Chronic Pain Patients and their Physicians – Is a Reboot Coming?

Chronic Pain Patients and their Physicians – Is a Reboot Coming?

“We (Patients and Doctors) have a vested interest in talking to each other, not around or about each other.”

That was the message Terri Lewis Ph.D  told an audience at the International Conference on Pain Medicine in Chicago.

Lewis said there is a “care crisis for persons with chronic pain” that must be addressed. She talked about the need for a “working alliance” that emphasized an agreement between physicians and patients on the goals and tasks of treating the chronic pain.

Lewis, who has written extensively on what she believes is a broken health care system, has a special and lifelong interest in chronic pain given that her father and her son both had to endure it. The former Southern Illinois University professor has been on assignment in Taiwan where she is working to help implement community health care systems into the Taiwanese health care model.

Recently, she has been using social media to gather information from chronic pain patients about their experiences in the health care system. Some 500 persons have answered her survey – and what she’s finding is that things are not in a good place.

“27% of respondents report that their working relationships with their physician has deteriorated, and 21% report having to change pharmacies,” she said.

The survey, she thinks, revealed several data points that are hurting patients.

They believe:

  • The DEA now directs pain treatment in America
  • Persons with chronic pain are treated as addicts
  • In rural American, patients have to travel more than 50 miles to see their physician because treating providers have relocated
  • The pharmacists will no longer fill the prescription
  • Once the regulations change, my provider dumped me

“We should all worry that physicians are afraid to treat patients who are victims of pain,” she told them. “More and more, doctors are refusing to treat their patients who have chronic pain because the DEA has instilled fear in them.”

While chronic pain does not favor one income or education group to the exclusion of other, the majority of approved filings for disability are persons in the prime work age of 45-to-59 years old, leaving households vulnerable to economic insufficiency and care partner burnout.

“This is no way to run a railroad,” she said. “or a health care system.”

Lewis, who is a patient advocate, reminded her audience of the high rate of burnout among pain specialists that may be a wakeup call to the specialty. She showed an article in Anesthesiology News in October 2014, that reported the burnout needed to be addressed since it places the physicians at risk for substance abuse, interpersonal difficulties and suicidal tendencies.

And important, it also increases the risk for medical errors.

“Patients need to know and believe they can speak to their doctors as equals,” she told the National Pain Report. “That’s a big change in how most doctors view patients and vice versa.”

Lewis said she expected her talk would rankle her audience.

She was pleasantly surprised.

“After the talk, there was quite a bit of positive reaction. I’m thinking that we may be getting to a place where a serious conversation and some accompanying change might occur in how chronic pain is treated,” she said. “It is certainly is time to do something different.”

Physicians and researchers are very interested in elevating this conversation and getting it back on track toward the service of patients. There was pretty widespread agreement among folks in the hallway conversation that nobody benefits from the current state of affairs, least of all patients.

Authored by: Ed Coghlan

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Here’s a new one – our regular pharmacy keeps saying they’re out of my husband’s pain meds, and now it’s impossible to fill elsewhere, as every other pharmacy is saying they’re not taking “new patients.” What!? I have a horribly painful spinal cord disorder and my husband suffers from the most severe case of rheumatoid arthritis anyone’s ever seen (800+ on the RA factor test – normal is 14 – and severely disfigured hands, knees, elbows). I am barely able to walk without the use of forearm crutches and even with them, I am losing my balance and falling every time I try to leave the house. I am terrified I will break my hip. My husband and I struggle to be each others’ caregivers. Despite our obviously painful conditions, our pain management doctor was forced to cut our medications in half due to pressure from the DEA, and now we are treated like criminals by the pharmacy, who clearly loves having the upper hand in this. I frankly don’t know why pharmacies have such a strong voice in our medical treatment, as they are not privy to our records, years of treatment, efforts to find the right medicines, etc. Even if they were, they did not spend a tenth of the time becoming educated in medicine that my doctors have. I have been in pain management for over ten years, and once the correct medicines and dosage were found more than nine years ago, I’ve never asked for or needed an increase, never run out, never had any problems in my urinalysis. To suddenly be not only under-treated for my pain but also be made to feel like a criminal adds so much humiliation and depression to my previously managed but now deteriorating situation that I am beginning to experience the worst anxiety every time I have to leave the house — it’s unbearable. Is this what the rest of my life looks like? Congratulations, DEA, for pressuring physicians into torturing their patients, for grouping every person who needs pain medication to live a functional and meaningful life into the category of criminals and addicts.


This is a very timely article as our son-in- law broke his back two weeks ago. It was his lumbar, L-1 and it was pressed against his spinal cord. When he got to the hospital, they operated immediately.

Now, he’s in rehab and although 99% of the staff have taken wonderful care! there has been nurses that have insinuated that he is an addict and they don’t want to give him his meds.

The doctors seem to be experimenting with him and too often talk with him after he has been given pain meds which make him loopy. One doctor decided to take him off of his pain meds just to see if they work!

Communication is good, but it needs to be done while family members are there or the patient is coherent.

Stephen M

Doctors can’t be gatekeepers and shouldn’t be prosecuted unless intentionally supplying an addict.

Also, the DEA is only allowed to do this because of an outdated ruling declaring that addiction wasn’t a disease when opioids first required a prescription.

It also surprises me that we’ve gotten to a place where pain patients are being so marginalized and doctors are not standing up for themselves. Now that politicians are jumping in in response to the media hue and cry about the “opioid crisis”, we can be all but guaranteed that legitimate pain patients will be sacrificed so those politicians can show themselves to be doing “something” — even if they themselves have no idea exactly all of the concerns surrounding this issue.

Years ago, long before this so-called crisis began, I was part of a Chronic Pain Conference. One of the seminars was a little different: instead of a panel of pain doctors speaking to patients and answering their questions, I was asked to be one of a panel of pain patients for a room full of pain specialists to give them a chance to ask us questions about our experiences regarding our pain treatment. It was an interesting experience for me and I heard several doctors comment about how they found it thought-provoking & insightful and not at all what they expected. If only this attitude had continued on since then. I still have the booklets and notes from that Pain Conference and it was such a great event.
I wonder what the likelihood of another, much larger pain conference with the same focus would have of happening now — particularly with the goal of getting doctors, the media, the DEA, and politicians to stop looking at this “crisis” in only one way? If only.

Doc Anonymous

Kudos for Terri Lewis!!! An OPEN dialogue is much needed. But at the present time I fear that doctors are much too fearful to engage in an open discussion. Doctors have not been able to band together because of threats (and actions) from the federal government claiming that it violates antitrust laws for doctors to band together.

Second, and perhaps foremost, the DEA does hold immense control over doctors. Without a DEA certificate it is next to impossible for a doctor to get or maintain hospital priveleges, membership in Medicare, Medicaid, and other insurers…..meaning the doctor without a DEA certificate will most likely have to run a cash practice. Then there is the hidden agenda of the Department of Justice including the DEA: THere is NO distinction under the law between “addiction” and “physical dependence” even though valid medical science tells us there is a big difference. However, using that interpretation the DEA can and often does target the most well meaning doctor who dares to treat large numbers of opioid dependent chronic pain patients.

I can assure all readers from personal experience that the Department of Justice views any and all physically dependent patients as addicts…..and it is in fact illegal for a doctor to treat an addict with opioids. Until the courts and the department of justice adopt the scientifically accurate stance, that there is a huge difference between physical dependence and addiction, doctors will with good reason fear to tread into the waters of treating pain with opioids.

Perhaps efforts to correct the path of the DEA and Department of Justice would be the most fruitful first steps.

Dena Meeks

This is an interesting article and I was struck by the high rate of burnout among pain specialists. Sadly, on March 14th, a long time pain management doctor faced burnout and committed suicide. He was an intelligent, compassionate physician and a wonderful man. His death at age 51 was shocking and because he didn’t have any partners at his practice, nearly 2,000 long term chronic pain management patients were suddenly without a doctor, many in need of pain medication (oral and pump patients) the week of his death. Kentucky passed legislation a couple of years ago, House Bill One, to eliminate “pill mills.” Sadly, this same legislation has made it difficult for legitimate patients to get the care they need. About 100 of us have come together on Facebook and the stories are sad, many of us have not yet found another pain management doctor. The health care system is clearly broken and there are hundreds of us still trying to find a new pain management doctor. We need help showing our lawmakers that they have only made things worse for legitimate patients and now we have cheap, readily available heroine in our community and a dramatic increase in drug related crimes, especially shootings. If we could move to a different state, we would do so, but that’s not an option for us right now. Thanks for the article.

Dear Terri… I know your presentation was well received at the conference even though it probably went over some heads there… lol… Clearly the need for an open dialog is way, way overdue, and I’m so glad that its you at the helm on this one. But until the industry recognizes and admits that there is a causative relationship between certain interventional techniques and the onset of chronic iatrogenic pain, (and thus the need for lifelong opiate consumption) I fear the majority will continue to resist such a dialog as it will most certainly expose the truth about their adverse role in the overall scheme of things.


Good intentions are not enough. A good plan is needed- and this article doesn’t mention such. If the pain specialists mentioned here are like those that worked on the NPs-then i have to vote no confidence in a “reboot”. The NPS lacked implementation science- even the IASP in their comments to the NPS mentioned such- so how will doctors with no training in change management or implementation science or planning somehow with good intentions make pain care better and more person focused? The small number of pain specialists- pressed for time and under pressure from the DEA- how will they find the time to make needed changes? How will they find the energy to do so?
In America, in particular- doctors make twice as much as their European counterparts- are they willing to spend more time with people in pain- or will they continue to sacrifice value for volume?
It has been time to do something different for people in pain for over 40 years. I don’t believe any pain specialty organization has called for their own membership to transform their own practices or give a kinder or gentler face to pain care. I see no reason to conflate some bland niceness during a single convention to signal transformation in pain care.


Somebody gets it.
This needs to be addressed country wide…
Not state by state.
I just hope I’m still alive to be part of the reboot.
Right now my pain management is
Under managed
I’ve suffered 34 years and am horrified that care is going backwards!

Marian Medvec

I have had to change pharmacies due to this “pain medication” crisis. My old pharmacy made me feel like a drug addict and like I was doing something illegal. They also refused to fill prescriptions that they had filled before with the explanation that they were not “comfortable.” I told them I did not care if they were not comfortable, I was not comfortable. But I left the entire store, will not shop at Walgreens for cosmetics, or anything else.

Dawn Holley Norton

I sure hope and pray that Lewis and many others get these doctors, DEA, and FDA to understand that there are MILLIONS of us that are suffering (in some cases SEVERE) pain 24/7 and have either NO pain relief OR very little relief. THIS is what’s causing our depression, anxiety, and for some…suicide. I feel it’s easy to determine the addicts and sellers to us TRUE chronic pain patients… Hair drug tests!!! Blood and urine samples are for them past 72 hours right??? NOT a good at to catch the addicts and sellers. Addicts run out LONG before its time to refill their prescription… I’ve witnessed it AND it’s THOSE people that have made it difficult for all of us legitimate chronic pain sufferers. Those that DO get their medications are, as Lewis said, being denied their medication because the pharmacist refuses to fill them. It’s a shame !!!

This is wonderful news. As soon as we, as patients, stop being victims of our pain and doctors stop being victims of the FDA, DEA and insurance companies, open discourse between us will more readily occur. How do we stop being victims? By being proactive instead of reactive. By banding together against the federal organizations that would dictate how chronic pain is too be treated and who can prescribe or benefit from narcotic medications. By being responsible when narcotics are prescribed. Let’s work together to do the right thing.


While I applaud that his conversation is FINALLY occurring, I am mortified that doctors have not banned together in droves to bombard the DEA and other agencies to stop this practice of harassing, stalking, arresting and criminalizing chronic pain patients and their care givers.
Doctors have a lot of power in America, as much or more so than lawyers or politicians. Yet they roll over and take the easy {$$} way out by abandoning the patient they swore to treat and serve during their Hippocratic oath? We have seen this before, the huge OB/GYN sell out. The excuse that time was lawsuits, and insurance fees to practice. So what is the issue this time? Oh they have to do some paperwork to back up their plan of care? Or they may have to tell a patient NO if they feel they do not need the meds? Seriously, I have found one doctor on the WEST COAST that isn’t afraid to treat my chronic pain and isn’t afraid of the DEA. So why aren’t more doctors standing up and fighting for their patients? You tell me….
Yes, I was angry at the government for what they have done, but now its become quite clear that it is PHYSICIANS {and pharmacists} that have allowed this illegal discrimination and criminalization of this patient population because of their OWN personal beliefs, and use the government as an EXCUSE to discriminate. Enough is enough! If they don’t want to do their jobs, then give nurses prescriptive and treatment authority!

Mark Ibsen

We have been inundated with patients seeking relief from refugee status.
We need coaching in how to accommodate
Upset patients…

Just had a staff meeting about this.
It is a rich opportunity to restore/reinvent relationships between patients and physicians.

Well said Dr Lewis.