Feast or Family Member

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main-headless-horseman_LRGOn this Halloween Eve, we invite Guest Blogger Mortimer Fein who provides a very special shout out to a dedicated colleague that has shown undying support for pain patients nationwide.

So often when I have heard of a new well-intentioned (or not) policy, law or even just an opinion that is vehemently anti-opioid and I intuit that it will likely hurt people in pain and further inhibit their access to their medications, I have somewhat reflexively blurted out or thought, “I wish they would get stricken with severe chronic pain…or better still someone they love.” But I don’t really walk around wishing evil or ill on people; at its core this sentiment is really a plea for enlightenment. Someone please teach this person how horrible it is to live with chronic pain and please show them the way – that is, if my own family member were hurting I would want their team of professionals to have access to anything and everything that would be of help and that this team would have the time, education and inclination to know how to use them expertly. If only enlightenment could be attained through empathy alone and it didn’t actually have to happen to a person or someone they love for them to want to be as protective of others with chronic pain as I seem to always be feeling. The unintended consequences of so many shortcut attempts to stem the opioid overdose, addiction and death crisis has only added to the living hell of so many people living with chronic pain and many of them might not have been undertaken if the person or people at the lead of whatever initiative happened to have a family member on opioids who had regained their life or even simply their comfort.

It is in this context that I got to thinking about how interesting it is that a lot of the professionals at the helm of the pro-opioid access counter-insurgency are behavior health professionals including psychiatrists, psychologists, and social workers. I don’t know that any of them would want to be so characterized; but I tempered that label by saying pro-access not just pro-opioid per se. I think this peculiar set of circumstances did not come about by accident. Pain psychologists, social workers, and nurses too for example seem more empathic by nature perhaps in part because of their professional tasks.  Turning to psychologists, I think it is impossible for a caring professional to spend, as pain psychologists often do, 45-50 minutes several times per day, day in, day out, and not develop a deep empathy for these sufferers and want to see whatever can be tried safely to help them be considered. That type of closeness and intimacy makes patients more like family. There is no turning a cold shoulder to another person’s misery that could come of being that close to what pain patients’ lives are really like day to day. It is impossible to be overly dogmatic in that profession – because if your eyes and ears are open you will see people who have been helped or hurt by virtually everything that medicine has to offer them. It would be impossible to stand on principle and say that only people with dramatic improvements in function deserve to be continued on opioids. Hard to poo poo the importance when a person who has tried everything from surgery to interventions who is a law abiding citizen but who nevertheless has not been magically transformed into an art dealer because of opioid therapy says to you “it takes the edge off” or “without these medications I would be on the couch 24 hours per day and now I can get off the couch for a couple of hours.” They might not be curing polio. They might not bowl anyone over with their psychosocial attainments; but no one ever looked at them cross-eyed until after their 6th back surgery when they asked for 2 extra hydrocodone per day. Perhaps it was their pain psychologist that argued for them to have it. Or created the circumstances and monitoring to make it safe for the prescribers to provide it.

But there is also a paradox here for this particular profession. At such an anti-medication time in our history they could all be feasting. There aren’t enough of them around so that really well trained pain psychologists could be the beneficiaries (hypothetically, of course, the payors still get to be gate-closers) of completely full fee, completely full practices as everyone sends them all their patients for all the wrong reasons (i.e., to completely avoid the use of opioids). This is not to even remotely begin to say that lots and lots of people with pain couldn’t benefit from working with pain psychologists and not because they’re  remotely crazy – but because pain psychologists help people with pain add to their coping repertoire with skills and techniques and insights and reframes that can help rehabilitate a broken body and soul.

R TwillmanI want to focus on just one, but it is an impressive list of increasingly long-in-the-tooth, grey haired advocates – and that one is Robert Twillman, Ph.D. Maybe Bob understands the plight of salt-of-the-earth people because he is one.  And while I could run down the Executive Director of the American Academy of Pain Management’s CV and the pages of awards, steering committees and task forces, papers and credentials, nothing there would do justice to this sometime unsung hero. He was born in small town Missouri and he has been at this for the better part of 3 decades when he first left the Midwest and completed his education in California. I bet with his soft-spoken and anything but flashy demeanor he was a highly successful fish out of water there and he ultimately ended up back in Kansas where he began an unusual series of highly responsible and important positions not often held by psychologists. Bob, early on, was one of the psychologists of that generation who could walk the walk and talk the talk and gain the acceptance and respect of his medical colleagues. What I know to be one of his more impressive credentials – he is closing in on 70 nights in hotels this year. Because everywhere there is a national, state or local meeting on pain policy there is Bob. Standing up, speaking truth to power in the reasoned, Phi Beta Kappa, measured, Midwestern way. People with pain could hardly have a better person fighting for them in his tireless, never shrill, way. I know that he is considering dissecting the data on the 16000 opioid deaths per year that is constantly referenced by people about to come down with another draconian shortcut to solve complex problems with simple solutions because he knows that subgroups therein are all different and all require different interventions to keep them alive. And he knows that those who quote the statistic usually do so as a prelude to yet another attack on opioid access though it isn’t remotely clear that will make a real dent but it is clear that law abiding people with pain will probably be negatively impacted.

We need more Bob Twillmans out there. He could be feasting but instead he is out there fighting for his family.

As always, we invite comments from our readers!

11 thoughts on “Feast or Family Member

  1. Not to be my usual dramatic self, but in this article is news of persons quite possibly responsible for saving me from potential suicide. As a retired/disabled hospital data analyst in Risk Management and our Medication Error Sub-Committee for Quality Management, now going into my fifth year chronic pain patient, finally hearing that I, and others like me, have an intelligent, sensible, accurate advocate moves me nearly to tears tonight. I avoided taking OxyContin for a year befor my pain psychiatrist convinced me I was not an addictive personality. My physicians have worked to keep the dosage as low as possible combining with Cymbalta, magnesium, eight other drugs and non-medicinal therapies, but even still I’m out of bed an average of 1-2 hours a day. If the opioid is removed from my care plan, the break through pain I currently experience WILL go back to being my way of life, and the bottle of Morphine Sulphate they already tried to foist on me will be my escape route, and my care team agrees no one should be forced to live in my torture. Blessed be the care givers who truly care for those of us who are helplessly attached to the end of the decisions regulators reach without the benefit of our input. It must be quite simple not having it impact ones’ life 24 hours a day, 7 days a week. I would ask you to think of September 29, 2011. It was the day this all started for me. I remember it like most people remember 9/11. I don’t even have to try. Thank you for hearing my convoluted story. I appreciate all of you more than you’ll ever know. I may have gone broke, but finally my story has been heard, I can get some rest. Trisha Bullock

  2. Thank you Dr. Fudin for posting this very compassionate and thoughtful article, and thank you Dr. Twillman for all the hard work you are doing for pain patients and their families. It is good to know someone is out there fighting so hard for us! We can’t afford any more regressive policies. Pain patients who have been stabilized are in fear of losing , and many have already lost ,their quality of life due to these regressive policies. Thank you for helping to make sure we can still ease the suffering of our fellow humanity and hopefully bring mercy and compassion back to medicine.
    Thank you !

  3. I agree with both of my friends and co-advocates, Donna Ratliff and Professor James, Bob Twillman is a great champion of our cause and I applaud his efforts.

    As Marylee stated, another great reason for Pain Care Providers Day, and hats off to Dr. James Patrick Murphy, for that wonderful idea.

    Now is the time for ALL ADVOCACY GROUPS and INDIVIDUALS to rally together and make a stand for ourselves! For adequate treatment, no more stigmatization, and to leave our doctors and pharmacists alone to do their jobs!

    Thanks to you, Dr. Fudin, for getting us all together on this blog, if nowhere else.

  4. “I know that he is considering dissecting the data on the 16000 opioid deaths per year that is constantly referenced by people about to come down with another draconian shortcut to solve complex problems with simple solutions ….” Jeff, I think your guest is stuck in the 1990s. Those 16,000 deaths represent many chronic pain patients, the very people for whom your guest proposes to speak for. In the five years that Vioxx was on the market from 1999 to 2004, it is estimated that some 38,000 people died from heart attacks or strokes after taking the drug and another 160,000 were injured. Did your guest object to pulling Vioxx from the market? Was it a “draconian” reaction? Blamed for 7,600 deaths a year Vioxx was only half as deadly as opioids. I think it’s time we address the issue with some objectivity and consistency. Lives are precious. Trying to reduce mortality rates by implementing standards and controls is admirable, not draconian. Doing nothing and allowing 16,000 persons to die each year from preventable causes is indefensible. Perhaps guest can tell us what we might do to save some of those 16,000 lives.

    1. Actually, John, the point is that we don’t have any idea how many of those 16,000 are people with pain. Some of them undoubtedly are people with pain who are taking their medications as prescribed; we need to protect them by prescribing more judiciously. Some of them are people with pain who are adding alcohol or other drugs (prescribed or not) to their prescribed opioids; we need to educate those folks so that they don’t do that. Some of them are people with pain who also have an opioid use disorder, who crush their meds to they can snort or inject them, who take more than prescribed, or who smoke various medications; those folks need to be identified as having a substance use disorder and treated appropriately. And, then, there are all the people dying of overdoses who don’t even have a prescription for the medications involved in their overdoses; the only way a change in prescribing helps those folks is if we prescribe less so that they don’t have access to the medications in the first place. Those are the folks who also can be helped by abuse deterrent opioids.

      Here’s the thing–CDC treats those 16,000 as if they are all people with pain who are taking medications prescribed to them. There’s a 2008 CDC study from West Virginia that showed that only 56% of opioid overdose decedents had EVER been prescribed an opioid, and that 63% of deaths involved some form of diversion. We need CDC to give us some more granular numbers, because the interventions that will be effective for these various subgroups differ greatly, and if we want to effectively address the overdose deaths, we need to use the right targeted interventions.

    2. Dr. Coleman,
      I appreciate any and all comments because I uphold our constitutional right for freedom of speech. With that being said I do wish that you could focus your attention on the real inside information on why these 16,000 people are making bad choices each year. What I have found is the majority of overdoses each year are people that have drug dependencies and addictive behavioral issues that need to be addressed by Dr.s with your credentials.
      It has been such a stigma for people with opiate dependencies are you suggesting the page is turning? That would be music to all of our ears because the focus that you have is somewhere in the area of .0026 of people that are dying because of overdoses vs a conservative amount of chronic pain patients at 60 million.
      Why don’t you propose what you would do with us? I would venture to say that you just might take us behind the barn!
      Whst do you propose that we do with all of the talented productive people that are going to be greatly impacted on a daily basis. What happens to our productivity as a society? Do you realize that we are doctors, lawyers, bankers, mothers and children? It is just as criminal to let someone suffer that has chronic pain as it is to give a addictive personality a script of pain medication.

      1. Would you all excuse my typo regarding chronic pain care patients being 6 million. I meant to say 60 million. Thanks in advance Jamie

  5. Yes Bob is a great man! I know the pain community respects and appreciates him very deeply. Let’s all thank Bob Twillman for his perseverance for continuing to stand for the rights of legitimate pain patients across the country!

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