When I was in high school, I worked at a children’s program during the summer. In the morning I would teach art and in the afternoon we would have free-play and then a field trip. Kids could play outside or sit in the air conditioning and watch a video… or they could listen to me tell a story. I found it amazing at the time, but they invariably chose that they would like to hear a story. Perhaps you are picturing a few kindergarteners nestled up to my chair listening to a classic fairy-tale. The real situation consisted of me in a school cafeteria telling stories to 100 children from five to twelve years of age. Their sweaty bodies leaned this way and that as they sat on the cool mismatched linoleum and strained to hear each part of the tale. No, these were not just fairy stories. I told of history and comedy and sometimes even… horror. They sat in rapt attention following every part of the tale and as the story ended they begged to hear another. I was so happy that in age of television children would still sit and prefer to hear a story. Looking back, I realize that re-watching The Muppet Movie couldn’t hold a candle to a storyteller.
Speaking at Cerner
Originally uploaded by Regina Holliday
Speaking at Cerner
Originally uploaded by Regina Holliday
Stories are powerful things. Stories stick inside your mind and make you think. My husband Fred spoke often about the importance of story. (The last book I bought him was The Origin of Stories: Evolution, Cognition and Fiction by Brian Boyd. He was excited to try to read it, but only finished the introduction. He told me theory and Dilaudid do not mix well.) He was so excited by the theory of narration.
I love to tell people that my husband wrote his dissertation on Buffy the Vampire Slayer. It always gets a great laugh. But few people know the title of his book. It was called The Long View: Three Levels of Narration in Buffy the Vampire Slayer. His thesis asserted that Buffy was filled with long stories. Each episode had a narrative arc. The season was a longer story, and the seven year series contained an even longer narrative arc. Buffy the Vampire Slayer might have seemed like a monster of the week serial at first glance, but as the show progressed, a clear mythos developed and a plot arched throughout. On the surface you may believe this show was about vampires and demons, but within a fantastical structure it was really a treatise on life and death and endurance. This show depicted a reality where a computer nerd or a cheerleader could save the world. Pretty empowering stuff, don’t you think?
Fred spent a lot of time working on his dissertation. He was very proud of it. Sadly, for many years I did not read it. There were plenty of reasons not to read it. It was really thick and complicated. I was so busy with work and the kids. I had already watched the entire series with Fred and talked about it endlessly, why read a technical document on the subject? And, in some ways, I resented it. I resented the years I had worked long hours at so many jobs while he finished his education. I resented the money spent and the life goals delayed that were part of the realization of this document. No, I didn’t read his dissertation, until he was dying. I remember that night well. Fred was still in rehab but he was failing fast and had agreed to enter hospice. I spent the night with him because I was so worried. I sat beside him and read his book. It took about five hours. At 3:00 am I finished. I looked over at him. His eyelids fluttered. He looked at me. “Honey,” I whispered softly. “I just finished reading your dissertation. It is really good.” He stared at me with a sense of resignation and disappointment and said, “That’s nice.” He then closed his eyes and resumed his slumber. I sat there numbly with silent tears streaming down my cheeks. I had waited too long. I hadn’t read it when it mattered. I hadn’t read it when it was symbol of accomplishment, a beacon of hope, the promise of a better future after years of hard work. I hadn’t read it when it was a promise of great things to come. The book lay limply in my lap. It was a testament to what could have been.
I have been thinking a lot about stories of late.
I just returned from Kansas City. I was asked to speak before a Meaningful Use Summit hosted by Cerner. They had heard an audio copy of my testimony from the Meaningful Use Workgroup in April and asked me if I would be willing to present a patient viewpoint at their next summit. The folks at Cerner were gracious and kind and spoke with genuine sincerity about the need to hear the patient “voice.” I spoke for about 45 minutes telling our story. I told a tale of sorrow and miscommunication. I expounded on the dangers of a medical record that is not accessible to the patient and caregiver. I explained how lack of access can directly impact clinical care and emotional well-being. At the close of my speech, the audience asked what they could do to help effect change. I suggested they invite a patient advocate speaker to every medical conference. A patient speaker makes this personal. They center the room and shine above the bar charts and graphs, reminding us why we decided to work in medicine in the first place. I also said they should consider patient members on their boards. The patient needs their voice in the room and a seat at the table. Yes, we want access to the medical record so we can effect change in our own care, but we also want to help others.
After my speech, I returned to my hotel room and began checking my email. Several of my friends who are interested in E-patients, Health 2.0 and Meaningful Use, were discussing the power of a story in a thread of emails. Apparently, one my friends had been asked to moderate a panel about the role of the physician in social media. My friend suggested that they add a patient to the panel. The panel members disagreed saying, “The patient would just tell their story and have nothing else to add.”
So, that is what some doctors think of us. Perhaps they believe our revelations are an entertaining break with no functional application. Or are we the metaphorical equivalent of a roadside fatality? Each driver craning his neck in order to view the carnage as they pass by. Or do they resent us as angry accusers spouting recriminations with no helpful suggestions to add? Do we just lay our grief on their table and walk away?
Perhaps have they forgotten the meaning of story. Remember sitting on your mother’s knee. Remember the tales of childhood. The story was simple, repetitive and had a point. I remember each time a story was told, this question was asked: “What is the moral of the story?” Before we could even read a book, we were asked about meaning of stories.
I now sit in meetings for hours and watch power point lectures about electronic medical records. I listen to people dissect HIPPA regulations and incentive time tables. I hear arguments comparing ICD-9 code to ICD-10. And sadly, I hear many people tell me that patients should never see the entire medical record. I think they have no concept of the word meaning in “Meaningful Use.” For too long the medical record has been considered a billing document or a legal document: property of the physician or institution, instead of what it is, the story of the patient. “Meaningful Use” is not just a government buzz word or an unrealistic timetable of obligation, it is that childhood question: “What is the moral of this story?”
I won’t deny that the medical record is dense and technical. I know some patients will never want to read it and may resent the document. It took three hours to read Fred’s medical record and I read it four weeks too late. Fred’s care would have been substantially better, if I had just been able to read the record. There was no other person reading that document that was more engaged in trying to understand the story of Fred. I paint and speak in the hope that we can have a system that allows medical records access to patients while the data is still actionable and the document can still help people lead healthier life.
I challenge you the next time you hear someone speak disparagingly of patient stories or Meaningful Use, to think of this post and the moral of the story. Think of me telling our story in front of a crowd at a medical conference or at bedtime with my two sons. My sons like fairy tales, but they much prefer I tell them the tale of a day of their lives when Daddy was still alive and we were still that family. And sometimes my eldest tells me a story as well. He tells me that after his Daddy died, Mommy took up brushes and tried to change the world. And he tells me the moral of the story: when you see something is wrong you do something about it.
Regina, I just came across your blog through a Google Alert on "patient advocate." Your "voice" and "art" and "work" are going to have a huge and meaningful impact on health care reform -- for the better. Being in the field myself, I know it is an uphill climb. As you have expressed, the exchange and consumption of accurate and thorough information among medical team members, which includes the patient and family, needs immense improvement. The loss of your husband will have a purpose because of all you are doing.ReplyDelete
Sheryl Kurland/Patient Advocates Of Orlando
Thanks for sharing your story - here, at meetings, conferences and on SlideShareReplyDelete
I was listening to an interview on KUOW (the NPR affiliate in Seattle) with Daniel Simons and Chris Chabris, authors of The Invisible Gorilla: How Our Intuitions Deceive Us:
The authors highlight the illusions of memory, causation and certainty that contribute to inattentional blindness, and how our brains are wired for anecdotes or stories rather than statistics.
As I understand it, one of the biggest challenges in military boot camp is to train soldiers to overcome their natural disinclination to killing other people, and one of the ways they accomplish this is to promote a perception of potential enemies as non-human.
I don't want to make too much of the analogy - the goals of killing and healing are clearly in opposition - but I do believe that the extensive training doctors receive can lead to a dehumanization of the people they come to view as patients ... and suspect that they also come to trust aggregate statistics over individual stories.
I imagine everyone would agree that dehumanization is bad. The challenge is in finding the balance between the breadth of statistics and the depth of stories. I believe your advocacy of engagement, empowerment, equipment and expertise on the part of patients will help the system arrive at a better balance.