Elementary advocate

A patient and caregiver perspective presented by Regina Holliday

Everything I needed to know about being a patient,

I learned in elementary school.

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,Media would connect their hearts.

And 14 years later they would meet upon a stage in a scenic painting class at Oklahoma State University. And they would talk of media, Pop Culture and Stephen King’s Dark Tower.

And they would fall in love.

Fred and Regina married and they painted, worked and played together for many years.

Regina worked in a toy store, taught pre-school art, and painted community murals.

Fred continued his schooling and worked as video store clerk.

In 2005, Fred would get a PhD in film studiesand would write his dissertation

About “Buffy the Vampire Slayer.”

In 1998, Freddie III joined the family game

followed by the littlest player Isaac in 2006.

For many years, that was the Holliday Family story…

In 2007, life seemed to be falling apart.Our 9year old was diagnosed with Autism.Fred was an adjunct at two colleges, but could not find a full-time job in his field.

Although Fred and I were working six jobs between the two of us, we could not afford a family health insurance policy. I was covered by the toy store, but we couldn’t afford the family rate and still pay rent.

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.

The Last Primary Doctor’s Appointment: A Very Short Play

Regina: “I didn’t see you weigh him.”PA: “We don’t always weigh our patients”

Doctor: “Mr. Holliday do you think maybe you are depressed?”

Fred: (Looks up at Doctor with a look of dismay.)

Regina: “Of course he is depressed. He is in excruciating pain. We want an MRI.

…I am worried about his kidneys.”

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.”

“During this hospital stay, how often did doctors treat you with

courtesy and respect?”

“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.

Need the book: Under the Dome

Regina emails book buyer 4-3-09

Buyer emails book rep. 4-3-09

Rep emails publisher 4-3-09

Publisher gets approval from Stephen King 4-3-09

Publisher mails it. Arrives 4-7-09

Fred reads book 4-7-09 through 5-1-09Under the Dome is published Nov. 2009

Need Access to Fred’s EMR

Ask to read test results/lab/patient record 3-27-09 through 4-7-09Nurse Internist Social Worker Oncologist

Nothing 3 minutes Fills out Fills out at computer disability forms disability forms

Ask to read test results/lab/patient record 4-8-09Visit Oncologist during office hours

Speak about case, write down notes in journal never shown the computer screen

Visit Medical Records Dept. 4-17-09 ask for a copy of EMR

Quoted a price of 73 cents per page & a 21 day wait

Finally get a copy 4-23-09 due to a paper work error…

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

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

After waiting three weeks for a surgery, chemotherapy, a palliative consult and walker,The Doctor told us on Saturday April 18th, “We’ve decided to send you home on a PCA pump.”

Fred was a “good” patient. He didn’t make waves. He didn’t complain.

3 months of

Primary Doctor’s Visits 2 Hospital Emergency Rooms

Prescribed 4 types of Pain Killers and

4 types of Laxatives

Treated at 5 facilities during

11weeks of hospitalization

46 ambulance transports

1 Patient named Frederick Allen Holliday II

“Using 0 to 10 where 0 is the worst possible and 10 is the best possible, how would you rate this hospital?”

6

hour wait while staff try to cobble together a medical record using a phone and a fax machine

When I eventually got a copy of Fred’s record and it was instrumental in guiding Fred’s care. I used this information to create an easy to understand

“face-sheet.”

This was the “Medical Facts Mural.” Then I painted it on a wall in Pumpernickel’s Deli in Washington, DC for all of our neighbors to see…

Next, my new friends in the world of Health 2.0 began blogging.

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 ?

Facebook: a PHR with Privacy Issues?

In the seven months prior to diagnosis, 10.7% of Fred Holliday’s Status PostsRelated aspects of his current medical condition…

He visited his Doctor weekly for a two month period prior to hospitalization.

He went to two different ER’s in the two months before diagnosis.

He exhibited all of the most common symptoms of Renal Cell Carcinoma...

And he listed

5 of them on Facebook.

Facebook as a Caring Bridge

I joined Facebook on September 14, 2008 in order to organize the our son’s birthday party.

On March 25th 2009 I had 46 friends and had posted 67 status lines.

In the months during Fred’s hospitalization,

I would use Facebook as an

information clearing-house.

Hundreds of friends and family would log on in order to check Fred’s medical status.

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

“Shouldn’t Art stick to what it does best- the delivery of pleasure? And forget about being a Paintbrush warrior. Or, is it when the bombs are dropping we find out what art is really for?”-Power of Art by Simon Schama

I painted 73 Cents from June 23rd to September 30th 2009. It is still there today, at 5001 Connecticut Ave. in Washington, DC. It is a monument to Fred and patients everywhere.

And just like the internet,

it advocates 24 hours a day and you cannot tell a

wall to shut up.

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?”

Sometimes, we must look back to the lessonsof childhood to improve the world today.

We must remember, “Just a girl” can save the world

Regina, age 6

The world of HCAHPS meets the little girl in me.

“What is the highest grade or level of school that you have completed?”

How would the girl inside me change

things?.

The way patients are treated reminds me child abuse in the 1980’s. No one talked about it.

Then we heard of Adam Walsh and saw faces on milk cartons.

We must be taught to Speak up.

We must be taught to speak up,

again and again

until someone listens.

During this hospital stay, how often did nurses explain things in a way you could understand?

A pre-School student can learnhow to care for others,If that is what he is taught.

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

Think outside the box. Toys can help you heal. Gymnastic ribbons can be covered with ICD9 codes and used for a flash mob.

Window stickers can turn a clinical room into a sacred space.

Ogo Sport rings can lift up your chin on your darkest day.

Puppets can help you say good-bye.

How would a toy promote better care for patients?

Why not have CDS (clinical decision support) for patients? If a child’s toy can figure any item in the world in 20 questions, whyCan’t we have CPOE and CDS in every hospital and family practice?

Why can’t a patient input their own data using medical app on a smart phone while waiting in office or prior to the appointment?

During this hospital stay, how often were your room and bathroom kept clean?

To the shock and awe of my preschool students,I began painting on my classroom wall in the last weeks of school.

They were astounded.

Every child knows you aren’t supposed to write upon a wall.

Unless …. it is really important.

And every child knows not to get paint on their best clothes,

Unless it is for a very good reason

I am glad that the child in me can tell the child in them,

Sometimes we must right on walls, Paint on clothes, And mount the stage.

Sometimes we must speak up, as a mother or brother, sister or friend.Sometimes when we raise our hand in the classroom of the world,

We save a life. Or just as importantly, we help people smile while they are dying.