Something amazing is happening in Greater Boston! Two people meeting on stage, discussing their stories on camera….
Wait…that doesn’t sound incredible, does it? What if the two people are a doctor and patient sharing their experiences with each other? What if they are a doctor and patient discussing their LIVES?
Two Perspectives on Medicine
“I listened to the mantra that we need to see more patients, more efficiently, and work longer hours as if I were listening to the drumbeat at a funeral march….health care companies and patients need to recognize that those of us who chose to study medicine are not merely well trained machines but humans who strive to deliver care with compassion, empathy, and expertise.” ~Anonymous
“Lying on a gurney…in real fear of my life…at that moment I wasn’t worried about …a cost benefit analysis…a patient in the American healthcare system has very little leverage, has very little knowledge, has very little power…”~Steven Brill
These comments on healthcare–one from an anonymous pediatrician who has “quit medicine;” the other, a healthcare journalist turned open-heart surgery patient who writes about healthcare costs–represents the current atmosphere of medicine in the US .
Why a storytelling project?
Even looking back, to folk tales, myths and legends, we find truths that resonate. Our forefathers observed animals and created sense-making stories. They watched the raven, one of the smartest of birds, live with humans, scavenge, follow, and craftily solve problems.
In folk tales, the raven is a messenger. The Norse god, Odin had a raven on each shoulder that went out daily into the world to bring him news. The raven is also associated with war and death since it was seen on the battlefield making a meal of those who had died. In several cultures, the raven is also associated with healing.
In most of these stories the raven starts out as a white bird. Only after it must share bad news is the raven punished and turned black.
Being the Messenger
Hearing your name (or that of a loved one) attached to words like cancer or diabetes or other chronic diseases is
Choose any synonym and it won’t encompass the profundity of the experience. What is it like to be the person who must make that attachment? “Julie, you have cancer.”
Imagine, if you will, a job in which you must be the bearer of bad news. In many ways, that is one of the essential tasks of the physician.
Bridging the Divide
The new project is trying to use storytelling to bring the experience of the messenger and the receiver together. It is called The Health Story Collaborative. Its founder is a physician and also a patient.
Annie completed her residency, remarried, had children and kept her MS a secret until 2006 when she had another bout of symptoms. Even when she was put on medication, she didn’t want people, outside her family, to know. She didn’t want to be defined by MS. Yet she yearned to hear other patient stories. She wanted to learn how others coped; how they accepted. So in 2010, she started recording patient stories. And she started working with Jonathan Adler, a psychologist whose research involves storytelling and its impact on mental health.
In psychology, “agency” is the ability to act in the world, to have influence over your own life, and to control your thoughts and behavior. Adler’s research on narrative and mental health supports the idea that storytelling increases agency. As Annie has learned, “We can only control the physical aspects of health to a certain degree, but we are always in charge of our mindset.”
Patient stories have predominated the work of The Health Story Collaborative. But recently the Collaborative has started a bold venture: bringing the physician and patient together to share their stories.
In a world where physicians are pushed to have patients in and out of the door in 15 minute increments, sharing seems limited to a list of symptoms and a prescription pad. Sadly, patients may know little to nothing about the physicians who care for them. With professional distance a high priority, patients may know little to nothing about their physician’s families and day-to-day struggles. Certainly, they can only guess the numbing effect that can occur after being the bearer of bad news, day in and day out.
Conversely, physicians may know little about their patients. They don’t know that the “non-compliance” they see in a patient may have more to do with where that patient lives than on that patient’s motivation. Perhaps they don’t know the financial and emotional impact the bad news has on their patient’s lives.
Healing Medicine With Stories
During the first patient-physician Health Story Collaborative session, between David (physician) and Tracy (patient), David shared his frustration and bewilderment that he could not get Tracy to stay motivated to control her Type 2 Diabetes. After hearing from Tracy, David said, “Now I realize how much of her life it takes to focus on her diabetes. She’s a very, very busy person….”
As Annie writes, “… here at Health Story Collaborative we’ve designed a program in which a patient and a doctor come together to share and listen to one another’s personal narratives… our goal is to create a space where both patient and provider can be human.”
Understanding each other’s humanity is the beginning. As David related to Tracy, “We can do better if we trust each other more and if we understand each other more…Tracy is not perfect… and neither am I and I think we both realize that and that is the first step in realizing how we can work together.”
Now that is amazing…something to get excited about!