In her third guest post for Points, pain relief activist Siobhan Reynolds traces the unraveling of the doctor-(pain)patient relationship under drug prohibition.
Perhaps the most disturbing consequence of opium prohibition, and the one least talked about in polite company, is the steady degradation of the doctor/patient relationship that has occurred since prohibition’s inception. In poor countries, where opioids are not at all available, physicians speak truthfully to their patients when they tell them that they have nothing with which to relieve their pain. In countries like the United States, where opioid pain medications are ostensibly legal but where physicians have been intimidated into withholding pain treatment, the doctors feign their impotence. There is certainly a great deal of pain relief to be found in opioid medications, and they are stacked on the pharmacist’s shelves. But physicians in the US are jailed – often arrested by SWAT teams, de-licensed and destroyed financially – for treating pain in a manner inconsistent with the opinions of government lawyers and agents. If you ask the physician who refuses to treat pain with opioids if his fear of official attention is the cause of his failure to serve his patient, you will likely meet with something quite different than such a humble confession. Instead, you will hear about how addictive the opioids are, or the doctor will say that their use should be confined to the care of the terminally ill, when addiction is not a concern. And he will extol the virtues of the anti-inflammatory and of psychiatric drugs. He will talk about the miracle of biofeedback and the importance of a positive outlook on life in the treatment of pain.
All of these responses have their place in the treatment of pain after the pain has been medically controlled. But recommending these adjustments as if they replace the pain relief provided by opioids is like telling a woman whose house is burning that a simple glass of water will fix her problem or a diabetic that he must exercise to earn his insulin. To a person in suicidal levels of pain, this kind of dissembling amounts to psychological and physical abuse. And yet this conversation between doctor and patient is par for the course under drug prohibition. It is a refrain patients hear over and over, until they finally stop searching for relief and eventually give up on living all together.
The fundamental truth that confronts anyone concerned with the quality of the doctor/patient relationship under drug prohibition – namely, that doctors have in essence been turned against the interests of their patients – remains almost entirely unacknowledged by the profession as a whole. As a result, in the underworld of pain treatment–where there are a few idealistic doctors, and many who are looking to take advantage of what is perceived to be easy money–patients are essentially imprisoned by their doctors; their very ability to function and provide for their families is held hostage to the demands their physicians make on them in order to comply with what the physician believes is required by law enforcement. It matters not that the demands might be utterly unreasonable or entirely degrading to the patient. The patient has no choice but to submit to the doctor or go to the street for the medications – a prospect that brings with it even more onerous sanctions.
As physicians have been subjected to a campaign of official intimidation that began with the adoption of the Harrison Narcotics Act and continues to this day (nicely documented by Joe Spillane on this blog) an ethos of suspicion toward people in pain has found its way into the doctor/patient relationship around the world. Without so much as a peep from the academic circles of medical ethics, the profession has adopted wholesale the law enforcement imperatives foisted upon it. The few physicians willing to treat pain patients with opioids come to be more aptly likened to compliance officers at drug rehabilitation clinics. Having tacitly accepted the notion that only patients who don’t also smoke marijuana or procure pain medications through other means deserve pain treatment, physicians routinely require patients to perform random urine drug screens and to pay for them out of pocket in order to prove their worthiness to receive pain care. A significant number of patients don’t metabolize opioids as expected, but this fact isn’t widely known.
Moreover, it is not unheard of for a physician who suspects “abuse” to call a local cop or DEA agent to the home of a patient in order for the officer to perform a surprise pill count. If the patient proves to have too much or too little of the drug, the physician will summarily discharge the patient from care. If a patient’s family in any way objects to his or her use of the medication and the family suspects that the patient suffers from addiction, the doctor is obliged to terminate care immediately or incur the wrath of the criminal authorities as well as the medical licensing boards and the civil attorneys braying for a sizable pay day. If a patient loses a prescription or has his pills stolen he is likely out of luck. The vast majority of chronic pain patients are forced to sign what is euphemistically called a “pain contract” with their doctors in which they give their doctor permission to terminate opioid treatment should any one of a whole litany of events occur. Patients also “agree” to refrain from calling the physician on weekends and skip going to a local emergency room should they need more relief. Turning the notion of informed consent on its head, patients are required to act as silent recipients of abusive treatment. If the patient is unhappy with the care he receives, he can attempt to find another doctor. Branded as a difficult patient, the malcontent will be shut out of whatever practices prescribe opioids. With the standard of suspicion set firmly in place, the power relationship between doctor and the person in pain is tilted entirely on the side of the embattled doctor. As a result, all kinds of abuses of power flourish in the dark.
I became familiar with this dynamic when my husband, Sean Greenwood, now deceased, suffered systematized abuse at the hands of the doctors who treated his pain. As I developed the Pain Relief Network and came into contact with thousands of people similarly afflicted, I realized that the abusive relationship was not unique to Sean and his doctors but was ubiquitous in the world of chronic pain sufferers. In a surprising and under-cited article that appeared in Practical Pain Management in early 2005, the authors trace the negative interactions between people in pain and the doctors who treat them to the Milgram studies conducted at Yale in the 1960s and later repeated at Stanford, which demonstrated that people tend to yield to pressure exerted upon them by authority figures even when the activities they are pushed to perform clash with their ethics or are could result in another person’s death. The experiments showed the powerful negative impact that outside authority has on human behavior, specifically when it affects fragile relationships in which one person has total control over another.
When told to administer “lethal doses” of electrical shocks to subjects under their control, a full 100 percent of those empowered by an authority figure were more or less obedient to the will of that authority figure. Many of the situational torturers were willing to comply even to the point of administering shocks that they believed were killing those people under their control. In this ongoing series of experiments involving 1000 people chosen because they demonstrated no history of psychological problems, it was discovered that apparently normal people would become abusive when the balance of power was profoundly unequal and when someone respected as an authority applied pressure on them. The results of the study were so unexpected and shocking, that the study was terminated ahead of its planned ending. At the time, the findings were controversial but subsequent studies have born the results out.
When reflecting on the desperate situation faced by people in pain due to the unavailability of effective treatment (and the few doctors who treat them operating at the direction of medically untrained police agents) imagine, if you will, what the patients suffer. Think for a minute about the following: the normal people in the Milgram studies were willing to torture their subjects to death rather than merely disappoint an authority figure. Imagine if, as is the case with doctors who treat pain, their lives, liberty and careers were on the line should the person under their control behave in a manner inconsistent with the wishes of the DEA or other supervisory bodies. Would you trust such a doctor to behave in a manner consistent with the best interests of the patient? Or would you be more realistic in acknowledging that the situation is ripe for abuse and neglect?
The situation is so bad inside medical practice that I advise patients to take any and all measures to keep their pain treatment to themselves. While it is illegal to grow opium, many native peoples have done it for generations, using opium tea to soothe chronic pain. To subject oneself to the ravages of modern pain practice is to put oneself at the mercy of people who are well versed in denying meaningful relief. And because the system has developed in the dark for nearly one hundred years, every aspect of it functions to profit off the suffering of the patient. Whereas medical management of pain is often the least expensive and most humane approach to serious intractable pain, the widespread denial of care functions to push our most vulnerable citizens into numerous surgeries, expensive poly-pharmaceutical regimens, rounds of physical rehabilitation, repeated efforts at diagnosis, and interventional pain treatments that are exceedingly expensive and of little help to those suffering the neurological disease of severe chronic pain. The pain patients are indeed the slaves of the system, those purporting to serve them profit from their predictable decline.
Excellent and very perceptive article. Unfortunately, the road ahead for opioids in the U.S. looks rather bumpy, and the situation could get even worse. It is always sad when policies in the guise of protecting public health are driven by the very small minority of persons who would misuse and abuse medications like opioids; as a result the silent majority with legitimate pain, who need the life-saving relief that opioids can offer, will end up needlessly suffering.
“when policies in the guise of protecting public health are driven by the very small minority of persons who would misuse and abuse medications like opioids”
It’s even worse, to my mind, in the present case. The use of opiates in Pain Management is NOT driven by drug abusers – it’s driven by an ignorant, insane and greedy DEA and DOJ. Did you know the DEA was about to lose a lot of funding when they hit on the idea of attacking PM doctors and their patients? The doctors are vulnerable because, knowing the Medical Standard of Care, they know they’re not doing anything wrong, so they don’t expect to be attacked; a SWAT raid is the farthest thing from their minds! Even then, they’re usually just certain it’ll “all be straightened out. After all, the treatment is correct, the patient’s response is amazing, almost a miracle, and the drugs are legal! They land in prison never understanding what happened. The DOJ, especially with the DEA’s help, can make ANY PM doctor look like a “Pill Mill doc,” and they do. Doctors are getting wise now though, and CPs left hanging – sometimes literally, in the garage from the rafters all too often.
Of course the patients are even less able to fight back – poor, unable to work, rest, sleep, think, function. And neither group shoots back. It’s great publicity for the gov’t., and both groups are all but helpless against the full might of the government. THAT is what drives this! Please don’t blame it on the victims; the Republicans/RadRight do enough of that as it is.
Ian
Stewart, I’m curious as to what makes you think the situation will get worse. Is it the information in the New York Times story linked in Siobhan’s second post for us (about the “doctor training” by DEA agents and a host of other new rules) or something else – perhaps even more foreboding?
Siobhan, I’ve already thanked you for this post privately, but I think “polite society” does a great disservice to itself and its chronic pain sufferers – as well as its doctors – by staying silent on the topic. I appreciate you writing this post for us, and I’m glad we can host it. I hope it helps others who have face this. I’ve dealt with condescending doctors and doctors who simply would not write me what I needed even though I was sitting there crying in pain. I’ve refused to sign pain contracts and generally been the malcontent trouble-patient. It’s not pleasant. It is, as you write, humiliating and degrading and completely out of step with how patients actually experience pain. I’ve had to go to emergency rooms and jump from doctor to doctor like, well, a drug addict to get relief from daily pain. The things you describe here have led me into screaming matches with pharmacists and even doctors, whom most people would never dream at screaming at.
And I’m a middle-class white girl with a master’s degree and nice shoes. If I have this much trouble getting pain medication, what must it be like for lower-class immigrants or black men or Latinas with GEDs and torn jeans?
I’ve finally found a good doctor who has me on a decent preventive medicine but understands that I still have pain. But it took me a really long time to stop being combative with him, and I almost lost him because of it. I wish I’d had this to show him so that he would have understood why I couldn’t just relax. You explained the last year of my life perfectly here. I can only imagine what it would have meant to me to have seen this when I was in the thick of it (and it’s still a struggle – I still fight with pharmacists and get scared when it seems like I’m making an appointment a little too close to the last one). I wish we could get the post into the hands of every doctor, everyone who knows someone in pain, who knows a doctor who treats people in pain, or who is in pain themselves. In the meantime, thank you for writing it. It means a lot to me, personally.
For what it’s worth, what I’ve seen of that “Dr. training by the DEA” is COPS trying to teach doctors how to do pain management – demanding more urine tests, tighter contracts, requiring them to buy newer, more expensive equipment and then sending duplicate samples to government or private labs to check the office results AND looking over the doctor’s shoulder, second guessing him and making sure he interpreted the results “correctly” – and usually “suggesting” that s/he fire the patient in case of ANY irregularity. But no amount of cooperation is a guarantee a doctor won’t get busted if a supervisor or someone else higher up decides they need a high-profile bust just now.
Ian
Sorry that my “bumpy road ahead” comment seemed so vague. There appear to be many forces at work — none of them favorable. For one thing, biased, poor quality, and negative research continues to be published supporting the premise that more people than ever are misusing or abusing opioids, overdosing, and dying from these “evil drugs.” Second, policy-makers are using this to promote rather Draconian measures to stem the alleged “epidemic” of opioid-related problems: for example, restrictive legislation in Washington State and Florida. Third, the new Opioid-REMS announced by the FDA will stress more education for prescribers and patients on opioid safety, which could be a good thing; however, it seems likely that many practitioners may use this added burden as an excuse to opt out of Rxing opioids for chronic pain completely. These are but a few of the trends that seem to convey an impression that the ill-fated “war on drugs” has shifted to a misdirected “war on opioid analgesics.” Just my observations.
You can’t fight a war against a substance. It’s a war on doctors, and both directly and indirectly through those doctors, on the tens of millions of CPPs. In my 28 years of chronic pain I’ve known too many suicides, some of them really gifted people who happened to have chronic pain. That makes us pariahs, like the lepers long ago. The abuse we take just for trying to survive still astounds me sometimes.
Ian
Oh, no worries, Stewart. I didn’t mean to seem like I was challenging you or anything. I agree the road is (far too) bumpy! I just wanted to know specifically the things to which you were referring to in case – I don’t know – you had some inside info that we don’t. But you’re right on all counts, as far as I know. I haven’t gone very deep into the research, but I’m familiar with the legislative and policy aspects. Apologies if it seemed like I jumped on you. I really just wanted to engage you in a discussion.
The REMS initiative (about which Siobhan speaks more intelligently than I could here: http://pointsadhsblog.wordpress.com/2011/05/03/getting-relief-in-wartime-opioids-pain-management-and-the-war-on-drugs/) really terrifies me. Bringing law enforcement into medical practice in such an explicit way? On the one hand, at least they’re telling us about it this time! On the other, of course, they’re telling us about it in pretty bold handwriting. And that’s scary.
The worst part of it all seems to be that it’s apparently impossible to get anyone to care about people in pain. People in chronic pain are babies or drug seekers or maladjusted. Somehow people who use narcotics to diminish their pain are demonized more than medical marijuana users. I mean, I know why medical marijuana patients have more support behind them than narcotic pain patients do, in part (I don’t in any way mean to question the legitimacy of medical marijuana – I used it myself when it was legal in my home state, and it is a great pain reliever, but it’s not as effective for me as opiates), but I don’t understand why the drug policy reform movement does not seem particularly to care as much about pain relief/pain management advocacy. Many if not most of them do care. That’s not an entirely fair characterization. I know, for instance, that David Borden at http://www.stopthedrugwar.com/ (DRCNet) cares; I used to work for him, and I know it’s one of the issues closest to his heart. I know lawyers at the ACLU’s Drug Law Reform Project who helped Siobhan out during a later stage in her case.
But the money isn’t there for it, the constituency isn’t there for it, and the politicians are not there for it. I don’t know how to make things better for people in chronic pain taking narcotics to relieve it. I really have no ideas.
Hello All,
Stewart, the road doesn’t just look bumpy — it looks down right impassable! I think Ian’s point comes from experience with the way anti-opioid forces work in the U.S. If you attribute the need for the current policies to people who “abuse” opioids, then that gives the forces which are behind this an upper hand they don’t deserve. We know from experience that the “abuse” label is used whenever anyone disagrees with the powers that be in opioid policy. Any patient who disagress with his or her treatment is suddenly an “abuser”.
A simple comparison of opioid use with other potentially hazardous activities shows opioid policy is completely out of step froma risk/benefit perspective. The reasons for the policy can’t have anything to do with “abuse” risk, or with undesirable or tragic outcomes overall. As the author points out, attitudes toward prescribing of the very dangerous NSAIDs are not effected by the tragic outcomes attributable to them. They are easily obtained and are most often what the physicians want to prescribe to avoid opioids.
Clearly, there are very powerful forces at work opposing opioids, and those forces have nothing to do with protecting the public from “abusers” or protecting “abusers” from themselves. If that were the real reasoning, we wouldn’t be able to get many other drugs which are openly available (and equally hazardous), we wouldn’t be able drive (because of the risk of crashes), nor many other things for which equivalent risks are tolerated without concern. The risks associated with opioids are not only intentionally inflated, but the response in terms of risk/benefit doesn’t fit any other model used in our society. The risk of abuse is clearly a worn out scapegoat. There are reasons for the current opioid policy, and that needs research. We all have personal ideas, and many are good ideas, but there is no systematic effort to get to the bottom of who opposes opioids and why. Until we do that, we will find ourselves in a dilemma not unlike guerilla warfare where we don’t know who is shooting at us. That causes wasting of resources and ultimate failure. If those who want to help pain sufferers knew who it is that doesn’t want that to happen, it would not only help in constructing arguments, but might even open up the opportunity for reason and negotiation. I will not outline my theory in detail because I have come to realize everyone has a theory and they are all absent evidence. But I can generally say that I believe the motive is economic. If it is, then there are other ways which those who profit from denial of pain treatment could make their money if we could just educate the public about the problem.
The old PRN blog, while no longer doing advocacy, still has some tremendous resources and a treasure trove of stories. You might take a look at this post:
http://www.painreliefnetwork.org/forum/viewtopic.php?pid=24266#p24266
It might be useful. The only thing that will change what’s happening is to get cops out of the medical field, but good luck. It’s simply too profitable to too many agencies in too many ways for them to let go of it easily. And CPPs are just too poor and damaged.
Ian