Chronic Pain

Chronic pain is a bitch. My apologies for the harsh opening but it’s true. You can take 100 of the most experienced chronic pain patients and get 100 different coping methods or prescriptions for dealing with it. There is no right or wrong way of coping, there is just coping. Personally, despite my best efforts at changing, I’ve seemed to revert back to my old method of isolation as a coping mechanism. Without understanding why, I seem to be shutting out people I shouldn’t be. Like I said, chronic pain is a bitch. 

Despite popular cultural beliefs, chronic pain is a legitimate diagnosis just like Ankylosing Spondylitis, Bronchitis, or Cancer. Not enough people realize this. I’m not self-diagnosing, self-prescribing, or trying to dramatize my life when I say I suffer from chronic pain. This disease is invisible which means you have to develop a level of trust with me before you can even begin to understand what this illness means to my life.

Take my current pain levels for example. For reason’s I’m hoping my last MRI will shed light on, my lumbar spine has been a solid 8 on the pain scale for the last 2 weeks now. That is an 8 out of 10 on my pain scale. Without context, that does not mean much to you I’m guessing. Obviously my 8 is going to be different than your 8. However, if I add that my 10 out 10 came the night I fell rock climbing and had to have 10 screws and a plate inserted into my left arm that gives you better mental image of my current pain levels. Even with my rock climbing accident analogy, I understand that you still have to trust my abilities to self assess my pain without bias or prejudice.

Establishing trust between 2 individuals takes time under the best of circumstances. Since doctors and providers do not have time, someone created what is called a “pain contract” in order to protect provider’s practice while treating pain patients. I say protect because I’ve found the contract to be personally humiliating and quite aggravating. These contracts are nothing more than a political liability shield that makes those in charge feel like they are protecting the public from possible prescription abuse when in fact they are making pain patients defensive and skeptical of the quality of care they might receive. O.K. I will get off my soapbox and explain.

I understand that this Agreement is essential to the trust and confidence necessary in a provider/patient relationship and that my provider undertakes to treat me based on this Agreement.

Trust is key to any relationship, be it friendship, business, romantic, or health care. Trust is also a primary component of any form of inspired communication. Without it, not much can happen. However, trust isn’t something that can be quantified. In many respects, it’s like the Supreme Court definition of porn. We don’t know how to define or articulate it, we just know it when we see and feel it.

Given that trust can’t be quantified, how can anyone expect a patient to feel comfortable making trust a contract condition? Trust has to be earned, not scored. As a child, we don’t quantify our caregiver/dependent relationship through paper. We don’t require teachers to give out contracts to each student at the start of each school year contractually obligating trust. Why do we force pain patients, who are there because their quality of life is low due to high pain levels, to sign a contract before they can even begin to receive treatment from a provider? I’m obviously not a lawyer but wouldn’t using pain to enter into a contract be considered coercion under any other business circumstance?

This particular bullet point example was pulled directly from a pain management contract I found online. I will tell you that my particular contract looked and was worded almost exactly the same as this example.  Given the importance of trust, shouldn’t it be the first bullet point or part of the mission statement of the contract. In this case it wasn’t, it was the second bullet point. From a patient perspective, this is ugly paternalism at its worse. We can and must do better.

I agree that I will submit to a blood or urine test if requested by my provider to determine my compliance with my program of pain control medications.

To be perfectly frank, I’m still humiliated and angry over having to pee into a cup (the cost of the drug test came out of my pocket) before I was allowed to receive care and treatment for my chronic pain. Don’t get me wrong; I understand the logic behind drug testing. It’s a simple yes or no answer; our country loves things that can fit neatly onto bumper stickers.  Especially in today’s divisive climate, a nuanced or complicated patient is equivalent to legal liability in the healthcare system. The trouble is my patient story does not fall into a yes or no category, no patient story does. In this case, the tool is not helpful for the ideal of patient centered care.

As a so called “epatient advocate” who believes strongly in the idea of everyone included, I’ve often wondered what would happen if I would have requested a drug test from my doctor before I agreed to be his patient. Do I have that right? After all, as a chronic patient I’m worth tens of thousands of dollars to the practice. As such, don’t I have a right to know that my provider isn’t on any illegal substance or self-medicating with the office opiates? If part of the reason for the contract is building trust, trust must be a two way street. 

I will not attempt to obtain any controlled medications, including opioid pain medications, controlled stimulants, or anti-anxiety medications from any other provider.

This particular bullet point is the reason for this post. It scares me and is the main reason my quality of life has been so low this past month now.

As almost anyone with a chronic condition will tell you, one of the hardest parts of living like this is the preposterous roller coaster ride it puts us on. Some days I can ski like I did when I was a ski instructor, some days I need to lay down after eating breakfast because the pain is so bad from drinking my morning strawberry banana fruit smoothie with chi seeds. There is no rhythm or reason for flares to often, they just attack us.

Thanks to my most recent attack, my new “normal” will probably be living in a 7/8 state on my pain scale. I’m hoping that with physical therapy and other treatments will bring that down to a 5/6, but that’s just a hope right now. Before I was told that this was probably going to be my new “normal” I was contemplating going to the ER pretty much every hour for 2 weeks. Living at an 8 with no reason why is tough, even for someone as experienced as myself in pain. The sole reason I didn’t go was because of this bullet point in the pain contract I had to sign. Would my pain management doctor see me going to the ER as an attempt to obtain more controlled medications or would he see it as an attempt to regain my quality of life? Forcing patients into this choice is just cruel; again we can and must do better.

The irony of my current situation is when my doctor heard about how much pain I was in he told me to go to the ER if I got any worse. At that point in my pain “any worse” was going to mean losing the ability to walk. On the one hand I was highly appreciative of my doctor realizing that I was struggling hard but on the other hand it was somewhat insulting to have to get a providers blessing before I could actively pursue a better quality of life. This is the current awful irony of our healthcare system.

I agree that refills of my prescriptions for pain medications will be made only at the time of an office visit or during regular office hours. No refills will be available during evenings or on weekends.

This is probably the most confusing part of the contract for me. For reasons passing understanding, in order to get a refill for my medications, that I’ve been drug tested for on several occasions, I have to go to the office each time and pick up a paper script. Someone along the line has decided that by forcing me to pick up a piece of paper instead of calling in a script like they do for all other medications will prevent me from becoming an addict. How can my provider and I build trust with this kind of requirement?

Many of you might be thinking what is the big deal. The big deal is the time involved in order to fill a script. As a high functioning chronic pain patient I have 2 choices. First, I can take sick or vacation time from my full-time job to drive to my doctors’ office to pick up the script during the day and then go to my pharmacy to fill it. Second, I can take an hour off to pick up my script then fill it during the after work rush at my pharmacy. I say take an hour off because my doctor closes during lunch and does not allow script pick-ups during this time. This means that my 8-hour workday basically became a 10-hour day thanks to the time involved to get a prescription refilled during rush hour. As a chronic patient I can tell you I’m much more valuable to society when I can use those extra 2 hours to go to the gym or get some miles in on my road bike. Those sports are whole body treatments for pain, sitting in a pharmacy waiting room isn’t.

Part of my pain contract required me list the specific pharmacy I wanted to use. By contract, I’m not allowed to fill at another pharmacy, even within the same chain, without alerting my doctor’s office. To put it another way, I can be refused treatment if my Fred Meyer pharmacy on Chinden doesn’t have Nucynta but the Fred Meyer on Overland does so I go there for that particular refill. In Idaho, all prescriptions that I refill are put onto a statewide database that I had to give my doctor permission to access. There is an easily accessed electronic trail of my prescription use that I don’t have access to which means I can’t manipulate it. Why do I have to waste valuable vacation/sick leave just to pick up a piece of paper?

Conclusion

Pain management contract nonsense is not the fault of our providers. It is not the fault of patients. This is a system problem make no mistake about it. The system, based largely on business principles and simplistic politics, is designed to make patients pay and assumes providers are paternalistic white horses that are saviors of all of us because they are business owners. There is very little or no opportunity to build trust or a human relationship within our current healthcare system, which is the foundation of care in my humble opinion.

There is also a notion that pain medications, such as opiates, are curing my pain. This is simply not true. My body is still very much in pain; I just don’t care when I’m taking my meds. The destruction, rewiring of my brain to cope, and stress of being in chronic pain is still happening. My pain management contract does not mention these aspects of my disease. How can we contract pain when the actual experience of being in pain isn’t even mentioned?

Until we can have an honest conversation about whether healthcare is a business or should be a human right trust will always be an elusive and academic dream instead of a reality. Everyone from providers, insurance companies, physical therapists, I would argue grocery stores (eating clean helps) and patients should be apart of this conversation. After all, trust cannot happen until all players are considered experts and treated equally. Until that happens, I will have to continue to pee into a cup in order to attempt to have a quality of life worth living and sign contracts that are more insulting than beneficial to my care. There will always be bad people that will want to abuse drugs and/or the system, that doesn’t mean we should punish the entire patient population that just want help. It means we should design more with everyone, not settle for the status quo, and most importantly, and never stop trying to improve the quality of life of all of us in the acute or chronic patient categories.