When I talk about shared decision-making and patient centered care, I often talk about the differences in the way doctors and plumbers speak about their work. Especially after reading Atul Gawande’s article "Letting Go", I felt empowered to say, ”Suppose your basement was flooded and your pipes were bursting. The plumber would not forgo or delay telling you the truth about the extent of damage due to concerns about your emotional distress. He would not suggest just pumping in chlorine to 'medicate the pain' and ignore searching for the cause of the flooding. He would consider you educated enough to understand the potential treatment paths. And he would let you know all your options and give you a price estimate before beginning repair.”
So imagine my joy today at Health Affairs’ Briefing: Still Crossing the Quality Chasm, when the first speaker, Carolyn M. Clancy, Director of the Agency for Healthcare Research and Quality presented using a quote about plumbing. ”The society which scorns excellence in plumbing as a humble activity and tolerates shoddiness in philosophy because it is an exalted activity will have neither good plumbing nor good philosophy: neither its pipes nor its theories will hold water.”
And that quote became the foundation for the painting I created today.
This morning, I dressed in my nicest business dress and carried my French-box easel in one hand and my brief case filled with paint in the other. I climbed the carpeted steps of the Capitol Hilton Hotel and stood in line with those that came at 8:30 am to listen to sixteen speaker views on the quality chasm in medicine. They checked me in, and I grabbed my packet. I rapidly walked to the back of the room and began to set up my easel. I set up next to the cameraman, as I too had come to create a picture. Several nice Health Affairs staffers looked at me quizzically. A couple of them even came over to talk with me. But no one stopped me from painting, and that was good.
I was doing something a tad subversive. I had not been invited. If it hadn’t been for Trisha Torrey and a blog post she had written, I would have had no idea this meeting was taking place.
On March 31, Trisha Torry wrote a blog piece “Time to Recognize Us Not So Invisible Patients.” She had been invited to attend a briefing by Health Affairs called “Still Crossing the Quality Chasm: Update on the Progress in Improving the Quality of Health Care.” She was rather astounded when she read the speakers list. As Trisha phrased it “VERY impressive list of speakers. Except.... No patients. Not one individual who can speak for patients from a patient's point of view.” Trisha‘s blog is well-read in the patient community. She had hoped that with her post Health Affairs would change their lineup and include a patient speaker. She also was hoping local DC patient advocates could attend if we were only made aware of the proceedings.
Trisha continued to blog on the topic writing:
Here she stated: “Eventually I received an email from Sue Ducat, representing Health Affairs, telling me that one more 'expert' had been added to the panel - someone who has proved her chops in patient safety.” That speaker was Diane C. Pinakiewicz, President of National Patient Safety Foundation. In addition to this speaker there would be a patient in the audience; Ilene Corina, President of PULSE of NY and long time participant of the National Patient Safety Foundation Patient and Family Advisory Council also presently a member of the NPSF Board of Governors.
And in the back of the room, I would paint.
I was very happy that Susan Dentzer, Editor-in-Chief of Health Affairs, mentioned early on that the Twitter hash tag was #HA_Quality. A nice twitter commentary ensued, which allowed far more patients to participate. So between brush strokes I would periodically tweet and enjoy the give and take of social media. At one point Christopher Fleming, Social Media Manager at Health Affairs came up to me and asked questions about my work. He would be the only Health Affairs staffer who gave me a card. I told him I would send him my blog as soon as it was completed and thanked him for his frequent tweeting.
I quickly painted the cliffs, the chasm and the sky. Soon we began to hear about plumbing. So pipe works began to emerge on the left side of the painting. This was the patient side. A number of patients upheld the pipe works and tried to curtail its uncontrolled gushing. An elderly figure dangles from the pipe; he represents the 1/3 of the senior population that gets to access care. A child dangles from the man’s foot. The child is holding a bucket under the gushing spout. That bucket is labeled PHR. She is trying to take some information out of the data stream as billing codes and data gush into the valley bellow. Above him a child valiantly tries to turn the spout; she represents the 47% of children who can access care.
Throughout the pipe works are areas of disruption that point to systematic failure as data and services drain away from their needed destinations. Safety Net Hospitals, Ambulatory Care Settings, and medical education are suffering from a lack of clear communication between providers and patients.
In the lower left area ACO is depicted as a mythical beast, for that is how a panel speaker defined it, as she begged the moderator to forgo asking her to comment on Accountable Care Organizations. As I tweeted this description on Twitter, @faisal_q or Faisal Qureshi responded, “@ReginaHolliday Mythical? hmm... the monster is real and it’s right in front of us.” So I painted an ACO unicorn because our pop-culture often depicts these beasts in glitter and rainbows. And they can be positive--Kaiser Permanente is an example of a conceptual ACO. Elizabeth A. McGlynn, Director of the Center for Effectiveness and Safety Research at Kaiser Permanente gave a great description of this type of care model. She explained that while calling to make one appointment she was encouraged to schedule her mammogram and other needed tests. She described in glowing terms the power and patient-centered nature of accountable care at KP. But unicorns can be tricky. They are wild and complex and cannot be tamed by man. People often forget they tend to gore to death those humans who are well-versed in the ways of the world.
Across the chasm on the right side stands an executive juggling; He juggles the balls of trust, improvement and reporting as they circle in the air leading to RPI (robust process improvement). I wondered as I learned about this new acronym if people considered that failure to follow these simple measures, for example hand hygiene and better hand-off communication, could lead to that much sadder acronym RIP.
Above the juggler, providers hold up a philosophy scroll. A doctor proudly stands in the center. To the right, a nurse or tech faces away holding up an end of the parchment. On the left side, an informatics professional types away while balancing the sheet on her head. The plumbing from the right side of the panel becomes an old-fashioned dip style pen. And these words are written in cursive: “I wrote a white paper. I wrote a white paper…” These words a cascade down the page like some academic Jack Torrance. Again and again, as the speakers spoke I would hear about the papers they had written. These papers seemed to be the passport to speak in such an august setting. And I sadly thought of all the patients who would never write a white paper, but had such important things to say.
We had a break at 10:45, and I saw via email that Ilene was trying to get a question asked during Q&A. I too had raised my hand for a question, but they had been taking few from the audience. After the break and during the Q&A of the next session, the moderator mentioned that she would like for Ilene to get a chance to speak and ask her question. Ilene asked what ways were the panel members involving patients directly in bridging the care chasm. In response, one panelist mentioned that they were now involving patients in all their hospital panels. This was the first time patients were referred to as a team member and not as a participant who needed to have better compliance.
After 12:20, the session was running over, but the sun rose on this painting. At this point the panel “Where Do We Go From Here? “ began. I wondered if they had any idea about the Buffy song of the same title. That is the song we used to dedicate the mural 73 Cents. That is the song I am singing on the NPR broadcast of November 9, 2009. My answer to the question was simple. Patients and caregivers must have access to their own information and must spread the word about the need to treat patients with dignity and respect using every form of social media.
Soon Peter J. Provonost from John Hopkins University began to speak. Finally, we saw a picture of a patient. He showed the picture of a baby. Her smiling face reminded me of the Teletubbies. As any parent who once had an 18 month old can tell you, babies are just mesmerized by the Teletubbies and the golden sun with a baby’s face. Oh, how it giggles and they giggle and the room fills with joy. So there is a painting of the sun in this piece. And that sun is also a clock that marks the time that the smiling face of Josie King stared out at us twelve feet tall upon the screen.
I was sad and angry, because by this point so many people had left. Josie’s face should have been the first slide. This panel should have been the first panel. That would have centered this day and this event. And that speaker that Trisha fought so hard to have included should not have been the last to speak. Finally after the room cleared, I was the last to leave the hall as the hotel staff cleaned the room of the remains of breakfast.
Patients had been left for the end, and it seemed like an afterthought.
Patients had been left for the end, and it seemed like an afterthought.