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.

9 comments:

Legend said...

Wow!

I have to read that story again...the parallels are so striking!

Since my dealings with pain and the law have been so intertwined, I went through this stage-or at least, wondered why I didn't feel more 'grateful' to those who kept me from drugs. I think I had a glimmer of it, for a while...but, never understood it, until I found the Chronic Pain subculture. Which we are, although few admit it. And, by separating ourselves, so deliberately, from addicts, we simply prolong it.

Again, excellent analogy!

Payne Hertz said...

It's sad sometimes to see the way people in chronic pain buy into the excuse that "addicts" are the reason we have trouble getting our pain treated. Before prohibition,no one, addict or otherwise, had any trouble accessing pain meds, and we did not have an epidemic of drug-related crime or of pain-induced disability, which are entirely the results of the drug war.

Drunk drivers kill 25,000 Americans a year, but you can go to a party in a pair of jeans or in a tux and hoist a beer and no one will give you a second look. Say "I need treatment for my pain" and suddenly you're a criminal.

Anonymous said...

Wow!

This is exactly what I have been dealing with for 10 years. I was almost arrested once at an ER(I had A ruptured disc compressing my spinal chord) I have tried to work but I ma in too much pain. I am always on the verge of tears. The pain is a little more tolerable if I am on my couch all day. If I go out to dinner with friends I fidget and have to leave. People think I am "anxious" or weird. I do not know how much longer I can exist like this. I live in a fairly backwards place.
I feel If I had been correctly diagnosed and treated I would have a job and a life now.

Payne Hertz said...

Anon 2:59

What you say about being diagnosed and treated promptly is definitely true, as the latest theories of chronic pain suggest that is often caused or exacerbated by failure to treat it aggressively from the start. Unfortunately, there is a tremendous amount of ignorance out there still and chronic pain patients routinely meet with a lot of abuse and resistance to treatment from many doctors.

On the issue of the ER calling the cops on you, you should know that unless you were doing something disruptive like yelling or threatening one of the doctors, they have no legal right to call the cops on you just because you asked for pain meds or they "think" you are drug-seeking (not like there's ever any "though" involved in this sort of thing).You might be interested in this article from Our Chronic Pain Mission, particularly this part:

"The US Supreme Court in the Ferguson case indicated that in the absence of a law that requires reports to the police of certain types of incidents, reporting drug issues both violates informed consent requirements and breaches the patient's right to privacy. The physician and hospital that turns over patients who present to the ED for what they believe to be drug seeking purposes can be sued by the patient and win.

If the patient commits a direct crime, such as stealing a prescription pad, it may be reported. The medical or conversational details of a visit where the patient sought medical care -- even under a ficticious name -- for the alleged purpose of getting drugs is not free to be discussed with police. Medical records must be subpoenaed.

While Emergency Department personnel work closely with law enforcement in many ways, disclosure of medical visit details must be specifically authorized law or a specific patient consent that indicates that they know that the information will be turned over to police and consent. This type of consent must not be buried in general consent or it will not be likely to stand up in court."

It sounds like you may have grounds for a lawsuit, and if they labeled you a drug-seeker in your medical records, I would get them for libel as well. You shouldn't have to tolerate this kind of bullshit. More on the Ferguson case here and here.

Ian MacLeod said...

The VA has more power. I've found that no lawyer will have anything to do with a VA case. I've been a CPP for 28 years now. About 3 1/2 or a bit more years ago, the VA head clinician, who had nothing to do with my case, misread a prescription, had THAT med cut off entirely, then took my PCP's authority to treat the CP and lied and blackmailed me into seeing "a Board Certified Chronic Pain Specialist." They told me at the time it was a "consult" but he was actually taking over ALL pain "care". He wasn't a "Board Certified PM Specialist" either; he was an internist, and he'd had a year's experience in an interventional PM clinic. He was also using the new Washington state guidelines, a draft form, as a "standard," though he changed it as he pleased.

At the time my wife was busy dying of COPD. She'd become bed-ridden, and due to budget cuts, I had no help of any kind. The fake PM doc wasn't interested in my home situation (violating the VA's own Directive for CP treatment), tried to force me to come in frequently - 50 miles each way, when there was no one to stay with my wife and she was helpless alone. At the very first appointment he destroyed the regimen that had allowed me to function for eight years (violating the VA Directive and the Medical Standard of Care) and tried to force me onto meds that I knew made me ill or that I didn't trust. (It takes 6 months to a year to adapt to a new regimen that actually works, and most they've tried didn't).

My wife passed away in my arms a year and a half ago or a bit more. There was a hospital in Denver that said they were sure they could help her, but I was never able to get her there; I was too busy trying to survive and care for my wife. She and I had at one point decided on suicide. The house was becoming toxic and I had been crippled. A new doc in town gave me about 1/4 or a little more of what I needed to function, so I was able to cancel those plans and care for her - just not for me, the house or anything else. I still can't find a lawyer who'll go after the VA, which I left. I've been gone from there for 35 months, and just started again, tho another doc outside the VA handles the PM. During that episode I was treated like a convicted criminal; the fake PM doc played dominance games, lied, blackmailed - and I didn't know my rights in the VA at the time. And this is just a few years out of almost three decades of medical abuse. It also cost me 70 lbs off my body weight; I don't know if, at 55 years old, I can recover a lot from that. My wife sure as hell won't.

Ian

Payne Hertz said...

It is sad to note that your story is almost identical to what I went through at the VA. I am deeply sorry for the unbelievable pain and stress they put you and your wife through. They took a tragic situation and made it worse.I cannot begin to imagine how you found the strength to pull through, as such an ordeal would surely have broken me.

In my case the bogus pain specialist was a doctor of pharmacology, who is not legally allowed to practice medicine anywhere outside the VA.

He also wrote a lot of inflammatory, inaccurate and libelous comments in my medical records in a deliberate attempt to sabotage my medical care, which he was successful in doing. This lead to a chain of abuse where many doctors who read the hostile comments of the doctors before them felt it necessary to echo those comments in their own notes, the result being my medical records are a pile of gratuitous personal attacks and pure bullshit.

It is also true that veterans have very little recourse in fighting this kind of abuse. Lawyers are not interested, and the veteran's service agencies are next to useless.

I wish this kind of behavior was confined to the VA. but it is not. The way people with chronic pain are treated in this country would shame the Dark Ages.

Ian MacLeod said...

Payne Hertz:
"...such an ordeal would surely have broken me."

I would have thought the same of myself. She was the love of my life though,; she had saved my life. She fought for me when I had run out of the resources (emotional, physical, everything) I was living no the floor of an old trailer I hurt too much to set up like a living area). She wouldn't fight for herself, but she would for. Fighting for her became my job, and my honor. We were married for thirteen yeas, together almost fifteen, and we never once raised our voices to each other in anger. I actually got my life back, was playing music professionally again, learned about mushrooms and became half the team of "expert" in mushroom poisoning cases - we were volunteer resources for the Poison Control Center).

I could no more have walked away from her than I could have walked away from myself. And it almost did did destroy me. Maybe it did. I don't know how much I can recover at this point. I owe that sadistic, egotistical, lying bastard who made me the proximate cause of her death, though. I'll keep looking for a lawyer with some cojones and maybe a little compassion.

He DID lie a lot in my chart. That kind of thing can't be removed, ever. But I asked to have a list of psych tests and results done at the University Neuropsych Department (which said I WAS in pain, I was well adapted, I take responsibility for managing my pain, don't look to "powerful others," and that I was amazingly stable. I've replaced it four tomes since then; it always seems to get lost somehow. On the other hand, every phone call I've ever made since they slapped a DSB tag on my records (Drug Seeking Behavior), whether it was about drugs or not, is in my DSB file.

I finally came to the conclusion that the VA medical system is there to handle simple, inexpensive cases as much as possible, make an effort at more complex cases, and blow off as many cases as possible as something that only needs a cheap treatment or none at all and keep it up until those patients die off and stop bugging them. They're good at keeping the image up. As for all the lies in my files, Dr. Alex D. did a magnificent medical case summary of 7 years of my records (they lost a year somewhere - it was supposed to be right), and that will one day, I hope, help make a case. I owe a debt.

Take Care!

Ian

Payne Hertz said...

It seems some smart lawyer ought to be able to make something of that "drug seeking behavior" tag. There is no consensus definition of what drug seeking behavior is or how you determine it. I would love to see some doctor up on the stand trying to justify how he determined you were a drug seeker. Among everything else they've put you through, this seems grounds for a libel suit if only you could find a lawyer.

In the meantime you do have the right to appeal that tag and they have to do so within a set time. They are supposed to review those red flags every two years.

Ian MacLeod said...

"In the meantime you do have the right to appeal that tag and they have to do so within a set time. They are supposed to review those red flags every two years."

Before I finally got a PCP who understood pain management, my wife took me in to the VA emergency room because I'd been awake so long (eight days) I was non-functional due to exhaustion. The doctor (after a three hour wait) was angry about being awakened. There are some meds I can't take, others that don't work for me. He asked what I'd been tried out on; I told him. Then he offered me meds ONLY from that list. Finally, he noticed scratches on my forearms and hands from a new kitten, screamed "Needle tracks!" and that was the last we saw of him. There was a lot more trouble that night, but I got nothing except a letter forbidding me the use of the ER for my pain issue and a DSB flag on my chart. I spent a year and a bit fighting it. Went through both Congressmen, the VA hospital director, patient advocates, you name it.

They told me they evaluated the flag every three years. After the last letter insisting that the DSB flag did NOT interfere with my treatment, I got another letter telling me that as soon as I stopped acting like an addict, they'd remove it. They offered no definition of "acting like an addict." That was over a decade ago. After finally having two doctors who PM correctly - during which I was a model patient if you exclude the problems caused by people outside the doctor/patient relationship who interfered - my wife entered her terminal illness, the clinical director forced me to see the fake PM specialist, and things just went to Hell fast.

That "if" is a big one. Any lawyer has to be willing to take the case on contingency, and those are getting few and far between.

Ian