A Case For Intractable Pain Centers: Part 1

A crisis due to the scarcity of intractable pain (IP) centers is leaving suffering patients with no place to turn.
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This is the first in a series of articles that address the need for accessible intractable pain centers in every community. The series will review existing legislation that permits extreme approaches to the relief of this deadly condition, outline the precautions that must be taken to safely operate an IP center, suggest the steps that must be taken to establish a functional IP center, and urge competent physicians to pursue this subspecialty. No greater opportunity exists to serve in the tradition of medicine while conducting a lucrative center.

There are several scenarios that must be addressed. At last count, there were thirteen states that have intractable pain laws and, before this series is over, we will indicate special cautions that exist in any of these states. Whether laws exist or not, there is a need for intractable pain centers and we will try to provide guidelines for physicians in states not having their own intractable pain laws.

We will be interviewing physicians who have been instrumental in establishing guidelines, legislators who have written the bills and attorneys who have represented intractable pain physicians.

A Case In Point

A short time ago, this author received an e-mail from a patient in Connecticut frantically seeking an intractable pain practice. His doctor, for one reason or another, had closed his practice and this patient was left high and dry. The procedure had been for him to periodically visit his physician for routine reevaluation and ongoing prescription of opioids so that he could function. He had long since exhausted all other remedies.

Without these prescriptions, he was incapacitated with pain and was desperately seeking assistance to find an a practice to continue his therapy. He was so desperate that he stated he would be willing to travel to New York, New Jersey, Pennsylvania, or Massachusetts. This author recommended an organization that might be able to refer him to an Intractable Pain practice and it is hoped that he was able to find relief.

There were a few things about this incident that surprised this author. First of all, Practical Pain Management is a professional publication not intended for patients and yet even our editor has received numerous other communications from desperate patients. These patients are either searching the internet or finding our publication in medical offices. There is no bureau or guide for a patient in need to find an IP center.

Desperate Pleas for Help

The following email was sent to Marv Rosenfeld, Publisher of Practical Pain Management on July 4, 2004.

“I am a 40-year-old IP patient who has been treated with narcotics for a cervical hernia at L5-6 and also 3 herniated discs in the lower lumbar area. Along with this there is moderate to severe spinal stenosis in the 3 disc area mentioned. The injuries are all found on MRI and some other tests that have slipped my mind. I also had a failed shoulder surgery that has only gotten worse. My dilemma is that my pain management doctor has lost his license for 5 years due to some fraudulent billing to Medicare in 1998-2000 so all his patients are in the same boat as me. There are no doctors that will treat me with the meds that he had been treating me within the 50 mile distance that I had been driving (3 hours) to see him every 4 months. With those meds I am able to workout, play with my children, and even think clearly without the pain I had been suffering and soon will be suffering again. Any kind of help or referrals to other doctors will be so much appreciated. Please get back to me with help. I don’t know where to turn or what to do, so help me. Thank you.”

The following email was sent to Forest Tennant, MD DrPH, Editor in Chief on August 8, 2004.

“I found your intractable pain articles this morning and sobbed. I have been praying and searching for a pain specialist who could understand. Your definition of Intractable Pain describes my life for the past 4 years to a “T.” I was in an airplane crash in March of 2000. My L5-S1 disc was split in half, L4 and L3 were weakened. Whiplash snapped the muscles in my neck so efficiently that the natural curvature of the spine has been gone ever since.

I had a spinal fusion one and a half years later, a second surgery eight months later, and more “stupid, doesn’t work, what the hell was I thinking” painful injections and procedures that I can’t even count anymore. The pain just kept getting worse and it was awful to begin with. Believe me when I tell you that it has been only by the love of God and my family that I have not lost my mind or taken my life because of this all-consuming pain.

You gave me so much hope…you really did. I barely know what to say. It has been so hard to convince anyone outside my family that the pain is so severe it takes my breath away. That my whole life has become something I can’t recognize. That because I can’t bring myself to writhe on the floor and scream in front of each new doctor then I CAN’T POSSIBLY BE IN AS MUCH PAIN AS I AM TELLING THEM I AM.

Could you recommend someone who understands INTRACTABLE pain and, if you could not help me with the above requests, then I just wanted to thank you. Thank you so much for researching and writing what you did. You gave me hope at just the moment I screamed out for it. That means so much, as I’m sure you know. Thank you and thank you again.”

The second surprise was the fact that this individual referred to intractable pain by the acronym ‘IP.’ Intractable pain is the severe, constant pain that can only be relieved through the use of drugs. That seems simple enough yet we very seldom see the term in the literature. Authors may refer to constant, severe pain but not ‘intractable pain’ or ‘IP.’ It is not clear why this is so, but perhaps there is a perception that this term is associated with some sort of abuse or, perhaps, there is a great reluctance to classify pain as incurable vs. curable and grade it as mild, moderate or severe.

Although the use of the term ‘IP’ in the U.S. has been promoted by intractable pain legislation, the term appears to have originated in the British medical literature several decades ago. If American pain physicians are to advance the specialty of pain management, management of the most extreme condition should be foremost on the agenda and recognized for what it is. Most physicians currently specializing in pain are either anesthesiologists or physical medicine physicians and yet they do not specialize in incurable medical conditions. Further, a cursory search could not find any family practice, psychiatry, or internal medicine residencies that offered fellowships in intractable pain.

First published on: September 1, 2004