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.
Monday, September 27, 2010
Monday, September 6, 2010
Painting with my Zombie Finger and Thoughts of the Living Dead
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.
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.
Saturday, September 4, 2010
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?”
Tuesday, August 24, 2010
"Would you eat off a toilet?
With this lesson in mind, I visited the bathroom at the Sheetz Station in Hancock, MD during my family vacation. It was a functional bathroom, also unisex like the bathroom at the BP Station in DC. It was a little dirty, but I was pleased to see a note placed above the mirror with the following statement.
“WE WANT YOU TO BE SATISFIED EVERY TIME YOU VISIT SHEETZ, SO I PERSONALLY PROMISE THE CLEANLINESS OF ALL SHEETZ RESTROOMS. IF THEY’RE NOT TO YOUR SATISTFACTION, OR IF YOU FEEL THERE IS ROOM FOR IMPROVEMENT, PLEASE CALL ME TOLL FREE AT 1-877-4SHEETZ OR EMAIL ME AT SHEETZ.COMNot long before reading this I had painted a picture called The Onion and The Orchid. Not long after seeing this I wrote the blog post of the same name. I explained in that post that an onion letter is a letter you write when you have a bad experience with a business. An orchid letter is written to a business that exceeds expectations. I emailed Mr. Sheetz. Guess what? He emailed me back the very next day.
-Steve Sheetz, Chairman"
At this point you might wonder why a medical advocacy blog is writing so much about gas station bathrooms. It is simple really; we expect gas station bathrooms to be a little dirty, and in juxtaposition we expect hospital bedside tray tables to be really clean.
I am sure many readers of this blog are familiar with the rolling adjustable table used in hospitals for the food service. Perhaps they have even seen it used to hold prep supplies for a dressing change of a surgical wound. I was astonished when I saw the other way it is used. If a patient is incontinent the bedside table becomes a changing table. Each hospital may use different supplies. Some use adult sized wipes and foaming soap. Some facilities personnel use piles of white washrags and throw the rags in the soiled linen container. I was astounded as I was instructed that this was the proper way to do a change. I have worked as a preschool art teacher for many years and we would never use a changing table to feed a child.
I focused much of my advocacy on records access. Yet, when Institute For The Future created a visual competition called Bodyshock the Future, I thought I must address this issue. My entry is called Would you eat off a toilet? I created a painting called Are you alright?. This was the euphemism a nurse used to ask my husband if he needed a bedding change. I wrote more in depth about that in the post Code Brown.
This painting looks very different than my regular work. The colors are the bright tones of the 1950’s. I was trying to show the danger that lurks below the pleasing surface. Everything seems slightly disjointed and disturbing in the piece. But I really love Fred in it. I got his eyes perfectly. Those are his quiet pleading eyes. Those eyes are saying, “Help me, please.”
Well, I will try to help other patients and caregivers by spreading awareness of the multiple uses of that bedside table. After I tweeted my entry to BodyShock The Future, my friend Peter Amsel, better known as the crazycomposer on Twitter, pointed out that Mythbusters had already proved that a toilet seat is cleaner than most surfaces in a home. I loved his comment, partially because when Fred was hale and hearty we had watched that episode as a family. The main reason I thought his comment was so apt was because it proved the need for greater awareness. The toilet seat is as clean as it is because we clean it with the knowledge that it is a toilet seat. But when I floated this art awareness proposal around to my friends, some of whom are doctors, none were aware of the dual use of the table. We need to know. We need to know so we can protect ourselves.
All of this brings me back to the email for Mr. Sheetz. He said:
“I thank you for your ‘onion’ letter and I apologize for the conditions you encountered. We will work to make it better and hopefully one day we will earn an ‘orchid’ letter from you! I’m very familiar with this store because it’s one of the only ones in the company with one restroom for both males and females, a situation I don’t like. We can’t expand, as we would like to because of zoning issues so we have to live with the current state. But believe me this is no excuse for the conditions you encountered. As I said we will work hard to make it better!
I read your blog and found it very interesting. You are a very talented writer as well as painter! You touched a chord with me because my brother was diagnosed with kidney cancer in February 2006 and died August 21st, 6 months later. I spent a lot of time with him at the Cleveland Clinic and really feel we had great care, unfortunately it was stage 4 when it was caught and the only hope at that point was ‘trial’ drugs.
Once again I thank you for taking time to write.”
I wrote an onion letter to Fred’s first hospital, the one we stayed in for almost four weeks. They wrote back two months later. They said they would use my many comments as educational opportunities for staff. They had excuses for their behavior in virtually every instance including the poor communication about my husband’s bedding changes. They did admit, upon reflection, that they regretted they never had a family meeting with us.
I went back in person on May 14, 2010 and told them of my advocacy. I encouraged them to place “Speak Up” patient advocacy signs throughout the facility. The customer service representative took my name and number and email.
I am still awaiting a return call.
What does a Sheetz and BodyShock the Future have in common? They are both trying to harness the power of communication. The BodyShock competition gives us a reason to read about brilliant visual ideas that could change the future of medicine. Sheetz believes so firmly in their customer relationships within new media that the president responds to emails from consumers. They both get the idea that future is about transparency, relationships and communication. They get the power of social media.
I hope you can vote in the upcoming days on my entry. We can change things if we are all willing to speak out.
Sunday, August 22, 2010
Re-Elect Fred Holliday
Shall I write about Fred Holliday II, PhD today? Should I regale you with tales of my loving spouse? He was a pop-culture maven, a hilarious partner and loving Dad. Or should I tell you about Freddie Holliday III? He is my fun, impulsive, brilliant son, who happens to be on the autism spectrum. I so often write about Fred Holliday in this blog. But today, I shall write about the first Fred. In March of 1993, I met my future father-in law, Fred Holliday. He was big and smiling, with a gray beard and glasses.
He ran a hardware store. I loved that he ran a hardware store. As a child, I used to visit hardware stores for fun. I am also the only bride I know that registered for a cordless drill. Fred and I got along very well from the start. I even worked in the store occasionally after I married my Fred. Fred always chuckled at my inability to use the cash register with confidence. He could not believe it when I eventually ran a store that used six registers at one time. Fred was such a kind storeowner. He would often get calls at night while eating dinner. He would open up his store after-hours to help these customers in need. Fred Sr. was also mayor of the Town of Grantsville. He had done so many good things in that town. He was an active member of the Lion’s Club and was always doing volunteer work and very involved in his local community.
In 1998 he decided to run for County Commissioner. I was very pregnant with little Freddie when I attended Fred’s first fundraiser in the summer of 1998. It was a steak feed in the park in Grantsville. It was such a nice day. In September when little Freddie was only a few days old he sported an “Elect Fred Holliday” pin on his baby blanket. Fred Sr. was elected to his first term later that fall.
Fred is an excellent county commissioner and has served in this post for almost 12 years. He has been and always will be a dedicated public servant. He takes his responsibilities and duties very seriously and is one of the most contentious elected leaders I have ever met.
In March 2009 when my husband Fred fell sick. My father-in-law would drive up every weekend to visit his son in the hospital. He would ask his son if he could stay and help in anyway. My Fred would say, “No, Dad you go back and do your job as County Commissioner. You have a very important job.” My Fred was so proud of his father and loved to see him do his very important job. So, Fred would leave his wife with me and drive those lonely 2 and 1/2 hours back to Garret County. He would work all week as County Commissioner and each night go home to an empty house and think of his dying son.
On June 17th 2009, as my husband breathed his final breath his family and friends surrounded him. His friends David and Jeff were there. I stood beside Fred’s bed with Isaac in my arms. My mother-in-law Joan and our son Freddie stood at the other side of the bed. The only one missing was Fred Sr. He was driving up to visit as his son died.
A lot of people might have become bitter about their job and life after such an event, but not Fred. He continues to work within the community for the greater good and he continues to do his job. And he does it well.
This fall Fred is running for re-election as the Republican Candidate for County Commissioner in Garret County Maryland. Back in the spring, I offered to help him in anyway I could. He asked if I would mind painting two campaign signs. He wanted his face painted about 3 feet high and the text would read Re-Elect Fred Holliday County Commissioner District 2. It takes a brave man to want their picture so large. Well, Fred has always been a brave man.
So those signs now are displayed in Garrett County for all to see. I hope the people who look upon his smiling face will know what a great man he is. I hope they realize what an amazing public servant they have working for the best interests of the county.
I also helped by going door to door asking Garrett County residents if they would be willing to place signs of support in their yards. Some folks were willing some were not. A few folks told me they were Democrats. I told them I was too. I said that Fred Holliday was the man to support regardless of party affiliation. They put up signs in their yards. I was so happy. During the fight for Health Care Reform, I saw a lot of mud slinging by both political parties. I am so happy when I can see people stand together and support a common good.
I will try to help in another way by inviting all of you to attend his upcoming fundraiser.
2010 Re-Election Fundraiser Dinner benefiting
County Commissioner Fred Holliday, District 2 (Authority Gerald E. Beachy)
Saturday, August 28th 2010
4:00-8:00pm
Avilton Community Center
Exit off I-68, Lower New Germany Road, to Avilton Lonaconing Road
Tickets are available for $20.00 per person on site or call Joan Holliday 301-865-5387, Sue Beachy 301-895-5387 or email fjholliday@hughes.net.
You can find Fred on Facebook at http://www.facebook.com/profile.php?id=100000325697682&ref=ts
Donations can be made at the dinner or send to:
Friends of Fred Holliday
283 Pine Grove Road, B-12
Lonaconing, MD 21539
He ran a hardware store. I loved that he ran a hardware store. As a child, I used to visit hardware stores for fun. I am also the only bride I know that registered for a cordless drill. Fred and I got along very well from the start. I even worked in the store occasionally after I married my Fred. Fred always chuckled at my inability to use the cash register with confidence. He could not believe it when I eventually ran a store that used six registers at one time. Fred was such a kind storeowner. He would often get calls at night while eating dinner. He would open up his store after-hours to help these customers in need. Fred Sr. was also mayor of the Town of Grantsville. He had done so many good things in that town. He was an active member of the Lion’s Club and was always doing volunteer work and very involved in his local community.
In 1998 he decided to run for County Commissioner. I was very pregnant with little Freddie when I attended Fred’s first fundraiser in the summer of 1998. It was a steak feed in the park in Grantsville. It was such a nice day. In September when little Freddie was only a few days old he sported an “Elect Fred Holliday” pin on his baby blanket. Fred Sr. was elected to his first term later that fall.
Fred is an excellent county commissioner and has served in this post for almost 12 years. He has been and always will be a dedicated public servant. He takes his responsibilities and duties very seriously and is one of the most contentious elected leaders I have ever met.
In March 2009 when my husband Fred fell sick. My father-in-law would drive up every weekend to visit his son in the hospital. He would ask his son if he could stay and help in anyway. My Fred would say, “No, Dad you go back and do your job as County Commissioner. You have a very important job.” My Fred was so proud of his father and loved to see him do his very important job. So, Fred would leave his wife with me and drive those lonely 2 and 1/2 hours back to Garret County. He would work all week as County Commissioner and each night go home to an empty house and think of his dying son.
On June 17th 2009, as my husband breathed his final breath his family and friends surrounded him. His friends David and Jeff were there. I stood beside Fred’s bed with Isaac in my arms. My mother-in-law Joan and our son Freddie stood at the other side of the bed. The only one missing was Fred Sr. He was driving up to visit as his son died.
A lot of people might have become bitter about their job and life after such an event, but not Fred. He continues to work within the community for the greater good and he continues to do his job. And he does it well.
This fall Fred is running for re-election as the Republican Candidate for County Commissioner in Garret County Maryland. Back in the spring, I offered to help him in anyway I could. He asked if I would mind painting two campaign signs. He wanted his face painted about 3 feet high and the text would read Re-Elect Fred Holliday County Commissioner District 2. It takes a brave man to want their picture so large. Well, Fred has always been a brave man.
So those signs now are displayed in Garrett County for all to see. I hope the people who look upon his smiling face will know what a great man he is. I hope they realize what an amazing public servant they have working for the best interests of the county.
I also helped by going door to door asking Garrett County residents if they would be willing to place signs of support in their yards. Some folks were willing some were not. A few folks told me they were Democrats. I told them I was too. I said that Fred Holliday was the man to support regardless of party affiliation. They put up signs in their yards. I was so happy. During the fight for Health Care Reform, I saw a lot of mud slinging by both political parties. I am so happy when I can see people stand together and support a common good.
I will try to help in another way by inviting all of you to attend his upcoming fundraiser.
2010 Re-Election Fundraiser Dinner benefiting
County Commissioner Fred Holliday, District 2 (Authority Gerald E. Beachy)
Saturday, August 28th 2010
4:00-8:00pm
Avilton Community Center
Exit off I-68, Lower New Germany Road, to Avilton Lonaconing Road
Tickets are available for $20.00 per person on site or call Joan Holliday 301-865-5387, Sue Beachy 301-895-5387 or email fjholliday@hughes.net.
You can find Fred on Facebook at http://www.facebook.com/profile.php?id=100000325697682&ref=ts
Donations can be made at the dinner or send to:
Friends of Fred Holliday
283 Pine Grove Road, B-12
Lonaconing, MD 21539
Friday, August 20, 2010
Monday, August 16, 2010
The Onion and the Orchid
Fortunately for me, my mother-in-law collects magazines. If you ever visit her idyllic country home in western Maryland, you will see them artfully arranged in crocks and antique half-barrels. They are quite pretty and colorful as a home accent, especially the covers of the periodical Country Living. They can be easily read, and they span decades. Actually they are quite a resource, as I haven't found many of the articles from these periodicals available using a Google search.
I do not usually read women's magazines. I usually read books, online articles, or the local newspaper. I always try to bring a book with me to the beauty salon, as I find the pile of fashion and home care magazines a bizarre foreign territory. Once I forgot to bring my book to a hair appointment and spent quite a while sifting through a mountain of Vogue and Good Housekeeping in order to find one Architectural Digest at the bottom of the heap.
Although I do not often read these types of magazines, once in my life they were the only periodicals I read. In late March of 2009, I began reading these light and airy magazines as I sat with my mother-in-law at my husband Fred's side during his hospitalization. Most of the magazines belonged to my mother-in-law Joan. She brought piles of them with her to the hospital. As we whiled the hours away waiting for a surgery that never came, we read. We read everything she brought. When we finished those magazines Joan would stretch her legs and go to the cafeteria to get a coffee. Then she would stop by the gift shop and come back with another handful of magazines.
I find I hate most magazines published in March 2009. Be it Family Circle, O, People, or any other title, I have read it cover to cover, and I loath it. Joan and I would sit there waiting--for the doctors, for the tests, for some answers to our questions with nothing to stop our frantic swirling thoughts. As we sat within a maelstrom of worry we read these magazines. Each night I would research kidney cancer online, and each day I would read about the life and times of Sally Field or find out about the best method to clean a shower head.
After weeks of such reading, Fred died in June. I found out I could no longer read a book. I could not fall into the warm embrace that literature had once provided me. My mind was a gnat always flitting away. I would prowl Joan's living room at 2:00 in the morning in the weeks after the funeral. Desperately, I looked for something to read. Under a pile of Country Living from 1993 was an old Family Circle with an article by an author named Ann Hood about onion letters and orchid letters. My mind stilled as I began to read.
Ann Hood wrote about her past experience as an airline attendant. She wrote about a concept called the onion letter and the orchid letter. Apparently, if a customer wrote a letter to the airline extolling her virtues and excellent service that letter would go in her employee file as an "orchid letter". If her service was abysmal, she might get a letter pointing out her many faults and that too would enter her permanent file as an "onion letter". As Ann's life continued and she became an author, she utilized this concept she learned as an airline attendant.
She took the horrible frustration she felt when being met with bad service and channeled that into onion letters. Her goal was not to get cash back or a reward. She was doing this to alert the business of the bad service she had received in a hope of creating a better experience for those who came after her. She was also doing this to regain dignity and respect that was denied her by the uncaring service person or institution. After she wrote the onion letters she also began writing orchid letters to spread the happiness she felt upon being treated well. In her article she encouraged everyone to write onion and orchid letters in order to facilitate better communication in every aspect of our lives.
It was a great article. It struck such a chord with me. Having worked in retail environments for 16 years, I have received quite a few orchid letters and even the occasional onion. I know how much these letters can affect you as a service provider. As I read the article I thought about the onion letter I had sent just a few weeks before.
While Fred was in hospice I wrote a very long letter to the first hospital Fred had been admitted to. This was the hospital that told me I could see his record after I paid 73 cents a page and waited 21 days. I sat next to my sleeping husband as he approached his death and calmly wrote a letter that referenced his medical record and provided dates and names and recounted the many types of harms this institution had inflicted upon Fred. My sweet Fred was laying there dying, and I was writing an onion letter.
Why do this? I wasn't preparing to sue the hospital. My reasons for writing were far closer to the reasons Ms. Hood gave for writing an onion letter. I wanted to inform the management of this facility of the problems we had encountered. I had hoped we could encourage a necessary change within the organization. I hoped to channel the grief and frustration I was feeling into some kind of positive outcome. I also wished to regain our dignity, for in the process of becoming victims we had lost our personhood.
Fred was not the patient in room 6218. He was Fred Holliday II, PhD. I was not "Little Miss A-Type Personality". I was Regina Holliday. We had names; we were people. As I read Fred's record I grew angry that the story of his care never called him by name. He was only the patient, and I was only the wife. When did HIPAA compliance trump personhood? I thought of all the ways they took our names away. They dressed Fred in faded hospital gowns that made him look the same as every other patient they had ever treated. They made our friends and family wear visitors' passes every day. It was a name tag wherein the names of all those who loved Fred became simply a non-descript: "Visitor to RM 6218".
It reminded me of the book A Wrinkle in Time. In that children's tale a cloud of darkness is putting out the stars in the sky. I remember a particularly chilling scene on a planet controlled by darkness. On a street where all the houses look the same and all the children look the same the little children bounced their balls in unison to the beat of a sinister heart. Within this mockery of child’s play, one boy did not match the rhythm of the others. As he faltered in his attempts to bounce the ball, I could not help but think he would be terribly punished for being so out of step.
So in a way my onion letter was an attempt to stop the darkness from overtaking us all. The characters of our childhood can tell us so many things. They can warn of us of danger or give us advice. And these characters can tell us that onions have layers.
In the summer of 2001 our two year old son Freddie saw his first his first movie in the theater. This was a proud moment for Fred. He was pursuing his doctorate in film studies at the time. He was so happy to take Freddie to his first movie. It was the film Shrek. In a conversation the ogre Shrek had with his friend Donkey, Shrek explained that ogres are like onions: they have layers. In writing my onion letter, I found Shrek’s statement to be horribly true. I wrote page upon single-spaced page detailing the many failures and miscommunications.
Months later I got a response. The hospital, physician’s board, and insurer had decided that Fred had been treated within the “standard of care”. Well, if Fred’s care was standard, the standard must be changed. I began to peel back the onion of our experience and paint those images on walls and jackets. I would remove a layer and cry. I would speak, and I would share our horror, and so doing I slowly regained our personhood.
If you came to the "e-Patient Ephemera" art exhibit at Clinovations on July 29th you would have seen a painting entitled The Onion and The Orchid. The painting contains two Freds and two Reginas. Fred and Regina on the left, look sorrowful and worried. Upon close inspection, you will see Fred’s gown is made of paper bus transfers from the months of March, April, May, and June. Regina is wearing a visitor’s tag, and more tags have pooled at her feet, and in her right hand she holds an onion. They have lost their names and identities.
The Fred and Regina on the right seem proud and hopeful. Fred is now dressed in a suit made entirely of his business cards. Again and again his image says Frederick A. Holliday PhD., American University. Regina is wearing a speaker’s nametag from WHIT 2009. At her feet pool nametags from Health 2.0 goes to DC, Cerner and the Better Care Campaign. In her left hand she holds an orchid.
That orchid is a type of ephemera. It was sent as a thank you gift from by the staff of National Partnership of Women and Families after a speech I gave on June 24 at their annual luncheon. That flower meant a lot to me. It almost seemed like a gift from Fred and the Partnership. Throughout our marriage Fred was only allowed to give me flowers if I appeared on stage. Money was always so tight, and I only was onstage a couple of times during our marriage. It was a perfect compromise. So when this flower was delivered I cried. I cried for joy. The wonderful people at the National Partnership and the Better Care Campaign had listened to me tell our tale and had spread the word far and wide. They had listened as I peeled an onion and in return gave me an orchid. I cried because I knew Fred would be so happy and proud. The orchid will lose its blossoms soon. I have given it to my mother-in-law. She is much better with green and growing things. Perhaps she can save it, or perhaps it will die. But it will always be blooming in the picture, and Fred will always be standing beside me wearing his name.
That is the story of The Onion and The Orchid. In writing this I tried in vain to find a link to the original article by Ann Hood. I found two other blog posts about it. I also found out that Ann Hood lost her five year old daughter Grace after a strep infection raced through her body in a 36 hour period. She wrote a book called Comfort about the horrible grief that consumed her after that event.
In a magazine I read an article by an author who has suffered so much. I hope she knows how much her writing has helped all the rest of us who find her while we are grieving. And after all of these things I have seen and read I will never look at women’s magazines in the same light.
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