What Can You Do By Next Tuesday?

If you had all the world and time,

What would you do by next Tuesday?

Would you travel back to May 20^th, 2003,

And watch the final episode of Buffy The Vampire Slayer?

Would you clap at the triumph and cry at the ending?

Would you hold his hand one more time?

What would you do on the evening of Tuesday April 22^nd, 2009?

Would you wait again for an ambulance transport that would not come?

Would you fill with fury, impotent rage, that plans were destroyed?

Only to look at him who had already lost all ability to control his life. 

What would you do in the week preceding Tuesday June 16^th, 2009?

Will you uproot your whole family?

And move to a new apartment for home hospice.

Would you cherish the last days and cry at the ending?

What would you do by Tuesday June 23^rd 2009?

Would you begin a mural that would change our view of patients?

What would you do by next Tuesday, Tuesday, Tuesday?

As the Tuesday’s stretch endlessly by and you are still you alone?

What would you say as you mount the stage on Tuesday July 13^th 2010,

When you speak before the assembled at Health & Human Services?

What will you say in your three minutes to speak?

How will you present the Patient Voice in Meaningful Use?

How will you answer when IHI fellow John Krueger, MD asks you,

What can you do by next Tuesday?

Will you make a new power point?

Will you write about Bellin?

IHI patient view

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John, shall I paint you a picture by next Tuesday?

Will I paint the washing hands?

Will I paint the praying hands?

Will you walk in the Gallery on Tuesday, on Tuesday?

We're in the world, we have the time,

What can you do by next Tuesday?

Take a walk, wash your hands,

Kiss your love, take a stand.

That you can do by next Tuesday.

Praying with Chuck Denham

I have told you before that as a child I worked at a local flea market in Sapulpa, Oklahoma. It was hard, dirty work, and it made me despise at a very young age any passing fad or craze. You see, every couple years after a fad died the over-abundance of certain products would crowd our stall and be almost impossible to sell. I, to this day, cannot stand termite shoes, Rubik’s cubes or feather earrings. But I truly disliked the many mugs, wall hangings, and decorative pillows emblazoned with the words to “Footprints in the Sand.” As a child, I found distasteful the hokey 1970's imagery of the beach sand and the disappearing footprints next to text written in mass-produced faux calligraphy. I am sure you are familiar with the tale. In it a man walks with God along a beach as the memories of his life pass him by. He notices in his darkest times there is only one set of footprints. He questions God, “Why did you leave me at my saddest moments?” God responds that when there was only one set of footprints that was when God carried him.

As a child, I really did not like “Footprints in the Sand.” In many of the pictures, it seemed like Jesus was carrying the dead- their arms limp and dangling. I did not want to look at this, and I did not want to be carried. Perhaps, as I was young, that memory of being carried, that loss of control or will was too fresh, so I could not accept this image. When I was a child, I spoke as a child; I understood as a child, I thought as a child…

Now, I am often asked "How do you do all that you do? How do you have the energy to balance teaching art, advocacy, blogging, giving speeches, and painting?" Well, I do not do walk alone. I pray, and God gives me the energy to sustain this life.

I remember one point when Fred was in the hospital, when all things within this life seemed so very dark. I remember praying for the peace of God, that it fill me and uplift me. And it did. I remember the moment. I was walking through the hospital cafeteria praying silently when I was filled with the love and light of God. My face was lit with an inner peace and even the hospital workers remarked upon my visage. The footprints artist had gotten it all wrong: when God carries you, you float.

Time has passed, and I no longer burn with this inner fire. I smolder. The journey is long, and I know the spirit is still within. I listen carefully and watch for “God moments.” My sister Esther and I call those moments of divine direction that happen with our lives “God moments.” I listen, I am open to direction, and I know the freedom of putting one’s life in God’s hands. So when I was invited to speak at 2010 CMS QualityNet Conference on December 2 in Baltimore, I said yes.

And that is how I met Chuck Denham.

Do you know Dr. Charles Denham? He is an amazing man. He worked with many cancer patients over the years as he has a background in oncology. He is founder and Chairman of TMIT (Texas Medical Institute of Technology), a non profit driving adoption of patient safety solutions and in this capacity he teamed up with CareFusion and AORN (Association of periOperative Registered Nurses) to produce “Chasing Zero” for the Discovery Channel.

“Chasing Zero” first aired in April of 2010. It stars Dennis Quaid in his new real-life role as a patient’s rights advocate. It is a very strong documentary about patient safety, and it made quite a splash in the world healthcare and patient advocacy. I had seen parts of it before meeting Chuck. I knew about the reason why Dennis Quaid was acting as a spokesman for patient safety as well. I had seen a repeat of his March 2009 appearance on Oprah while Fred was sick in the hospital. I heard him speak about the fateful overdose of his young twins due to a case of look-a-like bottles of blood thinner. The twins were mistakenly given a dose from a 10,000-unit bottle instead of a ten-unit bottle… and it happened twice. The twins did live, but this acted as a wake up call for Dennis, and he decided to help so others would not have to suffer as his family did. Dennis Quaid’s inclusion helped a strong documentary become a must-watch call to action.

Chuck asked me how I had gotten invited to CMS. I couldn’t tell him at that moment as I had forgotten the complete course of events, but now I see clearly.

I spoke before CMS, because on Sunday, May 3, 2009 I worked at Barstons Child’s Play- the toy store. I only worked at the toy store for three days when Fred was sick, and one of those days was May 3. Fifteen minutes before the store closed, Christine Kraft, a long time customer, came in, and I told her about Fred and kidney cancer, and she told me about Twitter, blogging, Health 2.0,and ePatient Dave. After Fred entered hospice, Christine put together a small Health 2.0 get together on May 27, 2009. That day I met Ted Eytan, MD. I would later find out he worked at Clinovations in DC and he would introduce me to Greg Fuller who would pitch patient participation at CMS on November 8. Greg would give them my name.

So on December 2, I spoke before CMS about Fred, patients’ rights, Stephen King, social media, special education, and Cub Scouts. I would tell them that putting the “H” in HIT requires remembering… Holliday, Fred; not the patient in room 6218. After I finished, a slow standing ovation spread through the room. Then Chuck Denham can over to speak with me about how he would like to spread this message far and wide. We spoke briefly, and when he learned we would both be at IHI on December 5, he asked me to film a small piece we could send to clinicians about why it is so very important that patients and caregivers have access to the electronic medical record.

Then Chuck did something very few people have ever done. He asked me how I was feeling, and he really listened to my answer.

I told him that when I paint or speak I go into that gray, sad place, and I walk in darkness for a while, but I come back renewed and refreshed. Chuck told me he has worked with many advocates, and he is concerned. He is concerned about our continual revisiting our deepest sadness, just so we can tell our tale to others. He worries about us and wants help us. So when we were filming on December 5, he asked what is it that helps me and inspires me and what supports me in my sorrow? I looked him in the eye, and I said God does.

So Dr. Charles Denham did something that no other doctor has ever done with me. In all the hospitals we stayed in, no doctor ever reached out and prayed with me.

In the many hospitals Fred stayed in, we were asked during admitting if we would like “a spiritual consultation.” This was asked with all the presence and compassion as the familiar phrase, “Do you want fries with that?” Even at hospice, when the bereavement coordinator spoke to me, she focused on my emotional support system. I told her that God sustains me. She rephrased it to me, “You mean that your belief system helps uphold you.” “No,” I said. “My belief system does not hold uphold me. God enters my soul and gives me peace.”

So, I sat there with Chuck and we prayed, and once again, I felt that wonderful peace of God.

CMS Presentation putting the H in HIT

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"Patient Centered Care" at IHI

“Patient Centered Care” as shown above is in progress on the 5^th of December, 2010 at IHI Conference in Orlando, Florida.

I paint about health data. I paint about patient stories and better healthcare practices. I paint about these concepts on public walls by city streets or on the backs of business jackets of healthcare advocates as they attend medical conferences. And sometimes I paint on canvases in the middle of a conference. When I paint onsite, I listen carefully to that which is said and incorporate the spoken meme as well as the twitter feed into the painting.

This painting is “Patient Centered Care” and I painted this at IHI (Institute for Healthcare Improvement) during the Patient Activist Summit and during two mini sessions on Health IT, Meaningful Use and Patient Data. If you look closely at this painting you see the background is the deep purple outline of the IHI logo. As the patient summit began the power point display was one slide. That slide was the IHI Logo. It loomed large above us as each activist introduced himself or herself. There were 50 or so activists and they were supposed to introduce themselves with a Twitter intro, keep it short only 140 characters. Not many were on Twitter so perhaps they misunderstood as they spoke too long during introductions. Perhaps they understood perfectly well, but after being in situations where no one listened while they or their loved ones where medically harmed, they were desperate for the chance to talk. So the “I” in the painting began to radiate circular waves of communication like a radio tower set to transmit. So we spoke, some tweeted and I painted.

I stepped back and listened to the patients and clinicians in the room who were willing to grasp hands and support the changing world of healthcare. So within the painting stand two beings. One is male and one is female and they are golden and seem almost holy and they clasp arms to support the world above them. On the right side of the golden female figure, a doctor stands. He is serene. His hand is placed under the golden women’s arm supporting her and joining in her effort. To the left, a young boy supports the arm of the golden male figure. In his other hand he holds an I-pad as this is the way the child communicates within his world. Both the boy and the doctor are people of color. Their inclusion is viewed as instrumental in creating balance within healthcare. Though they are on opposites sides of the canvas, they are the same person at different stages in one life.

To the far left, a suffering cancer patient leans on the shoulder of the golden male figure. Her gown back is gaping, but she is far beyond caring about this embarrassment, as she is deep within the final stages of her disease. She is leaning on the system for support and has no more energy to give. In front of her stands a child. This girl holds a children’s book about Phineas Gage. Do you know about Phineas Gage? He was a man who lived in the nineteenth century and had a metal rod driven through his brain. His story- the patient story- greatly affected the thinking of the times in regards to personality and the lobes of the brain. The child knows this story, she has read it in a children’s book. She knows about the power of stories.

The world in the center of the painting is the dot of the “I.” It is forms a yin and yang symbol within IHI where we are struggling to find balance. On the left side of the world North America is represented because that is where IHI began. An eye looks upon you from the continent. It is looking at you, demanding you use vision in creating better care. To the right side is a clock. The numerals are in Latin and the choice to depict time in ancient increments represents the current lack of clear communication and a reliance on old antiquated systems within many medical institutions. Both the hour hand and minute hand point to three ‘o’clock as we try to support the “triple-aim.” The clock itself represents an oft-heard clarion call of the activist: the time for change is now.

In the center of the world clock resides a call bell. Bart Windrum brought this bell so each activist could ring it after recounting his or her tale. It reminds us of to the old call bells patients used before modern technology introduced the silent, efficient and sometimes ignored call button. This bell is red and it represents warning. It is also a Liberty Bell and emblazoned upon it are the words “Information Liberty.” Above and connected to the bell are the scales of justice and they too point to the desperate need for balance between the provider and the patient.

Below the world is a table set to explain why clinicians need to consider EMR adoption. This element is based on the talk given by Ann Lefebvre, called “Integrating Health IT into a Statewide QI Program.” She mentioned that they invite their clinicians to discuss systems and EMR’s four times a year. So the table is set with plates saying things like EMR and HIT. The two candelabras at the table light the surroundings but they also contain the symbols of money and percentages. Often these kinds of talks can be more about incentives and dry data bytes and less about the actual patient outcomes.

Below the table is the Twitter feed for the conference and that pours into the patient centered medical home. The roof of this house is the IHI triple aim: population health, experience of care and per capita cost. The Cub Scout character connection of know, commit and practice surrounds it. I threw that in as I am a Den Leader and know that change only happens when you promise to do your best and you keep your promise. At the door of the home stands a very small patient. Patient centered care was discussed in an in depth fashion by Laura Adams, J. Robson and Jaquelyn S. Hunt during “Whose care is it anyway…and Can Health IT Help.” The patient is holding up a ruler and trying very hard to be centered, but if you look closely, you see the center of the painting and the home is slightly off kilter. This lack of center exists in the painting because that is the current experience in US health care. But there is hope. Due to the work of the folks from IHI and Patient Activists and Clinicians we have hope of attaining balance, and making this vision of the future a reality.

The finished piece can be viewed here. I hope you get a chance to look at it. This photo was taken right before I addressed the room about our family story and the meaning of the painting. I was not on the agenda that day, but the speakers were so gracious as to ask me to present. I told them about the very personal reason I advocate and I explained the painting.

The entire room of attendee's to the session "Who's Care is it any way...." gathered around the painting. You will see me in the middle, slightly left of center. I suppose that is a good place to be as we strive toward patient centered care.