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Saturday, February 27, 2010

The mural at the ONC meeting

Originally uploaded by ThroopCat
On Wednesday, February 25, I attended a meeting held by the Department of Health & Human Services Office of the National Coordinator for Health Information Technology. The meeting was entitled "HIT Policy Committee Adoption/Certification Workgroup". As doctors were blaming a lot of the medical errors found within the EMR on software bugs, I stared at the mural on the wall. We were in a large ballroom at the OMNI Shoreham. The room was set up to seat around 200, and I would say about 60 people were there. The audience listened to the speakers intently and did not gaze about the room. I was happy to be in a room so filled with art.

The meeting continued, and E-Patient Dave spoke briefly in the support of patients' rights to data. In the entire morning session he was the only voice presenting the patient, and he had five minutes to speak. His speech was impassioned and engaging. His supporting notes within the meeting packet were well thought-out and contained the only illustration in the entire packet. He used two cartoons depicting cars either damaged by or soon to be damaged by new female drivers. I laughed when I saw it. Once, women were not considered educated enough to drive, just as now patients are not considered educated enough to read their own record. I also laughed because throughout the morning presenters and the committee were using car metaphors.

I heard that we would need to "put pedal to the metal to get this done". I heard that we are in an age in which the automobile has been created (EMR) and the horse and buggy (PAPER RECORD) must be retired. I heard about the long a process before us to make the "roads" for this new conveyance. I heard a lot of top down ideas on implementation discussed. I thought of Toyota. I was very surprised only one man mentioned this current public relations nightmare. Each day on the radio I have heard many aspects of the Toyota scandal. There was a lack of transparency, individuals were complaining of the same problems with their cars but could not aggregate their data, and the public was very angry.

I thought of Toyota and medicine and stared at the mural on the wall. It depicted four or five well-manicured lawns with mansions on each hill. Framing this scene was a dark and wild forest with a ribbon of red throughout the branches of the trees. A stormy sky was building and approaching the quaint controlled landscape scene. The painter designed this piece to feel like you are in the forest looking out. I laughed out loud. This painting was perfect for this room and this time. We are the patients; we are the forest. We are wild, immense, and very old. We may not be as trained and as educated as yonder grape vine or cherry tree, but our roots are deep, and we are encroaching. The only thing holding us back from the being a larger part of the picture is the red tape wound throughout our branches.

I hope the HIT committee will help remove some of the red tape and let us take our part. I hope of some of them looked up at the mural and saw the bigger picture.

Tuesday, February 23, 2010

Murals, Medicine and the Holocaust

When I was young we had a print of Picasso's Guernica on our dining room wall. The print was approximately 2 1/2 feet by 5 feet. At six years of age I would eat my Frosted Flakes cereal and study anguish. Have you ever stared at Guernica? I vividly remember being beaten by my father and seeing the painting on the wall. While the welts rose on my legs and the switch danced through the air I saw a kind of compassion in the piece. It was a sense of shared suffering. As I grew older and learned of the history of the painting I became very interested in Nazi Germany's atrocities including the Holocaust. I read The Diary of Anne Frank and any other books about the Holocaust I could find. As is often the case, my reading was affecting my art.

In eighth grade I turned in a pen and ink drawing to my instructor. It depicted bald emaciated men, women, and children in loose gowns in front of a swastika. My art teacher told me I needed to do more image research. My figures looked far more like cancer patients in hospital gowns than concentration camp inmates. Life is like a circle: thoughts go round and round. Here I sit, 25 years later, thinking about Guernica, patients' rights, and the Holocaust.

Not long ago I had the pleasure of seeing Atul Gawande speak about his new book, The Checklist Manifesto. He praised the lifesaving abilities of the checklist. He pointed to the success of using this simple device in aviation and engineering. He went onto cite cases of lives saved by a short surgical checklist. A checklist can make you pause, communicate better, and remove panic from a stressful situation.

My late husband Fred and I once talked a great deal about lists. In 1993 we were married. On one of our newlywed dates we saw Schindler's List. Fred was a huge Steven Spielberg fan, and this film was a critically acclaimed masterpiece. We discussed the movie endlessly. We loved the visual motif of a list that carried through the whole film. The same list that depersonalized the Jewish people and made it easy for the soldiers to treat them as non-human was used by Schindler to save their lives. Therein lies the power of lists. Lists can take away the panic from tragedy and the humanity from the powerless. Lists can do amazing things, but we must remember why we use them.

In Late May I wrote a list with Fred. It looked like a grocery list:

1. Get rid of the car. Get the title. Sell car.
2. Regina needs to get a driver's license
3. Pal Bearers:
David- Yes
Jeff- no
Chris- Yes
Greg- Yes
Alex- Yes
Jon- Yes
4. Plot in Grantsville
20, 21, 22, 23 or 24 available?
5. Go see a movie every year on my birthday

That is it. That is the list that Fred and I made the day after he had decided to go into hospice. Five things that we needed to do while dying. The list was calm and achievable. The reasons for the list were beyond comprehension. So Fred lay in his bed. His parents sat at his side and I listed the goals for the funeral and our life. It was a "to-do" list or a "check" list. It reminded me of so many grocery lists that had come before it. It was stability in a world of chaos.

And so my thoughts bleed on the canvas of my life as I think of Guernica and lists. 73 cents is my personal Guernica. The art that came before it was pretty and fun. This is my hue and cry. Pablo Picasso painted Guernica in 1937 as an accusation and warning. He decided to take a stand. He decided art was more than pretty pictures. Tomorrow I will once again speak before members of Congress and share our tale. I will speak of kidney cancer, the uninsured, and patients' rights. I hope to open eyes.

Murals, medicine and the Holocaust; these turn in circles in my mind. In closing I want to know if you have heard of a muralist named Dina Babbitt. She was 21 years old and imprisoned in Auschwitz concentration camp. One day the prisoner in charge of the children's barracks asked her to paint a picture. She painted Snow White and the Seven Dwarfs from memory, so children could see some happiness before they died. She was caught painting the scene and could have been executed. Josef Mengele saw the quality of her work and instead forced her to paint for him.

This is the power of art: art can save lives and change lives. But we must remember why it is we paint. I think of those children in Auschwitz staring at a painting of Snow White, and I wonder if they found compassion in that painting as I found in the painting Guernica?