Tuesday, October 30, 2007

The Demise of Medical Ethics and the Old School

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.

More ER Asshattery

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.

Sunday, October 14, 2007

More ER "Wisdom"

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.

Ten ironies and truisms of the ER

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.

Saturday, October 13, 2007

Recipe for Life in Hell

This article was originally posted in alt.support.chronic-pain by "KC."


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.

Saturday, October 6, 2007

Chronic Pain and The Trial: Kafka's Nightmare Becomes Reality

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.

Thursday, October 4, 2007

Finally, Some Enlightened Attitudes!

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.