Re: Ethical Management of Pain in the Real World
Do They Deserve Drugs?

Response from Health Care Professional and Chronic Pain Patient
Caution: Long & Politically incorrect

Good presentation, except for one glaring problem: Do physicians routinely ask their cardiac patients, diabetics, or for that matter psychiatric patients (who often go out of hospitals with scripts for large amounts of anti-anxiety agents with a high street value) to sign an "agreement" with them giving up their CONSTITUTIONAL RIGHTS? Might I point out that there is a demand on the street for syringes as well? Perhaps diabetics should have to sign away their constitutional rights in order to be treated, as they just might allow one of their syringes to get into the hands of a heroin addict who will use it to inject an overdose. What if Grandma forgets to lock up her syringes and grandkid that spends alot of time on the street takes one, or two out of the package and sells them on the street? Oh, sorry, I forgot, it is the not the criminal grandkid's fault, it is Grandma's fault, or better yet, her physicians fault if an addict uses that syringe to inject an overdose because the physician didn't make Grandma sign a "syringe contract" and agree to take a polygraph whenever requested so she can prove that she is a "good patient" who remembers to lock up her syringes, even in her own home.

I realize that the DEA is out of control, and yes, we have to do something. We are fighting for our physicians to the best of our ability. No one wants his or her physician to be lynched by a government agency for having committed the crime of not being a psychic drug enforcement agent while trying to practice medicine. However, do you really believe that having patients sign away their rights is going to keep physicians from being prosecuted? Sorry, I think not.

Any health care professional that has spent significant time dealing with a population of drug addicts will tell you that a drug addict will do anything to get what they need to feed their addiction. If you believe for one minute that they won't sign one of those "Opioid Agreements" you are sorely deluded. Unlike a real chronic pain patient, a drug addict has probably been "piss tested" numerous times in the past, and has managed to elude detection, as in their community eluding detection has been raised to a science, of which many "professors" can be found on any street corner, in any major city in the U.S. Physicians have been and are currently being prosecuted who have had their patients sign these contracts. As far as the DEA is concerned, they might as well be toilet paper. However, I do assure you that unlike drug addicts and the DEA, the Opioid contract has alot of value and meaning to your legitimate chronic pain patients.

Speaking now as a chronic pain patient, I would like to address the issue of the opioid contract and its meaning to many of us. I know that few of your patients will indeed read the entire contract, as they finally have found some relief for their pain. However I was one of those people who actually read the contract before signing it. I actually did something that would probably be unthinkable in the situation and questioned just what "rights" I would be signing away. Well, the reaction from the "professional" nurse was one of surprise, and even hubris. She acted annoyed that I would even question having to sign such a document, and reassured me that it wasn't "a big deal". I assure you that our relationship did not improve when I told her that signing away any "right" was indeed a "big deal" and that I would not sign until the full ramification of signing the document was explained to me. She walked off in a huff and brought a supervisor back to tell me that "every patient in this clinic" had to sign, and that if I didn't want to, I could cancel my appointment. I told her that I had not refused to sign; I merely wanted an explanation of what "rights" I would be signing away.

I won't go on with the further specifics of this incident, but I will say that I eventually signed as I realized I had no choice. I still believe I was entitled to an explanation without an attitude, but then again it seems as though nursing personnel working in the chronic pain clinic setting have been allowed to operate at a lower standard of professionalism than I did when I was an R.N. working in a psychiatric facility on a unit for those involuntarily committed by the court as a consequence of criminal behavior...the usual term for those people are the "criminally insane". Yes folks, indeed, I had to explain to incoming patients exactly what their rights were in the facility. I had to carefully explain when they could be made to accept treatment against their will and why, and then I had to have them sign a document saying that I had explained this to them, and have another staff member witness their signature! I might add that as a professional nurse, I considered carefully explaining the terms of the involuntary hospitalization by court order as not something that I considered to be annoying, but part of my professional responsibility, and if the patient had any questions, I would do my best to answer them completely, and without a disrespectful attitude. Now there wasn't any excuse for the nurse to act the way she did, as I was being signed into the chronic pain clinic at our local University medical center, which in addition to a medical school, also houses a graduate level nursing school. No excuse for the lack of professional decorum.

Well, the day I described above was over 4 years ago, and that was the day I got the first taste of what it meant to be a chronic pain patient, and what I would have to endure at the hands of those I once called "colleagues". From the first incident with the Opioid contract, throughout the three years I was treated at that clinic, I learned several lessons, and if I were to address chronic pain patients, I would probably have a speech prepared that goes something like this:

Good morning, and welcome to the first day of the rest of your miserable life. From this day forward you can forget being seen by the government, society, healthcare providers and possibly your own family as a person of value. The government inherently believes that because you must take opioids to have any sort of quality of life, you are a risk to society at large. After all, if YOU didn't need such a high dose of DANGEROUS medications, there would be less of those medications floating around freely, and therefore less of a chance that a drug addict will be able to steal them from you and kill themselves...even worse, what if an innocent 17 year old child were to steal your medicine to get high? Oh yes, and the government WILL hold your physician responsible if someone breaks into your home and steals your medicine to get high and dies from their own stupidity. Your physician is basically a nice person, who really means well, but don't expect too much of the old doctor-patient relationship, after all, the physician and everyone who works here is taking a mighty risk by treating you, the DEA is always right around the corner ready to pounce. Due to the DEA's appetite for pain doctor prosecutions, your physician and other healthcare providers here and in other settings will not trust you, and will generally not believe you if you tell them the truth about anything.

Forget the fact that you go to church, synagogue, mosque regularly, have never committed a crime in your life, or are even a minister, rabbi, imam or priest - you are now a suspect, and everything you say will not be taken at face value. Be grateful for the pain relief you do get, and for goodness sake, if your pain is not being relieved to the point where you can totally function, do not tell the healthcare staff at this clinic. I don't care if they told you on the first visit to always be honest about your pain level. I don't care if you are worried about breaking one of the Ten Commandments, if you want to keep the little pain relief you have, you will tell them that everything is status quo, at least until you have been on your current med regimen for one year. If you tell the truth, you will be marked as exhibiting "drug seeking behavior" and you are likely to have your dose cut back, or have your break through meds taken away. Of course there is always the fact that they can "piss test" you at any time, and a complaint of a high pain level most surely will bring you a cup, with a request to urinate in it on your next visit, and perhaps even a letter telling you to bring your pills in so that the nurse can count them to see that you are not taking any more than you should.

If you are offered an invasive, interventionalist treatment of any kind, you had better not refuse the procedure. Your refusal of the procedure for any reason, no matter how logical, will be understood to be a preference for narcotic medication, and it will be assumed that you have exaggerated your pain level. Oh yes, now that we are on the topic of "exaggerated pain", allow me to state right here and now that you had better be having a good day when you go to your next visit. Whatever you do, do not show too much emotion to the healthcare professionals in the clinic. I don't care if your dog died two hours before, or your momma got shot, if you display too much emotion you will be tagged as "prone to exaggeration and possibly using your pain for secondary gain". Now that being said, if you were a cop, firefighter, nurse, doctor, one of the types of professions that tends to attract "stoics", get to know your healthcare professionals, as your stoicism might be taken as a lack of need for your current level of meds. If you can, go to a library and read up on healthcare psychology.

Do not under any circumstances mention that there is any tension between you and your family. Try not to have an argument with your spouse the day of your appointment. If you do have an argument prior to your appointment, do not mention it to the clinic staff, unless you want a referral to a psychologist to manage your "dysfunctional self image" and possible major depression. While we are on the subject of family quarrels, I would also like to tell you to be sure to tell your spouse to keep your treatment details, especially your meds, quiet around other family members. If you happen to tell another family member that you are taking narcotics, there will be no end to the comments about how your personality has changed, and how you should "get off that stuff". You may also want to think twice before mentioning your spiritual struggles with your clergy. If you do mention anything, be sure to leave out the details of your medication.

For those of you who are healthcare professionals, be expected to be treated as though you are worthless by those in your own profession. If by some miracle, you do get to a place where your pain is controlled enough for you to return to active practice, you run the risk of being questioned by colleagues as to your competency because you take narcotics. If you are a physician, you may be able to return to practice in a limited setting, however if you are a nurse, you had better totally give up ever returning to clinical practice, even psyche, as you will never be hired once the administration knows that you take narcotics.

One final topic I wish to cover, and that is clinical depression. Yes it's true that many chronic pain patients become clinically depressed. If you should become clinically depressed and you mention it to your pain physician, you will most assuredly be referred to a psychologist. When talking with the psychologist be careful that you only talk about your pain, and your "distorted self image" as being the cause of your depression. Do not mention that the way you have been treated by healthcare professionals and society in general because you take narcotics has contributed to the feelings of depression. Remember your records will be sent to your pain clinic, and you cannot, under any circumstances take the risk of letting the doctors and nurses know how they have contributed to your feelings of worthlessness.

In conclusion, I suggest that if you have any religious beliefs you strengthen those, because other than another chronic pain patient, only GOD knows what you are going through. There are many times when you will need to speak the truth to someone, and from now on, God will be the only one with whom you can truthfully speak. In the beginning, it may feel as though you are having a one way conversation with God, however after a while, you learn to hear his voice, and when that happens it will be the greatest moment in your life. You exist and are a worthwhile person because God created you, and every life is valuable, yes, even yours. When you can hear the voice of God, the DEA, uncaring health care providers, and misinformed family members become like so much dust that you can brush off. God will also give you the strength to reach out to others in pain, and become a resource to them. Yes, you are your brother's keeper, and everyone who lives their life in chronic pain is now your brother. Your brothers number in the millions just here in the United States!

Every life has meaning, and even though you can no longer practice your profession, you are still worthwhile, and you can still be effective. No one is going to give us the respect we deserve unless we demand it. You now have free time, and even though you are in pain, if you can watch TV. you can surely telephone your representatives when a legislative issue comes up that has to do with drug control policy. You also can write letters to the editor of newspapers, call the media when they have unfairly fueled the prescription drug abuse hysteria. At election time you can do more than vote, you can work from home for political candidates who will support us in our fight against government intervention in our treatment choices. If you have access to the Internet you can help spread the word to our brothers and sisters in chronic pain that there is something that they can do. You can show them the way to fight for their rights. If you are a person of faith, you can pray for justice. You can be a support to another brother, or sister when they are having a bad day and thinking of giving up.

Remember beside God, only YOU understand what it is like to be in chronic pain. By listening when our brothers and sisters are ready to give up, we not only give of our ourselves, we also teach them to "pass it forward" when they can. In this way we build a strong community. If you have worked as a team leader in any type of setting and you have experience in identifying personal strengths, you can help those who are part of this exclusive "club" who are feeling totally ineffective to discover their strengths and talents and use them for the cause. As bad as chronic pain is, remember there are also good things about our "community". Think about it - we are a community, regardless of race, national origin, religion height, financial circumstances, sex. We have to be the most inclusive community in the United States! If we collectively raise our voices, the sound will be heard in Washington D.C.!

Hopefully, if we all do what little we can, there will come a day when my speech to you will be only a memory of "the way it used to be". That is my fervent hope.

Good luck and God be with you all.

Elena,R.N., EMT-P,CLNC
Former paramedic 25 years
R.N. 20 years
Chronic pain patient 6 years, 6 months and counting

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