Reclaiming the Heart and Soul of Medicine Through Storytelling

Andre Lijoi, M.D.

We connect with others by telling a story. We tell stories about what has happened to us, how we feel about it, and what it means. We tell especially important stories to our doctors.  Some we tell repeatedly, some we prefer to forget, and some still hold mysteries. After a routine office visit, I was handed a printout listing my diagnoses without any accompanying narrative. This made me anxious. Where was my story?

I heard that the best person to talk to about narrative in medicine would be Andre F. Lijoi, M.D.  Dr. Lijoi is the Associate Program Director of the York Hospital Family Medicine Residency Program. Since February he has been running a series of seminars titled: "The Future of Healthcare is the Story." I asked I could interview him for the paper. He quickly agreed and said he could give me about half an hour. Great. It was four-thirty Saturday afternoon when we sat at my kitchen table. I placed my iPhone down to record the conversation.

Dr. Lijoi’s program is open to students, residents, nurses, practicing physicians, clergy, and administrators.  The focus is on enhancing empathy and compassion by teaching how to be better at understanding the patient's life story.  This was once the essential task in caring for patients, for how else to know what was happening without sophisticated blood work, radiographs, CT scans, MRIs, and genetic testing, among other technical marvels?  But this skill has lost importance.  This “sacred sharing” should be preserved, and he would tell me why he started the program.

I glanced down at my phone to make sure it was recording and when I looked up I had missed the first part of his careful answer and missed his body language.  Sitting up straighter in my chair I tuned in.  His reason was that “Someone had to do something.”  

He was first drawn to the subject by experiences several decades ago at his first job following a residency at the University of Maryland.  This was in the Public Health Service in eastern Kentucky and he discovered something he was (somewhat) prepared for through his interest in literature.  

Cancer deaths 2014 by county

Appalachia in the early 1980s was then (and still is) one of the absolute poorest parts of the country.  Coal and tobacco were responsible for much chronic illness.  People had devastating illnesses caused by their life’s work, illnesses often picked up too late.  He was moved by their colorful but ultimately heartbreaking yet stoic tales of their hard lives.  He began to know and to love his patients through these stories.  This element had been missing plowing through (a top-notch) medical school and his (excellent) residency.  He realized that listening to the narrative, the full story, was good for the patient, and good the physician.  He saw this gap in the training of young doctors and he sought a fix.  

I looked down at my phone again; everything was fine.

While the electronic health record is excellent for standardizing the history, for seeing what was done, for viewing test results, and for insurance coding, the non-scripted elements that may reveal the critical part of the patient’s story are often absent.   Asking the “unscripted” questions and listening emphatically are necessary to understand the person with the illness, not just the illness.

How to foster this?   By studying the “humanities.”  His group discusses an excerpt from a book, or an article, or a poem that touches on aspects of the patient encounter relevant to narrative.  Dr. Lijoi gently guides things.  In the short time the program has been running he has witnessed his residents grow emotionally and professionally.  He has heard them say, for example,"I finally feel human again" or, “This experience took me to places I don't normally go with patients."  It made me sad to hear this.  This is where great joy comes from in helping patients, and until then the residents didn't know that they were missing that connection.  

(What’s with this storytelling business anyway?  We are hardwired to search for meaning.   Jonathan Gottschall (in “The Storytelling Animal”) says that we have a Sherlock Holmes in our brains.  This “homunculus” (the “little man”) reasons backward from what we observe now to show what series of events led to this moment.  The storytelling module in the left frontal lobe permits us to experience our lives in a meaningful way.  But don't be fooled.  The “interpreter” (of Dr. Michael Gazzaniga who studied split brains) is not perfect.  This little person sitting above and behind your left eye can be a fibber.  If she doesn't encounter enough information she will force a meaningful pattern anyway and you won’t even guess it.   So we may not tell the real story after all! What’s a parent to do? )

Don Quixote and  Sancho Panza on their quest

So, why does Dr. Lijoi feel strongly about fostering empathy and compassion by using the humanities? Because this effort makes one a finer physician (and a finer person).  He quotes William Osler, "It is a safe rule to have no teaching without a patient for a text, and the best teaching is taught by the patient himself."  Dr. Lijoi hopes that for his students the practice of medicine thereby becomes one of their “Dulcineas in life; (the) elegant sweetness for which one (in the manner of Don Quixote) fights relentlessly.

The cooly digitized medical record needs an analog component to provide warmth, and that component is the story.  Let’s be sure we take the time to get the story right as we work on it together.

(Thank you, Dr. Lijoi, for the three-hour interview.)

Anita Cherry

Published in the York Daily Record 10/29/17

Open Letter to Sen. John McCain ("Sen. McCain should think of the people as he fights his tumor")

Dear John McCain;

Once again, you feel the weight of a shocking diagnosis as you, once again, face your mortality and, once again, enter into patient-hood, and all that comes with it.  It is different for everyone, and every time.  Responding to a disease where the body has mistakenly turned against itself can make you feel betrayed by what you took for granted, namely, that your body would always work in your best interest.  You feel ambushed.  You are changed.  Who will you decide to be now?  

John McCain after surgery for glioblastoma

You are saddled with a new project; your old self is left behind, as “becoming” is once again your mission.  It has taken a long time to be yourself, and suddenly it is not enough, there’s more to be done.

While you might think the goal is to quietly slide back into the land of the well there are frightful decisions to be made.  Nothing happens without emotion, and the emotions here are especially potent. We are members of the only species that can imagine the future.  While imagining your response to, and hoped-for escape from, this disease many decisions have to be made.    These decisions require constant monitoring of information with clear perception.  This information is fluid and it needs an open mind that can adapt quickly when things change.   

Sometimes the choice of what to do next is difficult because what we know is simply not enough. But we have to decide and when we finally do we can move forward and we usually find that we cope better.

As we try to imagine the future it may be more helpful to actually see the future.  How?  By hearing from people who have already been there.  As you are thinking about treatment for your glioblastoma you may look to those who have made decisions already and use them as surrogates.  For example, this procedure worked, that did not, this medicine was easy to tolerate, that was not.   Such information is exceedingly useful to avoid going down the wrong path.  

But, and this is key, since you are a member of the U.S. Senate looking yet again to repeal the Affordable Care Act, at the same time as you are deciding for yourself you are also making decisions for all of us.  Fateful decisions about the shape of healthcare for all Americans.   

You see,  the question before you, that is, how to ensure that all have access to timely and affordable medical care, has been settled by nearly every other industrialized country on Earth, and the decision has been to provide universal coverage from cradle to grave.   

There was repeated resistance to the Social Security Act that was finally passed by Congress in 1935 and the bills for Medicare and Medicaid that were eventually signed into law in 1965.  If we could have polled the people of the future then about these programs we would have seen that they prevented much anxiety and human suffering.    

The diagnosis of an aggressive glioblastoma used to mean a certain and relatively quick death but there has been progress recently and there are now more than 80 experimental therapies being studied.   These are costly, but you are fortunate to have good insurance and connections and I know they will be offered to you and that you will be able to afford them. The term “clinical equipoise” means that there is uncertainty in the expert medical community about whether a treatment will be beneficial, as is unfortunately so with the newest targeted treatments for your brain tumor.  The term “equipoise” by itself means living in balance,  as one must learn to do when facing the uncertainty of serious illness.  

Perhaps I’m a dreamer, but maybe in this state of mindful balance you will see clearly into the future and be able to tell your colleagues what it was like when everybody had what they needed.

Sincerely,

Anita Cherry

Published in the "York Daily Record" 10/08/17

(John McCain's treatment was stopped and he died peacefully on 8/25/18.)