This pain scaled was devised by Dr. J.S. Hochman MD, the founder of the National Foundation for the Treatment of Pain (NFTP). It is far better than the counterintuitive "1 to 10" pain scale as it uses descriptions of the patient's pain and functionality at various levels as well as the predicted efficacy of various meds at those levels. This is important, as perceived pain level is really a function of the physical sensation of pain, its impairment on your functionality, and the relative efficacy of various medications at relieving that pain, as few modalities work as quickly as meds to get pain under control and improve functionality. It overcomes the severe deficiencies of the numeric scale, particularly the bit about 10 pain being "the worst pain you can imagine," as no matter how bad your pain is, you can always imagine it being worse so in theory level 10 pain doesn't exist. This is a loophole that I've seen some doctors cite in ridiculing patients who claim level 10 pain, so being able to say your pain is level 10 because it is unbearable, and not "the worst you can imagine" seems more reasonable and defensible. Studies show that 65 percent of people with chronic pain will not go to a doctor until their pain becomes "unbearable," so defining pain like this also helps to explain the large number of people presenting to the ER claiming level 10 pain, because "unbearable" is how we intuitively think of level 10 pain, and why people will claim levels of 12 or 15 for pain that goes way beyond merely "unbearable," like that of CRPS, for example. I have taken the liberty of creating a PDF of this file so you can print it out and bring it to your doctor if you feel it accurately reflects the realities of your condition. Anyway, enough of my yapping, here's the scale, which I found at Our Chronic Pain Mission:
The NFTP Pain Scale
Pain Scale J.S.Hochman MD 5.14.2003
0 No pain
1. Occasional pain effectively managed by Aspirin, Tylenol, Ibuprofen, one tablet, three times a day or less - or by opioids with no limitations on activities of daily living.
2. Frequent pain, managed only by 1 or more tablets of ASA, acetamenophen, ibuprofen, every four hours - or by opioids with slight impairments of actitivities of daily living.
3. Frequent pain, not effectively managed by NSAIDs, requiring an opioid medication, but not restricting daily activities of living
4. Frequent pain, moderately affecting activities of daily living, but still controlled by opioids medications
5. Frequent or almost constant pain. Contained by opioids, but still causing significant limitations on activities of daily living and occasionally causing the patient to be house or bed confined
6. Constant pain, moderately contained by opioids, but with frequent limitations of activities of daily living. Frequently causes confinement to bed or the house.
7. Constant pain, only partially contained by opioids at the doses prescribed, with continuous limitation of activities of daily living
8. Constant pain, frequently disabling, making most activities of daily living difficult if at all possible
9. Constant pain, uncontained by prescribed medications and doses, completely disabling of activities of daily living, requiring interventions or assistance by others, preventing any form of employment and fully qualifying the patient for Social Security Disability
10. Intolerable pain requiring emergency room treatment, generally with opioids injections.
I recently posted an article about pain contracts here, where I argued that pain contracts are coercive, one-sided and unfair. These contracts are definitely oriented towards protecting the rights of the doctor and allow little in the way of rights or autonomy for the patient. This got me wondering what a patient-oriented pain "contract" would look like, and I came up with a few provisions which I think you'll find interesting. Most of these are eminently reasonable, some are a little tongue-in-cheek, and others could be considered blatantly unfair to doctors, but I have included them anyway as an illustration that despite their obvious unfairness, none is quite so unfair as the provisions we must agree to that may result in our being denied medical care for our pain if we fail to live up to all aspects of the "contract." I am not suggesting that anyone actually attempt to use this contract, as it will most likely result in your being denied medical care, as patients have little power in negotiations with their doctors over pain medication issues. I present this only to generate discussion and to highlight the one-sidedness of the "contracts" we are forced to sign and their inherent unfairness. I welcome any additions you feel should be added to the pain management employment agreement and I will add others as I think of them.
Pain Management Employment Agreement
I _______________________________ (enter doctor's name here), as an employee subcontracted to provide medical services to my employer ________________________________ (enter patient's name here) do hereby agree to provide opiate medications for my employer (hereafter known as "the patient") under the following terms and conditions. As a physician, I recognize that I have a moral and ethical duty to relieve suffering, and that opiate medications play a key role in the management of chronic pain. I agree to prescribe these medications in good faith, without malice or prejudice and in accordance with best medical practices and the best interests of the patient.
1. I will be honest with the patient at all times and not lie, manipulate or deceive the patient in an effort to shirk my responsibilities, or to pressure the patient into agreeing to medical procedures that may or may not be in his or her best interest. I recognize that any attempt at undue influence of the patient may lead to immediate termination of the doctor/patient relationship, and forfeiture of all fees due for my services coupled with any fines or penalties a court of law may impose.
2. I will not place arbitrary limits on the amount of pain medication prescribed based on my fear of regulatory scrutiny or personal "comfort level." I will practice the scientific principle of titration to effect, where the dose of opiate medication is slowly raised until adequate pain relief is achieved or a balance between adequate pain relief and intolerable side effects occurs.
3. I will always endeavor to prescribe medications based on a balance between current scientific knowledge and patient preference. I will, to the extent possible, respect patient autonomy and right to decide what drugs he or she will and will not take and I will not discriminate against the patient solely on the basis of his or her medication preferences.
4. I will respect the human rights and dignity of my patients, and will respect and obey all human rights agreements entered into by my country and all local, state and federal laws protecting the rights and dignity of my patients. I will adhere to The International Covenant on Civil and Political Rights, in particular the following articles:
Article 6: "1. Every human being has the inherent right to life. This right shall be protected by law. No one shall be arbitrarily deprived of his life."
Article 7: "No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. In particular, no one shall be subjected without his free consent to medical or scientific experimentation."
Article 17: "1. No one shall be subjected to arbitrary or unlawful interference with his privacy, family, home or correspondence, nor to unlawful attacks on his honour and reputation."
5. I will submit to routine urinalysis tests to check for the presence of illegal drugs at least once a month and randomly whenever the patient requests it. These tests shall not exceed four per month, and any urinalysis done within one week of the patient's request shall be valid to satisfy the request of another patient for drug screening, and vice versa. The presence of any illegal drug on any routine screening may result in termination of the doctor/patient relationship at the patient's discretion and forfeiture of all fees owed for services rendered.
6. I will fully disclose in writing any legal or illegal drugs I may be on and submit to blood test screening for alcohol or illegal drugs of abuse using gas chromatography immediately prior to any surgery, nerve blocks, trigger point injections or other invasive procedures. The detection of any illegal drug or prescription drug that has not been prescribed by a licensed physician shall be considered prima facie evidence of malpractice, irregardless of whether the procedure is successful or not, and may result in forfeiture of all fees due for services rendered including hospital fees as well as any other fines or penalties a court of law may impose. The detection of any drug not previously disclosed in writing, including legal prescription and non-prescription drugs, shall be considered prima facie evidence of fraud.
7. I will respect the patient's confidentiality, privacy, person, autonomy and human dignity at all times. I recognize that my patient has a zero tolerance policy for physical or verbal abuse, slander, libel or other forms of defamation, and the deliberate infliction of emotional distress, as well as any violation of privacy or patient confidentiality. I will not disclose or discuss any aspect of the patient's medical care or medical condition to any party, including office staff, without specific consent of the patient. This also includes research facilities, data-mining firms, and government agencies not specifically authorized by law to collect this data. My staff will not openly question the patient about billing or other matters in the presence of other patients.
The inclusion in the patient's chart of any derogatory terms such as "drug-seeker," frequent-flyer," "malingerer," "hypersensitive," "hysterical," etc. shall be considered prima facie evidence of libel and the tort of deliberate infliction of emotional distress, and may result in the immediate termination of the doctor/patient relationship at the patient's discretion and forfeiture of all fees due for services rendered, as well as any fines or penalties a court of law may impose. This provision will also apply to the use of "scare quotes" around words such as "pain," "condition" "disability" or any other words or phrases the patients uses to describe his medical condition or state of being. Additionally, the inclusion of any scientific or pseudo-scientific terminology to describe the patient's psychological state or motivations such as "psychogenic pain syndrome," "conversion disorder," "hysteria," "personality disorder," "compensation neurosis," et alia shall be consider prima facie evidence of libel and practicing psychiatry without a license, and may lead to immediate termination of the doctor/patient relationship, and forfeiture of all fees due for services rendered coupled with any fines or penalties a court of law may impose. If the physician feels that the patient might have a psychiatric or substance abuse disorder, he will refer the patient to a competent psychiatrist or addiction specialist of the patient's choosing.
8. In the event of a violation of this agreement leading to termination of the doctor/patient relationship, the doctor will continue to prescribe any opiate medications for a minimum of three months following the date of the termination, and will support the patient in achieving a tapered withdrawal from the drug in question or in attaining the service of a competent physician to continue the patient's care. Failure to adhere to this aspect of the agreement shall be considered prima facie evidence of patient abandonment.
This is the name drug dealers use for the kids who get caught in the line of fire and killed when they are shooting it out with each other. In the lingo of these killers, this dehumanizing term refers to kids who seem to sprout up out of nowhere like mushrooms whenever they are targeting their enemies, getting killed in the crossfire. At one time as many as 150 kids were being killed in shootouts in New York City every year, though of course, adults are often caught in the crossfire as well. These kids are just one of the many groups of victims of America's self-destructive War on Drugs, a war ostensibly being waged to "save the kids" but which has in reality turned America's cities into war zones. But drug dealers aren't the only ones gunning down innocent bystanders. Law enforcement agencies making drug busts and commando-like drug raids have amassed their own impressive record of killing innocent people. Drug War Rant, an anti-prohibition blog, tells some of their tragic stories here.
Our drug war results in staggeringly tragic losses. Drugs, when abused, can be dangerous, but they are not nearly as lethal as the drug war itself.
In addition to the blights of an imprisoned population, lost rights, broken families, and economic waste, people are dying in this war. No, these are not deaths from drugs, but from prohibition.
It is important to realize that the vast majority of deaths on the drug war simply would not happen without prohibition. When drug dealers fight it out over territory and they or their neighbors are killed in the process, it is a sympton of prohibition, much as when we suffered the scourge of alcohol prohibition many years ago. Prohibition makes violence profitable.
When drug users overdose from tainted drugs, it is the result of prohibition. When they die from overdoses because they were afraid to seek help, it is the result of prohibition.
Increasingly, people are dying because of the tactics of the drug war. Military operations are being conducted on our soil, and collateral damage is inevitable.
It is estimated there are over 40,000 anti-drug raids in the US every year, many of them targeting innocent people, and each one carrying the possibility of violent confrontation involving live ammo, with the potential for innocent bystanders to get killed. I wonder if the DEA or other drug warriors have a term for the people that get killed during their raids? "Mushrooms" would be too druggy.
The "Old School" has closed its doors forever. It used to be, back in the day, that even punks and bullies had a code of honor, and if you stood up to the bully, he would take his medicine like a man and that would be the end of it. Nowadays, they come back with their crew and machine-gun your entire family, or if the punk in question happens to be a doctor, he will come back with his crew and try to destroy your medical care by blacklisting you, or publishing your name on the Internet in the hopes that other doctors will deny you treatment, or simply to intimidate you into silence. The days when even enemies could treat each other with honor and respect and there were rules of engagement to be followed are over. Now, it seems, malignant narcissism is the rule of the day, and there is no limit to the depths of sleaziness and cant some people will sink to get revenge against someone for "dissing" them. Drive-by-shooting or medical sabotage, the goal, and the mindset underlying it, are the same.
Case in point: the author of Scalpel and Sword, a patient-bashing site by an "ER doc in Texas," has twice responded to my criticism of his hate-filled articles about chronic pain patients by revealing my real name on his blog and on other blogs. In his latest outing, he has called on ER docs in my area to be on their guard around me, as if I am some dangerous criminal. I don't need to explain to anyone who has been shut out by the "Good Ole Boy" network for speaking out what the effect of this is likely to be. Scalpel has boasted on his website of violating the HIPAA laws by blacklisting patients, and has admitted to making people in pain wait in the ER or denying them treatment altogether for failing to show him proper respect, so this kind of behavior is hardly out of character for him. There is a code of conduct among bloggers where we respect people's anonymity and right to confidentiality, as we often know the names, e-mail addresses and IP addresses of people who visit our blogs, even when they post anonymously. It's abundantly clear that Scalpel has no more respect for this code than he does for the right of his patients to confidentiality under the HIPAA laws, or their right to be treated with dignity and respect. It is a fundamental tenet of medical ethics that a doctor should respect patient confidentiality and should "do no harm" and it is readily apparent that Scalpel, like far too many doctors nowadays, has no respect for these standards. Though I am obviously not Scalpel's patient (thank God for small miracles), one would expect similar conduct from a true doctor even in non-medical contexts. Scalpel obviously disagrees.
Scalpel is also in violation of Google's Terms of Service/Content policy, which states:
PRIVATE AND CONFIDENTIAL INFORMATION: We do not allow the unauthorized publishing of people's private and confidential information, such as credit card numbers, Social Security Numbers, and driver's and other license numbers.
Needless to say, Scalpel has no respect for the policy under which Google generously allows him and other bloggers to express their views for free.
In his latest post, Scalpel is responding to my article entitled "More ER Asshattery" where I address many of the fallacies presented in his article on the numeric 1 to 10 Pain Scale and a related article where he proposes an alternate pain scale. He then responds to my criticism by revealing my real name and accusing me of having a "revenge fantasy" against doctors. I hope you will forgive me for not repeating my real name here or linking to the original article, as I obviously don't want to paint a roadmap to this info, though in fact any narcissistic ER doc with a little downtime in between abusing patients could probably find this info in the same manner Scalpel did:
Courtesy of [my name omitted], a chronic pain sufferer in [my state omitted] who used to be anonymously known as Redhawk but who now blogs under the pseudonym Payne Hertz. I won't link him, but with a little internet sleuthery you can find his whiny blog yourself, if you are so inclined. He thought I was on the wrong track with my pain scales, so he came up with this:
After which he quotes my tongue-in-cheek pain scale and accuses me of a revenge fantasy. While my humor may be a little offensive and over the top to some, it is just that, humor, and not a call to violence against doctors. No unethical, arrogant doctors were harmed in the production of Payne Hertz that I'm aware of, though Scalpel's ego has obviously gotten a good bruising. Interestingly, he posts a "revenge fantasy" of his own, though in fact revenge is no fantasy for him but a real life activity he engages in regularly, as evidenced by his blog and the behavior I am describing here. This is a guy who has boasted of inflicting pain and suffering on his patients and attempting to sabotage their medical care, and he is attempting to do the same to me.
[My name omitted], I would love for you to try that out sometime. But my question for you is, if you are already at a "level 10" from your chronic mystery pain and someone were to hypothetically spray you in the eyes with pepper spray, stab you in the neck with a pencil, or break your elbow by vigorously hyperextending it, would that not bother you at all because you're already maxed out, or would your pain level go up to a 15 or so? Just wondering.
My advice to Scalpel would be to stick to what you know and continue to backstab your patients in the manner you're accustomed to. Direct physical confrontation with your latest victim might not be in your best interest, and you might find out the hard way what level 10 pain feels like.
Interestingly, in a classic case of projection, Scalpel quotes an ER nurse blog complaining of patients with "personality disorders" and how tiresome they can be:
I have seen a couple of people get out of control when they didn't get their narcs. I read an article in emergency medicine magazine that takes about a doctors role in treated chronic pain in the emergency setting. What's fascinating about it is that the author says that 50% of chronic pain sufferers have personality disorders or affective disorders. I can vouch for that. They wear you out, the people who come in for chronic pain because they are people who are neurotic and difficult to work with. Antidepressants have been found to be very helpful in these people, along with psychological help. They seldom get it.
It has been my personal experience reading and hearing hundreds of stories from abused chronic pain patients that those doctors who are most willing to play amateur psychologist by branding their patients with the "personality disorder" label are the ones most likely to be suffering from severe personality disorders themselves. After all, what kind of personality does it take to blacklist a patient and willfully sabotage his or her medical care because you perceived him to be manipulative or disrespectful to you, or to leave another human being writhing in agony by refusing to treat his pain? Or for that matter, to violate a blogger's right to blog anonymously? Maybe it's this kind of personality:
Their lack of self respect is even more damning. Because of it, nothing is beneath them. No lie is too mean to tell. No trick is too lowdown, dirty, and rotten to play. Things you or I couldn't stoop to, because sinking to that level would make us feel like we are wallowing naked on our bellies in sewage, narcissists glory in like mud-wallowing hogs. Ironic, isn't it? that such deep, unbearable shame makes one shameless? But it does.
...This is why every malignant narcissist has two middle names: one is "Abuser" and the other is "Slanderer."
Scalpel certainly fits the bill on all counts, particularly as abuser and slanderer and willing to low crawl where most people wouldn't dare to go, all because his ego got bruised.
Here is where Scalpel plunges the knife:
Indeed. If anyone reading this happens to work in an Emergency Department in [state omitted] and is unfortunate enough to come across this gentleman....you might want to guard your nuts.
This is an unequivocal attempt by Scalpel to libel me and sabotage my medical care, and an attempt to intimidate me into silence. I can promise you, it will have the opposite effect. It is sad that a doctor with a so-called code of ethics would feel the need to sink to this level, but this kind of thing happens all the time. If it weren't for the high prevalence of ruthless, amoral and egotistical doctors like Scalpel, Payne Hertz wouldn't exist. While I have no intention of sinking to his level by revealing his real name, location or place of employment, Scalpel might do well to heed the warning some other people have made to him about karma, because he's got a lot to lose if his real identity was ever revealed, and he most definitely has it coming to him. The next person he screws over might be a hacker looking for some payback.
Another blog entry from my good friend Scalpel, this time attacking some woman with a migraine for claiming her pain is a 10, showing no obvious signs of distress, claiming allergies to drugs and also knowing what worked for her the last time she came to the ER (which can only mean one thing: DRUG SEEKER) and he contrasts that with an old woman who has broken her hip, but only reports level 5 pain, and posits this as evidence that the 1 to 10 scale is useless. While I would tend to agree that the 1 to 10 scale is problematic, particularly as it defines a 10 as the "worst pain you can imagine," the major problem with using pain rating scales is that they don't address the real reason patients have difficulty communicating their pain: physician ignorance, arrogance and the cold-blooded, hard-headed refusal by far too many physicians to acknowledge their patients' suffering and accept it as real. No pain rating system, especially not a subjective and counterintuitive one like the 1 to 10 scale, is ever going to change that mindset. Even if a 100 percent accurate dolorometer would be invented that precisely measured pain and there were guidelines in place requiring pain of "x" level or above be treated aggressively, there would still be enormous animus, hostility and dismissal by doctors like this and the technology would be questioned no matter how sound the science behind it. In either case, pain would still be a subjective experience, as a given amount of pain stimulus can effect the same person different ways at different times, depending on mood, energy level, psychological state and willingness to endure the a pain. What is a "9" one day can be a "7" the next. For an excellent and animus-free critique of the 1 to 10 scale, which I may elaborate on later, see here.
Now I am not picking on Scalpel. Despite his obviously nasty attitude towards his patients he is hardly the most extreme example of the kind of doctors we have to deal with, and at least he acknowledges in principle if not in practice (we have only his word for it) that pain management is necessary and desirable. In fact I'd say he's better than average in that regard, as the majority of doctors will not treat pain at all, let alone aggressively with strong narcotics. I have no idea what he is like in real life but judging from the venom he spews on his site and his proven lack of ethics (he violated my right to blog anonymously by revealing my real name on another blog in retaliation for posting something he didn't like, and has boasted of violating the HIPAA laws and medical ethics by blacklisting his patients), I doubt he is really as willing to treat pain as he claims.
In either case, I think it is important to point out the flaws in his reasoning, which sadly will not be obvious to many doctors but are blatantly obvious to anyone who has lived with severe pain for any length of time. I'd like to point out some of the myths in this piece using the excellent guidelines from the UMHS Pain Management Program and then add some observations of my own:
1) Myth: A patient’s pain perception can accurately be correlated with vital sign changes and evidence of injury.
Clearly, many doctors like Scalpel assume that if a patient's blood pressure or other tests are normal and they show no signs of injury, they couldn't possibly be in severe pain. I know from personal experience this is not the case, and my blood pressure level is more dependent on what position I'm in (standing, sitting or laying down) then my pain level, which doesn't effect it at all.
The transition to chronic pain is marked by changes in both physiological and psychological responses. Instead of trying to escape the painful situation, the patient is now trying to adapt to ongoing pain.
The neuroendocrine stress response is typically exhausted in chronic pain states, and catecholamine induced changes are now absent. Vegetative responses predominate, including sleep disorders, irritability, depression, and decreased motor activity. Patients often appear subdued, sleepy or sad in appearance.
In other words, chronic pain patients are less likely to show obvious signs of distress or show elevated blood pressure, cortisol or other stress-related changes even when they are in severe pain. They are physically and psychologically burned out.
2). Myth: Patients in pain readily express their pain to health care providers.
Some patients are very stoic or they avoid openly expressing their pain for fear of being accused of exaggerating it, which is very common. In fact while Scalpel is criticizing his migraineur for showing no pain one of his respondents is criticizing another patient for screaming. You just can't win. If many people are reporting their pain as a 10, perhaps it's because people with level 10 pain are more likely to go to the ER.
3). Myth: Patients experiencing chronic pain over-report pain because they are addicted to opioids.
He's clearly implying his migraine patient is doing this.
4). Myth: Older patients, and cognitively impaired patients do not perceive pain as intensely as other patients.
It is quite possible that old woman's pain really was a 5, or maybe she was in too much pain to understand the scale and what was being asked of her. If you suspect a patient is underreporting pain, perhaps further discussion is warranted.
5). Myth: If a patient is able to sleep, they must not be in very much pain.
This myth is surprisingly common, even though common sense should tell you how stupid it is. I doubt even the most jaded doctor can deny that there are a lot of people out there in severe pain. Do you really think we never sleep? No matter how much pain you are in, you will eventually fall asleep, as it is near impossible for a human being to stay awake forever. Severe pain does make sleep difficult and many people with pain suffer from chronic sleep deprivation, but falling sleep is not impossible, particularly after the administration of IV narcotics which are heavily sedating.
Another related common sense-defying myth is that people in severe pain can't eat, and if a person is observed in the ER munching the proverbial bag of Cheetohs, they can't possibly be a 10. This one is also obviously false, as if severe pain rendered you incapable of eating, most people with severe pain would die of starvation within a month or so. Torture victims would succumb even sooner. As UMHS points out:
It is very important to know and recognize the patient’s physiological, psychological, and emotional responses to pain when developing a pain management plan. Without addressing these important issues, it is often difficult to develop an adequate pain treatment plan.
Changes in vital signs do not occur with all patients who are experiencing severe pain. Do not rely on vital signs to determine the severity of a patient’s pain.
Patients with pain, even severe pain, can be distracted from thinking about their pain, and may even be able to sleep. Don’t trust that a patient isn’t having pain because he "looks comfortable." Always ask, and believe the patient’s assessment of his own pain.
Scalpel then goes on to propose yet another pain scale where he, in his godlike omniscience, gets to assign the number and rate the patient's pain because after all, he obviously knows better than his patient.
This has led me to create my own pain scale, one which uses very objective criteria and which has the advantage of firmly establishing an objective, empirical baseline in the doctor's mind from which he can better understand and rate his patient's pain as well as measure its impact on the patient's life. Unfortunately, this scale only works with male doctors.
To use my scale, first grasp the doctor firmly by the lapels. Now, while simultaneously releasing a loud "Ki-Ai!" Karate shout, bring your knee vigorously into your doctor's testicles. While the doctor is on the ground writhing in agony and trying to catch his breath, explain to him "That's what level 10 feels like." After giving him a minute or so to regain his composure, kick him in the shins, telling him "that's what level 7 feels like." Now spin him around and give him a firm boot in the ass, and say "that's level five." Follow this up with a couple of slaps in the mouth, which will rate a "3." When you are done establishing these objective pain-rating baselines, bend over and give him a gentle pat on the back and say "that's level one."
Now rate your own pain accordingly. If more patients would strive to educate their doctors in this manner, using objective, empirical criteria, I suspect the number of arrogant doctors willing to ever question a patient's pain again will diminish considerably.
If you've ever wondered why you were treated like a criminal, whiner or a lump of meat when you walked into your local ER complaining of pain, here's another ER doctor to enlighten you with her wit and wisdom. Like most medical folklorists, her "truisms" amount to little more than personal prejudices based on anecdotal evidence that have already been refuted by science and are not even particularly logical, but are nonetheless shared by far too many medical professionals who have a perverse need to feel superior to their patients or to rationalize callous and unethical behavior by themselves or their colleagues. But regardless of whether they are scientific, logical or even ethical, these beliefs can and do influence the care that patients can expect to receive from their doctors, and are routinely used to pigeonhole patients into categories for easy disposal. What should be an attempt by every doctor to treat each person as an individual and with dignity and respect, and to use medical science to tailor the treatment to each individual's needs, very often devolves into a kind of depraved personality contest where you are obligated to please your doctor in return for treatment, like a peasant seeking favor from a king. This kind of dehumanizing, judgmental mentality tends to arise almost of necessity in any for-profit system in which human beings are little more than cash cows to be thoroughly milked and then put out to pasture as quickly as possible. Allowing beliefs like this to influence the medical care a patient receives is grossly unethical and ignorant, but it is the rule rather than the exception for people with chronic pain to experience abuse and denial of care based on self-serving and unscientific beliefs just like these.
I have included my own responses to each of her "truisms" but some of the comments on the original article are pretty interesting as well. Of note are the responses from doctors and nurses that express their approval of these callous and bigoted stereotypes, and then turn around and accuse the people who objected to these stereotypes of being "offensive" and unsympathetic to doctors and nurses! Narcissism in action. I'm sure I'll be accused of "anti-practitioner bias" which is the boilerplate rebuttal to all critics of the medical system and physician ignorance.
1. Really sick people usually don't have many complaints. They are too sick to. Whether because of illness or trauma, people with life-and-death kinds of problems usually don't complain much. They are either unconscious or all their energy is focused on staying alive.
Translation: if you are able to talk, that chest pain you are experiencing is nothing to be concerned about, because if it was something serious, you'd be speechless. If you really had appendicitis, you wouldn't be able to complain about it. Ditto for cancer, AIDs, malaria, bubonic plague and every other "major" illness: if you can bitch about it, you're okay.
This is apparently what they teach doctors in the "best medical system in the world."
2. The converse is also true: people who aren’t very sick but think they are often complain a lot. While I try to remain caring about whatever problem is important to each patient, often the first sign that a patient is more-well-than-sick is that they have the energy to complain articulately or profusely about what troubles them.
See response to #1
3. A corollary to items 1 and 2: at any given time, the most demanding patients (and patient families) are usually the least sick patients in the ER. As noted above, they have energy to be demanding.
People who don't make some attempt to communicate what's wrong with them receive no medical care. It is interesting to note my friend was married to an ER doc who reported the exact opposite: that people who complain the most or make the most noise are seen right away, if only to shut them up, while people who play the "good patient" and remain silent and stoic, get to die alone in the waiting room.
4. Once again, the converse is also true: the least demanding patients (and their families) are usually the most sick.
And probably the most likely to die in the ER due to being ignored.
5. The tougher someone’s persona is in the outside world, the more they are likely fall apart over minor trauma or simple ailments. Gang-bangers who were just arrested for trying to shoot someone cry for their mothers when they learn they have to get a tetanus shot; Harley-Davidson riding, leather-wearing, tobacco-spitting, hard-drinking bikers who take minor falls, swear and whine and complain and say over-and-over again “how much is it going to hurt?” when they learn they have to get stitches.
This holds true for doctors, as well. The more macho, arrogant and dismissive a doctor is about something as horrific, stressful and life-altering as years of unremitting chronic pain, the more likely he/she is to have low tolerance for trivial matters like whether some biker can take the pain of a needle or not. If doctors get upset over trivial things like this, you, as a chronic pain patient, know exactly how long they would last if they ever had to experience the mind-numbing stress of being in constant pain.
6. People who say they are not sick, usually are. A variation of truism #1, many people who are genuinely sick but do not want to be ill deny pain or problems. These are usually hard-working individuals who want to get out of the hospital and go on with their lives. I have seen men argue that they were not having heart attacks even as they clutched their chests and were wheeled off to the cardiac catheterization lab. Others argue that their new left-sided facial weakness and inability to walk is not that big of a deal and cannot possibly be caused by a stroke.
Translation: denial is a positive characteristic in patients. If you're not in denial, you're not really sick. A corollary to this is you admit you're an alcoholic or a drug seeker, you're not. If you deny it, you are. If you have chronic pain, you are whether you deny it or not.
7. A surprisingly large number of people with tattoos are afraid of needles.
Or maybe there's just a surprisingly large number of people with needle phobia who get tattoos.
8. People who state they have allergies to non-narcotic pain medications are usually drug-seeking. The list of allergies they provide is a not-so-subtle way to attempt to get the health-care provider to give them the narcotic pain medicine of their choice.
Do patients have to hide their adverse drug reactions to avoid being labeled a drug-seeker? Apparently so with those doctors who would rather see a patient writhe in agony or die from a bad drug reaction than risk giving a "junkie" a free high. Since knowing what works and asking for it by name will also get you branded as a drug seeker, patients may of necessity due to doctor ignorance and bigotry have to develop roundabout ways of trying to ask for what they know they need. Motrin is not a panacea.
Beyond this, it is incredibly ignorant and dangerous to dismiss reports of adverse reactions (or "allergies") to drugs, as non-error adverse drug reactions kill over 100,000 Americans and land 1.5 million more in the hospital every year, and these are only the extreme reactions, the severe but not life threatening reactions account for tens of millions more, and the moderate but unpleasant enough to make a reasonable person discontinue the meds millions more still. It is little wonder so many people are dying every year when doctors either dismiss complaints of adverse reactions out of hand, deny them, or accuse anyone reporting them of being drug seekers.
9. People who claim they have a “high pain tolerance” usually don’t. Individuals who can genuinely tolerate large amounts of pain have never had to consider pain enough to conclude that they have high pain tolerances–and hence, would never need to make this claim. On the other hand, people who who are so exquisitely sensitive to pain that they notice it in all of its subtle variations–and seek relief for the most annoying of these–are usually the ones to make this claim.
More annoying still are ignorant physicians who don't know the difference between "pain threshold" and "pain tolerance," have no objective way of telling how much pain a particular person is in but are deluded into thinking they know better than the patient does, and are full of judgement and condemnation of anyone who doesn't meet the arbitrary and frivolous criteria they use to judge whether someone is "worthy" of pain relief or not. Doctors who use terms like "exquisitely sensitive" to describe their patient's pain reactions are pretty damned annoying as well. Actually, they are more than damned annoying.
The term pain threshold refers to the minimum intensity or duration of a sensory stimulus at which it becomes interpreted as painful. In scientific literature the term is clearly differentiated from the term pain tolerance. Pain threshold is the minimum stimulus which elicits pain and involves measurement of stimulus intensity, whereas pain tolerance is the degree of pain which a subject can tolerate, and involves a measurement of a subject's response to pain.
Pain tolerance is the amount of pain that a person can withstand before breaking down emotionally and/or physically.
Pain tolerance is distinct from a pain threshold. The minimum stimulus necessary to produce pain is the pain threshold. One's pain tolerance is the level of pain needed to force a person to 'give up'.
So pain threshold refers to the amount of stimulus needed to elicit pain in a given person, and pain tolerance refers to the ability to "take the pain." Studies have shown that women have a lower pain threshold than men do, yet they also have a higher pain tolerance. So an average woman will both feel pain sooner yet be able to take that pain better than the average man. There are conditions, most notably fibromyalgia, that can radically increase one's pain threshold to where even mild stimulus can be extremely painful. Allodynia is common with other neurological disorders as well, and is a reflection of problems with the nervous system, and not a character defect. The fact that a person is ultra-sensitive to pain does not mean they are wimps who can't take pain. If anything, they fact that they are often able to bear pain that is for them more severe than a normal person would experience suggests the opposite.
Most of us with chronic pain and any degree of humility can readily admit there are limits to just how much pain we can take, because we have learned this fact the hard way. Those still exhibiting the adolescent macho posturing most of us left behind at age 15 either haven't experienced real pain or have pain that is relatively mild, or they're still trapped in that mindset. Then there are of course those who do have very severe pain but like to play the good patient and put on an "I can take the pain" performance to please their doctors, who are in fact expecting exactly just such a performance from their patients when they should be encouraging an honest and thorough reporting of all symptoms, particularly pain. If you wish to torture yourself to please your doctors, knock yourself out. Most of us who have experienced real pain know just how stupid and self-defeating that is, because while you may get a pat on your back from your doctor, you will not get the treatment you need, and it could cost you your life. If your doctor insists you "suffer in silence," find another doctor.
In either case, it is not a competition to see who is the toughest, and a doctor's only concern should be to alleviate the patient's suffering, regardless of individual pain threshold or tolerance. That so many doctors feel the need to minimize their patients suffering or to mock and ridicule them when they can't handle pain says more about their character than it does about their patients'.
10. Even the most well-intentioned ER physicians fall prey to dealing with patients according to categories and stereotypes from time to time.
Do tell, although I fail to detect anything that could be construed as "well-intentioned" from this article.
Let me state the obvious: Life in chronic pain is hell. However, it can be made worse.
To increase bitter taste in mouth, add as many as possible uncaring, ill-informed family members and so-called friends. Over time, the number of friends will quickly decrease and there is also a good chance spouse will evaporate as temperatures rise (unfortunately, children will follow spouse since they do not mix will with uncontrolled, chronic pain).
Limit sleep to as few hours as possible per night which will result in increased irritability. In addition to chronic pain itself, add an unhealthy dollop of insomnia, restless leg sydrome and/or inoperable sleep apnea. If sleep apnea is added, recommend mixing liberally with chronic sinusitis/rhinitis to prevent possible treatment.
At the mention of treatment, be sure that no successful surgery (highly unlikely) or pain relief (equally unlikely) is provided!
It should be relatively easy to find a good mix of uneducated, DEA- petrified doctors of all sorts to add to this recipe. Suggestions include general practitioners, physiatrists, pain "management" doctors, physical therapists, neurologists, neurosurgeons and any others to taste. Simmer in pool of aquatherapy until extreme exhaustion sets in.
Chill then serve immediately under six feet of daisies or heat to 1600-1800 F then serve with garnish as desired.
In Franz Kafka's novel, The Trial, the protagonist is a bank clerk named Joseph K who one day awakens to find himself arrested and accused of an unspecified crime. Although he is technically "under arrest" he is free to go on with his normal life while the trial proceeds. Though he never finds out the nature of the crime he is accused of, he nonetheless tries to defend his innocence, which only results in the case against him being made stronger. As he is subjected to one absurdity after another, he becomes increasingly angry and obsessed with the proceedings against him, and denounces them in an appearance before the court, which he is convinced exists solely to bring false accusations against innocent men. In the end, he finally acquiesces to his fate, and leads two policemen to his place of execution where he is stabbed in the heart and murdered "like a dog."
In many ways, the fate of far too many people with chronic pain in 21st Century America mirrors that of Joseph K, as we too often find ourselves trapped in a "Kafkaesque" nightmare where we have a lifetime sentence of torture hanging over our heads in a system where we are guilty until proven innocent, and we are subjected to a set of arbitrary and absurd rules, created by others, that are never truly explained to us, yet we are nonetheless considered to be guilty and therefore deserving of our fate, regardless of whether we truly violated those rules or not. We are simply presumed to have violated them. We may feel compelled to protest our innocence, but being innocent begs the question "innocent of what?", which is a question we can't really answer, because we are never told what we've allegedly done wrong. Like Kafka's overarching court in The Trial, the medical system which serves as your judge, jury, executioner and court stenographer regards any attempts by you to prove your innocence as evidence that you’re in fact guilty as charged.
If you are familiar with the tactics of Joseph K's interrogators in The Trial, this surreal but real-life exchange between a nurse and a chronic pain patient (also a nurse) will seem eerily similar to you:
She said she was very sorry for my discomfort but that i couldnt have any morphine. I was surprised by her words and i responded that i didnt want any, that i was admitted because I wanted to discontinue the morphine. She said, I know but you still cant have any. I said, I didnt ask for any. She said, You see how agitated you become when i deny you morphine? I said, you cant deny me what i havn't requested. She said, You are behaving very aggressively now, did you hear your voice rise? I said, this sounds like a comic strip to me, I do not want any morphine. She wrote in her notes "Aggressive when denied morphine" When i saw the pain team, i relayed the entire conversation to them and they changed the notes. Although i appreciate this nurse must have some personality issues, it remains both a comic strip and a warning in my mind.
Throughout his ordeal, Joseph K meets various people who are associated with the court in various way, not just lawyers and judges, but a priest, a court painter, and even a group of young girls who the painter explains are controlled by the court, as the court controls everything. The painter explains the various types of acquittal possible, which are an absolute acquittal, an apparent acquittal, and a deferment. He points out that no one in his experience has ever gotten an absolute acquittal, but an apparent acquittal is possible. This involves the court removing the indictment against a particular person, but allowing the charges to hang over his head, so that at any time a judge can bring the charges against the defendant again and the trial begins anew. This is why the acquittal is only "apparent," as it is not a real acquittal. The best bet Joseph has is to get a deferment, which involves tying the case up in the lower court for years so that a verdict is never rendered, but this involves being in continuous contact with the court, staying closely involved with the case, and making regular appointments with the judges, who he has to try and keep on his side.
Many people with chronic pain are naive about the way our system works. They assume because they are not drug addicts, or malingerers, or looking to sell their drugs, that they are presumed innocent because they are in fact innocent. They assume that if they are receiving pain treatment, than this is an absolute vote of confidence from the medical profession, similar to the "absolute acquittal" described by the painter in Kafka's story, where they are to be judged as "worthy" of pain relief from then on. Nothing could be further from the truth. From the moment a chronic pain patient walks into his doctor's office, "the trial" begins, and it is a trial in which he is presumed guilty until he can in fact establish his innocence. Even so, there is rarely an absolute acquittal, and even if you can manage to get a temporary reprieve and get your pain treated, "the trial" can resume at any time, and you can easily find yourself facing false charges, just as the painter explains can happen to Joseph K. However, those charges will rarely be spelled out to you so that you may respond to them specifically. Instead, you are likely to hear little more than that your doctor is no longer "comfortable" with prescribing your meds.
So in our lovely medical system, as in Kafka's nightmare world, the best you can hope for is a deferment of your sentence, to stay continuously engaged with the system, meeting regularly with your doctors and doing everything they say, always endeavoring to keep them on your side, simply trying to postpone or defer the possibility that a final verdict of "guilty!" will be decided and a sentence of torture be enforced against you by cutting you off from the medication you need.
In one part of The Trial the priest recites to Joseph K. a parable called "Before the Law." It is too lengthy to repeat here, but this reading by Orson Welles from his film version of The Trial should get you thinking about the kinds of "doorkeepers" we as cp'ers have to deal with:
Like the man in this story, we too are seeking admittance, though in our case, it is not to the law, but to pain relief. There are many doorkeepers we have to face to gain admittance, the first of which is our doctor. Like the doorkeeper here, we cannot enter in the face of his veto...or can we? He is also very powerful, but he is only one of many doorkeepers, all of whom are more powerful than him. These include society as a whole, the police, the legal system, and the doorkeeper that is so terrible, even your doctor can't bear to look at him: The DEA. We think if we bribe our doorkeeper with narcissistic supply, or if we just play the game and go through all the treatments he recommends so he can get his kickbacks and earn his money, he will finally let us in. Sometimes he does, sometimes he doesn't, but he always takes our gifts. We may be tempted to beg the nurses and even the receptionist to plead our case before the doorkeeper, as the man in the story begs the fleas on the guard's collar to do so. We also think that pain relief should be accessible to anyone, except those "scumbag junkies" we have all been brainwashed into despising, of course. What we fail to realize, like the man in this story, is that the door was never meant to keep those "scumbag junkies" out, it was meant for us all along.
This system was not set up to keep addicts from getting their hands on narcotics, it was set up to keep you from gaining easy access to cheap, readily available medications to treat your pain. In doing this, it empowers and enriches those who supply the medications we need, but also those who have been appointed doorkeepers over the supply, which keeps them motivated to continue to serve this role. Without the doorkeepers, there is no real profit to be had in supplying pain medicine, as it is cheap as dirt to produce and would sell just as cheaply in the absence of a system to artificially inflate its price through monopoly pricing. It is the destructive result of rent-seeking behavior by the medical profession and pharmaceutical companies.
There are many rules that govern who does and does not gain admittance, but the problem is that these rules are never explained to us, other than the obvious ones like you can't legally buy pain meds on the streets. Kafka wrote an essay called "The Problem of our Laws," that addresses this very dilemma:
Our laws are not generally known; they are kept secret by the small group of nobles who rule us. We are convinced that these ancient laws are scrupulously administered; nevertheless, it is an extremely painful thing to be ruled by laws that one does not know....for the laws were made to the advantage of the nobles from the very beginning, they themselves stand above the laws, and that seems to be why the laws were entrusted exclusively into their hands. Of course, there is wisdom in that--who doubts the wisdom of the ancient laws?--but also hardship for us; probably that is unavoidable.
We can never say for certain why a particular doctor might treat one patient and not another, as each has his own criteria, which are often completely arbitrary. If before entering your doctor's office a strong wind frequently messes up your hair, giving you a disheveled appearance, your doctor might decide to refuse treatment on this basis, as people with a disheveled appearance are perceived to be drug-seekers. But it might not make the least difference to another doctor. It shouldn't make a difference to anybody, but arbitrary criteria based on nothing but medical folklore, personal bias and whatever whim the doctor has that day will be the deciding factors in whether you get treated or not, so you should learn at least some of the rules that they will never tell you. What can be said with utter certainty, is that these rules were set up by the nobility that rules over us like feudal lords, and there are those who cannot bring themselves to question the "wisdom" of this ancient system.
At the end of The Trial, Joseph K leads his executioners to a stone quarry, and turns up his neck while they stab him through the heart, totally cooperating with the process, and dying "like a dog," which are his last words. I can't say how many times I have seen this behavior in people with chronic pain whose lives have been destroyed by this system. They will defend to their last breath the very doctors who denied them treatment and blame themselves or other people with chronic pain for the fact they can't get their pain treated, as if it's the fault of anybody but the black-hearted barbarians who stand in the way of the right of an individual to be free of pain. We are not dogs, we are human beings, even if dogs are often treated with more dignity and compassion than we are. We should demand the right to be treated with dignity and respect, and to be masters of our own fate, rather than wait for someone to hand it to us. If The Trial has anything to teach those of us who suffer from chronic pain, it's that we should not "go gentle into that good night," turn up our necks and wait for the dagger, but should join together to resist this monstrous and Kafkaesque system. Until we do, "the trial" will continue.
While this site was set up to challenge the ignorant, hostile and judgemental attitudes so many in the medical profession have towards people in pain, and to document just how destructive these attitudes really are, it is very refreshing to note that there are at least some doctors and nurses out there who "get it" and take a logical, ethical and humane approach to people claiming pain, even when they suspect those people may be "drug-seekers."
In this thread on allnurses.com, a new nurse asks the question "drug-seeking or real pain? How do you tell?" and while some of the answers display the usual hostile attitudes, many of the others are very enlightened and show that there are at least some people in the medical system who think critically and take their ethical obligation to relieve pain seriously. You might particularly note the responses by "Dave ARNP," "Fgr8out," and "cmo421." Here are some highlights from this thread:
Now, as far as being able to tell if someone is in pain, or seeking. It is almost impossible. Have I medicated a seeker? I'm sure. I think anyone who has been a nurse, or MD/NP more than an hour has. It is very hard to make that call. Even if you DO decide they are seeking. Do you really KNOW? I don't think so. I've had my doubts about a few patients in my time, but when I begin to venture down that road, I remember how long my mother suffered before finding someone who would adquately treat her pain. Several docs she saw, just labled her as a seeker. Would I want to chance labling somone just like her? Nope. Every patient that I see is treated to the best of my ability. If nothing we can do will get their pain under control, then I will find someone who I think can.
Someday, Nursing will accept that pain is whatever the individual experiencing pain says it is. Why do we persist in this need to control an issue that is out of our hands, namely a patient's report of pain? There is no way to measure pain through biomechanical means, no magic machine that pinpoints the exact site or severity of pain. Pain is completely subjective, yet there are those in Nursing who simply can't or won't accept the fact that we don't have the ability to say "Yes, here is proof you have or haven't pain" with any reliability.
People in pain may or may not display behaviors that we consider indicative of "being in pain." Coping mechanisms such as distraction or avoidance, may often mask a person's true pain level. I believe that if health care professionals expect someone in pain to act a certain way, some patient's learn to adopt those very behaviors. They become concerned that if they don't "look" as if they are having pain, their report of pain won't be believed and they won't receive the proper pain management. What exactly does that say about our practice?
If a patient says they are having pain...they are having pain. It doesn't matter if they are 'drug seeking' or not. My belief is they are in pain because if they weren't they would not be seeking drugs to "numb the pain" they feel whether that pain be physical or emotional pain. Pain is more than physical. It's emotional, mental...unseen physical findings....so treat the person and leave the judgement to God.
Ok, I have to weigh in here. You are walking a fine line when you start to label pts as "drug seekers" Granted, they are out there. Because a person asks what medication they will be receiving does not imply they are a drug seeker. Some pts know what works for their pain. Moreover, some people are allergic to NSAIDs or they are intolerant of these meds. They may be allergic to sulfa nad were told to avoid NSAIDs because of possible cross allergy.
Well, like so many have already written here, we are certainly taught that if the patient says they are in pain, they are in pain. Personally, I like that idea for a number of reasons. If they are, and I "guess" wrong, I will have been instrumental in continuing someone's discomfort. I don't like that.
Very interesting topic. As someone who lives in chronic pain and happens to be a nurse and a student, I find it educational to hear what others have to say about whether or not they think somebody is in real pain or drug seeking. Unfortunately, I have dealt with many physicians and nurses who have made it very difficult for me. When somebody puts down in ones chart, "drug-seeking".........."drug-seeking behavior" etc.......I wonder if they know what they are doing to that patient.
I have been in both positions I have pancreatitis which causes me a great deal of pain and I am also Dr Rx addicted to oxycontin. So when I have had an attack I never got the pain relief I needed because I was labled "Drug Seeking" When you go to an ER and a Doctor tells you he will not medicate you because everytime I was seen in his ER it was for a painful condition and he also said I had used two different names with my correct info. One why would I go to an ER unless I was in pain. Two I had gotten married hence the two names. To top it off one year later I had a attack the Same ER different doctor said the same exact thing word for word. Now I am on MMT I could not get pain medication if I was dying. It is wrong but I am glad to see that many of you opt for treating anyones pain. Because people do not always Dr shop because they are addicted sometimes because of idiots like the ER doc that will not medicate or under medicate.
It is good to see that there are at least a few medical professionals out there with intelligent, thoughtful and humane attitudes towards people in pain, as opposed to the usual malignant herd-think that is so prevalent in medicine today. If I were a doctor or nurse, I would like to think I would have the moral courage and integrity that these nurses display, and would always err on the side of treating pain. Since it is the ethical duty of a physician to relieve suffering, I would prefer to always believe any patient's report of pain, including his subjective report of its severity, even if that meant I would occasionally give a drug addict a free high. After all, the drug addict is also suffering, and by supplying him with a narcotic drug, I have relieved his suffering for that night, so from an ethical standpoint, there is nothing wrong with this. The alternative is to risk denying treatment to someone in pain who desperately needs it, and that possibility is so barbaric I could never bring myself to go that route unless I was utterly convinced it was in the best interest of my patient to do so. But be sure to assemble your team of angels first if you wish to convince me of that.
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.
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.
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: http://www.mbp.state.md.us/pages/video.html
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.
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.
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.
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 this...so 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 more...it'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 kudos...it'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.
Payne Hertz is a chronic pain advocacy site whose mission is to educate the public about the abuse and maltreatment of people with chronic pain, and to advocate for civilized and humane treatment based on our highest conceptions of individual liberty, human rights, and morality.
