Big, brave medicine and powerful little acts : 'they go the extra step and that's huge'

Just after seven each morning I get an email from Daily Good. Each begins with a quote, shares a story and ends with a thought on our little acts. Recently it seems there has been an uptick in articles relating to health care challenges, here are the last three from the past week.

Twelve people at multiple medical centres in several different cities swap organs in a domino donor transplant never before attempted on this scale so that five people can receive compatible transplants and a chance at life.

From a 9 year old's school assignment titled 'If I Had Three Wishes' comes Tyler's Totes: "The Smiths didn't have any grand plans, just Tanner's guiding principle: to make kids with cancer laugh. Kathy contacted a sorority sister who worked in an Atlanta-area hospital for advice. She learned that little kids received plenty of support from outside groups, but preteens and teenagers were sort of the forgotten demographic. Buoyed by the idea of helping kids the same age as Tanner, the family decided to gather things to brighten hospital rooms, and toys that would fill an otherwise lonely day. The Smiths put everything in tote bags so kids could carry their wares from treatment to treatment."

And this morning the power of little acts of kindness, an ironworkers tribute that has kids and parents at Dana Farber smiling as they look over at the beams of the Yawkey Centre:
"It has become a beloved ritual at Dana-Farber's Cancer Institute, where they are building a new facility. Every day, children who come to the clinic write their names on sheets of paper and tape them to the windows of the walkway for ironworkers to see. And, every day, the ironworkers paint the names onto I-beams and hoist them into place as they add floors to the new 14-story Yawkey Center for Cancer Care. "It's fabulous," said 18-month-old Kristen Hoenshell's mother, Elizabeth, as she held her daughter and marveled at the rainbow of names. "It's just a simple little act that means so much....They don't have to do this, the guys. They could just do their job and do a good job at it and give us a building that we can get treatment at, but they go the extra step and that's huge."

Narrative Medicine - Dr Rita Charon at Columbia

Several nurse educators at Sickkids have been very helpful to me in better understanding how nurses relate to and support patients and parents. One item particularly struck me in a binder of training materials and that was a powerpoint presentation focused on the importance of really listening to the patient/family and helping them recount their story or narrative to medical staff. Similarly, parent involvement at the hospital is always grounded in the story of care experienced by the family. However, no matter how empathetic your core nurses are, some of the most lasting impressions of care will be created by the doctors that help families chart options, make decisions, and report on the outcomes of proceedures and next steps. So I found an interview with Dr Rita Charon, Director of the Narrative Medicine Program, College of Physicians and Surgeons of Columbia University, quite fascinating. Here she describes how she started writing down her patient stories and then sharing them with the patients and advocates creation of a "Parallel Chart" where staff stories can be recorded (and this would similarly be great for parents).
"With the encouragement of literary scholars Joanne Trautmann Banks and Kathryn Montgomery, I found myself writing about my patients in order to understand what they were telling me, because I learned that thoughts and sensations have to achieve the status of language before they can be useful to anybody. I then found myself showing my patients what I had written about them so as to make sure I had heard them correctly. "This is what I think you told me in the office last month. Did I get it straight?" And I found that patients were grateful for my having done this writing, not only as a sign that I tried to understand them but also for the chance to say, after reading my little summaries, "Well, we left something out."

At the same time, I coached my medical students and colleagues in writing reflectively about their practices to more accurately understand what their patients go through and also what they themselves endure in the care of the sick. I asked students and residents to keep what I called "Parallel Charts" on the patients in their care. We all know what gets written in the hospital chart or the office chart. However, there are critically important aspects of the care of patients that do not belong in the hospital chart, but that, I submit, have to be written somewhere. In the Parallel Chart, students and doctors write about their own anguish in caring for patients as well as their victory when things go well, their rage and mourning and dread, their fear of mistakes, their inability to know what to do, their sense of loss as patients sicken, no matter what they do. And when students or doctors read to one another what they have written in the Parallel Chart, they take heart that they are not alone in their sadness and their dread, their sense of isolation among sick and dying persons diminishes, and they feel accompanied by their colleagues on their journeys."
Dr Charon's vision of narrative medicine can support staff who feel they need to develop an emotional distance as a coping mechanism to work closely with patients who frequently die.
"Narrative medicine brings a useful set of skills, tools, and perspectives to all doctors. Not only does it propose an ideal of medical care -- attentive, attuned, reflective, altruistic, loyal, able to witness others’ suffering and honor their narratives -- that can inspire us all to better medicine, it also donates the methods by which to grow toward those ideals. Any doctor and any medical student can improve his or her capacity for empathy, reflection, and professionalism through serious narrative training. More and more medical schools and medical centers are adopting narrative methods of study in reading, writing, reflecting, and bearing witness to one another’s ordeals. It is hoped that the research to understand the outcomes of these practices will keep pace with their growth. Ultimately, narrative medicine may offer promise as a means to bridge the current divides between doctors and patients, between doctors and doctors, between doctors and themselves, illuminating the common journeys upon which we all are embarked."
You can read the whole interview here including a list of Dr Charon's published work and read about The Program in Narrative Medicine at Columbia University which has introduced a Masters in Science in 2009. The mission statement of the Department is as follows: "Narrative Medicine fortifies clinical practice with the narrative competence to recognize, absorb, metabolize, interpret, and be moved by the stories of illness. Through narrative training, the Program in Narrative Medicine helps doctors, nurses, social workers, and therapists to improve the effectiveness of care by developing the capacity for attention, reflection, representation, and affiliation with patients and colleagues. Our research and outreach missions are conceptualizing, evaluating, and spear-heading these ideas and practices nationally and internationally."

Thanks to Toronto story teller Dan Yashinsky for pointing me to Dr Rita Charon's exciting work.