National Academies of Medicine “Listening Session” For Clinicians – Caring for Patients with Chronic Pain

National Academies of Medicine “Listening Session” For Clinicians – Caring for Patients with Chronic Pain

On March 10, 2020, the National Academy of Medicine’s Action Collaborative on Countering the U.S. Opioid Epidemic  hosted a 90 minute “listening session” to “better understand the experiences and perspectives of clinicians caring for patients with chronic, non-cancer pain.” This was the second of two such sessions (the first was conducted with a selected panel of patients).  In both sessions, my overall impression is that NAM seems to be “stacking the deck” to lend support to the CDC Guidelines – essentially ignoring or marginalizing the enormous damage that these guidelines have done to patients, caregivers, and doctors. This is not a useful basis for policy.

The audio of the listening session will be made available online in the coming days. In the meantime, I have submitted the following commentary via an online form provided by the NAM Action Collaborative.

What successes have you had in providing care to patients with chronic pain?

Having listened to the comments of the medical professional panelists who participated in the NAM panel discussion, I cannot escape the impression that to some degree these participants seem to have been pre-filtered or hand-picked to represent points of view that are in many particulars wildly at variance to the lived experience of their patients. While some panelists alluded to the sharp differences in perception between doctors and patients, the causes of this divergence were largely unexamined or ignored.

It is fundamentally wrong and unethical to ascribe “drug seeking behaviors” to patients as a whole, whether inferred from patient misunderstanding or as an implied behavior of people addicted to opioid medications. As no less an authority than Dr Nora Volkow (Director of NIDA) tells us in NEJM, “addiction is not a predictable outcome of medical prescribing.” This principle seemed to be neatly set aside in the “listening” session.

Particularly vexing to a patient advocate like me was the prevailing opinion that despite “unintended consequences” or “mis-application” of the 2016 CDC opioid guidelines, the impact of that fatally flawed document was viewed as a “success”. The implicit assumption was made that mandated reduction of overall levels of opioid prescribing represents a “success” for medical practice overall. Also frustrating to patients was the assumption that “over-prescribing” is a significant cause of our present US opioid “crisis”. There is ample published medical evidence to disprove both premises.

Also of concern is casual acceptance of the deeply flawed assumption that co-prescription of benzodiazepine drugs and opioids is inherently dangerous. Benzodiazepines are an essential element of treatment for anxiety and depression. There are also no published trials establishing any threshold of effects in respiratory depression among live patients; all papers in this field are based on postmortem statistics.

See “Cohort Study of the Impact of High-Dose Opioid Analgesics on Overdose Mortality “, Dasgupta et al,   Pain Medicine, Volume 17, Issue 1, January 2016, Pages 85–98, https://doi.org/10.1111/pme.12907

What challenges have you had in providing care to patients with chronic pain?

The observations of the panelists with regard to challenges of current practice have some validity. Changes in State and Federal regulations and guidelines, insurance reimbursement and chain pharmacy prescribing policy have introduced great turbulence and burdensome paperwork into the profession. While law enforcement and State Medical Board threats to doctor licenses and prosecutions were mentioned tangentially, the full impact of these threats on patients was not adequately discussed. Hundreds of thousands of both legacy and new patients cannot now find a doctor who will treat their pain with the only means that are effective for many of them as individuals: opioid pain relievers. Doctors are running scared, and many of their patients are being deserted.

How have prescribing guidelines for prescribing/dispensing medications/opioids for chronic pain positively impacted the people in your care?

Panelist attention seemed to be focused on improvements in the coordination of multiple modalities of patient care. Also suggested was the idea that by making terms of treatment explicit, communications between doctor and patient should be improved, and patient expectations better managed. Missing in the discussion was any reference to the substantial body of published medical evidence that many of the therapy techniques recommended as alternatives to protracted use of opioids simply don’t work for the great majority of patients — and even when they do work, they offer only temporary improvements at the margins of treatment by analgesics and anti-inflammatory drugs. See the systematic outcomes review for non-invasive, non-pharmacological pain treatments, published in June 2018 by AHRQ.

Likewise mostly not addressed is the reality that ever more burdensome paperwork and reporting requirements are creating disincentives to treat patients, and driving more doctors out of pain management practice.

How have prescribing guidelines for prescribing/dispensing medications/opioids for chronic pain negatively impacted the people in your care? 

Some consideration was given by panelists to the negative impacts of guidelines on patients. But the nature of these impacts was for the most part attributed to “misapplication” of the guidelines, not to errors of fact and science that are now well established.

  1. Properly supervised opioid therapy is both safe and effective for the great majority of patients.
  2. In the most recently released CDC analysis of prescribing data, there is no correlation between rates of opioid prescribing and rates of opioid addiction or overdose mortality.
  3. The AMA has repudiated Morphine Milligram Equivalent Dose (MMED) as a basis for care planning and risk assessment. Many patients benefit from doses well above the 50/90 MMED thresholds identified by CDC.
  4. No presently available patient profiling instrument has useful predictive accuracy in flagging patients at elevated risk of either substance abuse disorder or mortality. (see “Opioid Treatments in Chronic Pain”, AHRQ report draft circulated October 2019). HHS criteria for “Excessive Utilizers” also have limited predictive accuracy in flagging patients at elevated risk of either substance abuse disorder or mortality.
  5. The final report of the 2019 HHS Pain Management Task Force states that there is no one-size-fits-all patient or treatment plan. One underlying reason for this reality is that the natural variability of human metabolism creates a very wide range of minimum effective dose levels due to genetic polymorphism in liver enzymes. Some patients need only minimal amounts (~20 mmed) to obtain pain relief; others may require doses that would knock over a horse (~1000 mmed or higher).

If you had a “magic wand”, what would you change in the health system to improve care for patients with chronic pain?

If I had a magic wand, the CDC would be directed to withdraw and disclaim the 2016 guidelines on opioid prescribing, on grounds of errors in fact and failure to communicate appropriate protections for both legacy and new patients. Any replacement document should implement AMA House of Delegates Resolution 235 (November 2018) and Board of Directors Study 22 (June 2019) as central principles of National pain care policy.

The core principle in opioid prescribing for chronic pain must again become titration to desired effects in the individual patient, while monitoring for and managing untoward side effects. Drug dependence is a consequence of long term treatment at high doses, and should never be confused with addiction.   Absent some indication of actual and quantifiable patient harms, forced (involuntary) tapering of opioids that have been beneficial to the patient in the past, should not be attempted. There are presently no published trials demonstrating benefits from mandated tapers. In the absence of effective alternatives to opioids, mandated tapers are irresponsible, dangerous, and medically unethical.

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Richard A Lawhern, Ph.D., is a frequent contributor to National Pain Report. He has over 22 years experience as a technically trained non-physician patient advocate, with 70+ published papers and articles in the field. He is a co-founder and former Director of Research for the Alliance for the Treatment of Intractable Pain.

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Steven

Thanks Red but we are dead.

Thank You “Red” Richard Lawhern. You should be on the CDC & HHS Board of directors. They sure would learn how Cronic Pain Patients live life with no help. Sitting day in & day out without a quality life is just exitings occupiling time. Don’t you think that we would like to be productive in life! I sure would!

Claudia Webber

Red: As always your comments hit the nail on the head..how not one caretaker, clinician, or the like did not bring up the harmful effects and tallying suicides due to misapplication is beyond me!

Our rights are vehemently being denied and it appears as though we are merely collateral damage!

A note for Lisa Dawn and others concerning AHRQ and their role in the CDC Guidelines.

The 2016 CDC Guidelines were substantially influenced by an AHRQ report titled “Opioid Treatments for Chronic Pain” issued in 2015. In October 2019, an update to that report was circulated in draft for 30 days to a select mailing list maintained by AHRQ — but never generally announced in the Federal Register.

These reports are remarkable not only for what they say but for what they omit. Both are silent with respect to fundamental issues of opioid metabolism that render any generalized “threshold of risk” estimate such as proposed in the CDC guidelines meaningless and void. However, the CDC has been repeatedly criticized (by me and by others) since 2016 for omitting consideration of such genetically mediated variations in minimum effective dose levels — so they KNOW that they’ve made a strategic omission. Also totally missing from the 2019 draft is any mention of the finding of the 2018-2019 HHS Task Force on Pain Management that there is no “one size fits all” patient or therapy plan.

Taken in combination, these omissions reveal a pattern of selective and biased analysis which I personally believe to be criminally fraudulent. A review of the details of the 2015 report as finally published also provide an indication for who the fraudulent actors were. One of the AHRQ contract supervisors of the published 2015 report was a member of PROP – Physicians for Responsible Opioid Prescribing – and should have recused himself from participation based on professional conflicts of interest. However this did not happen.

Anyone interested in reading the 2019 draft report may request it from me at lawhern@hotmail.com

Thomas Wayne Kidd

Thank you very much Lawhern you are very much appreciated. It’s a sad day when the medical profession looses it’s collective mind and allows such suffering to those who in their charge. Thanks again for your dedicated work on our behalf.

Stephen Godfrey

In our town 1 shop will fill a script out of 32.sad.

Stephen Godfrey

Leave it up to medical pain specialists@!!!

Jan G. Kramer

Exactly!!

Stuart

It’s as if pain patients are being forced to endure the same reoccurring nightmare night-after-night where “their” truth and “their” reality is of no relevance. Continuing to pretend the CDC guidelines were considered in any way beneficial to any of the involved parties is nonsensical. They are directly responsible for the needless pain and suffering of millions of innocent people and the premature deaths of thousands of others.

Yet, for no imaginable rationale they still remain. Who’s in charge of the insane asylum?

All these so called professionals talk out of both sides of their arsses. You all know don’t you, that they are just waiting for us to die off? At least Kolodney is & until absolutely forced he will not rescind his GL. Special place waiting for him & I hope he’s not expecting air conditioning because he won’t be getting it. I personally can’t wait to see him get thrown into the nice fiery place reserved especially for him.

Cindy too

I’m writing about the effect of coronavirus on CPP’s and on our docs.

We can’t miss our monthly pain appts if we want our Rx’s. This means that we’ll go to the appts even if we’re sick, as long as we’re able to move — so, risking contaminating staff and other patients, who then may contaminate more people.

And, there may be more drug shortages.

Govt wants us to keep extra food, etc, — including a minimum 30 day supply of all Rxs — which is impossible to do for opioids. (plus ever since 9/11, govt has said to do this, but it’s still impossible for opioid patients)

So, I’ve written this info to my state bd of medicine and state and fed legislators, and my county commissioner, asking them to:

“….. during this crisis,it would help if CPP’s: (1) could get larger Rx’s, and (2) could fill new Rx’s sooner than the current Day 29, and (3) would not have to go in person to pain docs each month if sick, but still be able to get Rx’s.”

(Day 29 is the magic day in my state)

I also wrote that —

If there are shortages of opioids which people in horrible and endless pain truly need to survive, then, aside from the unbearable pain they would face without their Rx’s, the sudden loss of these meds could bring on sudden death.

I cited 2 articles about sudden death brought on by sudden cessation of opioids, and wrote the articles’ Conclusions in my letter in addition to giving the links.

Here are the links:

https://www.practicalpainmanagement.com/sudden-unexpected-death-chronic-pain-patients

https://www.bmj.com/content/368/bmj.m283

I urge people to write similar letters to their legislators on every level, and bds of medicine, and any other agency/person they can think of.

Maureen M.

Thank you Red! As usual, very well written, and as always…I thank you from the bottom of my heart for fighting for us! God bless this work of yours and may it be well taken and desperate changes be made. Maureen M.

Lisa Dawn

“In both sessions, my overall impression is that NAM seems to be “stacking the deck” to lend support to the CDC Guidelines–essentially ignoring or marginalizing the enormous damage that these guidelines have done to patients, caregivers, and doctors.”

As a chronic pain patient, I find the CDC guidelines to be offensive. By 2018, the 2016 CDC Guidelines for Prescribing Opioids for Chronic Pain became a framework for policies, workers compensation guidance, and secondary payer guidelines (i.e., Medicaid). The CDC based its guidelines on an AHRQ review on the comparative effectiveness/risks of opioid therapy for chronic pain, and an AHRQ update to that review, commissioned by the CDC itself.

In 2019, New England Journal of Medicine (NEJM) reported- “some policies and practices purportedly derived from the guideline have in fact been inconsistent with, and often go beyond, its recommendations.” NEMJ also shared that a consensus panel report (Kroenke et al, 2019) found inconsistencies around inflexible application of recommended dosage/duration thresholds and policies related to hard limits/abrupt tapering of drug dosages, among others.

Well guess what?

Recently the AHRQ issued an “Evidence-based Practice Center Systematic Review Protocol” stating, “Of the 12 recommendations in the CDC guideline, all except for one (treatment for opioid use disorder) were deemed to be SUPPORTED BY LOW QUALITY EVIDENCE.” Thus, the AHRQ now states that a review/update is warranted on opioids for chronic pain, citing “the availability of new evidence, and concerns regarding potential unintended consequences of implementing the guideline (e.g., increased use of illicit opioids, increased suicidality, worsening quality of life or function)”.

It seems to me that following guidelines based on insufficient evidence should be considered unethical… maybe even illegal, pending future AHRQ findings. Perhaps we should hitch our wagons here and support AHRQ activities.

Chereese

Excellent response, Red with great references.
Thanks again for help and support in the pain community.
I sure hope things change soon.
It’s heartbreaking to read about all the #Suicidedue2Pain
The numbers are soaring.
This is wrong on every level.
God Speed.

Angela OBrien

Like what Rebecca said….no one cares!!!..UNLESS it affects them…

Kimberly

Richard A. (“Red”) Lawhern, Ph.D. Thank you so very much! Extremely knowledgeable. Forcing patients to reduce, forcing pain pumps just makes our health, minds, time, fears, quality of life great decrease

Heidi, Seattle WA

I have said it before, I will say it again: chronic pain patients are a suck on medical resources, so in order for socialized medicine to ‘work’ the herd must be thinned out. Once a socialist society becomes a reality, resources become finite, and we are well on our way to socialized medicine.

Nothing else makes any sense.

The needs of the many at the expense of the few, or the one.

Anon

The plutocracy rules. People lost children to overdose, non medical professionals decided to throw pain patients under the bus to fix it, and while they had the government busy doing that, the government failed to resupply our national stockpile for pandemics following swine flu in 2009. The response to coronavirus has been completely incompetent on a federal level. Maybe those in pain won’t have to be in pain much longer.

Cindy Calhoun

Bravo!!!!

Cathy. Isenberg

Since my pain meds had to change because of opioids I have been in bed not able to do much of anything. The pain I experience is from. RSD/CRPS which I have had since 1986. Thirty four years. My pain was somewhat manageable until the laws changed.
I now lay in bed constantly except for doctors appts.
I wish someone who is changing everything had to deal with my issues and then the would understand

Rebecca Hollingsworth

Nothing has changed and no one is listening. All of the so called “professionals”, and I use that term very lightly, are patting themselves on the back. Congratulating each other on what a great job they’ve done by pretty much eliminating pain patients lifeline which has always been opiod therapy. I’m not sure which is worse…reading this [edit] every day or feeling like [edit] every day. Both.

Audrey Lynn

👏👏👏