Wednesday, May 13, 2015

ETHICS OF THE POLITICS OF PAIN

Picking Up the Gauntlet

On May 1, the Center for Practical Bioethics hosted an ethics symposium, something they do every spring. What made this event special enough that it moved me to write about it was the topic, Healing What Hurts: The Politics of Pain.

I’m a bit of an oddball in the pain world. I am not a healthcare professional, nor am I person with chronic pain. I am not an academician or researcher; I don’t work in industry. I am someone who came in the ‘side door’ to the pain world providing services like strategic planning, meeting coordination, and program/project management to organizations like the Center. I can’t truthfully say that helping to change the way pain is perceived, judged and treated is a personal passion of mine. But it has become something I believe in and care about, a testament to the incredible people at the Center with whom I have the privilege of working, and my exposure to the thinking and work of individuals like those who presented last week.

At the symposium, I felt like I was witnessing the creation of a beautiful tapestry, with each speaker picking up the thread of those who came before and continuing to weave the threads together until the complicated (and troubling) reality of the polarizing space in which pain currently resides was achingly clear. Some threads:
  • Historian and author Dr. Keith Wailoo’s spellbinding historical dissection of the poles our policymakers and courts have swung between in answering the questions, “Whose pain matters and who deserves care?” While historians feel more comfortable looking back instead of ahead, Dr. Wailoo did offer some insight into my question of how to have success this time around in making sure that reimbursement model changes follow our ability to demonstrate that comprehensive multi-modal pain care holds down costs and improves outcomes.
  • Dr. Kathy M. Foley (I view her as the Grand Dame of this continent’s pain movement) exposing the harsh realities of care being forced to focus on what’s reimbursable vs. what’s best for the person with pain.
  • Dr. Bob Twillman laying bare the damage caused when overly simplistic policy and action around harm reduction focuses solely on cutting down on the supply of prescription narcotics, without looking at the demand side and asking, “In which patients should we use opioids, at what doses, for how long, with which adjunctive treatments, and with what precautions?”
  • Dr. Richard Payne sharing some pretty mind-blowing emerging science about how the social determinants of health most closely associated with underserved populations actually affects one’s biology. Melissa Robinson from the Black Health Care Coalition made it real for the impoverished in Kansas City.
  • And, pain pioneer Dr. Lynn Webster, pain advocate Janice Lynn Shuster, and public policy expert Katie Horton reminding us all that the lives of people in pain matter and their stories must be heard.
Having worked in this arena for over a decade, I will own that the fight to make things better for people with pain feels akin to running a marathon in five feet of mud – it’s a slow slog even on good days. The assembled audience sensed there may still be some dark days ahead before the pendulum swings back towards reason and progress. But the conviction that things will get better and that we must continue the fight was evident in abundance.

Who else but the Center could and would provide the kind of thought provoking and engaging delve into the ethics of the politics of pain? There may be others, but the Center picked up the gauntlet and ran with it. And for that, they have my love, admiration and respect. [In the spirit of full disclosure, I currently do some consulting work for the Center on the PAINS Project.]

Written By Ann J. Corley, MS

Friday, May 1, 2015

Granny Takes an Art Class

My Journey with Elizabeth Layton

Although it was nearly 40 years ago, I remember seeing Elizabeth Layton's drawings for the first time as if it were yesterday. I was a young reporter for The Herald newspaper in Ottawa, Kansas, when I saw two of these drawings. They made me laugh and cry at the same time. Drawings of an old woman with big green eyes that reached out to me.

Then, I learned from her art teacher at Ottawa University that Elizabeth Layton was 68 years old and taking her first art course. This, I realized, would be a good story for my newspaper, "Granny Takes Art Class." Meeting her, however, I realized that this was more than a one-time story for the Ottawa Herald. It would be my life.

When the story appeared in The Herald, I had also arranged for a dozen of her drawings to be shown at the local library. Visiting her weekly, I learned more of the story. She had been depressed half her life and undergone shock treatments. Learning to draw helped to cure her depression. It was gone six months after she began drawing by looking at herself in a mirror and drawing not only what she saw but what she felt.

I was able to arrange for one-person exhibitions of her work in about 160 museums across the country, including the Smithsonian. And I was able to get coverage of her in Life, People and Parade magazines, as well as NPR and Good Morning America.

She and I had an understanding and a mission. We knew that viewing her drawings could and has helped people – people dealing with their own aging, their own depression, their own families. And the drawings could help people better understand the social issues around them – racial injustice, homosexuality, the environment, homeless, and on and on.

Elizabeth had to draw and I had to get those drawings "out there." It was my therapy during the last 16 years of her life and the 22 years since.

By Don Lambert, Curator