A Gallery Show on November 22nd at Politics and Prose: Showing Mommy’s Art in Daddy’s Library

Did I ever mention Fred was for the most part a stay-at-home dad? Yes, he was an adjunct at three universities and worked part-time at the video store, but otherwise he was with the children. When Isaac was a baby and Fred would have to wile the hours away taking care of an infant, he would often strap Isaac into a front-pact baby carrier and go to Politics and Prose. Politics and Prose was Fred’s favorite store. He would spend hours there. As Isaac grew, Fred would place him first in the backpack, and as time passed, the stroller, and off they would go to Politics and Prose and divide their time between the film section and the mouse hole in the children’s section.

This was Fred and Isaac’s routine for three years. Then in March 2009 Fred became ill. Fred could no longer visit bookstores. I would bring books to him instead. On his birthday, I brought him three books from P&P, and due to his intense pain and his pain medication, he would never finish one of them.

When Fred died in June, we received many letters of sympathy, but one letter I treasure the most came from a P&P bookstore employee. She said how sorry she was that we had lost Fred and recounted all the many times Fred had carried Isaac in her store. I had had no idea that they had spent so much time within the store. While little Freddie was in school and while I worked, Fred and Isaac were surrounded by a maze books in a room filled with a love of knowledge. My eyes filled with tears as read of this vision of a father and son.

While painting the mural 73 cents in July, many staff members came to speak to me about the painting. Even the co-owner Barbara came out a few times to talk about medicine and paint.



When Howard Dean had a book signing at Politics and Prose, he came out to see the mural with one of my friends. When I tell people how to get to the mural 73 cents, I often say you can’t miss it. It is right by Politics and Prose.

So you can image how happy I was to be invited to show my canvas work at Politics and Prose later this month. The canvas work I have done will be displayed in the coffee shop in the basement of P&P from November 19, 2010- January 5, 2011. The opening reception will be Monday, November 22 from 5:00-7:00 pm. I will be showing many pieces about our personal struggle for information during Fred’s cancer journey. I will also show some pieces that comment on social media, open government and Meaningful Use. I hope you can make it.

I am glad I will see Fred’s face again inside of P&P, or as my little Isaac calls the store: Daddy’s Library.

The Palliative Effect of Hair Styling

DSC_0238
Originally uploaded by health2con

I recently attended the Kaiser Permanente Executive Leadership Conference in Washington, DC. KP leaders gathered from all over the US for this event. At the opening of the meeting, KP showed a compilation of several videos to present my art advocacy mission supporting patient access to the medical record and the painting 73 Cents. It was a very powerful video, and after watching it, several members of the audience came up to talk to me about … my hair color.


I am one those people blessed to have been every hair color. I was born with a thick head of black hair. In a month or so, it fell out and came in blond. As I grew, my hair turned red and was that color for many years. By the age of 8, my hair was light brown. In my teens, my hair turned to a dark brown. With having such an amazing array of colors in my youth, I found I didn’t feel constrained to any one color, and in my twenties, I decided to lighten my hair back to the red of my childhood. When Fred grew ill, I was still the light red I had been for many years. After Fred died and I began my painting advocacy, I continued to keep my hair a light red. While working on 73 Cents, I spent days painting in the bright sun, which bleached my hair even lighter.

As the months of painting and grief progressed, I looked at my roots coming in completely gray. I now could truly say I had had every color of hair. But I am only 38 and do not plan to go gently in that gray night. So I went to a local salon for a color consultation. The nice stylists there told me I should go darker as it would look nicer with my complexion.

I submitted to their excellent advice. While I sat in the chair, I spoke to the stylist about hair and cancer. I told her about my husband’s 10-week hospitalization. After about six weeks, his hair had grown so long. We inquired about barber services. The hospital informed us there was a nice lady who performed haircuts for patients. She was very nice, but she did not have a lot of skill with cutting the hair of a bedridden patient. The entire experience turned into a farce that Fred, his folks, and I shared with friends for weeks to come.

After I shared my story with my hairdresser, she told me a tale of her own. She told me how she was the last one to shampoo and style her mom’s hair while her mother was in home hospice. It was a beautiful tale. It made me want to cry. I could almost see her hands gently washing her mother's hair. I could hear the happiness and sorrow she felt in her attempt to help her mother. Yes, she made her mother feel pretty; but this offered more than that. She touched her mother. She caressed her at a point in her life when she so need to be touched. She anointed her hair with oil…

So I am not bothered that the most asked question after viewing a video of 73 Cents was about my hair. I know often when we talk of hair, we might also be talking about beauty and death. Perhaps I have gone darker … because I have gone darker. Like Dark Willow or Dark Phoenix, I am not the same as when I started.


I brought two portfolios with me to the KP conference. One is light and cheery; it is my "before" album. For so many people ask if I was always an artist; I have always been an artist. I used to paint book characters and children's bedroom murals. The before portfolio shows the work I have done with children for the past eight years. The "after" portfolio is for the Medical Advocacy Mural Project. It is filled with images that often disturb but still retain hope. I like to create images that make you think, even if they tend to cause upset. This portfolio is darker, but there are still windows of light. This portfolio contains medical murals, jackets with patient images, and canvases I paint on-site at conferences.

Recently at Health 2.0 in San Francisco, I met a very beautiful woman named Diem Brown, and I painted her sadness. Diem was only 23 when she was diagnosed with ovarian cancer. She found herself adrift with no one to ask for help. Wedding and baby shower invitations were arriving in the mail while Diem was struggling to pay for chemotherapy wigs and to arrange drivers to her various medical appointments. She thought, “Why is this so hard? Why isn’t there a registry for cancer sufferers like those that exist for brides?” Due to Diem’s valiant effort such registry exists now, and it is called MedGift. Her story touched me so that I painted it into the Health 2.0 painting Bridging the Great Divide.

In this part of that painting, the bride is combined with the cancer patient. The best point in her life is combined with the worst. The sorrow is palpable. The cancer bride's hair is falling out, and strands are held in her hand. She is reaching for the apple of knowledge. In that apple is placed an eye. Knowledge without vision helps no one.


Weeks after I painted this, I was sent the wedding photos of Katie Kirkpatrick. If you have never seen these photos, I recommend you take a moment to view them. Katie was suffering from end stage cancer when she married her high school sweetheart. Under her lovely gown her limbs were swelling as her organs began to shut down. Just glancing at the photos made me cry, as I saw a body so similar to Fred’s before his death. She was dying and she was beautiful and … her hair was so pretty. She died five days after her wedding.


Thank you, Diem, for sharing your vision with us all. I am sure there are many people who will thank you for creating MedGift to help them when things seem their worst. Thank you, Katie, for sharing photos of your happiest day while so sick; we shall never forget you.

And thanks to the folks at the Kaiser Permantente who were brave enough to invite a cancer widow to an executive conference to remind us ...we are all patients in the end.

Watching THE DAILY SHOW while Dying

Jeff and Fred in Hospice
Originally uploaded by Regina Holliday

When I young, I was a very good student at Sapulpa High School, but I was twice sent to the principal’s office. I was sent once for health and once for comedy.

I was a journalist for the high school newspaper and was looking for a story. The student body had recently completed a survey wellness check. I found out the school office had a copy of the results. I wrote an article reporting the findings. The statistics I mentioned included drug use, alcohol use and sexual promiscuity within the school. After turning in my story, I received a summons from the principal. The school paper would not print my story. I wondered aloud if I had made a mistake in my fact checking. The answer was no--they just did not want me to expose the results of the wellness check.

Later in the year, I wrote and directed the senior assembly, including the skits. I was called to the office yet again, as some of the skits contained a comedic analysis of the school that was a bit too scathing. I was ordered to revise the skits and make them “nice.” I to some extent complied, although a little of the original biting humor remained. I was tired of being called to the principal’s office. I thought it was rather ironic that it was called the principal's office, as I found my principles tended to get trampled there.

I had found that using humor and art I could often make a point that would never be allowed in the more mainstream press. I guess that is one of the reasons I spent over 10 years watching The Daily Show on Comedy Central. I liked the show, and Fred loved it.

If all clinical services were equal, would you decide which hospital to stay in based on whether or not they had Comedy Central? Fred would have. He stayed at five hospitals during his eleven weeks of care, and only a few offered this on their basic cable menu. Fred loved the program The Daily Show with Jon Stewart and its spin-off The Colbert Report.

Fred and I started watching this as our nightly news in 1996. Back then it was hosted by the very handsome and blond Craig Kilborn. I thought his very visage was in itself a joke about whom we choose as an anchorperson in this country. He was a very pretty talking head spouting humorous nonsense.

In January of 1999, Jon Stewart took over at the helm. Fred already loved Jon Stewart’s comedy work and was very impressed by this new shift in leadership. I was not an instant fan. The show seemed to get a bit more serious and the humor had more of a bite to it. This was now a thinking man’s farce and Fred would often use the Internet to do further research as stories on the show piqued his interest. We watched The Daily Show together for years and in 2005 began watching the spin-off show as one half of “Even Stevphen.” Stephen Colbert created The Colbert Report.

In time, I was won over by the program and began appreciating the biting satire that both shows used to lampoon political parties, world leaders, and the hapless celebrity. But I was most impressed by Jon Stewart’s autism benefit of 2008; as he asked for donations from the audience so few people raised their hands. You could see outrage on his face as he pledged to donate in front of a crowd who had far much more money but less heart. That day I began to love Jon Stewart, because it is all a joke…. until it is not.

In March 2009, Fred was hospitalized. There were many problems with communication at our first hospital, but at least they had Comedy Central available on their cable menu. When we transferred with an out of date and incomplete medical record to a new hospital. Fred was saddened to see that there was no Daily Show to help ease his pain. But at least this hospital had WIFI, so I was able to upgrade our old laptop so Fred could see past shows via the Internet and surf the web. As I have said before, there are many ways of relieving pain.

A few weeks later, Fred was transferred to rehab. At this facility there was no Comedy Central and no WIFI. After spending a few weeks suffering incredible pain in the rehab facility, the decision was made to enter hospice. Fred was crashing. Upon entering hospice, Fred was not eating, drinking, or talking. In 24 hours he rallied under the good care of the hospice team. He was able to talk with friends and family and watch The Daily Show again. A few weeks later Fred came home for hospice care. It was a very hard time. I was trying to balance caring for my husband with caring for the kids, while Fred’s mother helped as best as she could. It was very hard, but each night we would hold hands and watch The Daily Show.

Here we come back to the title of this post. In the early morning of June 17th, around 1:00 am Fred could not sleep. He was having such trouble breathing. I turned on the TV, and holding hands, we watched the late night repeat of The Daily Show and The Colbert Report. I don’t really know what they spoke about. I was listening to each breath Fred took and trying to ease his pain. I don’t know if it was funny. But I know Fred was happy to see a show he loved and hold his wife’s hand as he lay dying. Fred said his last words at around 6:00am, and by late morning he died.

When Fred had less than twelve hours to live, he spent one hour watching Jon Stewart and Stephen Colbert.

So this weekend, I will be attending Jon Stewart’s Rally to Restore Sanity/ Stephen Colbert’s March to Keep Fear Alive. In a way, I am sure Fred will be with me. It is being billed as the Million Moderate March. This is where all the regular people who do not attend marches can be counted. I will be there as the wife and mother and fan of the show. I will also attend as the activist I have become. Because sometimes things seem like a joke until they are not.

In researching this post, I called all of the hospitals that Fred stayed into verify whether or not they currently offered Comedy Central. I first checked every website to see if anything was listed in their patient amenities. Not one site offered a listing of Cable viewing channels. Each hospital seemed taken aback by my question, one hospital employee even laughed at me. No one knew the answer. In one hospital they transferred me to maintenance, after a pause of a few seconds the Supervisor of Housekeeping said, “Yes, we do have Comedy Central.”

I am glad. I am sure there is another Fred out there who laughing with The Daily Show as the morphine pump provides its gentle comfort. I wonder though, which pain relief is impacting the patient more?

Patients bringing it all to the table...

Have you ever seen me paint in public? I am usually covered in drops and splotches of paint. My hair is a wild, wind-blown mess. My rolling shopping cart is parked beside me filled with brushes and the accoutrements of my craft. When carrying my supplies to the job site, I seem weighed down with the weight of the world, and strangers on the street often assume I am homeless. My canvas is usually a public wall on a city street. I paint beside grit and litter and a faint aroma of urine. What I paint is not always pretty, and neither are my surroundings. I take in this ambiance and a vision from my soul, and I smear them on a wall for all to see.

People stop. People stare. They ask me questions. Like a single rose growing in an abandoned city lot, I do not belong. When I painted 73 Cents, hundreds of people stopped by and asked questions. I would step off my ladder and explain the work. I would explain the importance of data access and patient rights. Those who questioned often apologized for their intrusion. I would tell them no, do not apologize. This is part of public art. This is part of discernment. Your questions inform the art and make it better. The best questions often came from the children. They would ask anything. There was no topic too personal or gross for a child to ask. The parents would often try to hush their inquisitive offspring, but I would just answer. I love the questions of childhood. Ah, to view the world as little children…

I have been thinking quite a bit about the child’s eye view of medicine and information technology in recent days. I have been especially focusing on the view of the child with special needs and autism.

A few months ago, Kevin Kruse invited me to speak at his conference e-Patients Connections. I knew of Kevin through his Twitter presence but also through his sister, whom I met through Twitter and Facebook. Kevin’s sister, Diana Kruse Sebzda, is an amazing thinker and writer on grief. We have talked on the phone about grief and social media, and she is a great friend. So when Kevin contacted me about speaking, I was already primed to say yes. But Kevin took it a step further and asked me to paint on site as well. He then proposed that we auction off the work to raise money for a charity of my choice. I knew at that moment what charity I would support and what would be the body of my speech. I would support the Ivymount School Model Asberger Program as my husband did, and I would speak of our son Freddie.

Do you know the wishes of your loved ones? Have you ever taken that advance directive conversation a step further and found out the in lieu of flowers of your partner/parent/child? I vividly remember sitting at my husband’s side and speaking about pallbearers and which memorial charity would Fred choose. He chose Ivymount. He picked the school that helped our son and held his broken heart within their open hands. He picked the school that counseled and guided a child through the worst moments in his life and provided such solace in a time of great anguish. They did this for us, and they do it everyday. Everyday they help children who have been so hurt in this world. They take children who arrive in pressure blankets and sound canceling headphones and guide them to a place of peace where they can learn and flourish. They take children who come without friends who have been taunted and ridiculed and help restore their self-esteem. The teachers and staff of Ivymount remember what it feels like to be a child. They remember the battleground of the school yard. They know the importance of being allowed to join the play.

So I said yes. I would speak, and I would paint. I would paint a playground. And I would speak of Freddie.

This is a closed data loop.

In health information technology circles we often speak of closed data loops. The patient’s medical record may be easily viewed by the doctor or institution, but not by the patient. I often think of hoops in relation to this discourse. I think of circuits, rings, circles, loops, and Galilee. I even wrote a poem about it called “Wheals on the Bus.” In this painting I am trying to convey the awful isolating power of the closed data loop. The doctor/child is very self-satisfied. She sways within her hula-hoop listening to her headphones. Her eyes are closed, and she is smiling. The patient/child looks on as if a sorrowing icon. His clothing is half patient gown and half Roman column. He is fixed in place with no avenue for communication. The sky above is covered by a glaucoma-filled eye. The all-seeing eye is blinded, and the loop remains closed.

This is an example of point to point communication.

So in this piece we have the concerned patient/child looking into the distance. She holds her sad small PHR (personal health record) in her hand. It looks like a toy silo with a cute little toy tractor. It is a toy; and good for pretending, but it does not communicate within the larger HIE (Health Information Exchange.) To the patient/child’s left two doctor/children are engaged in a rousing moment of double dutch jump roping. Their information surges back and forth within a double helix made of pills and pixels. In the center jumps the joyous hospital administrator. She jumps happily within the spinning data loops as other executives wait their turn.

And there my vision stopped and the conference itself began to affect the work. For as I painted, Sona Mehring, founder of Caring Bridge, began to speak. She gave a very informative speech about the power of Caring Bridge to help families and caregivers during a time of crises. She went on to explain the importance of utilizing the service as no one posts this kind of information on his or her Facebook status line. It was instantly incredulous. I was a no one, I suppose. I did not use Caring Bridge during Fred’s struggle with cancer. This was a purposeful choice. I did not want to separate our little family tragedy from the news feed or from the friend feed. I wanted all of my friends with me on this journey. So every night I posted a status line that told you about our medical reality. If you had looked at my news feed on June 17, 2009, it would have told of summer camps and Farmville. It would have had obscure movie references and talk of weekend barbeques. And you would have also seen:

“Fred passed away this morning. It was really peaceful. Joan held his one hand with Freddie. I held the other hand with Isaac. It was as good as it could be. As Freddie says, Daddy is no longer in pain. We will miss him. We will see him in Heaven.”

While I painted, I felt the power of the tragic stories told on Caring Bridge combined with the endless sharing of Facebook. I saw what could happen when you do not quiet sickness and death, but instead share the message far and wide. So in this painting Caring Bridge marries Facebook. They are zooming by in shiny, red car. Behind them trails a just married sign upheld by the Twitter bird. Also trailing behind are tin-can phones. Those phones connect you to social media. The administrators and executives waiting in line to play EMR double-dutch are communicating via these phones. They may not yet have grasped the importance of implementing a fully functioning and patient participatory EMR (Electronic Medical Record), but if social media is doing its job, with every post, tweet, or share, we are showing them there is a better way. And I wonder if you noticed the bridge in the painting is a modified image of the Key Bridge, because this is truly the key to making health care work for us all. We must have open communication at every step of the way.

This is the future of HIE...

The final painting has an unfinished look about it. This is a scene where doctors, patients, administrators and members of pharma all are holding up the play parachute. They are joyous. They are bouncing data balls into the air. Those data balls spell HIE. This is what a fully functioning health information exchange should look like. We should all be linked together in a circle: included, not excluded. The painting is unfinished because we are not at that point yet. These figures are still ephemeral, but they are holding up the parachute. Playing with a parachute is fun. It billows so nicely, and the silk is so smooth, but we should never forget the reason we have parachutes. Parachutes save lives, but only if you can pull the cord. A parachute that is packed away and inaccessible will not help as you fall.

This final painting in the series I began on the first day. There is an elephant in the sky. I painted this as Kevin spoke of the elephant in the room when we speak of medicine and compliance. That long-suffering elephant has been a beast of burden, hauling its stacks of medical records from doctor to doctor and from place to place. The elephant remembers how it has been treated and seems so gentle and quiet until it trumpets warning.

Well, if you haven't figured it out yet. I am trumpeting! I have hauled brushes and paints. I have carried reams of records. I am an e-patient. I am a mother, a poet, and an artist, and I am ringing the claxon. We will no longer be quiet. We will question like the mind of a child: always searching, always learning and bringing something new to the equation with every point we make.

I am so glad I was invited to e-Patients Connections. I am so happy that Kevin was brave enough to allow me to bring forth the view of the patient. I am glad I could paint just as well in a fancy dress within a large ballroom as I could on a city street. I proudly spoke before those assembled about my wonderful son and informed them about the amazing way he sees our world. I am thankful for Red Nucleus, the company who purchased the paintings. That money will help children lead a better life. I am also filled with gratitude for the amazing help I received from Pixels and Pills. Not only did they post an interview about my work--they also took the pictures of the paintings that were sold and gave them to me on a USB bracelet so I could write this blog. They were gracious and kind and incredibly helpful throughout the entire conference. I am also thankful for the amazing group who listened that day as I talked of despair and sadness, but also of love and joy. The room was filled with amazing advocates for participatory medicine. Some of the greatest voices working within the e-Patient movement were there such as Dr. Ted Eytan, Dr. Danny Sands, E-Patient Dave, Donna Cryer, Phil Baumann, Jane Sarasohn-Kahn, Liz Scherer, and so many more...

At the close of my speech I shared my poem “The Wheals on the Bus.” One line is “ARRA! Arise!” As I finished speaking, the audience did indeed arise. An amazing energy filled the room, and I knew the elephant had come into its own. We were all standing up ready to grasp the parachute and send the ripples far and wide. Now we must go forth in the world as empowered e-patients and change everything!

Check out this SlideShare Presentation:

E-Patient Connections 2010

View more presentations from Regina Holliday .

To Boldly Go Where We Do Not Belong

Painting at Holy Cross
Originally uploaded by Regina Holliday

I paint in public settings. Sometimes, I set up my easel on a busy sidewalk in front of a hospital and begin to analyze patient care using cadmium red. Or I create a beautiful and tragic painting on the back of a business jacket then ask my dear friends to wear these jackets in a room filled with traditional “suits.” I ask them to go where they do not belong.

I tend to embrace outsider art. I tend to appreciate the work of those without formal training who paint because they must. There is a spirit and a drive within their work that is not easily surpassed by technical mastery of the form. I tend to love to see art in unusual places and artists where they do not belong.

This past March, I recited poetry at Bus Boys and Poets during a celebration of healthcare reform. The room was filled with activists, musicians, and poets. There was quite a stir when an entourage of well-dressed figures entered the room and sat on the front row. I recited my poem “Wheals on the Bus". I spoke of riots and rights and data access. I spoke of Martin Luther and Martin Luther King Jr. I spoke of Rosa Parks in relation to healthcare reform. It was a powerful poem. As I stepped off the stage I stood in front of the reason for the entourage. Rep. John Conyers, Jr. (D-MI) stood up clapping and held my hand and thanked me for the poem. A congressman stood within a sea of artists, and we welcomed him.

This week I saw congressman Conyers again. He was asking the comedian Stephen Colbert to excuse himself from a Capitol hearing and submit his testimony into the record. This was too serious a proceeding for a comedian to take part in. He would only distract from the real purpose of the day or perhaps he was only there to promote his show or his march. He did not belong.

I suppose in 1981 there were people who thought Jack Klugman did not belong on Capitol Hill, either. Jack was the lead actor on a very popular show called Quincy, M.E. He was only an actor portraying a doctor, but he had come to speak about orphan drugs. The room was packed with reporters and cameras as Klugman spoke, and his appearance that day is part of the reason the Orphan Drug Act was passed. The other part was the patients. The room was filled with children and adults all suffering from the effects of their rare diseases.

I am so glad an actor and a large group of patients came together in common cause to help those who suffered so. I am sure that day seemed as much a three-ring circus as the recent Colbert appearance.

I will be painting at a conference soon. I will have my easel near the stage and paint and live tweet, and perhaps, I too will seem to be a circus act.

On Tuesday the 28th and Wednesday the 29th of September I will be in Philadelphia. I will be attending the E-Patients Connections 2010 Conference. I will be speaking at the conference about patients’ rights, special education, and participatory medicine. I will be one in many. There are many amazing people working toward positive medical outcomes attending this conference. Looking through the speakers list I see CEO’s, doctors, HIT designers, Pharma reps, and individuals involved in government. I also was pleased to see a poet and an actor. Perhaps things are becoming more inclusive. Perhaps there are fewer off-limit venues for patients and artists.

On Wednesday, I will speak in the morning. At the end of my speech, we will auction off the work I painted on site. It will be a three-panel piece explaining the current role of patients within HIT and the vision of what that relationship could become. I will use the metaphor of a child on the playground to visualize this complex subject. It should be amazing. We will live tweet the event, and people can bid online with the hashtag #ePatCon. All proceeds will go to Ivymount School. This is a non-public school that focuses on helping children with autism.

Whether an artist paints at a conference, or an actor speaks on Capitol Hill, it is important to being willing to step outside the comfort zone. This is a good thing for people and patients to understand. Do not let anyone tell you that you do not belong. When you present the testimony of your health history don’t excuse yourself from taking part in the ongoing discussion.

Painting with my Zombie Finger and Thoughts of the Living Dead

Painting with my Zombie Finger
Originally uploaded by Regina Holliday

When I was painting in preparation for the gallery show in July, I was in pain. I had smashed my finger in a ladder, and it was swollen with the under-nail blackened with blood. As I painted, I thought of how much my finger resembled a zombie’s finger. Gradually painting, with each stroke of the brush a kind of agony, I remembered zombies used to be slow.

My husband Fred and I often talked about this phenomenon. We had grown up with films like Romero’s Night of the Living Dead. Zombies would stumble and walk slowly, groaning as they came. Even an out-of-shape store clerk like Shaun, from Shaun of the Dead, could outrun a zombie. The terror aspect of zombies resided in their unstoppable nature. Zombies did not sleep, they did not stop, and they were everywhere. These are the type of zombies depicted in the 2006 book World War Z by Max Brooks. This book was a follow-up to the very popular Zombie Survival Guide of 2003.

The Zombie Survival Guide itself addressed a pop-culture meme of its time. In 1999 The Worst-Case Scenario Survival Handbook by Joshua Piven and David Borgenicht was published. In the series of books that followed the authors explained how to save one’s self in extreme situations such as crocodile-infested waters or quicksand. In bars and at parties throughout America we took it a step further and asked all of our friends what their zombie survival plan was. In my age demographic, and I am 38 mind you, I have never met a person who did not have a zombie survival plan when asked to provide one.

Whilst this zeitgeist hobbled along, director Danny Boyle and screenwriter Alex Garland were creating 28 Days Later, released in 2002. In 28 Days Later, zombies ran. Purists will say the zombies in 28 Days Later are only humans infected with a virus, but it opened the floodgates. From the Dawn of the Dead remake of 2004 to Zombieland of 2009, zombies now would sprint toward their victims, tearing them to shreds in moments.

We are rapidly approaching the ten-year anniversary of fast zombies, and I think this change in zombie behavior in media is a reflection of the culture of our times. This is only the most recent example of our continuing denial of the image of death within our culture. We can deal with a frantic moving creature trying desperately to live, but many cannot accept the vision of the slow decent towards death.

When I visited Fred’s mother and father for the first time in the spring of 1993, I loved their charming home and was surprised to see a vestige of an older time within their walls. The Holliday house had a formal parlor. The parlor was furnished with imitation Chippendale pieces and matching lamps in a Victorian style. The space was usually dark and serene, a place apart from the busyness of the kitchen and other rooms. Once upon a time in America, everyone who had a decent-sized home would have had a formal parlor. This space had the best furnishings and art, and it was the room in which the recently deceased would be laid out for presentation before funeral. After the Civil War, families began giving over burying responsibilities to an outside business called a funeral parlor. With this change in the way Americans dealt with the transaction of death, formal parlors were replaced with living rooms, and Americans began to distance themselves from the realities of death.

Another vestige of this time that is rarely seen today is postmortem photography. I vividly remember going through a tin of old photographs as a child. I remember holding up a picture of a “sleeping” baby and asking my mother who the child was. Even at six years of age, I can remember feeling something was not quite right within the image. My mother paused and then told me it was the dead sibling of my father. The child had not lived long enough for a picture of it while living so they had a portrait taken after the child had died. I remember holding onto that picture for what seemed like an eternity. Although I placed it back in the tin 32 years ago, I can still see that baby in my mind.

Years later when Fred met my family, he held my hand as he patiently looked through years of family scrapbooks and photograph albums. After viewing a few albums, he was surprised and a little disgusted to see we took pictures of the dead. In our albums he saw my aunts and uncles and distant cousins all arrayed with their funeral finery. In 2001, one year before the fast zombie would make its debut in the world of film, I stood beside my husband as I took a picture of my dead father in his casket. Fred whispered in my ear, “Do not take a picture of me in my casket after I die.”  I respected Fred's wishes and when my Fred died, I did not take his picture. I did not have to. That image is seared within my mind.  But I also respect the wishes of all those families who take pictures of the love ones who have died.  Every now and then I see them in my Facebook and mourn with these families.

I recently read Atul Gawande’s piece in The New Yorker, Letting Go: What should medicine do when it can’t save your life. I was struck once again with the extreme discomfort most doctors have for discussions about end of life care with their patients. In our cancer journey, Fred and I often had to deal with the inability of Fred’s doctors to talk about the reality of palliative care and hospice as an option. In the emotional roller-coaster of potential treatment and curative care, we were left without a very good understanding of the benefits of a palliative course. After Fred was no longer eating or drinking and was in extreme pain, this direction was suggested, and Fred signed the appropriate paperwork. When we transported Fred to the hospice facility, both the EMT transport team and myself thought he might only have days left to live.

Due to the excellent care of the hospice team, Fred rallied and he lived for almost another month. The curative care without a palliative component that Fred had been receiving at the rehab facility was killing him faster. I was therefore not surprised when I saw an Aug 19, 2010, article from The New England Journal of Medicine stating, “Among patients with metastatic non–small-cell lung cancer, early palliative care led to significant improvements in both quality of life and mood. As compared with patients receiving standard care, patients receiving early palliative care had less aggressive care at the end of life but longer survival.”

So why do people resist the concept of hospice and palliative care when it has shown such ability provide a better quality of life, and in so doing, perhaps even extend life? Why do all of those friends of mine have a well thought-out zombie survival plan but have never considered filling out an advance directive? Why do we resist the reality of death as a part of life?

I think we were cheated out of the few accessible images of death within our culture when zombies became fast. Death is rarely fast in the world of cancer. It can take years or weeks or days to die. I have talked to enough spouses and caregivers at this point to know the experience of death is often the same. In Dr. Gawande’s article, Rich, the husband of Sara Monopoli, described her final hours. Rich recalled, “There was this awful groaning.” There is no prettifying death. “Whether it was with inhaling or exhaling, I don’t remember, but it was horrible, horrible, horrible to listen to.”

I know exactly how horrible those groaning breaths sound. I heard Fred make them for hours as he tried to breathe at the end of his life. But I heard them before in a pop culture world that tried to make sense of the senseless.

MedStar CMIO Boot Camp: See Poe & The Mask of The Red Death

Recently, I was invited to attend the Medstar CMIO (Chief Medical Informatics Officer) boot camp by Trenor Williams, MD, CEO and co-founder of Clinovations and Gerard Burns, MD CMIO at MedStar. Dr. Burns had seen me speak on July 13 at HHS upon the announcement of Meaningful Use. He had thought I would be an excellent guest speaker (In my youth, I spent six weeks at Navy boot camp, and this was much nicer.). It was a conference held at the Doubletree in Columbia, MD. It was a calm, low-key event. I passed by a pool filled with families enjoying an end of summer swim as I entered in the mid-sized meeting room. I was very happy to be invited, and I thanked both the folks from MedStar and Clinovations.

In the weeks prior to the event, I researched several terms and acronyms we would be speaking about. Jeremy Wong, also from Clinovations, asked me to consider any articles I would like to include regarding “how patients feel they have been directly affected by something that occurred when their doctor used CPOE or clinical decision support.” Hmm… Well first I had to find out what CPOE and (CDS) clinical decision support meant.

CPOE is Computerized Physician Order Entry and is a very large aspect within the EMR and Meaningful Use. I don’t think many patients are talking CPOE. I did a search and found quite a few HIT (Health Information Technology) venders promoting the positive outcomes of CPOE adoption. I found the government encouraging certification of systems and patients advocacy groups concerned about potential deaths due to computer error. Where were the e-Patients in this conversation? I couldn’t find any reports or blogs from a patient perspective discussing CPOE.

As it was with CPOE, so it went clinical decision support. Clinical Decision Support Systems are computer programs that assist physicians in the decision-making process during diagnosis utilizing patient data. I could find virtually nothing written from the patient perspective on this subject. In researching patient involvement within these two terms, I felt like I was hitting my head against a wall. Physicians and hospitals were having a party, and they didn’t invite the patients to the gala event. So my mind began to search within and thought of gothic horror.

Instead of CPOE, why not see: Poe. (Edgar Allan Poe, that is.) That thought brought me right back to my 10th grade English class and The Mask of the Red Death. I knew what I would speak about at CMIO boot camp: Meaningful Use/patient access and The Mask of the Red Death.

On the way to the event my friend Dr. Ted Eytan and I had such a wonderful conversation in his zip car. He answered the final question I had. “How do you pronounce CPOE? As in "C.P.O.E.", or is it "see Poe"? I can’t find the pronunciation online.” Keeping his eyes on the road and smiling, he said that it was cute that I didn’t know how to say it. CPOE is pronounced. C.P.O.E. We laughed together as a doctor and a patient and went on with the drive.

Around noon, I was introduced as the guest speaker by three doctors: Dr. Gerard Burns, Dr. Trenor Williams and Dr. Ted Eytan. I was quite the special guest by the time I spoke. I decided I would inform the room of my ignorance of the correct pronunciation of CPOE. I could have just pretended prior knowledge, but instead I thought I should make it clear how little patients use these terms. I find great problems persist within the doctor/patient relationship when we smile and nod pretending to understand. So I admitted my ignorance of the correct pronunciation. I was surprised when the audience responded that both were right; it depended on the hospital. I told them great, because when I think of CPOE, I think of Edgar Allan Poe. I then asked how many in the audience had read The Mask of the Red Death? Three people raised their hands out of 40.

I was really feeling like a special guest speaker at that point. I had been married to a man who had a doctorate in film studies with an emphasis in television. We had often talked about special guests. In television, the special guest is sometimes a celebrity, but is always a performer outside of the regular cast. They do not belong. Often their insertion into the plot indicates the moment a television show has jumped the shark and fallen into the world of the absurd. Well, I could ignore the vision of my speech, or I could begin a dramatic recitation of The Mask of the Red Death. Have I ever mentioned that I was Oklahoma State Champion of Poetry Recitation in 1991? I decided to perform a tale of gothic horror.

"A prince invites the members of the aristocracy to masquerade ball at his abbey where they weld the doors shut as a plague called the Red Death blankets the land. As the partygoers enjoy the festivities flitting back and forth through six brightly colored rooms, a clock chimes on the hour, and silence falls each time. As the party continues, a figure costumed as a corpse appears. The prince takes such a costume as an affront and confronts the ghastly guest in the final seventh room drenched in the color black with red light streaming in. Upon facing the figure the prince dies and the party attendees soon find the guest wears no costume: the Red Death has walked among them."

It is powerful reading, don’t you think? It also functions as a very apt cautionary tale when you consider the way the CPOE is utilized in hospitals.

Why can’t I find the patient perspective on CPOE? We have not been invited to the ball. Where is the patient information entry aspect to be used in conjunction with the physician’s input? As the Meaningful Use rule points out, patient access is the core element in the functionality of a viable EMR (Electronic Medical Record.) While researching, I was deeply offended by the jovial comments about “sweet stimulus cash” that I saw posted on many HIT pages. Too many companies view ARRA and HITECH as a party they can attend while death walks the land. Locked up in ivory towers or data silos, too many members of the medical establishment are locking themselves away and closing the venues for communication.

I told the audience at the CMIO boot camp that twelve days after my husband Fred died, I attended NHIN Connect 2009. The grand ballroom at the JW Marriot was filled with HIT leaders, hospital administrators and physicians. I asked a question of Aneesh Chopra, Chief Technology Officer and Associate Director of Technology, whom had delivered the second keynote. My Question was, "Hi, my husband received his diagnosis of renal cell carcinoma on March 27. At that point, I began to email, do Internet research, try to find every resource I could to help him. I began to Facebook--Facebooked every night, daily stating his status, developed over 200 friends and then began to Twitter, ended up speaking to a doctor from Boston, Mass. Did everything I could as a caregiver to support my husband using the Internet. Developed a blog. Also asked for Internet data. Prior to this I did not (often) email, nor did I use a cell phone. During a three month period (I) became complete caregiver and a walking PHR for my husband. I am asking you: how will the patient and patient advocate be allowed to access the information of (the) EMR, to have that a standardized form, that we all as advocates of our spouses or loved ones, (can) provide the best the best level of data and catch all kinds of errors in the medical record?”

His response compared medicine to retail, with medicine in a negative light. He mentioned plasma screen televisions and computer assisted advertising and then concluded, “I applaud you for what you (are) doing with limited resources to try to help your family, but I am committed to making sure we have a foundation available so that clinicians on their own and by themselves and amongst themselves can start to have those kinds of transactions captured.”

I did not see patient access to the EMR addressed within his answer. I was a widow fresh from the graveside asking questions that affect the lives of us all. I was not supposed to be there. They were having a ball and I was Death walking among them.

I should have quoted Poe: “Even with the utterly lost, to whom life and death are equally jests, there are matters of which no jest can be made. “

The CMIO speech lasted about thirty minutes. After the speech we had a very nice lunch. They were happy to see that I wanted to stay for some of the after-lunch sessions. I got to hear quite a bit more about CDS, EMR’s and Meaningful Use. I heard quite a few folks mention they used Cerner systems. My ears perked up, as I had attended the Meaningful Use Summit at Cerner in June and had gone through their virtual tour of the Cerner EMR system. As the folks from MedStar began discussing the subject of making the EMR more patient-centric, I mentioned in the open Q&A that Cerner’s system could allow for a visual avatar to be incorporated to the functionality of EMR. An avatar, be it an actual photo of the patient or an image chosen by the patient, is very important in creating greater visual memory. I further added, “Why do you think Facebook and Twitter are so successful? They do not take our faces away.” One of the CMIO’s responded that that function had been turned off within their system.

I remembered when I was seeing all the amazing abilities of Cerner’s EHR/EMR systems I asked if any hospitals were doing these patient-centered things. They responded, “Yes, if the client decides to implement that feature.” “So, that client would be the patient?”, I asked. The really nice folks Cerner paused and looked slightly concerned. “No--the client is the hospital.”

That is the wrong answer. We are the clients. We are the end users. We are all patients in the end. And although it was meant to display respect, I am not a special guest. I am a patient, and we are refusing the one-off part. We want to be part of the cast. We want to be a ubiquitous part of every panel and every conference. Someday, I want to stand beside Ted Eytan, Trenor Williams and Gerard Burns and together say “Remember when it was unusual to have a patient on a panel?”

Meaningful Use, Patient Access and Mask of the Red Death

View more presentations from Regina Holliday .