An Alert, Well-Hydrated Artist in No Acute Distress
The story of two artists with incurable neurological disease sharing fear, frustration and friendship as they push to complete the most rewarding work of their careers
Hadley’s eighteen-minute appointment with Dr. Truitt in Houston had taken her twelve hours to get to and about the same amount of time to get home from. When she was back in Missoula, she told me the trip unexpectedly had triggered painful memories of her time at the Mayo Clinic the year before. I imagined that the combination of her diagnosis sinking in, the hours and hours of traveling alone and to unknown places, and the impersonal medical and hotel environments had made her feel even more isolated. Probably most significant was the quality of her appointment with Dr. Truitt, which had seemed more like an auto maintenance check than the beginning of an important collaboration. I asked her if she would schedule a follow-up with Dr. Truitt in six months and she said no; it wasn’t worth the financial and energy expenditure, or the emotional one. She hoped her Missoula neurologist, Dr. Reid, could manage her care by checking in with Dr.Truitt as necessary.
By now of course, Hadley was of no stranger to feeling alienated by doctors. Dr. Truitt hadn’t insulted or actively dismissed her, as some others had. But there was nothing about their meeting that motivated her to seek in-person care from him. Their lack of connection can, in part, be blamed on a built-in imbalance in the doctor-patient relationship: Hadley has one body and a couple of doctors to guide her through her illness; a specialist like Dr. Truitt sees hundreds or thousands of patients a year. Dr. Truitt was pressed for time that morning, with patients waiting. But this is just an excuse. With a bit more eye contact or a couple of key questions, he might have been able to communicate an understanding of Hadley as a complex individual saddled with a deadly disease, rather than an engine to be monitored as it sputtered and failed. Empathy doesn’t take more time to convey than indifference.
But first, a doctor has to feel it. During the last two decades, researchers have sought to understand the causes and remedies for the widely acknowledged dearth of empathy — what has informally been filed under the heading “bedside manners” — in the medical profession. Until fairly recently, medical students were trained to respond with “detached concern,” an approach that would guard them from becoming emotionally affected by a patient’s struggle. The rationale for detached concern was that resonating too deeply with a patient would cloud the doctor’s ability to diagnose and treat him with clinical objectivity. Recent research has debunked the benefits of detached concern, demonstrating that emotional empathy not only improves doctor-patient relationships and patient outcomes, but also is correlated with higher job satisfaction among medical practitioners.
Once it was determined that emotional empathy is a win-win, scientists got to work on why it’s lacking and how to inject more of it into clinical settings. To that end, they discovered something interesting: Medical students show more empathy at the start of their training, suggesting that over time, their empathy gets ratcheted down. This trend is attributed to many aspects of the medical school experience, including mistreatment by supervisors, burnout and lack of emotional support, as well as the objectification of patients. A doctor’s hard-wiring and background, too, come into play in how able they are to empathize. Given these variables, the question educators have been left to tackle is: Can empathy be taught?
It turns out it can be. There is, of course, nothing that better teaches us how another person feels than sharing the same experience; this is why some patients are more emotionally reliant on their health support groups than their doctors, day-to-day. Since the coincidence of a doctor sharing her patient’s illness is not common, another way to step into the shoes of a patient is to experience a simulation of their symptoms. An inventive example of this is a project undertaken in 2014 by Analogue, a UK theatre company, in conjunction with a neuroscientist and other researchers. The group designed a wearable technology that creates symptoms of Parkinson’s disease; when connected to the device, a person can be subjected to the myriad wonders of PD: tremor, dizziness, and speech problems, to name a few. Liam Jarvis, Co-director of Analogue, explains the project’s goals: “Our principal interest is to work out how we can improve and facilitate communication and empathy by using simple technologies to immerse participants in the remote embodied experiences of others.”
In March, 2016, I participated in a similar empathy-building experiment implemented by Smart Patients, a UK online health community. Smart Patients matched professionals who were interested in understanding the Parkinson’s experience with patients for the study, which they called #Parkinsons1day. I was partnered with Eli Pollard, Executive Director of the World Parkinson Coalition; for one day, I would be her “teacher” and she would be my “learner.” Smart Patients furnished Eli with an “empathy kit” containing a pair of oversized dishwashing gloves — guaranteed to make any task requiring dexterity miserable — and ankle weights to simulate the bradykinesia that makes me feel as if I’m trudging through deep snow. After a phone conversation in which I shared my habits, schedule and symptoms, Eli rose in the morning, donned her weights and gloves and headed to work in Manhattan. She and I communicated throughout the day by text. I reported to her all of my Parkinson’s related sensations (“Dystonia!” Accompanied by a photo of my toes curled up), frustrations (“Meds wearing off! Scattered, can’t figure out how to wrap up this paragraph and my mouse is moving too slow.”), and activities that included my daily three-mile walk and a trip to Walgreens to pick up five refills. In turn, Eli shared with me the ehallenges of being encumbered with her “Parkinson’s”:
Okay, so I woke up this morning, and waited in bed for a bit after taking my vitamin. Had my iPad, read some news waiting for “the meds” to kick in. I took my shower last night, using my weaker hand fully and trying not to use my dominant hand much. It was slow, and annoying. Curling my hair this morning was, well, slow. I didn’t burn myself, but did use my left hand and it was all very slow and deliberate.
Later in the day she wrote:
I am wearing the ankle weights and every time I stand up I realize that I’ve forgotten I have them on and it’s like walking through quick sand. It hits me quickly. I remember that happening sometimes when I was pregnant, I’d actually forget until I tried to stand up or roll over.
Suiting up for a Freaky Friday in order to understand a patients’ plight is interesting and educational but impractical for training more than a narrow swathe of the medical profession. (Note also that Eli, like many of the “learners” participating in #Parkinsons1day, has devoted her career to the Parkinson’s cause but is not a doctor. Her desire to participate in #Parkinsons1day is, in itself, an indication that she is already a very empathetic person.)
The complicated challenge of producing doctors who are more empathetic has come into focus for medical schools during the last few decades. Understanding that empathy must be part of the equation in the selection of future doctors, schools have begun to look for applicants with a wide range of interests and experience, rather than only those who’ve maintained a stricter diet of pre-med science. The expectation is that broader life exposure encourages greater emotional growth. In addition, while the selection of candidates for medical school historically has relied on cognitive test scores and grades, applicants now might also be required to take tests that measure their emotional intelligence. Once students are admitted to a program, they will take courses that aim to teach them how to be good listeners and caring practitioners. Sometimes actor simulated patients — actors who are trained to simulate a patient with a particular set of symptoms — are used to rate a medical student’s skills at taking the patient’s history, giving a physical exam, and communicating. At the end of the simulation, the actor reports on the doctor-in-training’s ability to make them feel listened to, respected and understood.
Further training in empathy is offered to medical residents and fellows as well as established doctors who are interested in a refresher course on bedside manners. In 2011, Dr. Helen Riess founded the Empathy and Relational Science Program in the department of psychiatry at Massachusetts General Hospital, with the mission of improving interpersonal relationships in healthcare. The program is the first of its kind offered by a hospital in the US and has been so popular that in 2013, Riess started Empathetics, an online course that trains health care professionals globally.
As a writer, I found the most intriguing research on empathy to be that of Dr. Rita Charon, founder of the Program in Narrative Medicine at Columbia University. Dr. Charon was a pioneer of the movement to steer medical students away from “detached concern” toward “engaged concern.” Her prescription? The inclusion of literature and narrative writing in Columbia’s medical program in order to strengthen reflection, awareness and compassion. In her 2001 paper, “Narrative Medicine: A Model for Empathy, Reflection, Profession and Trust”, Dr. Charon wrote:
Like narrative, medical practice requires the engagement of one person with another and realizes that authentic engagement is transformative for all participants… Unlike its complement, logicoscientific knowledge, through which a detached and replaceable observer generates or comprehends replicable and generalizable notices, narrative knowledge leads to local and particular understandings about one situation by one participant or observer. Logicoscientific knowledge attempts to illuminate the universally true by transcending the particular; narrative knowledge attempts to illuminate the universally true by revealing the particular…The narratively skilled reader …understands that the reading of a text arises from the ground between the writer and the reader…With narrative competence, multiple sources of local — and possibly contradicting — authority replace master authorities; instead of being monolithic and hierarchically given, meaning is apprehended collaboratively, by the reader and the writer, the observer and the observed, the physician and the patient.
In 2011, a decade after the publication of Dr. Charon’s paper on narrative medicine, a study published in the Annual Review of Psychology corroborated her premise, revealing that reading fiction made people perform better on tests that measured empathy, social perception and emotional intelligence. Scientists have known for some time that reading activates the brain in much the same way as real life experiences. Brain imaging has shown that when a person reads, both the language-processing area of the brain and the sensory regions are activated; for example, reading the word “lavender” stimulates the region of the brain responsive to smell. Similarly, words in a story describing action stimulate responses from the motor cortex area of the brain that are even differentiated according to which part of the body is activated. Further research by Canadian psychologists Raymond Mar and Keith Oatley published in 2006/2009 revealed a large overlap in the brain networks used to process stories and those used to navigate interactions with other people. MRIs showed that reading stories and socially engaging with another person elicit similar responses in the amygdala, the brain’s center for emotions. Fiction’s rich, imaginative details and language, when combined with complex characters who face serious challenges offer a transportive experience for a reader, as we are invited to fully enter characters’ thoughts and feelings in a way often not possible in real life. In short, reading stories significantly strengthens our brain’s capacity to understand each other. (Interestingly, another study published in 2013 found that not just any fiction will do when it comes to increasing empathy; while literary fiction engages important psychological processes, more commercial fiction genres such as thrillers and romance do not have the same impact.)
From the beginning of time, humans have sought out stories, proving we are insatiably curious about what makes us tick (or sick!), what causes us joy or suffering. The story, not the outcome, is why we enjoy literature. When we read a novel about a brilliant astrophysicist who turns to alcohol and winds up homeless, we don’t think yes, he is a drinker; inevitably, he has become a homeless drunk. Because we have walked with him on his journey, confronting the obstacles and conflicts in the narrative the author has created for him — that controversial, impassioned choice he made at twenty, the betrayal of trust at forty, the boat accident at fifty — we still hold him in our minds as the upstanding, albeit all too human, scientist he was when we met him. We might root for him or judge him along the way. He might enrage us or draw our sympathy. Whatever our feelings, in the end, if the story is well crafted, we understand him and learn something about ourselves, too. Because while we were reading, a part of us became him.
We’ve always known that emotionally empathizing with other people, whether real or fictional, is enlightening and satisfying in some primal way; now we also know it’s good for our health as well as our healthcare system. Pauline Chen, a physician who took the online Empathetics course wrote:
I decided to try out what I had learned…The next day at the hospital, I took extra care to sit down facing my patients and not a computer screen, to observe the changing expressions on their faces and to take note of the subtle gestures and voice modulations covered in the course. While I found it challenging at first to incorporate the additional information when my mind was already juggling possible diagnoses and treatment plans, eventually it became fun, a return to the kind of focused one-on-one interaction that drew me to medicine in the first place. Just before leaving, one of the patients pulled me aside. “Thanks, Doc,” he said. “I have never felt so listened to before.”
Dr. Chen’s story reminds us how dependent all of us are on each other for feeling rewarded and honored in life. When we are one-on-one, the simplest kind gestures or words exchanged between patient and doctor convey what we humans might need to know most in order to carry on: We matter.