Tuesday, May 5, 2015

Healing What Hurts: The Politics of Pain: A Symposium Overview by Celeste Cooper


The Dinner

The energy in the room was palpable at the Center for Practical Bioethics dinner. Two outstanding women, Kathleen M Foley, MD (who would be speaking the next day) and Noreen M. Clark, PhD (posthumous) were recognized for their dedication and commitment to palliative care with the “Vision to Action Award." 

Keynote speaker Keith Wailoo, PhD gave us a look at the history of pain, its perception, and its treatment through the years with the overview of his book “Pain: A Political History.” 

People from the “Center” as they refer to themselves are the remarkable people I am privileged to know. The theme, Healing What Hurts, was resonate. Hundreds of eye’s moistened, and the audience was moved as fellow patient leaders from “Relieving Pain in Kansas City” shared their poignant stories in an interview video. It is because those at the Center give their time and talent that we, as patients, have a voice. So often, we only hear the negatives of pain, but being part of the Pain Action Alliance to Implement a National Strategy (PAINS),  an initiative of the Center, is energizing and empowering. 

http://www.practicalbioethics.org/  

Day two

Welcomed by Dr. Marc Hahn, the day got a terrific start with introductions and an overview on chronic pain by Myra Christopher. We were introduced to Joan Berkley’s family, who are kind and caring, no surprise. Joan Berkley was a board member of the Center of Practical Bioethics and dedicated her time and her memorial to ethical treatment of patients. Her legacy lives on in this eighth year of the Joan Berkley Bioethics symposiums.

Healing What Hurts: The Politics of Pain

Throughout the day, we heard about every aspect of pain and politics. I appreciated the opportunity to engage with the speakers, the topics, and other members in the audience. The day was full of information on the many things that affect the politics of pain and its impact on patient care. We explored the need for evidence-based policies on state and national levels, and we heard from a patient living with pain, Janice Lynch Schuster, who represents those of us who live with a stigma for no other reason than we experience chronic pain. 

Dr. Wailoo, author of Pain: A Political History, and Dying in the City of Blues: Sickle Cell Anemia and the Politics of Race and Health spoke of pain and politics, the shifts, the battlegrounds, the perceptions (some very similar to today), bigotry, ethics, culture and welfare. As he worked his way through his presentation, it became evident to me that the history of Americans’ perceptions of pain and its treatment is a pendulum swinging back and forth like a Grandfather Clock. 

The disparities of pain care are not new. Dr. Bonica, known in the 70's as the father of pain medicine because of his integrative approaches, kept a diary of 100 interviews of pain care providers. What he found was everyone had their own theories. As decades roll on, the pendulum shifts from social rights such as disability, relinquishment of those rights, restoration of those rights, medical to legal, hateful, and almost lunatic accounts of pain, and back again. Pain perceptions evolved from medical assessment to becoming a political resting post of right vs. left (ethical vs. bigoted, not necessarily in that order) to entering the realm of legalities. History should be a teaching lesson, but as someone said in the closing remarks, if you asked 100 pain physicians today how to treat pain, you would still get 100 different answers. We have work to do.

Many things were discussed including access to prescriptions. Challenges include, refusal to fill, long commutes to a pharmacy that can and will, lack of patient funds to pay out of pocket for medications or required drug screening because insurance will not reimburse, and more. According to Dr. Foley, there is no evidence that decreasing opioid prescriptions, lowering doses, or the implementation of drug monitoring programs have any effect on opioid overdose or misuse. So what are our political leaders doing to prove their case for continuing to implement costly programs that have no evidence they work? As Bob Twillman, PhD put it, why would we keep doing the same thing and expect different results? We hear repeatedly how costly pain is to America, but exactly who is driving these costs up, and to what end? 

Dr. Twillman says addiction rates have not changed and he asks, “Will decreasing the number of opioid prescriptions written correlate with a decreased number of patients in pain?” Anyone with common sense knows the answer to that question. So, I ask, "Why are our politicians and governing agencies making such an absurd plan?" We were reminded that we have an election coming up. Maybe we should all think about these things and share our stories with our political figures as suggested by Katie Horton, JD, RN, MPH. She says we should challenge our representatives on why they support programs that are not curbing drug abuse, deaths, or improving patient pain care. For more information on policies, legislation and regulations check out SPPAN, State Pain Policy Networks, and please read and act on my blog:  

Ensuring Patient Access and Effective Drug Enforcement Act of 2015 - S. 483 H.R. 471: A Template Letter by Celeste Cooper

We learned from Dr. Richard Payne that the science of epigenetics (studying genetic outcomes of nature/nurture and the effect on DNA expression) could be a potential biomarker for chronic pain. 

As suggested by Dr. Richard Payne and Melissa Robinson maybe we should encourage our congressional representatives to explore the ethnic, racial, social, and behavioral influences on the treatment of chronic pain. Maybe we should research how to treat pain with patient centered goals, not political agendas. We need our physicians to join us in the plight for patient centered care and fight for their right to do so. Both Dr. Payne and Myra Christopher helped draft the IOM report, “Relieving Pain in America.”and they urge us to comment on the National Pain Strategy report that has resulted from the efforts of many, including the PAINSproject. You can read more on this on my blog: 
Make a Public Comment on the National Pain Strategy by Celeste Cooper (The deadline is in days, don't wait.) (Addendum, Public comments closed May 20, 2015)

Our psychosocial and basic needs are not being met. When our priorities are shelter and food,  our pain care takes a back seat, but it shouldn't have to. We must address these issues as the human thing to do, as an ethical obligation to ensure everyone has access to pain care. 

Dr. Lynn Webster, past president of the American Academy of Pain Medicine and author of The Painful Truth, has produced an award-winning documentary (self-funded), with the same name that will air on public television this fall. The documentary covers the spectrum of pain care, and as he says, “The art is in the story.” He hopes the movie “Cake” (love it or hate it) will affect the dialogue on chronic pain the way the Philadelphia Story paved the way for AIDS awareness. As Dr. Webster says, tapping into our emotions is the driving force for change, not science. This is evidenced by the effect media coverage on “The Politics of Pain.” His documentary approaches the right side of pain, the Painful Truth. Watch for its announcement. I know I will.

Trailer for "The Painful Truth"



Conclusion

I have the extreme pleasure and opportunity to know people who are fighting for truth, justice, dignity, social conscious, and treatment for each of us living with chronic pain. I met with Dr. Bob Twillman, Dr. Lynn Webster, Kim Kimminnau, Ann Corley, Orvie Prewitt, my fellow patient leaders at the Relieving Pain in Kansas City, and so many others. I am perpetually energized by these positive people with a common goal to change the way pain is perceived, judged, and treated. 

What Can You Do?

Feel the empowerment of being a change agent by joining a cause that will make a difference for millions of Americans who suffer daily with pain. 
  • Find out more about advocacy on my website, here
  • See what the Center for Practical Bioethics is doing, here.  
  • Join the PAINS Project, here


About the Speakers

Janice Lynch Schuster, et al. Representing people who live with chronic pain





10 comments:

Kristina Schwende said...

This is extraordinary work being done to help people in pain. While this addresses issues in the US, I have no doubt we are dealing with the same issues in Canada. I am a chronic pain patient, and many of my friends are. I hear their horror stories, and I have a few of my own. It is very encouraging to know that there are people out there fighting for us. Your fight, your lessons learned, will show the way for other countries as well. So I thank you for fighting the good fight for all of us!

Celeste Cooper said...

As always Kristina, TY for your unwavering support. Yes, this is a global issue and I hope we can get it right. Change is needed. Somehow, I am always able to find opportunity in adversity. There is no doubt the direction of my life has been affected by my higher power, God in His infinite wisdom leads us in directions we need to go.

pain care improvement said...

Celeste- how your cronies stack the deck to limit pain care in predefined ways. It has become clear to me how phobic you and your epistemic community has become towards independent and diverse thought as you seek uncritically to determine what pai care will be for all Americans- despite the great biosocial heterogeneity of Americans. But,i know, that your community is past recognizing the value of those who see things differently then you do. And so much for the heroic leadership you embrace.

Celeste Cooper said...

I read your blog David Becker and we have far more in common regarding pain care than not. It makes me wonder if you followed the links in this blog. The http://PAINSproject is committed to carrying forth the initiative to change the way pain is perceived judged and treated. As a member of their patient leadership group for securing funding for patient research, I can tell you everyone at PAINS and members of their steering team (including the AAPM who you site in your own blog), want the patient front and center. I can tell you that we are fighting for the right to choose what works best for us and to move integrative care proven effective front and center. Anything less is unethical as a human being. I cannot think of a group of people who are less biased than the people I have come to know and respect. In healing and hope, Celeste

pain care improvement said...

People are people, not patients. You say you want "patients front and center"-
I dont see how the AAPM's or the APS include the voice of anyone in pain- maybe you can show me where on their web pages they welcome input form anyone on pain- and how they make people in pain front and center.
PAINS also has no mechanism for hearing the voice of anyone in pain. Youre eliminativists- you selct only those people who share your orientation to pain to include. THE NPS and PAINS failed to develop a mechanism whereby nonaffiliated individuals could be heard.
Where does PAINS advocate for the individual in pain to have access to any treatment for pain? PAINS believes in biofeedback, cbt, acupuncture, hypnosies,etc. How bout energy medicine? How bout ayahuasca? or intrathecal hydrogen or Hydrogen sulfide, biomat, biomodulator, resolution magic. I think its fair to say that you and PAINS wishes to limit choices in pain care to those methods that you already prescribe to- which frankly can be characterized by " das ge-stell". As someone who has overcome pain- i would have not overcome pain by limiting myself to the very limited and limiting approaches of the AAPM, APS and PAINS. And by the way- where is the PAINS effort to ensure that pain specialists have quality improvement plans which include using energy medicine or mind body medicine like life medicine, quantum neurology, Gerd Hamer, metamedicine? Its ironic that PAINS and the AAPM wish to coerce pcp's to learn more-whereas they seem to have no real plan to ensure that the pain specialists will have to keep learning more- in a substantive way.
It seems clear that pain care is finished- that the future of pain care- if left to the designs of PAINS- will be largely like the past=pain care is dead-long live pain care! PAINS killed pain care-and people in pain will have no hope for a better future as PAINS is content with the ways of the past. Lets debate it openly in public- because though you say we have things in common- i am a progressivist-and PAINS- wishes to drive us all to the future while looking in the rear view mirror. So MS Cooper- I am not a landlubber- i dont need to stick to the shore- I can set sail for uncharted seas and the undiscovered country where new treasures as yer unseen to help people in pain may be found.

Celeste Cooper said...

This is what we do as patients, as leaders, an initiative of the Center for Practical Bioethics. Relieving Pain in Kansas City is a group of PATIENTS! You know not of what you speak. It would do good to learn about the Center for Practical Bioethics, watch some of the videos and interviews. PAINS is also and initiative of the Center for Practical Bioethics.

Here is by blog about our patient group (who does have a voice on Capital Hill). Please watch the patient video.
http://fmcfstriggerpoints.blogspot.com/2015/06/a-patient-powered-network-change-agents.html#.Ven1-xEy6kp

And my website on the PAINS initiative.
http://www.celestecooper.com/the-pains-project.html

I hope this helps you gain a better understanding of just how connected to the patient community this group of caring people are. You will be hard pressed to find another. They are the bridge between patients and Washington DC. That may not be how you go about it David, and that is your choice, but I would hope you could see the positive. We all have a choice between anger for things undone or appreciation for those who are making the effort, even if you don't totally agree. Wishing you peace and understanding, Celeste

pain care improvement said...

Ms Cooper- I have gone to the links you have indicated. THE PPRN advocated is based on the IOM's 2011 report- if you read the report, as did i- it clearly states that hey dont believe in cures for pain- but that pain can be managed. What person in chronic pain, wouldnt wish to be cured? And before you answer- where is the effort of PAINS to promote curative treatment such as patent foramen ovale or stem cell therapies? So once,again, it is clear PAINS and the pain specialists have courted - or should i say cherry picked those people in pain who share their limited and limiting vision and ways for people in pain. And once again PAINS nor the AAPMs nor the APS, etc offers an open forum where any Americans concerns or input will be welcome and considered. TO be part of their excluive club- i guess one has to give up hopes for cures, one has to curb ones enthusiasm for a much different and a much better future for people n pain- and one must curb ones ability to freely and progressively engage the issues of pain care. Since I have not been made ripe for the narrow path of approach that you and your colleagues endorse- i have spoken out in the name of individuality and diversity of thought and of a bolder and freer vision than you are willing to embrace. And like Lincoln- i can criticize beause i have a hear to care.
PAINS has no sophisticatyed or fully open method to consider fully the great biosocial heterogeneity of people in pain. And I dare say this is one of the reasons people in pain remain the lonely abandoned folk that Patrick Wall spoke of. Instead of grasping at self- PAINS would do well to become much more open to the great diversity of people in pain. Trade your knowledge for wonder- free yourself of mind forged manacles- Have that "constant curiosity" and constant and never ending improvement that gurus in other fields call for. But frankly, when I read the PAINS stuff- it doesnt reflect broad learning- on the contrary- its the narrow path of apporach- the einschrankung. Because you see the ways of pain experts as more or less the way things should be- you have not sought to make pain care much better then they wish it to be.
Your vision is not progressive, but regressive- 40 years old. You and your friends are not breaking your heads open to create the symbols of a new day for people in pain and you are fixated on approaches that have only had, and probably only will have, limited and uncertain results.
Romantic leadership you embrace makes for poor followers- for their generative capacity has been sacrificed for the designs of yourself and the pain specialists- the day will come when you and your community can challenge me- and when i show that i have taken the time to explore pain care from many fields and have learned about many more issues and many more treatments and have had more visions of what pain care will be- it will become only too clear to others that your approach is indeed one that hasnt the benefit of breadth or depth of learning or of those who can drean boldly- but ill give you that chance in the future to prove me wrong.

Celeste Cooper said...

David, and you would accomplish this how?

Patients can join pains just like any other individual hoping to carry forth and implement the Relieving Pain in America Report to change the way pain is perceived, judged and treated. The report was simply that, a report. Implementing the findings for improvement is being carried by those who have chosen to make a commitment to see that yet another report doesn't simply get pushed aside. A very wise psychologist who just happens to be my co-author reminds our readers TTT. Things take time.

You are welcome, I even encourage you to join and let your voice be heard by many, which includes physicians, advocates, physician groups, hospital systems, and yes, the most important, patients. Attend a symposium and network directly with those who want to hear your voice and it doesn't stop there. Wishing you best.

http://www.painsproject.org/ click on the join box.

pain care improvement said...

PAINS, the AAPM and APS should court "voices at the margin" and counterpoint-and such should have and could have been done before Portenoy and company wrote " A Call to Revolutionize Pain Care in America". If the quality of the work is a function of syncretistic orientation- of garnering any and all voices and stakeholders- and the depth at which you incorporate and master the rich heterogeneity of voices in pain care- then instead of imposing a top-down
managerialism on people in pain- the APS, AAPM and PAINS should have made a much greater effort to engage a conversation with as many diverse and independent voices as possible. It is not too late to do that now. To do other wise would be to "mobilize bias" and factionalism- and you have seen increasing factionalism in pain care over the opioids- and like are Framers said factionalism can convulse society. You have seen members of chiropractors and family physicians oppose the NPS-so greater democritzation is needed. Failing that, if you should be successful in implementing the NPS- then soon enough fingers will be pointed at PAINS, the APS and AAPM for
not having an effetive plan and for not solving the many problems in pain care. You have set yourselves up for criticisms from those who were not part of your plan. And just as the IASP and others have criticized the pla for lack of implementation or lack of focus on children or elderly or multimorbidity agnosia- why assume the risk when you can instead include those voices who would have prevented you from misssing the mark on the aforementioned?
LAstly- as i have said before goood leaders make poor followers- great leaders build the generative capacity of followers- they bring out their greatness. The pain specialists, as they believ ein their own greatness will not focus on brining out the best or the greatness in their "patients". And so unles teir is more of a focus on moral particularism and contingency management and building the capacity of each individual or family or workplace that has someone in pain- there will be a continuation of missing the mark in pain care.
This is how to change pain care-and this is the real transformation of pain care in America- let us bring out the greatness in people in pain and include all voices- no matter how much they diverge from the "integrated, evidence based, high quality interdisciplinary biopsychosocial model" that you and your colleagues have espoused. I will keep challenging my own assumptions and ways- and keep improving-that is the way to the stars.

Celeste Cooper said...

David, you might be interested is seeing this. I hope it helps your understanding of the stakeholders (including patients) at PAINS. The NFMCPA is on the steering committee at PAINS, FYI. Integrative care with equal access for all, including access to care for those who become addicted to opioids, intentionally or otherwise, that is not based on the ability to pay. Equality in pain care regardless of age, sex, or ability to pay.

Foundation for Chiropractic Progress Aligns with National Fibromyalgia & Chronic Pain Association ...
http://www.businesswire.com/news/home/20150903006326/en/Foundation-Chiropractic-Progress-Aligns-National-Fibromyalgia-Chronic#.Ve2-IfmrTIU

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