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.
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| 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:
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.
About the Speakers
Janice Lynch Schuster, et al. Representing people who live with chronic pain
In healing,
Celeste Cooper, RN / Author, Freelancer, Advocate
Think adversity?-See opportunity!
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