and if you're already overstaffed and having a bad day, you get cranky and short and take it out on someone who doesn't deserve it. I'm not justifying it. There is no justification. None at all. We need to take each and every person at face value. But we don't. And it's not the good nurses and doctors that get the's the jerks and idiots and creeps that treat people like objects that make the news. I know lots of nurses, including myself when I was still able to work, who treat(ed) patients in pain with dignity and humanity and respect. There are many, many of them out there who truly care about a patient who is hurting and who do whatever they have to do to get the pain under control, even if it means fighting with an arrogant doctor at 3 in the morning until he gives the order for the medication the patient needs. And yes, I've done that. I've gotten docs so mad they got out of bed and came in to see for themselves that I was telling the truth. That doctor ate his words because he had nicked the patient's liver during surgery and I saved his life because he was bleeding to death. But do you hear about those nurses? Nope...not often enough. You hear about the ones who act like they never learned a social skill in their lives.

The whole thing sucks. I can't agree more. However, my original point stands...there are, indeed, drug-seeking patients, and they raise hell till they get what they want, and they hospital-hop, and the docs will eventually treat them to shut them up, and they are the ones that leave the impression on people and make them wary of dispensing pain medication to people who truly need it for relief and not for a buzz or a high. It's not right. I won't argue that. But that's how it goes.


Trisha, feeling crappy again (or is that still?)"

Wednesday, September 12, 2007

How to Get Instant Attention at your Dentist's Office...

...tell him the two teeth he performed root canals on are still hurting, and don't ask for narcotics.

I had two root canals performed a little over two months ago and I am still feeling pain in both of them. At times, this pain has been severe, actually worse than it was before the treatments. Now the senior dentist at this practice tells me this does in fact happen to a lot of people and it can sometimes take up to 6 months for the pain to go away, and that 5 percent of root canals fail, but if mine was destined to fail that would have been clear within the first few weeks as the pain would have been unbearable. Hmmm.

Meanwhile, his partner who performed the root canals is expressing doubts and is concerned about the fact they are still not healed, and wants to send me to an endodontist if I am still not better in a few weeks, though his partner thought that was unnecessary when I requested a referral. Don't you just love inconsistency?

But what's really amazing about all this is that every time I have come back to the office because of the pain or to get the temporary fillings redone they have seen me immediately. I mean, I am barely in the door before they are whisking me into the chair to wait for the dentist, who always seems to be ready to work on me within minutes. I really don't know what to make of this as I have never gotten the VIP treatment from a medical professional before, and I am cynical enough to believe it may be a sign they screwed up and are trying real hard to be nice to me, or they just don't want me spending too much time in the waiting room and badmouthing the work they did.

Or maybe they're just decent professionals who feel really bad that I haven't made adequate progress and have had to travel 1.5 hours down there several times already and they want to make it as easy as possible on me as they know I'm in pain.

Yeah, maybe I am a cynical bastard.

Tuesday, September 11, 2007

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 with a guy in a hospital gown voicing this very story!

The caption reads:

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!

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., 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?

Sunday, September 9, 2007

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.)

Common Myths About Using Opiates to Treat Pain

Addiction to opiates is very common and occurs easily.

Many people think that addiction is common because they mistakenly believe that persons who go through withdrawal if their drug is stopped are addicted. In fact, a person who experiences withdrawal is physically dependent; physical dependence is a normal response to sustained opiate therapy and is not important to a patient as long as the drug is not stopped suddenly.

Addiction is a disease, which is defined by craving, loss of control over the drug, compulsive use of the drug, and continued use of the drug despite harm to the user or others. Opiates are among the drugs that can become problems for people with the disease of addiction; others include nicotine, alcohol, cocaine, and stimulants. Fortunately, the capacity to develop addiction does not appear to be very common; for example, most people drink alcohol but only a small minority develop problems.

Most patients with pain severe enough to need an opioid have no history of addiction to any drug; their risk of developing addiction to the opioid is very, very small. If a person has a history of drug abuse, however, the risk is probably higher. These persons should still receive an opioid if it is clinically indicated, but treatment must be watched carefully. All patients should understand that the risk of addiction can never be said to be zero, but in most cases, the risk is small and careful monitoring of drug treatment by a doctor makes it very unlikely.

Pain medication can and should only be prescribed to a patient when pain occurs.

A patient with continuous or frequently recurring pain should be given pain medication around the clock, preferably a long-acting drug. It is far easier to prevent pain than to deal with it after it occurs. "As needed" dosing should only be considered in some patients. For example, patients with repeated episodes of acute pain may be given a drug to take just when the pain occurs and some patients who are given a pain medication around the clock are also given a short acting drug that can be taken when an acute pain (a so-called "breakthrough pain") occurs.

Uncontrolled pain is an unavoidable part of many serious illnesses like cancer.

Pain does not need to be an inevitable part of most serious illnesses. Cancer pain and pain associated with other serious illnesses usually can be controlled with medications and other therapies.

The side effects of opiates prevent a person from functioning and can cause more suffering than the pain.

The truth is that if the dose of the medication is carefully adjusted, and the side effects are treated, most patients have a much better quality of life. The overall effect of treatment with these drugs is very favorable in most cases.

As a patient's pain increases, the illness must be getting worse and death must be near.

Although it is true that pain can be a signal of disease, and the doctor should assess new pains or pains that are worsening, it is also true that pain comes and goes for different reasons. Worsening pain doesn't necessarily mean advancing disease.

If end of life is near, morphine or other opiates can't be increased without causing death.

Many people make an unfortunate connection between the use of morphine and imminent death. Remember, physicians use morphine and other opiates to relieve pain. These drugs can be used safely when a patient has a serious medical illness, and even at the very end of life. It is a myth that the only way to stop the pain associated with cancer or other serious illness is to give the patient a lethal dose of these medicines. Almost always, doses can be increased with little risk of serious harm. The reason to increase the dose is to relieve worsening pain; pain relief is often the most important concern at the end of life.

Enduring pain builds strength and character.

Many patients think that if they "tough it out this time it won't be as bad next time. That doesn't work. The opposite is true. Pain weakens a person. It weakens the immune system. It does not build character. Pain should be treated immediately and effectively.

Doctors face a choice between treating a disease and treating the pain.

Some people believe there is a choice between treating a disease and treating the pain caused by the disease. This is not true. Pain should be treated at all times, whether or not the disease can be treated. Some people mistakenly believe that if they're given a lot of pain medication, their doctors have "given up on them." The better way of thinking about it is this: If you treat the pain, the body doesn't have to concentrate on battling it. There is some evidence that treating pain relieves stress on the body, so the body heals faster. Patients need ever increasing doses of opiates because tolerance develops rapidly to these drugs.

Tolerance means the loss of drug effect over time.

Tolerance to opioid medications is a complex phenomenon. It usually does occur to side effects, such as nausea and sleepiness, and is a favorable occurrence. Tolerance to pain relief might become a problem, but does not appear to be an inevitable consequence of chronic opioid therapy. In fact, most patients stabilize on a dose for a long time. If more pain medication is needed, it usually is because the painful problem has worsened. In this case, pain control usually can be regained, the dose of drug can be increased or a patient can be switched to another opioid.

Edited by Russell Portenoy, M.D., Chairman, Department of Pain Medicine and Palliative Care, Beth Israel Medical Center, and June L. Dahl, Ph.D., Professor of Pharmacology at the University of Wisconsin-Madison, and Director of the Resource Center for the State Cancer Pain Initiatives. The myths document was prepared and edited on behalf of The Mayday Fund, a New York-based family foundation dedicated to alleviating the incidence, degree and consequence of human physical pain.

Thanks to Master Juba from for sending this one over.