Some Helpful Advice for Medical Doctors on Talking to Patients with Chronic Severe Pain.

Since I have been sick and experiencing severe pain regularly for the past six months I am proud to say I have been extremely professional and polite with every doctor I have met. In turn they have been that way with me. However I have also been dismayed on a few occasions when some of them used incorrect, misleading, made up, or unsupported “facts” to explain why they couldn’t prescribe me anything stronger for my debilitating pain. To clarify here of course I did not ask for anything “stronger” I am well aware that I cannot ever ask for a specific medication or specific dosages. Even mentioning a previous medication regime that was proven effective can get one blackballed if not worded just so. Once one gets the dreaded drug seeker label they will need to explore alternate options because they will never get another prescription for opioid medications in this lifetime. There is only one worse label, the drug user. Once you have been labeled a drug user your options are severely limited. Of course you definitely should get and remain clean but recognize sobriety has nothing to do with this. You can never shed the drug user label. Ever. I recommend you begin a serious prayer regimen to whatever entities you believe in that you do not ever end up with any medical conditions of which severe pain is a symptom, cross you fingers and hope for the best. I also of course realize the danger of using words like “stronger” or “more” or a host of others. God forbid you use the word drug and not medication. That little slip up is an instant bye bye. Pro-tip that one can be very bad. I have heard of that minor infraction earning a drug seeker label on the spot.

Of courseI exaggerate some for effect but these are real things. These stupid games I am expected to know the rules of when I didn’t even know I was playing a game. I just want to reduce my suffering some and because I am suffering so badly I can’t help but at least try and follow the rules. Maybe this time I will say just the right words in just the right order and I can sleep an uninterrupted 6–8h at home in my bed. These unwritten rules have gotten so complicated I am not even sure if it is OK to say that I am in pain. Sorry there is no such thing as pain. You have invented a concept solely for the purpose of getting high. Drug seeker. Probable drug user. Next.

I am well aware of all of these ridiculous linguistic hurdles that have been artificially erected. I am also well aware of the real reasons for them so why not just tell the truth (see below for one possible suggestion). I also have restrained myself every time so far when I was told to “Just come to the ER when you experience severe pain.” The option of just come to the ER is not really an option at all for someone like me. I have a good job that I love. If I had to go to the ER every time I had an episode of severe pain I may as well just quit, admit myself to the hospital, and live out my days there. So far I have managed to maintain at least certain aspects of a normal life because I have the option of working from home on the days the pain is so bad I can’t get out of bed. The vast majority of chronic pain sufferers most likely do not have that option. Please stop suggesting it to patients for whom you know or where you should know it is not really an option.

If you are not honest about why you are or are not prescribing certain medications the public will eventually lose all trust in the vast majority of your recommendations that are based on sound science. Moreover when you suggest options that are not really options to patients for whom you know that is true you are impugning the worth of the person in a really despicable way. I hear, “I don’t really care about helping you, at least not enough to bother trying to understand your situation. It is easier for me to suggest the ER option than nothing at all since you are less likely to raise a stink. Of course I realize that to do this you will have to give up any semblance of a normal life but your life is of much lower value than mine so good luck with all that. See ya”

Even more ominously for the the chronic pain sufferer I have been feeling ever higher levels of pain shaming with each new trip to the hospital. I feel now I need actively preplan and to workshop ideas on how to phrase every aspect of my pain conversations out of pure fear that if I accidentally say the wrong thing the labels come out and my stay becomes even more unpleasant than it already is. I should not have to do that! Do you understand how fucking humiliating and ridiculous that is? I should not be literally afraid to express that I am in pain and request an option to help. If I use words like “I really need more, this is not working” please don’t automatically go into oh shit he said a bad word mode, only drug addicts “need” not patients. Of course I understand that their are scientifically valid reasons why some options may not be safe. Just fucking explain that too me like an adult. I will understand. Do not ignore me, mumble something unintelligible about addiction risk, or make up a fake study with data supporting why that would be bad. I will ask for a citation so I can review the study myself. Also for the nurses I know how hard your jobs are and appreciate the hell out of you for all the times your kindness has brought me back from the brink of despair. I can imagine how frustrating it must get when the same patient keeps calling you every two hours on the dot to remind you about his pain medicine. I hate doing that so much. I fucking hate it and I know you all do to. Unfortunately I have learned from way too much time in the hospital in crippling pain that if I do not call to remind I almost always get the dose 30–45 minutes after it is due. With the reminder call usually only 15–30 minutes overdo. The reason every minute counts is that typically the doctors always set a dosage schedule that is nowhere near adequate especially considering the nurses virtually always run late. Every single time I have in the hospital the doctor will ask how long is the pain control lasting after each dose. I am always as honest as possible but it seems no matter what I say the schedule is set to a time well past that control. Therefore I am usually almost back to my pain level but that brought to the hospital in the first place well before I am due for my next dose. Why ask me that question if you are going to simply ignore my answer or which implies you believe that I lied for some reason or you really are not interested in effective pain control you are interested in minimum level pain control. Guess what. Fucking fine. Just tell me that! Be honest! We can talk about! Describe your reasons for the approach you are taking honestly! If it is because the hospital got a surprise visit and lecture from the Feds last week on the importance of not overprescribing even in the hospital setting just fucking tell me that please! I can understand that. It is a shitty, non science based reason, but it does have an explanation, fear. I get that.

I would have been so happy if just one of those doctors showed some compassion and simply stated the truth. “I am too scared to prescribe you anything stronger because the only stronger options currently available are opioids. Unfortunately I and my fellow doctors are currently under significant threat of arrest and prosecution for any opioid prescriptions written. You may have heard about the recent restrictions related to this class of drugs. I know the official line is that they are now just more tightly controlled but still available. That is misleading at best and an outright falsehood at worst. It has been subtly but clearly suggested that any prescriptions for opioids written outside of a hospital setting could trigger investigation and prosecution of any doctor at any time no matter the justification. I recognize you are in severe pain and know these drugs are safe and effective and could provide relief but I am not willing to risk my freedom and my family in this instance. In fact I am no longer writing opioid prescriptions for anyone without exception and I no longer accept any patients with conditions known to cause severe pain except where such rejection would be prohibited by relevant law. I could write you a short course of Tramadol but I recognize how inadequate that would be for your pain level. I am so sorry but my hands are literally tied. As a doctor I swore a solemn oath to heal and relieve suffering in others but in this case I have made the very difficult decision to break that oath due to government intimidation and actions over which I had no input and no control. Unfortunately your only remaining option for obtaining any relief is to return to the ER every time you experience an extended episode of crippling pain. I fully recognize what a burden that is for someone experiencing such frequent attacks. Hopefully you are able to maintain some semblance of a life outside of weekly trips to the ER. Know that I am here to fully support you in every other way I can. I can at least try and make sure you are not harassed, intimidated, or accused when you do come to the ER seeking pain relief. They do keep a special list with the names of all patients deemed to have suspicious amounts of pain and visit the ER on a regular basis for treatment. It is hospital protocol that these persons be subject to enhanced scrutiny. I have asked about a patient exemption process to remove names from that list but was told it was just too risky from the hospitals perspective. Since you will be on the list you will need to plan for 1–2 hours of wait time compared to non list patients. I know you know this but any perceived rudeness or impatience or even asking about your status could result in you receiving no treatment that day. You may still also be turned away with no reason given. I will do all that I can to try ensure that does not happen more than a few times a year.”

If just one doctor would say that or something similar I think I would break down on the spot. Obviously it would do nothing to relieve my suffering but at least it’s a validation, a recognition, that yes I believe you, I understand, I know you are not a criminal, or a liar, you have every right to be angry that you are made to suffer when safe effective drug treatment options exist, you are not a drug seeker, you are not a drug user, you are not just trying to game the system, you are not weak. Even if that last part about trying to help smooth the process with ER admission is a lie, which I’m sure it would be in today’s environment, the gesture itself would be so appreciated.

I recognize calling you out as oathbreakers is pretty harsh. Wtf do I know about it? You may try and soothe your conscious with an appeal to the do no harm clause. That clause may be a very valid reason to deny any particular patient in very specific circumstances access to certain medications. However it cannot be used as blanket justification of a policy, enacted out of fear, for reasons that have little to no basis in the established science. Moreover I am sure I don’t have to remind doctors of the growing body of research implicating the long term experience of severe pain as a contributing factor or even direct cause of a number of complicating disease conditions. Musculoskeletal conditions, nervous system disorders, and a variety of mental illnesses might just be the tip of the iceberg. It is also possible that these severe pain associated diseases may be irreversible even after effective pain control has been implemented. If these research holds up, now by refusing to treat chronic severe pain sufferers not only have you clearly violated the always work to reduce suffering clause but the do no harm clause is removed as a defense and you are in clear an unequivocal violation of it as well. I can understand and appreciate the untenable position you have been put in and I cannot argue with acting to protect you and your family’s best interest before the interest of any single suffering patient. But be fucking honest about.

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Research scientist (Ph.D. micro/mol biology), Thought middle manager, Everyday junglist, Selecta (Ret.), Boulderer, Cat lover, Fish hater

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