For Angie

Last summer I visited Sapulpa, Oklahoma and walked the paths of childhood.

The house I once called home has been gone for many years.  But I walked to the block where I once played.  I stood upon a sidewalk that led nowhere.  The hot Oklahoma wind rippled my shirt across my sweaty back and the song of cicadas filled my ears.  I stood where my house once stood.  A greenish yellow lawn greeted me and our pecan tree yet remained. The pecan tree has reached such a majestic height in my many years of absence.

 


I walk through the yard that once was my own and gaze at the white house upon the hill.  This is the twin's house, the Berg house.  The two matching Pine Trees in the front yard now tower above me like the Pecan tree of my home.  I remember when these pines were small and four little girls played in this yard.
   
Should I knock at the door of the Berg house?  Should I tell the current owner of the summer days spent within?  No, I just close my eyes and the warm sun bathes my face as I walk back through the corridors of my mind.

 


I know this house. 

I know the cool blue gray paint of the front porch.  I know the side door opens to a dining room with vintage pocket doors.  I know that once a cat named Tiger lived here.  I know the way the light streams in through the living room sheers.  I know that the staircase is regal, but that did not stop us from riding mattresses down its bumpy length. 

I know my best friends once lived within this house.

I met the girl on the way home from school one day when I was only six years old.  She stood beneath a stop sign and smiled. She was one of two, but I did not know that then.  We talked shyly as strange children are want to do.  She said she lived in the big white house on the hill with her twin sister and the rest of her family.

That is how I met the twins. Angie and Katie Berg became fast friends with my sister Esther and I.  We lived only a block away from each other and spent many years walking to Washington Elementary School together. We were all in the same grade and they were as much a pair and my sister and I.

The twins lived a hard life.  They were the last children of a dying marriage.  They lived in the big house with five siblings and their mother.  We rarely saw their mother as she mostly stayed in her room.  She was stuck fast inside by grief of life lived not as intended.  We worried about the twins.  My sister Esther and I were poor, but there was always food in our fridge; not so Katie and Angie.  Many times I opened their fridge to find pickle juice, condiments and nothing else.  Or I would watch them live for days on only fried bologna.   My mother would press food into their hands every time she saw them, saying softly, “Those poor girls.”

Yet, even with all their struggles, the twins did well in school.  They played sports and had lots of friends.  They even had a paper route that occasionally Esther and I would help them with.  As the years past they grew stronger and their Mother grew less sad.  There was more food and we would dance and play.  Angie was so strong that by the end of elementary she could mow the sloped lawn of their yard.  She took great pride in keeping the house nice and was often working on it.   

Then in 6^th grade we drifted apart.  They had a party and invited all the popular kids, and did not invite us.  I asked Katie about it later as it hurt my feelings.  I was rather nerdy, chubby and looked the poor girl I was.  Katie told me it was not the kind of party I should go to, as I still played with dolls and things of childhood.  Angie and Katie both began to waitress at the best restaurant in town soon after.  With their meager earnings and their lovely home, it was enough to make the leap into the popular crowd.

Esther and I would watch the twins from afar.  We still see them and they were always nice, but we were no longer best friends.  Katie was a cheerleader and Angie was a homecoming queen.  I will never forget the day she was arrayed in all her finery.  I was on the debate team and the debate room is used as the green room for any high school stage event.  I vividly remember Angie curling her ringlets in my classroom.  I knew how soft her hair felt from braiding it many years before.  I walked up to her and touched it saying, “You look beautiful.”

And she smiled at me as she had always done and walked onstage into the light.

No, we were no longer close. The Twins no longer played with Esther and I. But when the abuse from our father became too bad during our junior year, we ran away from home and into the arms of our friends.  That night they welcomed us with open arms just as though we were little girls again.  It was with their phone we called the hotline number that led us out of a horrible home life.

Then we graduated from high school and flew away from each other.  Over the years I would hear things, good things and horrible things.  I would hear that Angie didn’t make it through WestPoint, and instead would go to OSU.  I would hear Katie was singing and was very good at it.  I would hear Angie got married, and had beautiful daughters.  I would hear that Katie was shot by a stalker and would never sing again.

Then a year ago I heard the whispers.  Angie might have cancer.  But they were only whispers, yet I knew cancer in my life and worried for Angie and her family.  Then a few months ago I started asking friends on Facebook if anyone could find Angie.  In March, Susan (Hartin) Ashbaugh contacted me with Katie’s number.  Then I was talking to Katie on the phone.  Angie was running out of time.  Could I visit?  I flew out a week later and into the arms of my friends.

If there is one thing that death has taught me it is, in the end, we become the children we always were. 

I stayed two days with Katie and Angie.  We went shopping and had ice-cream.  I met Angie’s three lovely daughters and I painted with them.  I met Katie’s beautiful daughter and I painted with her.

I learned that Angie had glioblastoma multiforme.  She found out the day before Easter 2011 after having a seizure.  She has had surgery, steroids and chemo, but it is growing inside her brain and she won’t be getting better.

When I saw Katie and Angie in March.  Angie could walk and talk, she could cook and hold her daughters.  She could kiss her husband.  She would forget things, but she did not seem too bothered by it and she would just smile.  She wears her hair short under a chemo cap, but it is still the lovely soft hair of our childhood.  I know, I touched it and said you look beautiful.

Now it is May, and Angie is in home hospice.  She can no longer talk, but she can still hear.  On Sunday, I called and Katie answered.  I wished Angie a Happy Mother’s Day. 

I like to think inside she smiled at me as she has always done.  And I know it will soon be time for her to walk onstage into the light. 

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.

The Monster, the Mythos and Medicine X

What does the television program Supernatural have in common with Stanford's Medicine X? That will take a bit of explaining…

The world of the televised science fiction/horror serial is not so distant from the world of medicine.  I find one often emulates the other and can often be analyzed using the same tools.  When I am in a call focusing on the message of HIT, I remind folks to remember the Metanarrative.  Technology is not the most important part of our discussion. The overarching patient story must be considered equally significant.

How do you explain story?  I recommend using story itself. 

Back in 1993, The X-Files changed the world of the sci-fi narrative.  Not only did it add valuable catch phrases to our lexicon, such as “The Truth is Out There.”  It set up a contentious dyad in the characters of FBI agents Fox Mulder and Dana Scully. Here belief confronted skepticism on a weekly basis. In each episode, the characters would investigate an X-File: the odd, perhaps paranormal cases that filled the cold case files.  These X-Files were beyond the normal range of FBI investigation and any agent who voluntarily studied them was considered suspect.

Each week the audience would watch Mulder believe and Scully attempt to debunk the cause of the X-file.  They would confront human horrors, monsters and aliens.  This weekly dance of the macabre has a grand history in the televised narrative and is used in classics such as Star Trek to camp favorites like Friday the 13^th the Series. This convention is called “monster of the week” and does not require a continuous narrative.  Often in “monster of the week” programming the shows could be watched in any order without causing the audience distress.

But The X-Files show is about that which is beyond the normal, so this show embraced mythos.  Above and beyond the weekly episode was a master narrative that was at first supported by the “monster of the week” device and then subsumed it.  This show became completely mythos focused towards its end as the characters were entwined within an epic conspiracy that involved covering up the truth.

The X-Files opened the flood gates for a new kind of televised serial and in 1997 Buffy the Vampire Slayer was first aired.  Buffy was the dissertation topic of my late husband Fred Holliday and he often marveled at the beautiful marriage of “monster of the week” and mythos within this program.  It also had a healthy dollop of Metanarrative with characters using lines such as “I can’t believe you, of all people, are trying to Scully me” or “Dawn’s in trouble, must be Tuesday.”  (Tuesday day was the day the program was aired.)    

Buffy aired from 1997 to 2003 and astounded critics and fans alike with its well written dialogue and its mythos that spanned 7 seasons.  During those years characters were allowed to grow and change.  Buffy went from being a high school student, to college student, to college drop-out, to food service employee, all the while spending her nights saving the world.  She was an every woman embracing all economic classes and with the death of her mother became the adoptive parent of her younger sister. Buffy died twice, only to return to deal with grief, addiction, domestic abuse in addition to the trials of leadership. Then in 2003 Buffy left the airwaves, but like The X-Files before her, she inspired other programs. 

In 2005 the BBC the creative team behind the reboot of Doctor Who would successfully pitch the return of this well loved franchise as a “Buffy” for the UK. Also in 2005 Supernatural débuted in the United States, in this program, like The X-Files, “monster of the week” was devoured by mythos.  Supernatural begins with a tale of two brothers, Sam and Dean Winchester, who define themselves as “hunters” and their goal is to find their lost Father avenge the deaths of their loved ones at the hands of a demon.  Along the path towards this goal they encounter various paranormal entities that they must overcome in order to help terrorized civilians. They are mission driven and in the cause of fighting for that which is good, they support themselves through credit card theft and card sharking. Saving the world rarely pays well.

Now the worlds of television and medicine begin to collide.

I painted this painting as I listened to episodes of Supernatural streaming on Netflix.  As I listened, I learned the protagonist Sam was attending Stanford.  He was smart, handsome and empathetic with strangers to the point of endangering his fellow hunters.  He was also somewhat elite, fussy and prone emotional outbursts when things did not go his way.  Dean, the other lead, liked heavy metal, drove a 1967 Chevy Impala, took pride in his blue collar and beer tastes.  In addition, Dean was loyal to the point of self-destruction and refused to accept the concept of fate.   

All of these thoughts swirled in my mind like the spirals in this painting, as I painted “Medicine X.”  

In this painting the tower and quad of Stanford define the piece.  The sky behind roils with inky spiraling clouds.  The time is now and healthcare in the United States is mired policy debates; while, like a beast of burden, the institutions of care limp forward toward an ever elusive goal.  In the center of the painting is an Ivory Tower.  It has entire sections sawed out and begins to resemble an electronic key.  Here is the key to saving lives.  As I am sure Dean Winchester would say to Sam, you must leave the tower to fight the monsters. So when you look at this tower, I want you to think of the silos that must open and the towers that must level so we can all communicate on common ground with provider, academic and patient. Also as Buffy could tell you there is only one Key that opens a portal between worlds.  That key is a life.

In the foreground, two girls stand within rising water.  They are patients in need of rescue from the coming flood.  One girl turns her back to the viewer and holds a smart phone in her hand.  The other girl looks out of the frame and a blue twitter bird perches upon her finger.  Though they look concerned but they are not panicked, because they have the tools of mobile health and social media to help them.

To the left of this piece, a series of people are pushing their rafts upon the rising water.  Our blocks from the tower have become rafts to navigate the deluge.  Here we have doctors, techs, academics, venders, designers and patients trying to find common ground.  Each uses the pole in their hands to move forward in the water.  As the pole crosses before their body each becomes the letter “X.”

We are the X in Medicine X.  We are the unknown part of the equation.  We are the mysterious other that has not been applied to the solution.  We are the files locked in a cabinet and dismissed as other or strange.  We are the ever arching story above and beyond the episode of care.

Currently many institutions are treating their patients like a monster of the week, destroying the one-off disease and forgetting we are a reoccurring character within in our own lives.  Data access and patient portals allows us to enter the land of mythos where a narrative lasts a lifetime.

Some of us will go farther, gentle reader.  We will journey into a world where incentives are not measured in dollars but in lives saved, where stones float and ivory towers work as keys that let people in rather than keep them out.  I look forward to seeing that place.  I know many doors lead there and I think one door will open at Medicine X  and I thank Larry Chu for designing a event that is patient inclusive.  I hope to see some of your there on September 28-30, 2012.

Listen to Me

Narrator: When people think you're dying, they really, really listen to you, instead of just...
Marla Singer: - instead of just waiting for their turn to speak

Fight Club, 1999

Portrait artists tend to hate ears. We often hate feet and hands as well. Those are the appendages that slow us down. They are so intricate, unique and time consuming. So we hide feet in shoes and hands behind backs. Ears are more challenging to hide, even a lovely maid with long hair has to show a bit of ear within the piece.

Ears are challenging to paint, but we can't ignore them. They symbolize something very important: We each would like to be listened to. When Van Gogh decided to chop off a piece of himself he did not choose a pinky finger. Always remember artists tend to highlight items for a reason and often the symbolism goes deep within our very soul.

We are not the only profession who would like to skip the ears. In medicine, many people who very sick cry out in pain alone. A call button is pressed and a nurse will check the bolus amount. An order will be placed for increased morphine while the patient writhes alone in pain.

As a relatively young and healthy woman, childbirth is the worst physical pain I have endured. I had two boys using the techniques of natural childbirth. My first son was born at Lawrence Memorial Hospital in Lawrence, Kansas. There the nurses were completely supportive of my choice and my husband as at my side throughout most of labor. The pain was bad but bearable, and we even laughed and told jokes to each other.

My second labor was in very different hospital. Here I was left alone on a gurney for a few hours whilst waiting for a delivery room. My husband was at home with our sick son. When I was finally given a room, I had to stop a nurse from putting pitocin in my line. She left the room in a huff. She left me alone, the call button out of reach while in active labor.

The pain was excruciating and no one was listening to me. I did not want pain medication. I wanted a hand to hold. I wanted someone to take the time to be with me.

I wanted ears.

Recently, I had the honor of painting a jacket for Dr. Richard Payne. Dr. Payne has a background in neuro-oncology. He practiced for many years and saw patients whose pain was not controlled. He learned from his patients that some pain could only be treated through listening. Rather than "medicalizing" patients he focuses on healing them. Healing rarely means curing in the world of brain cancer. It means treating the whole person in all their pain. Dr. Payne now focuses on palliative care and how it can be used to extend life and make life worth living.

So this is Richard's jacket, "Listen to me."

On this jacket, a series of ears are being used as hammocks. Patients lay within these cradling ears. Each patient has a doctor at their side, and the doctor is actively listening. It is a beautiful summer day and each hammock is attached to a poppy flower. The milk of the poppy is used to help each person reach a comfort level where the rest of healing is accomplished through listening and caring.

The background sky is a series of swirls. Swirls are a symbol of life itself. For there is love and light in this painting, and living while dying.

Links

When I am not painting or speaking, I am often online advocating through this blog, facebook or twitter.  I painted so much in the past month I am very behind on this aspect of advocacy.  Last week I wrote quite a bit, embedding several links within my posts.  I love links.  They not only inform others fully of your sources, they are an amazing breadcrumb trail of thought. 

But broken links make me sad.  Whether it is a website that is down or an author who has removed a post, I feel a sad loss when a link ends in silence.  I love to see an unbroken chain of thought  within community and recently I saw that at Linkage, an organization that focuses and services within the senior community.

On April 5^th, 2012 I painted and spoke in Columbus, Ohio at the Linkage Annual meeting.  CEO Scott Collins was an amazing speaker who highlighted the work of the past year as well as the future goals of the organization.  Sprinkled throughout the entire day were presentations focusing on members nominated for awards.  That was pretty amazing.  I have attended a great deal of meetings where winners received presentations, but nominees only get mentions.  It was great to see them both. 

During all of this I painted, whilst Debbie Hounshell, Director of Communications of Linkage, helped me with any questions I had.  The morning continued and we heard from Sue Viox, Marketing Director at Linkage and Jan Montague, a leader in whole person wellness.  I painted during all of these presentations “The Linkage Pinwheel.”

In this painting, there is an older grandfatherly man holding a young boy.   The man and the boy are holding a pinwheel in hand as it spools off the colors of the Linkage logo.  Are these two figures two separate people?  Is the same person at different stages in one life?   If we view every patient as the beautiful child they are within, how would that change their perception in the world of medicine?   I often speak to pediatric patients who make the leap into adult care and find themselves lost as they communication is poor.  Listening to amazing work of the Linkage members it seemed as though many were treating people with great dignity while embracing every nuance of the path of a life.

I spoke in the early after noon.  And used one of my favorite quotes to begin my presentation.  “Anybody can look at a pretty girl and see a pretty girl.  An artist can look at a pretty girl and see the old woman she will become. A better artist can look at an old woman and see the pretty girl that she used to be. But a great artist-a master-and that is what Auguste Rodin was- can look at an old woman, portray her exactly as she is...and force the viewer to see the pretty girl she used to be...” Robert A Heinlein, Stranger in a Strange Land

After my presentation Patrick Mead, a pastor and amazing speaker, led the audience on a winding path of thought.  His presentation was filled with equal measure laughter and tears.  I painted  “Your choice: Darkness or Light”

Patrick’s speech led us on a journey.  He used his past as an eloquent example of making brave and often scary choices to support the light.  In this picture we see two women in a gray blue sky.  One woman is smiling and one woman is solemn.  They walk in the path of our lives.  Much of our life is filled with gray decisions, but sometimes we are given choices to defend the good or to succumb to darkness.  In health professions these choices are faced in many ways on many days.  It is your choice and often it is a very scary one.

That was my day at Linkage.  I am glad I had a chance to attend and add another link to our amazing chain of advocacy.  There are wonderful and kind people there.  The CEO Scott Collins gave me one of the greatest compliments you can receive as a speaker.  When he came to the podium to thank me after my presentation, Scott’s eyes were bright and his voice was the coarse timbre of a man holding back tears.  He began to speak around his voice and finally said: “I did not expect to cry today.”

Thank you Scott. It is leaders like you that will change our world, as you walk through a veil of tears towards the path of light.

Rally with Us in Support of Patient Data Access May 6th!

The AHA (American Hospital Association) is hosting their annual meeting on Sunday, May 6^th at The Washington Hilton 1919 Connecticut Ave.  Washington, DC.

They will meet right down the street from where I live, where my children live and where my husband died.  They will meet at a hotel that is on the same street as the mural 73 Cents.  That painting is a testament to the need for data access and I painted it in the 3 months immediately following my husband’s death.

The AHA meeting will take place mere feet away from the offices of the National Partnership for Women and Families.   On Wednesday, Christine Bechtel Vice President of @NPWF wrote a post entitled, “Don’t let them destroy patient protections in health IT!”  Her post objected to the hostile stance of the AHA towards patients’ data access. 

The AHA would like patients to wait 30 days to see their medical records after an episode of care.  This stance is in direct opposition to the hard work of many doctors, patients and members of the Department of Health and Human Services.

I humbly invite all of you to meet me on the sidewalks surrounding The Washington Hilton on Sunday May 6^{th .}   We will gather from 2-6 in the afternoon.  Wear your Walking Gallery jackets and be prepared to wave them or to wear them.  Make signs supporting patient access to the medical record or use the ones I make with the help of children and friends.  Come in your Sunday best or your weekend casual wear.  Bring your entire family.  Let your children join my little Isaac in his joyous shout, “Healthcare! Healthcare!”

I will bring bubbles and we shall walk and blow them in the air.  Let us be joyous and each bubble will represent the over-blown egos of association that would dare to deny us access to our own information.

For a moment in time those bubbles will glisten with beauty and appear to be a seamless whole entity… and then shall pop.

Be brave for I know many of you work in healthcare and taking on the AHA can be scary.  But take inspiration from the statue in front of this grand hotel.  It is a statue of General George B. McClellan.  My wonderful husband Fred, who was a civil war buff, detested McClellan.  McClellan constantly over estimated the strength of the opposing army and his tactics were unsuited for the battlefield.  He almost lost the war for the Union.  He was a bureaucratic leader not the man for timely decisions about life and death.

It seems that statue is a fitting symbol for the AHA stance today.

Lives not Livelihoods in Meaningful Use

If I were to die tomorrow and all that was left of me was my right hand, you would know two very important things about me.  You would know that I am a painter and I was a writer.  No matter how often I scrub my fingers the patina of paint discolors my cuticles and the cracks in my skin.  And though I left a childhood of writing lines 30 years behind me, I still have the finger callus of a longhand writer. 

If I were to die tomorrow, and all that was left of me were these words that I write.  You would know I learned how to type on a typewriter.  The two spaces behind each line is a tell.  I learned to type in an age where uniformly sized keys created unevenly spaced letters.  Hence two spaces were necessary to signify the end of a sentence.

I do not need to do that anymore.

Yet, I persist.  I have tried and tried to change my ways and press the bar only once, but I fail.  I have fallen into the siren sway of habit.  My muscle memory runs ahead of my mind and leaves my thoughts to rest two spaces behind the last.

Today while working on my public comments for Meaningful Use Stage 2, I saw once again that the American Hospital Association has decided to promote livelihoods over life itself.  They do not support our rallying cry that patient data access must be part of Meaningful Use and it must be timely.  In stage one Meaningful Use the rule called for access within 4 days of request.  As we head toward defining stage 2 many patient advocates are asking for data access within 24 hours or real-time.  The AHA (American Hospital Association) is asking us to go back in time and accept data access 30 days after a care episode as was codified under HIPAA.

AHA is stuck two spaces behind us. 

 This organization is living in a world of 30 years ago, consisting of typed reports and hands that are marked with the callus of a scribe.

Their very insistence of a return to the rules of yesteryear demonstrates the dangerous path of habit itself.  Once you begin to design systems without patient inclusion it becomes habit to leave us out.   Habit tends to settle like concrete, pliable only in it early stages and hard as rock as it cures.  Like concrete, habit crumbles in time, but often it takes decades or jackhammers to remove it.

I urge those who are in a position to create the final rule of Stage 2 Meaningful Use to be brave and leap beyond a past care model that left patients out and embrace a new tomorrow of patient inclusion.

I urge everyone to publicly comment before May 7, 2012.  Please send a message strong and clear that we are all patients in the end and we deserve to see our own information.  Do it for the ones who died due to simple errors hidden within closed records or comment for the children yet to come who will live in a different tomorrow.  They will not comprehend an education system that creates a writer’s callus. They will expect timely information.

You are setting the concrete upon which these children shall tread.  You decide.  Shall they lead the world or shall they walk two steps behind? 

Long Stories: The Story Of Meaningful Use and Why the patient voice matters..

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