Painting the Picture

Painting the Picture: The Patient’s Perspective

Painted and Presented by Regina Holliday

WifeMotherDaughterSales ClerkArt TeacherCaregiverWidowArtistPoet

PhD Father Husband Professor of Film Video Clerk Writer Son

Where does a story begin and where does it end?

Frederick Allen Holliday II, PhD

Regina Sue McCanless

In 1978, there was a little boy named Freddie who lived in Maryland.

And many miles away in Oklahoma, lived a little girl named Regina.

And though miles would separate them,Stories would connect them.

14 years later, Fred would meet Regina on stage in a scenic painting class at Oklahoma State University.

We would talk of Stephen King’s Dark Tower.

We would fall in love.

Tides and tears,days and years,

And new characters would enter Our personal story.

Everything we ever wanted… Resolutions January 2008: 1. Get Medical Insurance for the whole family 2. Get little Freddie into a special needs school 3. Fred gets a job in his field 4. Spend more time together as a family 5. Get a two bedroom apartment

Freddie’sIEP Binder

Fred was happy with his new job.

But he was very tired,

He went to the doctor and was diagnosed with hypertension.

During the months of

January, February and March of 2009, Fred was in constant pain. He visited two Emergency Departmentsand was sent home.He visited his Doctor’s officemany times.

He was given pain pills each time.

Often he posted a Facebook status relating to his health

On Friday March 13th, We went to the ER because Fred was in so much pain .

The waiting room was filled with stained glass windows and lovely blue couches.

And Daddy waited, Mommy waited, Freddie waited and Isaac waited.

And after 3 hours of waiting,they sent us home with pain medication.

Fred was hospitalized on March 25th 2009 for the administration of tests.

On March 27th, he was told while alone thathe had “tumors and growths.”

He was scared and confused and did not understand.

His oncologist left town for the next four days to a medical conference and was not reachable by cell phone.

I asked everyone involved in Fred’s care about information on his case. What was the diagnosis? What were the treatment options? Would he get a pain consult?

For asking questions, Fred’s oncologist called me “Little Miss A-type personality.”

This is my husband’s medical record.

I was told it would cost

73 Cents

per page

And we would have to wait 21 days to get a copy.

“She must not have tried very hard to get the record….”Comparing access to an unpublished book by

Stephen King to accessing the

Electronic Medical Record while hospitalized.

“During this hospital stay, how often was your pain well controlled?”

After waiting for 5 days for a transfer

to another hospital for a second opinion,

they were sent with an out of date and incomplete medical record and transfer summary.

The new staff spent 6 hours trying to

cobble together a current medical record Using a telephone and a fax machine.

This is the

vital clinical informationfrom Fred’s electronic medical record.

Presented in the style of the Nutrition Facts Label.

Then painted on the wall ofPumpernickel’s Deli in Washington, DC.

I got on Twitter on May 3rd to find Christine Kraft and e-Patient Dave to talk to them about kidney cancer.

Within one day were in email contact and then spoke on the phone.

By ten o’clock May 4th 2009, I was talking on the phone with Dave’s Oncologist about my husband’s cancer.

Why did we get more help and answers from

Social Media than from our local hospital ?

Facebookas a Caring Bridge

We fulfilled our final 2008 resolution on June 11th 2009.

We moved into a two bedroom apartment so I could care for Fred in home hospice.

He died six days later on June 17th, 2009

Painting Advocacy meets

Social Media

Street art is truly the first global art movement fuelled by the Internet. –Marc and Sara Schiller, Wooster Collective, 2010

This is the painting 73 cents.

This is the vital patient story, the social history , the sacred heart of Fred’s

ELECTRONIC MEDICAL RECORD.

On Tuesday, October 20th 2009We dedicated the Mural while singing songs from Buffy the Vampire SlayerMusical “Once More With Feeling.”

When ended the night singing our question,

“Where do we go from here?”

The world of HCAHPS meets the little girl in me.

We bring the Patient Voice. We bring new eyes and new vision.We walk and spread the word.

Welcome to the Walking Gallery.

I am little Miss A-type personality…

And children, once silent, can march within a movement.

The in HIT

Isaac at his Doctor’s appointmentwith his EHR in his hands.

We are all patients in the end.

The other Q-Tip Therapy:

Draw with water color pencils.

Blend color with moistened Q-tip.

Feel better?