When you have a chronic condition, you end up seeing a lot of healthcare providers. A desperate search for suitable care led me down a circuitous path of arbitrary recommendations, fancy degrees, and experimental approaches.
Each of my providers had a very specific bag of tricks. A gastroenterologist offered me surgery or antibiotics. A nutritionist told me to eliminate gluten from my diet. An acupuncturist gave me herbs that made things worse. At a low-point, a self-proclaimed holistic allergist tested my muscle response to the ‘electromagnetic frequency that corresponds to chocolate.’
The problem is, with chronic conditions, there’s no quick fix. Since all the providers I saw gave up after their fix failed, I kept looking for more quick fixes. While these failures can still be helpful in differential diagnosis, I repeatedly got the impression my doctors didn’t believe I had a problem that concerned them — and sometimes didn’t believe I had a problem at all. I needed someone to sit me down and say, “This is going to be a multi-year process. There’s going to be a lot of trial and error, and I’m willing to expand my bag of tricks and get creative with you. It’s not going to be easy, but I’m with you for the long haul.”
A chronic condition — whether digestive like mine, joint pain like my co-founder’s, or something else — affects every moment of your day. It affects your mood, your decisions, your relationships. A friend with a similar condition told me he could no longer spend time with people who hadn’t experienced a traumatic life experience; they wouldn’t be able to empathize with him. If we require this of our friends and family, it’s only natural we would want it from those who treat us.
What this comes down to is a concept called clinical empathy, defined as “a cognitive attribute that involves an ability to understand the patient’s inner experiences and perspective and a capability to communicate this understanding.”
Clinical empathy has been linked to improved outcomes for patients with diabetes, colds, and depression. Yet many patients don’t experience it in their healthcare encounters: one study found that doctors interrupt patients within an average of 18 seconds.
To understand why, we must also empathize with doctors. In the 1950s and 60s, medical journals began spreading a concept called ‘neutral empathy,’ based on detached reasoning. They argued that truly experiencing the patient’s pain could bias decisions. In a 1963 article, “Training for Detached Concern,” Renée Fox and Harold Leif described how “physicians believe that the same detachment that enables medical students to dissect a cadaver without disgust allows them to listen empathically without becoming emotionally involved.” This perspective has shaped the way physicians are trained and incentivized.
A 2011 study showed that empathy decreased during both medical school and residency, attributed to curriculum, experiences in clinical practice, and overall stress.
Detachment also develops during this period as a protective mechanism. As a friend in residency expressed to me, “If every time a patient of mine dies it has the same effect on me that my grandmother dying would, I would be unable to do my job for any patients.” Navigating that middle ground can be scary and complicated, but there’s an art to it he believes can be taught.
In medical school today, students undergo mock patient encounters, which Leslie Jamison, a ‘medical actor,’ recounted in detail in The Believer. Jamison was responsible for playing the role of patient and evaluating students. During her encounters, she found students struggled to move beyond scripts and a transactional level of patient understanding toward true empathy:
In this sense, empathy isn’t measured just by checklist item 31 — “Voiced empathy for my situation/problem” — but by every item that gauges how thoroughly my experience has been imagined. Empathy isn’t just remembering to say “That must really be hard,” it’s figuring out how to bring difficulty into the light so it can be seen at all. Empathy isn’t just listening, it’s asking the questions whose answers need to be listened to. Empathy requires inquiry as much as imagination. Empathy requires knowing you know nothing. Empathy means acknowledging a horizon of context that extends perpetually beyond what you can see: an old woman’s gonorrhea is connected to her guilt is connected to her marriage is connected to her children is connected to the days when she was a child. All this is connected to her domestically stifled mother, in turn, and to her parents’ unbroken marriage; maybe everything traces its roots to her very first period, how it shamed and thrilled her.
In Jamison’s evaluations, there was one checkbox (‘item 31’) for indicating whether a student voiced empathy, as if empathy can only be communicated through words. She expressed a complex web of emotional relationships stemming from her character’s gonorrhea that, if understood by a clinician, could equip that person with information to perform root cause analysis and motivate the patient to treat her condition in a healthy way and prevent it from reoccurring.
This is a process designers are particularly skilled at through use of design thinking. Design thinkers don’t begin solving until they understand the root human-centered problem, using investigative tools designed to build empathy, and then they consider a wide range of possible solutions across disciplines. Rebecca Onie used this kind of process when she founded Health Leads. While working at Boston Medical Center, she realized many low-income patients kept getting sick because of problems related to nutrition and mental health. The clinicians knew this all too well, but the system in which they operated constrained what they could prescribe. Onie now offers services not traditionally considered medical or covered by health insurance, like food, housing, and heat. This complex set of practices required to build empathy and treat human problems is a far cry from ‘bedside manner,’ the basis of ratings systems like ZocDoc’s.
Professional stresses and checkbox evaluations continue through much of a doctor’s career. Pressure from health systems and payers require more of physicians with less time for each patient. The result is standardized scripts to review with patients and alerts and checkboxes to click through in their Electronic Health Records, diverting their attention from the patient across the room.
A Systemic Approach
Medicare evaluates doctors primarily through two programs. The first, called the Physician Quality Reporting System (PQRS), is mandatory; those who don’t report face penalties of up to six percent of their annual reimbursement. Starting this year, reported data has also been disclosed publicly. PQRS includes measures like whether the provider performed a tobacco screening or whether her population of patients with diabetes kept hemoglobin A1c levels in check. It’s easy to imagine the data collection burden these measures put on doctors at the point of care. And if we don’t track measures that are important to patients, such programs will hinder clinicians’ ability to respond directly to patients’ needs.
The second program, called the Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey, is voluntary for providers in groups of less than 100. For those who report, it also impacts reimbursement. It includes patient-reported measures, such as “Provider explained things in a way that was easy to understand” or “Provider showed respect for what patient had to say.”
This is a step in the right direction for measuring outcomes that matter to patients. But such surveys still rest on the assumption that the a single provider knows everything required to treat me, all work and interaction can be completed within a traditional visit, and that all feedback can be captured in checkbox format.
What’s required is a fundamental shift in how we both train and organize our health professionals to meet patients where they are.
Through my work on the Watson clinical decision support system, I saw technology automate basic information retrieval for doctors and the need for doctors to refresh their medical knowledge based on a constant influx of new findings. My collaborator, Dr. Herb Chase at Columbia Medical School, told Technology Report, “I’ve spent my whole life in medicine grappling with how hard it is to find information that is known.” In response to these trends, medical training should focus less on memorization and more on relating to patients to get to the root of their problem — and only then solving that problem with appropriate use of analytical tools.
Columbia Medical School now offers a master’s degree in Narrative Medicine, an approach that aids with empathy and root cause analysis. Professional programs like Empathetics are succeeding in adult education. A 2012 study of 100 residents found that those who took the Empathetics course were “significantly better at understanding [patients’] concerns and making them feel at ease” than those who didn’t. For those without the opportunity for formal training, the Business Innovation Factory’s Narrative Playbook offers a field guide for providers, patients, and caregivers to use storytelling to communicate more effectively.
Training doctors will only get us so far. We need to rethink how we organize both our clinicians and our administrators — and automate routine tasks to help them focus on what matters. Today’s system is hyper-specialized and disjointed. In my case, I had no one coaching me through my long-term goals, no one making sense of each specialist’s contrasting input, and no continuity among providers. Two emerging models of care show promise in shifting the focus toward the patient.
The first is a new model of primary care called Patient-Centered Medical Homes (PCMH), with incentives coming from payers to practices that receive accreditation. They’re defined by five characteristics: comprehensive care, patient-centered, coordinated care, accessible services, and quality & safety. The result is a primary care practice suited to a patient like me: a team of providers would look after me in a coordinated way and communicate with me between visits.
The second is a new model of reimbursement for episodic (or acute) care called bundled payments. Providers receive a flat fee per patient for a particular type of ‘episode,’ such as knee injury, incentivizing them to optimize for care related to those episodes. In The New Yorker, Atul Gawande recently recounted a particular case in which Walmart sent one of its employees, Michael Taylor, to a designated ‘spine center of excellence,’ Virginia Mason. Walmart covered all costs of travel for him and his wife, and he still received higher quality care at lower cost because the center was designed to treat Taylor’s specific condition.
I have yet to find the care I need, but I’m still pushing forward. Even if I’m not cured, one day I hope to check the box for “I felt understood. My doctor went out of her way to perform research and experiment with me. The system didn’t let me fail.”
Thanks to Rachel Katz, Alex Vogel, and everyone who has shared their opinions with me. This is the first of a series on Designing for Clinical Empathy, and I would love to explore more deeply with you the roles of education, organizations, evaluation, and technology in designing for clinical empathy.