Painting Your Words

On April 24-26, I was honored to attend the Fifth Annual South Carolina Patient Safety Symposium.  I flew in a bit early, so I was excited to find out I had time to walk around the neighborhood around the conference hotel.  I was staying at the Columbia Marriot, so before going on my adventure I asked the concierge if she recommended any local destinations.  She told me if I drove 15-20 minutes I could go to a nice shopping center.  I replied, “I am walking (as my friend Ted Eytan often encourages).”  She looked at me and said, “Well, there is not much around here.”  Then reaching under the counter she said, “You might like this place.”  She handed me a brochure for the Mast General Store.

Then I began my adventure.  The area surrounding the hotel was an aesthetic gem of texture and history.  I past some shops that were shuttered with soap covered windows.  But time and time again, I peered into shops that looked as though they began their life in the 1960’s and had not closed or renovated in the past 50 years.  I walked by the most dapper men’s suit shops and saw jackets that would look so fine on the backs of The Walking Gallery. I counted three wig shops that my friend Tiffany would love. 

I stepped briefly in the Mast general store and it presented like a Cracker Barrel if it opened in Downtown Annapolis, MD.  It was very clean and very well displayed and very touristy.  I did not stay long.  Nearby there were several independent art galleries and a small independent art store.  I was so happy.

Next, I found a wonderful dress shop.  It is called Coral’s. In that shop there was the most helpful staff that showed me glittering dresses of every hue under the sun.  Then they listened to the story of Fred Holliday and learned the reason why I speak for patients. I bought a new dress and then headed out the door to the local beauty shop for a little “maintenance.”

Whist I was in the beauty parlor, I thought of Surgeon General Regina Benjamin as I spoke to the stylist about healthcare and HIT throughout the entire appointment.  When the stylist was helping other clients, I listened to the local radio station play six advertisements/announcements relating to health in South Carolina. 

Then it was time for dinner and it was like old home week!  I saw Christine Bechtel VP of the National Partnership for Women and Families, Jennifer Sweeny also of the National Partnership, Maureen Bisognano President and CEO of IHI, Rick Foster Senior VP of Quality and Safety at the SCHA (South Carolina Hospital Association) and Helen Haskell Founder and President of Mother’s Against Medical Error.

As we sat down for dinner, I noticed a large number of people went to sit at Atul Gawande’s table and Helen’s table, I went over to sit next to Mary Stargel the Administrative Coordinator of SCHA and Cheryl J. Dye a professor at Clemson University.  I was so excited to meet Mary as I have exchanged quite a few emails with her over these past many months.  I learned that not only was Mary handling details of the conference she is also a young mother and enrolled in college course work. Cheryl made a great dinner companion as well and spoke of her work at the Institute for Engaged Aging. It was a delightful evening.  I said thanks to our hosts and headed back to the hotel.

The next day was the first conference day and I painted “Silos.”

In this painting the silos that separate providers, patients and professors are breached.  Hands strain far above the green grass as each person tries to connect with each other.  To the far left is a cowboy.  He is a reference to Atul Gawande’s speech focusing on safe surgeries.  In medicine certain doctors are called “cowboys” when they do not function as team players.  This is alluding to the wild-west where a man is a law unto himself. But Atul recently interviewed a real cowboy and let us know that a working cowboy is more pit crew than lone gun.  He depends on the work of a team to save the cattle in the herd, and even the lowliest member of the team can call out an alarm when things are going wrong.      

The next figure is a nurse holding a child.  Here is the voice most often missing in the conference speaking agenda.  She is trying to balance so much and rarely has someone to speak for her at events like this one.

The next figure is Atul Gawande himself.  His is straining to create a connection between the child and a young mother.  Upon his chest he has a check mark representing the surgery checklist.  During his presentation he showed a great clip from ER showing how very important it is to have a surgery check list. Atul’s goal is to drop surgical death rate below 1%.  He mentioned in the world-wide launch of the surgery checklist the biggest pushback has come from physicians.

Between the nurse and Dr. Gawande is the community.  During the second keynote Eric Coleman, MD said that the majority of healthcare occurs in the community, not in the clinical environment.  If we want great changes in health we must begin at a community level. 

Holding Atul’s other hand is a pregnant woman wearing a shirt that says “39weeks.”  This image referred to a fun video that started our conference day.  In the video staff and children showed the importance of triple aim concepts like hand washing, the surgery check list and postponing elective cesareans.  They tied each film vignette together with an Olympic theme.

Holding hand’s with our pregnant mother is a patient.  The patient is holding out a balanced level.  This is a direct reference to Eric Coleman’s remark that we must meet patients at their level.  This was closely followed by a demand that should be a rallying cry for the e-patient movement.  “We must retire the word non-compliant.”  It is an excuse to give up on a patient, and whenever this word is used it reflects badly on the provider who uses it.

To the patient’s left is Cheryl. J. Dye holding a fishing pole and a FedEx box. The FedEx box is a reference to Eric Coleman’s remark about the word patient at it is used at medical conferences, “Could we just replace the word patient with the word FedEx package and have the same conversation?  I think yes.”  Cheryl holds a fishing pole to reference the old adage that we should not just give the starving man a fish to eat, but instead we must teach him how to fish.  This adage applies to caregivers and patients alike, 42 million caregivers provide 80% of the care for chronically ill.  We must be given the tools and support to do our jobs and be part of the care team.

To Cheryl’s left is Ethel from Maureen Bisognano’s speech.  Ethel was a patient in a care facility who was wasting away after the death of her husband.  She was given more and more pain medications and medicine, but nothing stopped her failure to thrive.  Each day Ethel would make one request of her nurse.  She wanted a dog.  One day her nurse was near an animal rescue on her way to work.  She found a dog for Ethel. Ethel made a miraculous recovery in a matter of weeks.  She now plays the violin for the other residents instead of wanting to die. 

That is the story behind “Silos.”  Next it was time to move my easel to the Awards banquet luncheon. Helen Haskell would hand out Patient Safety Awards in the name of her son Lewis Blackman.  The South Carolina Philharmonic serenaded us with an amazing triumphant eulogy as we ate and I painted “The Fame of Hope.” 

In this painting, I place Lewis within a flame.  He is slightly older than the day he died from a medical error.  His face is brightly lit and turns from the viewer to the woman he holds in his arms.  A young African American woman with babe at breast looks with a worried glance into the eyes of the young man before her.  She and her child represent all the lives saved by the safety initiatives that have been enacted in the name of Lewis.

I painted this while crying for a Lewis I never met, as a friend from his childhood sang:

“I've heard it said

That people come into our lives for a reason

Bringing something we must learn

And we are led

To those who help us most to grow

If we let them

And we help them in return

Well, I don't know if I believe that's true

But I know I'm who I am today

Because I knew you...

Like a comet pulled from orbit

As it passes a sun

Like a stream that meets a boulder

Halfway through the wood
Who can say if I've benn changed for the better?
But because I knew you
I have been changed for good." 

“For Good” from the musical “Wicked.

We must all have hope of a change for good.  That flame of hope burns brightly and is fueled by those who died untimely deaths.

On April 26, I painted the final painting “Awards of Transparency.”

Here the background is filled with an endless expanse of circles.  They are Olympic circles, they are microbes, and they are the dots that represent each one of us.  Before these circles, a figure stands.  She is a medical provider clothed only in the awards of excellence.  She has embraced fully open and transparent care.  She accepts the patient and caregiver as team members and using every tool at her disposal to fight against infection and medical error.

This painting is a challenge.  Could you walk down the street wearing only the awards of excellence in patient safety?  If you did so would you be “clothed?”

I thank the team that brought me out to speak and paint in South Carolina.  I leave inspired by the life of Lewis and the courageous campaign of his mother.  I will do the best connect Silos, because though my arms may be short, my heart is large. I will do my utmost to always remember the awards of transparency are not silver and gold medals, but instead represented by lives lived.

Crossing the Quality Chasm

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.”

John W. Gardner

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:

Health Affairs Briefing: Patients Becoming Less Invisible.

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.