Monday, January 24, 2022

The Annual Assembly and COVID

by Christian Sinclair (@ctsinclair)

Last week, many hospice and palliative care clinicians and advocates received the unfortunate news that the 2022 Annual Assembly of Hospice and Palliative Care (#hapc22) was moving from hybrid (both in person and virtual) to virtual only. The board of directors of AAHPM and HPNA "considered the current strain on health care systems, personnel and their families" when making the decision. And then one week later, many presenters found out their presentations were not going to be in the virtual-only assembly. That is immensely disappointing. I received notice that my talks - on which colleagues and I had spent hours working - were canceled too. I was shocked at first, then mad, a little incredulous, then sad I would not get to share my work with a wider audience. Online, others shared similar emotions about the bad news. It really stinks.

I think it is critical to direct the majority of ire at COVID, which threw us all a curve ball with omicron. Honestly going into October and November, many clinicians I know were beginning to regain that hope and return to normal. The clinic visits were more often in-person (rather than telehealth). We had meetings with small groups in big rooms. All signs pointed to "Yes!" An in-person Annual Assembly in Feb 2022 seemed possible. So when you feel angry, make sure to direct that anger at COVID..

As for mitigation of risk, or different strategies, or communication planning around this issue, it is reasonable to ask for more information from the two organizations, but let's make sure we are asking the right questions and the right people. The strategy is the responsibility of the board of an organization. The staff of an organization is responsible for executing on the plan set out by the board. Boards need to make very difficult decisions. From personal experience, those conversations before the decision can also be quite challenging. I think the business meetings for both HPNA and AAHPM should be high on your priority list if you want to hear more about how we got here. If you want more information or have issues with how things were handled, reach out to board members to tell them what is important to you.

One thing to keep in mind is that leadership is likely feeling some of the same emotions we are feeling. I know this from personally working with the AAHPM and HPNA staff. They put a lot of time and effort into making the 2022 Annual Assembly happen, and now a lot of that work is lost. So when reaching out to them for clarification or giving feedback, make sure to appreciate the ripple effects of COVID and that many of these decisions are often more difficult than they appear on the surface.

And if you still don't like how leaders are making decisions, then consider running for a volunteer position. Influence in a way that you think is best. There are always volunteer roles to fill. And it offers a perspective that things are often more difficult than they appear on the surface.

And lastly,I'm sorry that your work and the work of your colleagues and mentees won't get the attention of a national meeting. And yet, the good work is done. It just needs a little extra effort to find a home. Like one of my favorite quotes from Austin Kleon, "Do good work, and put it where people can see it." Already online, there are venues like HAPC Virtual Didactics, Friday Chalk Talk, GeriPal, and even Pallimed, making themselves available to repurpose or rework content. Honestly, this is something I would love to see our field do more of. Don't stop at "Well, I presented at the Annual Assembly. My work is done here." Call up colleagues at other institutions and let them know you have an excellent presentation for their next grand rounds. Do a media tour for the field: pitch your content to your local news media or write an editorial for national outlets like NYT, WaPo, The Atlantic, etc. Write a paper and publish it in an academic journal. Some of this you can do all on your own, some of it may require activating your mentor and peer network. So yes, feel your feelings, and then get to work finding a home for your great work. All is not lost.



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Christian Sinclair, MD, FAAHPM is a palliative care physician at the University of Kansas Health System, editor-in-chief of Pallimed,and trying to keep up a resolution to write more about palliative care in 2022.

Monday, January 24, 2022 by Christian Sinclair ·

Monday, January 17, 2022

Difficult Conversations About Racism

by Christian Sinclair (@ctsinclair)

There are many difficult situations we encounter in palliative care and hospice. Our training and experience equip us with words and skills to explore emotion-inducing topics. Yet there are still moments many clinicians can be caught speechless, and one of those is when we encounter racist language in the midst of our work.

If I had to pick the most influential article in 2021, it would be "Power, Silence, and Debriefing: Hidden Harms When Palliative Teams Encounter Racism" by Rev. Florence Moss and Dr. Kate McKillip, published in the Journal of Pain and Symptom Management in June 2021. I have shared it numerous times with colleagues and trainees, so much so, "Moss McKillip" regularly autofills on my search engine.

I was reminded of the power of this article with Rev Moss and Dr. McKillip presented for Friday Chalk Talk* led by Dr. Martin Bazelak this past week. If you are looking for speakers for your next Grand Rounds, I would put these two on your 2022 short list.

The article is a case based format, stemming from a real consult in which a patient used a racial slur, and there was no response in the moment. What follows is a very open portrayal of the debrief, which touches on the harm caused and the missed opportunities for responding in a way which supports the anti-racist work we should be supporting in health care. I am so appreciative of the thoughtful and honest writing by the authors. It was difficult for me to read the first few times, because I would frequently reflect on missed opportunities I have had in my career. It hurts to reflect on moments you could reduce harm to others, but you didn't. This is an important step, and it gets easier to read, because you can focus on the framework McKillip and Moss give to make better choices in the future.

One critical point is our communication tools of empathic silence and immediate debrief are not enough to handle these situations. McKillip and Moss let us in on their inner thoughts as they work through this case. They did a lot of work together to make things better for their own future work alone and together. They could have kept this work private, but they transformed it into something that could have a much larger impact in the world. I am so appreciative. I have already put some of their work into practice.

This article differs from other important work like the 2016 NEJM article Paul-Emelie, Smith, Lo and Fernández, "Dealing with Racist Patients." Most articles focus on what to do about the care of the patient now and in the future if they ask to be reassigned. That is important to consider as well, but what I appreciate about McKillip and Moss' work is that it focuses on the team, and the role we all must have in working towards a more caring and supportive community at work.

COI: Peer-to-peer mentorship - Mckillip, Bazelak

*Friday Chalk Talk is a great weekly resource. I need to write about that too!

For more Pallimed posts about race and healthcare.
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For more Pallimed posts by Dr. Sinclair click here.



Christian Sinclair, MD, FAAHPM is palliative care physician working in outpatient clincs at the University of Kansas Health System in Kansas City, KS. He currently is inspired to learn more about low-car transportation planning in cities like Berlin.

Monday, January 17, 2022 by Christian Sinclair ·

Monday, January 3, 2022

Cloaked Suffering

by Lyle Fettig (@FettigLyle)

The suffering in our hospital is cloaked by tinted windows and shiny new steel, a serene architectural specimen which betrays the internal chaos of each person who experiences illness behind each door.

Even for people who work there, it is sometimes surreal to approach the building in its beauty with the dissonant knowledge of what can happen in all manner of disease in between the walls. It’s the perfect place to hide the devastation of a pandemic.

Were the death and agony in the streets for all to see, perhaps the choices that are obvious to you and me would be obvious to all. How could a person not take every step they could to prevent this ongoing calamity?

This is not the bubonic plague to be seen in the gutters but rather a plague silenced by the plastic of the tubes you have placed in many airways hoping that after days, Weeks, Months, those voices will be heard again, knowing that some will go unheard for all of eternity.

Speak the truth with the ferocity and compassion I always hear from you. Tell the world what you have witnessed. Then go back into it with pride that no matter how your message has been received, you can rest your weary head knowing you have done the best this world will allow.

Originally published on Twitter Dec 27, 2021



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Dr. Lyle Fettig is an Assistant Professor of Clinical Medicine in the Department of Medicine/Division of General Internal Medicine and Geriatrics. Dr. Fettig directs the IUSM Palliative Medicine Fellowship and works clinically with the Eskenazi Health Palliative Care Program.



Monday, January 3, 2022 by Pallimed Editor ·

Tuesday, November 30, 2021

Say No! More - A Video Game Review

by Matthew Tyler (@pallidad)

Consider the last time you said “Yes” to something when you would have preferred to have said “No.” Maybe you worried saying “No” would damage a relationship. Or maybe you didn’t want to put your job at risk. In Studio Fizbin’s Say No! More you assume the role of a corporate intern on a quest to reclaim their lunch stolen by upper management. You go to battle with your manager, the C-suite, and beyond, wielding the power of a word never-before spoken within the walls of your office. Say No! More demonstrates in an over-the-top fashion how being able to say “No” can be a positive.

Although silly on the surface, Say No! More addresses the matter of social conditioning. From the moment we are born, we are taught to associate the word “Yes” with being agreeable and “No” with being disagreeable. As we age, our desire to be perceived as agreeable leads us to answer “Yes” to almost any question, even when it works against our best interests. As a facilitator of serious illness discussions, I am always looking for a way to frame questions so that the person feels comfortable answering in a way that honors their genuine selves. I realize people will often reflexively answer “Yes” and so I will rework questions to remove the onus of answering “No.”

Sharing serious news with a patient requires an environment conducive to discussion, and a big part of that is getting the timing right. A mindful clinician might first ask the patient “Is this a good time to talk?” but this phrasing risks receiving that reflexive “Yes” whether it’s actually a good time or not. We can work around this dynamic by instead asking “Is this a bad time to talk?” That way, the patient can give a “Yes” and will follow up with when it would be a better time, or they reply with a “No” that allows them to feel ownership of the conversation that follows. Timing is equally important when calling a family on the phone (where many serious conversations have been taking place these days). I often find clinicians diving in with difficult news the moment they hear “Hello” on the other end of the line. The obvious problem is that the person receiving the call could be in the middle of an important meeting or stuck driving in traffic. Asking “Is this a bad time?” disrupts the autopilot responses so common on distracted phone calls and creates the opportunity to either say “Yes” in a way that protects their needs in the moment or say “No” in a way that helps shift their focus to the conversation at hand.

Clinicians wishing to address questions of life prolonging therapy will often ask their patients questions like, “Do you still want us to do everything?” or “Would you like to go home?” Both questions can be problematic as they bias towards an affirmative response. Experts in serious illness communication recommend asking patients about what matters most to them before jumping into choices. Once the patient’s values are made explicit, we can pose a question that necessitates introspection and a prioritization of values regardless of whether the answer is “Yes” or “No.” That may sound something like this: “I am hearing that spending as much time at home with your family is very important to you, but that you are also interested in this clinical trial. Would you be willing to risk that time at home for the chance to extend your life?” In this case, “No” allows the patient to establish clear boundaries on treatment to preserve what they value most, whereas “Yes” makes explicit the hierarchy of their priorities to help the clinician offer their best advice on next steps.

Palliative care aims to help patients take control of their lives in the context of a serious illness. Creating space for patients to say “No” when needed is one way to foster that sense of control. Next time you need to have an important conversation with someone, consider how that discussion may be enriched by giving them the opportunity to Say No! More.

This post has a companion piece video hosted by Digital Doc Games (embedded below). Check out the Digital Doc Games YouTube channel hosted by Dr. Amiad Fredman for videos on how video games have a huge power to have a positive impact on people's lives.



Say No! More is available to play on PC (Steam), iOS and Nintendo Switch systems.



For more Pallimed posts about games.
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For more Pallimed posts by Dr. Tyler click here.



Matt Tyler is a palliative care doctor in Chicago. If he's not watching Cocomelon with his daughters, he is probably playing video games.

References

1 Voss, C., Raz, T. (2017). Never split the difference: Negotiating as if your life depended on it. Random House Business Books

2 Ury, W. (2007). The power of a positive No: How to say No and still get to Yes. New York: Bantam Books.



Tuesday, November 30, 2021 by Pallimed Editor ·

Monday, November 22, 2021

The Limits of Advance Care Planning

by Michael Pottash (@mpottash)

Several luminaries of palliative care – writing in the Journal of the American Medical Association – recently outlined a strong case against advance care planning, referring specifically to advance directives and the efforts to plan for a future illness state. Planning for the end of life and documenting preferences was meant to improve “goal-concordant care” by providing a road map of a person’s wishes for the end of their life when they can no longer communicate for themselves.

When the United States Supreme Court ruled against the family of Nancy Cruzan, they effectively placed a limit on the right to refuse medical treatment for those unable to speak for themselves, declaring that while there may be a “right to die” even for an incapacitated patient, the state may require clear evidence to overrule its interest in the sanctity of life. In addition to the changing legal landscape came our growing anxieties around medical technology and its encroachment on the boundary between life and death. We have become enamored by the idea that clearly documented preferences, whether in a legal document or in a medical chart, could save us from some future purgatory between life and death.

As the advance directive industrial complex grew, it soon became en vogue to claim that the ubiquitous completion of these documents could even curb healthcare spending. The common wisdom became: 1) people don’t want aggressive medical interventions at the end of life - they want to die peacefully at home, and 2) medical interventions at the end of life (that people don’t really want anyway) is expensive, so 3) if we can get people to document their preferences, we can save a lot of money by avoiding unwanted, expensive medical interventions at the end of life.

The drum of discontent over advance care planning, especially advance directives, has been beating for a while now. In reviewing the landscape of evidence, it seems that advance directives may not be able to consistently influence end of life care in a measurable way. Therefore, it is not surprising that the theorized cost savings to the healthcare system never materialized. Not only do the vast majority of Americans not complete advance directives, but there is good evidence that they don’t actually want their documented preferences to be followed. They would rather have their doctor and someone they trust make those decisions in real time.

More concerning, focusing on advance directives may not even be ethical. It asks people to make decisions for their future disabled selves – often focusing on function and independence. Yet we know that people are generally more resilient than they believe and adapt to all kinds of changed and debilitated states. We also know that able bodied people tend to discount the quality of life of someone living with a disability, even when that person is our future selves. This issue alone has driven a wedge between the disability community and medicine, and continues to be a blemish on the otherwise inclusive culture of palliative care. There are serious ethical problems in asking people to decide today what their future selves would consider a life worse than death.

In the JAMA article, the authors recommend that advance directives and future-oriented conversations be deemphasized in favor of 1) documenting a healthcare surrogate - someone to relay our values and guide clinicians based on what they believe would be in our best interests - and 2) training clinicians to have “high-quality discussions” in the moment, when “actual (not hypothetical) decisions must be made.” That makes a lot of sense. And yet, we still require a framework for how to care for our patients before critical illness and end of life, for those patients still living with serious illness. What are the metrics of success if not completing advance directives or documenting future preferences? In our outcomes obsessed healthcare system, where is the value in informing our patients of what to expect in the future?

Perhaps a better framework for thinking about these future-oriented conversations is to be found in the work being done as part of Ariadne Labs Serious Illness Care Program and others like it. This program is training clinicians to have Serious Illness Conversations with their patients before they end up in the final stage or in intensive care. Instead of measuring success in outcomes, such as an advance directive or a documented preference, they want to know if patients and their clinicians find these conversations valuable. For example, they ask patients: 1) Did this conversation give you a greater (or lesser) sense of control? 2) Did you get the right amount of information from this discussion? And they ask clinicians: 1) Did you learn something surprising about your patient? 2) How did this discussion affect your patient’s emotional state? 3) Did your patient have a good understanding of prognosis? They seem to favor process questions: Were these conversations feasible, acceptable, and were you satisfied?

This approach to serious illness conversations – focusing on the process of informing and tending to emotion in lieu of attempts to influence future outcomes – may be a big (and possibly disappointing) paradigm shift for our outcomes-driven health system. Occasionally, Medicine’s role is to heal or to cure, sometimes it is to ease suffering, and often, all it can do is inform and provide counsel. It can be hard for us clinicians to realize that we cannot fix. Sometimes the only reason to do something is because it is what patients expect, it is what they need, and because it is the right thing to do. Is that enough of a reason to invest resources in hiring people to do this work, and to train others to become proficient? Though it may not lead to universal “goal-concordant care” or to cost savings, is it enough for us to do it because it is right? And can we live with that?

For more Pallimed posts about Advance Care Planning.
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Michael Pottash MD MPH is a Palliative Medicine Physician at MedStar Washington Hospital Center and Associate Professor of Medicine at Georgetown University School of Medicine.


Monday, November 22, 2021 by Pallimed Editor ·

Friday, September 17, 2021

Roger Chou’s Undisclosed Conflicts of Interest: How the CDC’s 2016 Guideline for Prescribing Opioids for Chronic Pain Lost Its Clinical and Professional Integrity

by Chad D. Kollas MD, Terri A. Lewis PhD, Beverly Schechtman and Carrie Judy

“I'm present. Uh … I do have a conflict. I receive funding to conduct reviews on opioids, and I'll be recusing myself after the um, director's, uh, um, um, uh… update.”

- Dr. Roger Chou, Center for Disease Control and Prevention (CDC) National Center for Injury Prevention and Control (NCIPC) Board of Scientific Counselors (BSC) Meeting Friday, July 16, 2021.

Introduction
For those familiar with the controversial relationship between the anti-opioid advocacy group, Physicians for Responsible Opioid Prescribing (PROP, recently renamed, Health Professionals for Responsible Opioid Prescribing), and the Centers for Disease Control’s CDC Guideline for Prescribing Opioids for Chronic Pain — United States, 2016, (2) (hereafter called “the 2016 Guideline”), Dr. Roger Chou’s disclosure represented a stunning admission (3, 4). Chou had originally announced his intention to help influence opioid policy in a 2011 article that he co-authored with PROP’s founders (5), and he was a bold signatory to PROP’s 2012 Petition to the Food and Drug Administration (FDA) to change opioid labeling (6; See Figures 1a and 1b: First page and signatory page.)

Figure 1a: First Page of PROP Petition to FDA


Figure 1b: Signatory Page of PROP Petition to FDA


Through his participation in these PROP activities, Chou established himself as a significant contributor to PROP efforts. Yet he never formally served as a leader or member of PROP, and until the CDC NCIPC-BSC Meeting on July 16, 2021, Chou avoided all allegations of conflicts of interest (COI) between his opioid research and co-authorship of the 2016 Guideline, unlike several other PROP members (2). Given that the CDC had strict reporting guidelines for COI’s for those involved in the creation of the 2016 Guideline, Chou’s startling disclosure raises many important questions about his involvement in the original publication. It also raises many concerns about his role in the creation of any “draft, updated and/or expanded Guideline (hereafter called the “2022 Guideline”) that might arise from such conflicts (7).

Did Chou fail to disclose a prior conflict of interest (COI) when he drafted the 2016 Guideline? Wouldn’t such a failure to disclose a past COI undermine the integrity of that Guideline? Does Chou’s recent COI disclosure compromise the integrity of the upcoming 2022 Guideline, even before its publication? In making such a mysterious disclosure, was Chou recusing himself from the July 16, 2021, CDC NCIPC/BSC meeting only, or did his statement refer to a recusal from the 2022 Revised and Expanded Guideline entirely? The answers to these questions have profound implications for the CDC’s Opioid Prescribing Guideline’s professional integrity and clinical credibility. This could, in turn, substantially bring into question the CDC’s entire national opioid policy, both in how it was applied in the past, as well as how it might be viewed in the future.

PROP’s Beginnings (2000-2015): Washington State’s War on Opioids in Labor and Industries (the state’s Workman’s Compensation Program)

The AMDG Pain Guidelines

Chou’s entanglement with competing interests began years before the CDC began the process of creating its 2016 Guideline, rooted in the state of Washington’s war on opioids prescribed to Labor and Industry recipients. In 2005, Gary Franklin, MD, MPH, Director of the Labor and Industry Program, who would later become PROP’s Vice President of State Regulatory Affairs, published an article alleging that “that tolerance or opioid-induced abnormal pain sensitivity may be occurring in some workers who use opioids for chronic pain (9).” He concluded that “[o]pioid-related deaths in this population may be preventable through use of prudent guidelines regarding opioid use for chronic pain (7).” Franklin also served on the Washington State Agency Medical Directors Group (AMDG) via the Washington State Department of Labor and Industries (9).

By 2007, the Washington State Agency Medical Directors Group (AMDG) published its “Interagency Guideline on Opioid Dosing for Chronic Non-Cancer Pain (8),” which was updated in 2010 and 2015 (11). This guide introduced the concept of a hard dosing threshold for opioid analgesics, despite an FDA criticism that the concept lacked scientific support and encouraged reduced opioid prescribing or tapering of opioid doses based on these arbitrary thresholds (2, 11). It was also used by the Washington State Department of Labor & Industries to guide prescribing for the state’s “Medicaid patients, Workers’ Compensation recipients, and state employees,” which led to increased use of methadone, which Franklin selected as a less expensive alternative to other opioid analgesics (12).

Harms from the Workmen’s Compensation Program and AMDG Pain Guidelines

The harms from the AMDG Pain Guidelines as applied to Washington’s Workers’ Compensation and Medicaid programs had become evident by 2009. Scott Fishman, MD, and Lynn Webster, MD publicly criticized AMDG’s hard dosing threshold for opioid analgesics, particularly regarding the use of methadone (15) They noted that while a “starting dosing regimen of 10 mg of methadone four times per day, as allowed by most conversion tables, would fall below the 120-mg morphine equivalent level… this amount of methadone [had] been fatal in some instances (15).” They further noted that the AMDG failed to collaborate with pain management experts when creating its guideline and cited formal opposition to the AMDG Guideline by multiple professional pain societies: the American Academy of Pain Medicine (AAPM), the American Pain Foundation (APF) and the American Pain Society (APS) (14).

In a Pulitzer-prize winning series published in the Seattle Times, investigative reporters Michael J. Berens and Ken Armstrong reported that while encouraging prescribers to use methadone may have saved the state of Washington millions of dollars, it also resulted in the deaths of many of the state’s Medicaid recipients (14, 16). The series highlighted the egregious harms suffered by Washington’s “Medicaid patients, Workers’ Compensation recipients and state employees” due to increased use of methadone, encouraged by Franklin via the AMDG Guideline (12). Their reporting prompted the state of Washington to “issue a public health advisory that singles out the unique risks of methadone” as contributing to the deaths of at least 2,173 people between 2003 and late 2011 (14). Despite the identification of these recognized harms, the forces behind the creation of the AMDG Guidelines broadened their efforts to reduce opioid prescribing when they joined forces with PROP, a group whose creation Chou had announced in a co-authored article in 2011 (4).

Exploring Chou’s COIs in co-authoring the Centers for Disease Control’s CDC Guideline for Prescribing Opioids for Chronic Pain — United States, 2016 (2008-2018)

The Significance of the CDC’s Reporting Requirements for Conflicts of Interest

Prior to participating in the creation of the 2016 Guideline, CDC stated the following with regard to handling potential conflicts of interest (COIs):

• Experts must reveal possible conflicts of interest, such as financial relationships with industry, intellectual preconceptions, or previously stated public positions (18).

• Experts could not serve if they had conflicts that might have a direct and predictable effect on the recommendations (Italics ours, 18).

• They ‘excluded experts who had a financial or promotional relationship with a company that made a product or that might be affected by the guideline.’ (18).

• They had reviewed potential nonfinancial conflicts carefully (e.g., intellectual property, travel, public statements, or positions, such as congressional testimony) to determine if the activities would have a direct and predictable effect on the recommendations (18).

• They determined the risk of these types of activities to be minimal for the identified experts (18).

• All experts completed a statement certifying that there was no potential or actual conflict of interest (18).

• Activities that did not pose a conflict (e.g., participation in Food and Drug Administration [FDA] activities or other Guideline efforts) were disclosed (18).



Based on this, CDC had two main categories of COIs for which it excluded participation in the creation of the 2016 Guideline: 1) financial conflicts and 2) non-financial conflicts, specifically a conflict that “might have a direct and predictable effect on the recommendations (18).” CDC originally published that no members (italics ours) of the 2016 Guideline Core Expert, Peer Reviewer, or Technical Expert groups had any COI’s that were in violation of CDC’s conflicts policies. However, years after the 2016 Guideline was published, members of PROP eventually disclosed multiple serious conflicts of interest. For example, PROP President, Jane Ballantyne, MD, disclosed “that she has served as a paid consultant to Cohen Milstein Sellers and Toll, PLLC, and has special advisory committee responsibilities on the Food and Drug Administration (FDA) Risk Evaluation and Mitigation Strategies Committee (18).” PROP Board Member, Gary Franklin, MD, MPH, disclosed “authorship of the AMDG Interagency Guideline on Prescribing Opioids for Pain (18).” Otherwise, the Core Expert Group (CEG) members and Opioid Guideline Workgroup (OGW), both of which included Chou, a PROP ally, “disclose[d] that they have no financial conflicts of interest (4,18).” Of note, Roger Chou, also disclosed no non-financial COIs related to the professional content of his contributions to the 2016 Guideline (18). Thus, it is now clear that the CDC did not hold the authors and contributors to the 2016 Guideline to its own clearly stated conflicts of interest and ethical policies.

Chou’s Non-Financial COIs in the 2016 Guidelines: Co-Authorship of Opioid Reviews and Professional Criticisms Regarding His Flawed Methodologies

In 2008, Chou authored an article for a special issue of Pain Medicine about interpreting and applying systematic reviews and clinical practice guidelines (19), an activity that one would have reasonably expected to “have a direct and predictable effect on the recommendations (18)” on the 2016 Guideline. A group of physicians, including the lead author of four articles in that same special issue of Pain Medicine (20-23), criticized Chou’s misinterpretation of pain guidelines by the American Society of Interventional Pain Physicians (ASIPP) in the special issue (24):

• They noted that Chou had “focused solely on randomized clinical trials; consequently, [the] evidence may be misinterpreted (24).”

• They further explained that it “is not the stringent standard which shows the evidence, or lack therefore of, but developing guidelines without appropriate expertise on the subject and randomized trials performed by non-specialist academicians (Italics ours, 24).

• They concluded that “[w]ithout any proof that evidence-based medicine is effective and it is based on evidence, it will be best if evidence synthesizers follow the rules appropriately, rather than injecting personal, biased opinions (Italics ours, 24.)”



Similarly, in 2010, a group of authors again took issue with Chou’s interpretation (25) of the American Pain Society (APS) Clinical Practice Guidelines for Interventional Techniques (23):

• Specifically, they wrote that Chou “utilized multiple studies inappropriately and… excluded appropriate studies (26).”

• They also asserted that Chou failed to eliminate bias in his evaluations of the APS Clinical Practice Guidelines for Interventional Techniques (24) …

• Which one would again reasonably expect to “have a direct and predictable effect on the recommendations (21)” on the 2016 Guideline.



Additionally, in 2014, Chou co-authored a systematic review and critical appraisal of guidelines for chronic pain (27). The article concluded, “Despite limited evidence and variable development methods, recent guidelines on chronic pain agree on several opioid risk mitigation strategies, including upper dosing thresholds; cautions with certain medications; attention to drug-drug and drug-disease interactions; and use of risk assessment tools, treatment agreements, and urine drug testing (27).” Ironically, in 2013 Chou had co-authored an AHRQ-sponsored article in which he stated, “Since evidence syntheses depend on the published literature accurately representing what’s known about medical therapies, reporting biases threaten the veracity of what we know (italics ours, 28). This indicates that Chou understood reporting bias, co-authored reviews of guidelines for managing chronic pain, but failed to report what a reasonable individual would correctly interpret as a conflict that “might have a direct and predictable effect on the recommendations,” prior to or during his co-authorship the 2016 Guideline (18). Under the CDC’s rules for inclusion in the creation process of its 2016 Guideline, Chou should have disclosed these conflicts before contributing as a co-author, and these conflicts should have disqualified him from participating in the process of creating the 2016 Guideline (Italics ours.) This is particularly concerning when taken in context with concerns about the strength of evidence upon which the 2016 Guideline were based. As the American Medical Association noted, “It seems incongruous that virtually all of the specific guidelines carry a graded recommendation that CDC believes should ‘apply to all patients with chronic pain and that… most patients should receive the recommended course of action,’ given the limitations of the evidence, especially where CDC experts’ opinions are the essential foundation for the recommendation (Italics ours; 29).”

Chou’s Financial COIs in Both Pain GLs: Funding from PROP/Group Health/Kaiser, AHRQ and the CDC Foundation

Chou also shared financial conflicts through his relationship with PROP and its funding, which “might have a direct and predictable effect on the recommendations” of the 2016 Guideline (18). As mentioned earlier, Chou was a co-author of a 2011 journal article that announced the formation of PROP, and while PROP has resolutely avoided identifying its donors over the last decade, Chou’s group received funding from Group Health Foundation, which lead-author, Michael Von Korff, disclosed as a potential conflict of interest at the time (4). The Group Health Foundation and PROP co-sponsored a National Summit on Opioid Safety on October 16, 2012 (30), during which Chou provided the keynote address, acknowledged funding from the Agency for Healthcare Research and Quality (AHRQ), and disclosed a financial relationship with Palladian Health for implementation of low back pain guidelines (31).

Palladian Health described itself as “comprehensive muscular skeletal health care company that integrates physical therapy, chiropractic, health and fitness with patient care advocacy to improve clinical and economic outcomes,” and listed Chou as a member of its Clinical Advisory Board (32). This represented a conflict with both financial and non-financial implications for his co-authorship of the 2016 Guideline. More importantly, Oregon Health and Science University (OHSU), Chou’s employer, announced on August 31, 2012, that it had received from AHRQ a five-year contract to serve as an Evidence-Based Practice Center, which funded Chou’s work (33). In the 2016 Guideline, Chou acknowledged that he had represented the Oregon Health and Science University with funding from his 2014 systematic review and critical appraisal of guidelines for chronic pain coming from AHRQ Grant HS17954 (18). This marked the beginning of an early funding loop between PROP (through Group Health Foundation, at that time) and AHRQ for work that Chou used to create the 2016 Guideline.

Over the next several years, Chou would expand this tangled web of financial conflicts of interest by adding the CDC Foundation as an indirect funder for his clinical reviews on opioid analgesics. According to its website, “The CDC Foundation is an independent nonprofit and the sole entity created by Congress [in 1992] to mobilize philanthropic and private-sector resources to support the Centers for Disease Control and Prevention’s critical health protection work (34, 35).” Of note, as part of its policy to avoid conflicts of interest, the CDC Foundation is prohibited from “[p]artnership with an organization that represents any product that exacerbates morbidity or mortality when used as directed (36).

Kaiser Permanente acquired Group Health Cooperative in 2017 and formed a new 501(c)(4) foundation from the proceeds from the acquisition, which “was previously part of Group Health Cooperative [but would then] operate collectively as ‘Group Health Foundation’ (37, 38).” The Kaiser Foundation Hospitals Centers for Health Research, which is part of the Kaiser Permanente Center for Health Research (39), is listed as a philanthropic donor to the CDC Foundation (40). In retrospect, Kaiser Permanente attended, as an invited guest, a 2015 online CDC webinar during which the CDC unveiled the 2016 Guideline, which was met with fierce criticism from other medical professional stakeholders (41). By the time the 2016 Guidelines were released, the CDC Foundation was firmly established as part of the Chou self-funding loop already created by PROP/Group Health/Kaiser Permanente and AHRQ.

On November 20, 2018, Chou’s employer, the Oregon Health and Science University, received a delivery order, funded by the AHRQ under Evidence-based Practice Centers, with a potential value of $500,000 (42). The streaming of this funding became clearer in December 2019, when the AHRQ awarded the Pacific Northwest Evidence-based Practice Center (EPC), a program within OHSU directed by Roger Chou, a five-year contract “to develop evidence reviews to inform healthcare decision-making [sic]; promote the uptake of evidence, including health systems; and invest in research methods to improve the quality, usefulness and efficiency of evidence reviews (43).” Chou publicly acknowledged his funding from AHRQ in a presentation at AMDG's "Patient-Centered Approach to Chronic Opioid Management Conference," held on August 9, 2019 (45). Chou, again publicly, albeit in a quiet, subtle way, acknowledged his AHRQ funding as a relevant financial COI in a correction to an article published in Annals of Internal in November 2019 (46, 47). The full extent of Chou’s COI disclosure is only revealed when one follows the link to the article’s complete International Committee of Medical Journal Editors (ICMJE) Disclosure of Interest form (48). Furthermore, while Chou disclosed his financial relationships with AHRQ and CDC related to “funding to conduct reviews on opioids for chronic pain,” he characterized this conflict as relevant activity outside of the submitted work (48). In doing so, he avoided being directly identified as failing to disclose a COI in the Correction published by Annals of Internal Medicine, which explicitly called out PROP members Anna Lembke, MD and Jane Ballantyne, MD, instead (47). More specifically, Ballantyne finally disclosed her involvement with PROP and her consultative fees for consulting in the multibillion-dollar Multi District Opioid Litigation. Lembke also took this belated opportunity to disclose her involvement with PROP (47, 48). They also clarified that the article had misrepresented PROP as “A 501(c)(3) charitable organization (47, 48),” although “PROP is not a registered charity with the Internal Revenue Service (49).”

The Yet-to-be-Released, Revised and Expanded 2022 Guideline (2018-Present)

By the end of 2019, AHRQ had delivered the full amount of its $500,000 award to OHSU for the work done by Chou’s Pacific Northwest EPC (50), and unbeknownst to anyone but the CDC, Chou had moved on to co-authoring the expanded 2022 Guideline. Just a few months later, in April 2020, PROP and Chou were again linked to an AHRQ-funded study examining the “effectiveness of opioids in treating chronic pain (51).” In trying to determine whether PROP and Chou would be involved in writing the 2022 Guideline, Pain News Network filed a request to CDC under the Freedom of Information Act (FOIA). However, PNN received 1,500 pages of documents “so heavily redacted they were completely blank (52, 53; See Figure 2 Below). PNN has filed an appeal for the CDC’s violations of this FOIA request.

Figure 2: CDC’s Redacted Replies to the FOIA Request from PNN




In June 2021, the AHRQ solicited public comments on its Draft Report on Integrated Pain Management Programs, although the draft report is no longer available for review (53, 54). Many stakeholders submitted review comments, including the lead author on this article, who expressed a concern about the AHRQs policy for handling potentials COIs in its report, specifically AHRQ’s statement that “Technical Experts must disclose any financial conflicts of interest greater than $5,000 and any other relevant business or professional conflicts of interest. Because of their unique clinical or content expertise, individuals with potential conflicts may be retained. The TOO and the EPC work to balance, manage, or mitigate any potential conflicts of interest identified (55).”

A month later, during the Roll Call for the Center for Disease Control and Prevention (CDC) National Center for Injury Prevention and Control (NCIPC) Board of Scientific Counselors (BSC) Meeting, Roger Chou disclosed a COI related to receiving “funding to conduct reviews on opioids (1).” In the BSC-NCIPC meeting’s immediate aftermath, participants posted written comments that cited Chou’s COI disclosure as a cause for questioning the legitimacy of his role in co-authoring both sets of Opioid Prescribing Guidelines, especially because of his long-term relationship with PROP (2, 56). Advocate Tamera Lynn Stewart offered live comments during the meeting that bluntly addressed concerns about Chou’s financial COIs (57): “Chou’s been involved in calling for opioid guidelines or restrictions since around 2011. The CDC gets funding for these guidelines, the CDC pays AHRQ to write reviews on which these guidelines are going to be based. AHRQ not only contracts with Dr. Chou to conduct reviews of the opioid studies, but Chou also helped set the AHRQ priorities. Chou is one of the five authors who wrote the draft of the [CDC Opioid Prescribing] Guidelines based on the reviews he was paid to create. Finally, Chou is on the Board of Scientific Counselors, who approves or denies any opposition comments from the (Opioid) Working Group and, being on the BSC, Chou has a say in the final approval of the Guidelines themselves. All of this, and there’s no mention of a conflict of interest until today, July 16th, around 9 AM (57).”

Ultimately, the Opioid Work Group (OWG) of the CDC NCIPC-BSC expressed multiple serious concerns about the 2022 Guideline, “warning the CDC that a draft revision of its 2016 Opioid Prescribing Guideline is focused too heavily on the risks of taking opioid medication, with not enough attention paid to the benefits that opioids have for many pain patients (58).” Chou’s COI disclosure and recusal from the CDC BSC-NPIPC meeting on July 16, 2021, also had many stakeholders wondering whether this signaled an end to his involvement in the further development and roll-out of the 2022 Guideline (1). The answer came at the next scheduled meeting of the CDC BSC-NPIPC, when, on July 29, 2021, during the Roll Call, Chou listed himself as, “Present, no conflicts (59).” This implies that his COI disclosure and self-recusal during the CDC NCIPC-BSC Meeting on July 16, 2021 (1), was meant only for that meeting.

Growing Evidence of Emerging Harms from the CDC Pain Guidelines

Harms from Opioid Tapering

By early 2018, it became increasingly clear to clinicians that misapplication of the Chou co-authored 2016 Guideline had begun to result in serious patient harms (60). This included concerns about a growing number of “suicides within and outside of the Veterans Affairs Healthcare System in the United States” from forced or involuntary tapers off opioid analgesics (60). In response to growing reports of patient harms from misguided opioid policies, in November 2018, the American Medical Association adopted a new policy that opposed hard dosing limits for opioid analgesics, encouraged individualized care when prescribing opioids, and called for the AMA to advocate against ongoing misapplication of the 2016 Guideline (61). By March 2019, an array of medical professional stakeholders had submitted written requests to CDC to speak out against misapplication of its 2016 Guideline, especially regarding their opposition of involuntary opioid tapers due to rising concerns about patient harms (62-64). These efforts prompted both the Food and Drug Administration (FDA) and the CDC to issue public announcements opposing the sudden discontinuation of opioid pain medicines and misapplication of the 2016 Guideline (65-67).

Despite these warnings, researchers have documented growing clinical evidence of patient harms arising from CDC’s opioid policies. In May 2019, Medicaid patients in Vermont who experienced “faster rates of opioid tapering” suffered from “a greater probability of adverse events” than those not tapered or tapered more slowly (8). An August 2019 study noted that opioid tapering was associated with termination of care in 78 of 207 cases (38%), prompting the authors to recommend caution when considering tapers and calling for more research to “fully understand the risks and benefits of opioid tapers (69).” By March 2020, a group researching patients in the Veterans Health Administration observed that “patients were at greater risk of death from overdose or suicide after stopping opioid treatment, with an increase in the risk the longer patients had been treated before stopping (70).” They further noted that “strategies to mitigate the risk in these periods are not currently a focus of guidelines for long term use of opioids (70).” Results such as these prompted a group of clinicians to conclude in June 2020 that policies mandating nonconsensual opioid dose reductions are “not justified clinically or ethically (71).” More recently, a retrospective cohort study of pharmacy claims and enrollment data found that “among patients prescribed stable, long-term, higher-dose opioid therapy, tapering events were significantly associated with increased risk of overdose and mental health crisis (72).

Harms to Patients with Cancer Pain or Receiving Palliative Care


Of greater concern than harms from tapers, several 2021 studies suggest that misapplication of the 2016 Guideline has begun to affect patients who were not intended targets for the 2016 Guidelines: patients with cancer pain or those receiving palliative care. Specifically, “the Guideline [was] not intended for patients undergoing active cancer treatment, palliative care, or end-of-life care because of the unique therapeutic goals, ethical considerations, opportunities for medical supervision, and balance of risks and benefits with opioid therapy in such care (2).” For reasons that were not clarified by its authors, the 2016 Guideline apply to “cancer survivors with chronic pain who have completed cancer treatment, are in clinical remission, and are under cancer surveillance only (2),” without considering legacy status or the frequent presence of well-recognized chronic, cancer-related pain syndromes, which often require multi-modal care for sufficient management, including opioid analgesia, when medically appropriate (73).

In a recent study examining prescriptions dispensed to patients with painful bone metastasis from active cancer using a large commercial claims database, opioid prescribing declined significantly between 2011 and 2017 (74). The authors expressed concerns that claims data did “not provide information regarding clinical indication or appropriateness of opioid prescriptions,” and expressed worry that a decline in opioid prescribing to this group of patients may lead to “a rising rate of undertreated pain (74).” A similar study examined Emergency Department (ED) visits by patients dying from cancer and observed that “opioid use among patients dying of cancer has declined substantially from 2007 to 2017. Rising pain-related ED visits suggests that EOL cancer pain management may be worsening (75).” Furthermore, a recently published study that used structured interviews of patients with advanced cancer found that “the US opioid epidemic has stigmatized opioid use and undermined pain management in individuals with advanced cancer (76).” Despite growing evidence of increasing harms to patients, the CDC has not issued any additional, substantive announcements since April 2019 (67). In fact, despite acknowledging inaccuracies in its own overdose death data, the CDC recently doubled down on rhetoric about prescription opioids: “Regardless of the method used to calculate the total numbers, prescription opioids continue to be involved in a significant proportion of drug overdose deaths (77).”

Where Should We Go from Here?

In this article, we have provided substantial evidence that Roger Chou’s conflicts of interests, undisclosed to the public before the July 16, 2021, had “a direct and predictable effect on the recommendations” contained within the 2016 Guideline, the very language used by the CDC to define a relevant conflict. By virtue of his COI disclosure on July 16, 2021, Chou’s role as a co-author and reviewer of the 2022 Guideline has compromised the professional and clinical integrity of the 2016 Guidelines, and the entire creation process of the Guideline has undermined the credibility of the CDC. Put simply, Roger Chou has been placed in the position of “advocating his own work as national healthcare policy (78).” Despite this, when confronted by stakeholders about harms arising from misapplication of the Pain Guidelines, the CDC response was limited at best (67) or defiant at worst (78).

Given this, we offer the following robust recommendations, several of which enjoy the support of prominent stakeholders seeking balanced opioid policy (79, 80):

1) The CDC should immediately rescind the most harmful or misapplied portions of the 2016 Guideline. This should include renouncing and rescinding arbitrary dosing thresholds, commonly referred to as MME, by health insurers, state and federal governments and pharmacies (81). It should also include a ban against involuntary opioid tapers.

2) The CDC should announce its strong commitment to balanced opioid policy, including individualized care for patients with chronic pain, explicitly acknowledging that some patients with chronic pain – especially those with serious illness – may benefit from treatment of opioid analgesics when medically appropriate.

3) The CDC should suspend indefinitely any plan to implement its 2022 Guideline, which are currently expected to be published in the Federal Register in late 2021. (82).


In addition to these measures, we call on the United States Congress or the U.S. Department of Justice to investigate Roger Chou, PROP and the Centers for Disease Control to determine whether they violated any federal laws or policies when creating either the 2016 or the expanded 2022 Opioid Prescribing Guidelines. We also encourage legal scholars to examine the harms inflicted upon patients with chronic pain as result of the 2016 Guideline, or from their misapplication, to determine whether these harms could be remedied through litigation. Undoing the ongoing harms of the CDC’s Opioid Prescribing Guideline for Chronic Pain and preventing further harms from the expanded 2022 Guideline - which were drafted with all the same ethical conflicts of the 2016 Guideline yet will affect even more patient populations - is an imperative for all invested in public health and the treatment of pain. Undoing the harms of the CDC Pain Guidelines represents a critical step in restoring balanced pain policy, which must include access to judiciously prescribed opioid analgesics, to the millions of Americans living with chronic pain every day of their lives.

About the Authors

Lead author, Chad Kollas, serves as the Medical Director for Palliative and Supportive Care at the Orlando Health Cancer Institute in Orlando, FL. He can be reached by e-mail at chad.kollas@orlandohealth.com or via Twitter at @ChadDKollas.

Terri A. Lewis serves in Rehabilitation and Mental Health Counseling, National Changhua University of Education (NCUE), in Changhua, Taiwan/Republic of China.

Bev Schechtman is a chronic pain and illness patient who has spent the last four years volunteering as a patient advocate. She is currently the VP of the non-profit, The Doctor Patient Forum, and she has been with the volunteer organization, Don't Punish Pain, since its inception in 2017. She is a passionate researcher and advocate and hopes to give a voice to those in pain.

Carrie Judy is an unpaid contributor and researcher at The Doctor Patient Forum.

Competing Interests

Dr. Kollas currently serves as the Secretary of the Board of Directors of the American Academy of Hospice and Palliative Medicine (AAHPM). He also serves as the AAHPM Delegate to the American Medical Association (AMA) House of Delegates, he is the Chair of the AMA Pain and Palliative Medicine Specialty Section Council and is a member of the AMA Opioid Task Force. Dr. Kollas has provided testimony at a 2004 Congressional Hearing on OxyContin. Dr. Kollas has served as a medical expert witness in cases involving opinions regarding the standard of care in internal medicine and hospice and palliative medicine. He has received educational research grants from the AMA Education and Research Foundation, Geisinger Clinic and M. D. Anderson Cancer Center Orlando. He serves as the editor for the Advocacy section of AAHPM Quarterly and is a member of the Editorial Advisory Board and review for the Journal of Pain and Symptoms Management. He has also served as a reviewer for the Journal of Palliative Medicine, Annals of Internal Medicine, Journal of General Internal Medicine, Journal of Graduate Medical Education, and the Educational Clearinghouse for Internal Medicine.

Dr. Lewis, Ms. Schechtman and Ms. Judy report no competing interests.

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Pallimed posts by Dr. Kollas click here. References

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53. See, for example, https://www.aapmr.org/members-publications/member-news/member-news-details/2021/06/08/ahrq-seeks-comments-regarding-two-pain-management-systematic-reviews.

54. Formerly https://effectivehealthcare.ahrq.gov/products/integrated-pain-management/draft-research. As of August 24, 2021, this link is no longer active; please contact the authors for a PDF copy of this document.

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61. See Resolution 235 at https://www.ama-assn.org/system/files/2018-11/i18-refcomm-b-annotated.pdf.

62. Health Professionals for Patients in Pain (HP3), led by Alford DP (and including Kollas CD). Professionals Call on the CDC to Address Misapplication of its Guideline on Opioids for Chronic Pain through Public Clarification and Impact Evaluation. March 6, 2019. See https://healthprofessionalsforpatientsinpain.org/the-letter-1.

63. Carlson RW, et al. Letter to Deborah Dowell, Chief Medical Officer, Opioid Response Coordinating Unit, CDC National Center for Injury Prevention and Control. February 13, 2019. See https://www.asco.org/sites/new-www.asco.org/files/content-files/advocacy-and-policy/documents/2019-NCCN-ASCO-ASH-Letter-CDC.pdf.

64. Nicholson KM, Hoffman DE, Kollas CD. Overzealous use of the CDC’s opioid prescribing guideline is harming pain patients. Stat News, December 6, 2018. See https://www.statnews.com/2018/12/06/overzealous-use-cdc-opioid-prescribing-guideline/.

65. FDA Drug Safety Communications. FDA identifies harm reported from sudden discontinuation of opioid pain medicines and requires label changes to guide prescribers on gradual, individualized tapering. April 9, 2019. See https://www.fda.gov/media/122935/download.

66. FDA Drug Safety Podcast. FDA identifies harm reported from sudden discontinuation of opioid pain medicines and requires label changes to guide prescribers on gradual, individualized tapering. April 17, 2019. See https://www.fda.gov/drugs/fda-drug-safety-podcasts/fda-identifies-harm-reported-sudden-discontinuation-opioid-pain-medicines-and-requires-label-changes#:~:text=On%20April%209%2C%202019%20FDA,%2C%20psychological%20distress%2C%20and%20suicide.

67. CDC Media Relations. CDC Advises Against Misapplication of the Guideline for Prescribing Opioids for Chronic Pain. Embargoed Until: Wednesday, April 24, 2019, 5 PM, EDT. See https://www.cdc.gov/media/releases/2019/s0424-advises-misapplication-guideline-prescribing-opioids.html.

8. Mark TL, Parish W. Opioid medication discontinuation and risk of adverse opioid-related health care events. J Subst Abuse Treat. 2019 Aug;103:58-63. doi: 10.1016/j.jsat.2019.05.001. Epub 2019 May 5. PMID: 31079950.

69. Perez HR, Buonora M, Cunningham CO, Heo M, Starrels JL. Opioid Taper Is Associated with Subsequent Termination of Care: a Retrospective Cohort Study. J Gen Intern Med. 2020 Jan;35(1):36-42. doi: 10.1007/s11606-019-05227-9. Epub 2019 Aug 19. PMID: 31428983; PMCID: PMC6957663.

70. Oliva EM, Bowe T, Manhapra A, Kertesz S, Hah JM, Henderson P, Robinson A, Paik M, Sandbrink F, Gordon AJ, Trafton JA. Associations between stopping prescriptions for opioids, length of opioid treatment, and overdose or suicide deaths in US veterans: observational evaluation. BMJ. 2020 Mar 4;368:m283. doi: 10.1136/bmj.m283. PMID: 32131996; PMCID: PMC7249243.

71. Kertesz SG, Manhapra A, Gordon AJ. Nonconsensual Dose Reduction Mandates are Not Justified Clinically or Ethically: An Analysis. J Law Med Ethics. 2020 Jun;48(2):259-267. doi: 10.1177/1073110520935337. PMID: 32631183; PMCID: PMC7938366.

72. Agnoli A, Xing G, Tancredi DJ, Magnan E, Jerant A, Fenton JJ. Association of Dose Tapering With Overdose or Mental Health Crisis Among Patients Prescribed Long-term Opioids. JAMA. 2021 Aug 3;326(5):411-419. doi: 10.1001/jama.2021.11013. PMID: 34342618; PMCID: PMC8335575.

73. Levy MH, Chwistek M, Mehta RS. Management of chronic pain in cancer survivors. Cancer J. 2008 Nov-Dec;14(6):401-9. doi: 10.1097/PPO.0b013e31818f5aa7. PMID: 19060605.

74. Zhang H, Paice J, Portenoy R, Bruera E, Reid MC, Bao Y. Prescription Opioids Dispensed to Patients with Cancer with Bone Metastasis: 2011-2017. Oncologist. 2021 Jul 6. doi: 10.1002/onco.13898. Epub ahead of print. PMID: 34227175.

75. Enzinger AC, Ghosh K, Keating NL, Cutler DM, Landrum MB, Wright AA. US Trends in Opioid Access Among Patients With Poor Prognosis Cancer Near the End-of-Life. J Clin Oncol. 2021 Jul 22:JCO2100476. doi: 10.1200/JCO.21.00476. Epub ahead of print. PMID: 34292766.

76. Azizoddin DR, Knoerl R, Adam R, Kessler D, Tulsky JA, Edwards RR, Enzinger AC. Cancer pain self-management in the context of a national opioid epidemic: Experiences of patients with advanced cancer using opioids. Cancer. 2021 Sep 1;127(17):3239-3245. doi: 10.1002/cncr.33532. Epub 2021 Apr 27. PMID: 33905550; PMCID: PMC8355015.

77. Lawhern R. Time for Heads to Roll at the US National Center for Injury Prevention and Control. American Council on Science and Health, August 26, 2021. See https://www.acsh.org/news/2021/08/26/time-heads-roll-us-national-center-injury-prevention-and-control-15759.

78. See https://www.cdc.gov/opioids/data/analysis-resources.html.

79. Mukkamala B. AMA Letter to Gwendolyn H. Cattledge, PhD, MSEH, Deputy Associate Director for Science, National Center for Injury Prevention and Control Centers for Disease Control and Prevention. July 22, 2021. See https://searchlf.ama-assn.org/letter/documentDownload?uri=%2Funstructured%2Fbinary%2Fletter%2FLETTERS%2F2021-7-22-Letter-to-Cattledge-re-CDC-BSC-Comments-final.pdf.

80. Deutsch J. AMA backs update to CDC opioid prescribing guidelines. July 22, 2021. See https://www.ama-assn.org/press-center/press-releases/ama-backs-update-cdc-opioid-prescribing-guidelines?utm_source=twitter&utm_medium=social_ama&utm_term=5205422460&utm_campaign=Advocacy&utm_effort=FBB009.

81. Dasgupta N, Wang Y, Jungjun B, Kinlaw A, Chidgey B, Cooper T, Delcher C. Inches, Centimeters and Yards: Overlooked Definition Choices Inhibit Interpretation of Morphine Equivalence. FDA Workshop, June 7-8, 2021. See https://www.fda.gov/media/150403/download.

82. Anson P. Revised CDC Opioid Guideline Not Expected Until Late 2022. Pain News Network, July 9, 2021. See https://www.painnewsnetwork.org/stories/2021/7/9/revised-cdc-opioid-guideline-not-expected-until-late-2022.



Friday, September 17, 2021 by Pallimed Editor ·

Wednesday, July 14, 2021

How Spiritfarer Helped Me Through the Pandemic

by Matthew Tyler (@PalliDad)

During what can only be described as a challenging year, I found Thunderlotus’s game Spiritfarer just in the nick of time. In this “cozy management game about dying,” you assume the role of a young woman named Stella who is charged with shuttling spirits to the gates of the afterlife. Unexpectedly, Spiritfarer served as both an escape from and means of processing my experience as a healthcare worker during the pandemic.

From top to bottom, Spiritfarer exudes tranquility. The animations are bright and vibrant, and the music is soothing yet melancholy, invoking nostalgia for younger innocent days. With this backdrop, you spend your time in game managing the physical and emotional needs of your passengers. This entails gathering materials to upgrade your boat’s ability to reach more distant islands, constructing customized quarters to accommodate your growing roster of spirits, and cooking meals uniquely suited to each passenger’s preferences. I was especially delighted to learn I could hug passengers to boost their mood, though sometimes they will decline your offer - bonus points to the devs for promoting autonomy! Your efforts are reflected in the mood of each spirit - as it improves they share more about their lives. Ultimately, each story arc culminates in a heartfelt goodbye at the gate to the afterlife. For most of the spirits, at least.


One day, I was passing by the home of one of my favorite companions and saw the outside had been covered with flowers. My stomach lurched. Flowers only appeared after a spirit had passed through the gate, but how could this spirit already be gone? I hadn’t finished their storyline or said goodbye. What kind of closure was that?

At that moment, I was flooded with memories of conversations where I had to tell someone that their loved one was dying from COVID. Since our hospital restricted visitors I never knew the faces of these family members, just their tortured voices as I broke the terrible news by phone. I did this over and over again every day for what felt like an eternity. There were no proper goodbyes for these families. There was no closure, because how could there be? The breakneck pace someone could go from healthy to dying was impossible to wrap their heads around. It was impossible to wrap my head around it too.

In palliative care, we provide the medical knowledge necessary to help patients and families prepare for the future. We don’t talk about how that knowledge helps clinicians cope as well. Understanding how an illness progresses gives us mental schema to process the suffering to which we must bear witness. Yes, it’s awful to tell someone that the last line of cancer treatment didn’t work. But because we know the trajectory of metastatic cancer, it’s a conversation we mentally prepare to have at some point. There was no pre-existing narrative for COVID to emotionally brace ourselves for what was coming. So while I worked hard to navigate the devastation in the most optimal (or least terrible) way, I simultaneously resented the need. None of these people were supposed to be dying in the first place.

Spiritfarer was a gentle nudge to loosen my grip on how I think the future is “supposed to” look. It reminded me that, scale aside, COVID does not hold a monopoly on unanticipated loss in this world. Nor does working adjacent to death afford any control over it. Though the lesson goes deeper than that. Even if we can’t control how or when someone’s story ends, we are still encouraged to play our role in it. We keep working to discover our companion’s favorite dish. We take a moment to embrace them when they are feeling low. We hold space to listen to their stories and what is most important to them. Spiritfarer drives home that the inability to control an outcome does not mean we can’t be active participants in the process. And ultimately, taking care of our community is how we shape our future. So we chart the best course we can, and let the open water take us.

Spiritfarer is available to play on PC (Steam), Xbox, Playstation and Nintendo Switch systems.

This post has a companion piece video narrated by Dr. Matt Tyler and hosted by Digital Doc Games (embedded below). Check out the Digital Doc Games YouTube channel hosted by Dr. Amiad Fredman for videos on how video games have a huge power to have a positive impact on people's lives.





For more Pallimed posts about grief.
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For more Pallimed posts by Dr. Tyler click here.
For more Pallimed posts on video games, click here.

Matt Tyler is a palliative care doctor in Chicago. If he's not watching Cocomelon with his daughters, he is probably playing video games or making palliative care skits on TikTok.





Wednesday, July 14, 2021 by Pallimed Editor ·

Monday, June 14, 2021

Two Ways to Share your Palliative Care and Hospice Stories

by Christian Sinclair (@ctsinclair)

This past few days, I came across two great opportunities that I wanted to share with a wider audience of hospice and palliative care clinicians.

First is the podcast and radio show, Radiolab. I've always appreciated the nuance and simplicity the creators can bring to complex issues. They are looking for voice memos from people who work in end-of-life care. They are also looking for patients and families who have been impacted by this work. All you have to do is record a 60-seconds or less voice memo and email it to wnycradiolab@gmail.com. Make sure to include your name, city, and your position or connection to the work. For the official ask see the graphic on this post or this link on Twitter. Share it with your teams!

Second is a project by Dr. Kayla Sheehan, who has written for Pallimed before. She is looking for hospice and palliative care physicians to share their origins stories on how they discovered this work. The answers are intended to be anonymous, so share as much as you feel comfortable. The link is here - https://dk9n3b78ef9.typeform.com/to/yCxDYZzR

For more Pallimed posts about the profession, click here.
For more Pallimed posts by Dr. Sinclair, click here.



Christian Sinclair, MD, FAAHPM (@ctsinclair) is editor of Pallimed, a former hospice medical director and current outpatient palliative care physician at the University of Kansas Cancer Center. He has a experiential degree in Social Media and Health Care Marketing from the school of life.

Monday, June 14, 2021 by Christian Sinclair ·

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