Saturday, February 2, 2013

Stories, Science, Disease, and Illness

The science of medicine has made unbelievable strides in understanding disease and even controlling it.  However there is a difference between disease and illness.  Illness is the personal experience of disease and it must be understood through stories as well as science.  It takes stories to help people through their illness and to apply knowledge built through data and inquiry into effective treatment and effective decision making.  Creating the right structure to study the effects of stories can only help us in understanding the very personal stories of each and every person who has to deal with illness.

So I was very excited when I read an article entitled, “All Stories Are Not Alike” published in the journal Medical Decision Making.   The article acknowledges the strength of people’s stories and creates a framework for understanding how stories help people make medical decisions.  Stories are real ways to communicate medical facts and make them understandable for people in a personal, real-world way.  Stories can be used to point out scientific data that may be helpful to that person’s individual circumstance.  And just as science has a structure and a language, so do stories.  The article sited makes a wonderful effort to better define that structure and language. 

When each of us thinks about the story of our own life, or our own illness, it is rarely if ever about only one factor and almost never about the disease!  Nobel Prize winning author Elie Wiesel recently wrote a book entitled, “Open Heart” which tells the story of his emergency heart surgery at age 82.  The book is his story, so it is only peripherally about the proper way to treat heart disease.  Real life gets in the way of his treatment as it does for all of us.  When his cardiologist calls him breathless and tells him to get to the Emergency Department of Lenox Hill Hospital immediately and that a team of doctors is waiting there for him, the brilliant author writes that he does not.  “And so I nevertheless steal two hours to go to my office.  I have things to attend to.  Appointments to cancel.  Letters to sign.  People to see – among others a delegation of Iranian dissidents.”  For Wiesel at that moment, his own commitments are top of mind rather than his urgent need for medical care.  That is no different than the mother who, even when extremely ill will worry first about picking up her children at school.

In his book Wiesel talks about the love of his family and own moral struggles instead of the best practice guideline for coronary artery disease.  He writes about the visit of his five year old grandson when he is still in the hospital, with his grandson saying, “Grandpa, you know that I love you, and I see you are in pain.  Tell me: If I loved you more would you be in less pain?”  Wiesel then writes, “I am convinced God at that moment is smiling as He contemplates His creation.”  That is more important to Wiesel’s story than the technical aspects of his disease. 

His story is not all that different than other’s stories (although his eloquence in voicing it is unique) and our ability to listen to people’s own stories, relate them to the care they need, and address them using data, medical studies, and “facts” are what makes successful treatment of illness and not only disease. 

The key to really helping people when they are faced with illness is the ability to understand all of the elements of their illness, even if it includes a feeling of commitment to meet with a delegation of Iranian dissidents.  It involves the skills of listening to their story and then adding into the framework of their story the medical facts and guidelines when and how they apply.  It is in letting the story unfold in a way that reflects and respects the values of that person.  Only then are scientific medical facts useful and helpful.  Only within the context of the story can medical science be used to lift the human body and spirit.