photo by s_l/fotolia
Our great-grandparents, if granted a chance to return from the grave and check out the current state of medicine, would undoubtedly marvel at how far we’ve come in our ability to treat infections, fight cancer, and manage risk for common killers such as heart attacks. But they’d probably also be struck by what has been lost—the basic, kind, caring, human connection between doctor and patient.
In place of eye contact, there is typing. In place of listening, there is too often brusque interruption, prescription, and dismissal. In place of rest and recuperation, there’s a maze of calls to insurers amid mounting stress and frustration. It’s worth asking: Is the trade-off for continued innovation necessarily the loss of thorough, precise, accessible, and attentive care?
At its best, healthcare provides healing, hope, and relief from suffering. It literally cares. At its worst, it’s a fragmented, expensive system incentivized to identify and treat symptoms rather than address complex, underlying causes and behaviors, resulting in poor health outcomes, high costs, and frustration for both patients and providers.
The good news? It doesn’t have to be this way. Minnesota doctors, researchers, teachers, and entrepreneurs are taking up the challenge of putting humanity back into healthcare, with whole-person care that’s based on a firm foundation of listening and connection. Top-down “doctor’s orders” are replaced with accessible paths to health and wellbeing co-created by doctor and patient, together.
From good, old-fashioned storytelling, to an initiative that equips patients and citizens to demand better, to cutting-edge technology with which care teams can design personalized treatment plans for patients with chronic conditions, these Minnesotans are mining their creativity and passion for connection to build a healthcare system that truly cares.
Harnessing the Power of Narrative
Over the past century, Western medicine has focused relentlessly on fighting disease, with much success. But around the end of the 20th century, critics began to raise an alarm that the most-effective, most-humane treatment of a medical issue requires more context from the person experiencing it—each individual’s psychology, culture, circumstances, attitudes, and environment.
In 2000, Columbia University launched its Narrative Medicine program, aiming for a clinical practice that could receive and absorb patients’ stories, based on the understanding that “care of the sick unfolds in stories, and…the central event of healthcare is for a patient to give an account of self and a clinician to skillfully receive it.”
In 2014, Minnesota playwright and journalist Syl Jones landed a prestigious Bush Fellowship, a two-year grant he used to enroll in Columbia’s Narrative Medicine program. He put its lessons into practice at Hennepin County Medical Center, a Level 1 trauma center and teaching hospital in downtown Minneapolis. (HCMC has since rebranded as Hennepin Healthcare.) Jones is now the director of Narrative Health & Medicine at Hennepin Healthcare. He leads sessions in which care providers read, analyze, and discuss literature and poetry. The goal is to create closer ties with patients, and attuning to the emotional nuances in a patient’s presentation of their own story.
photo by bruce silcox
Narrative medicine is based on the notion that reading, reflecting, and writing about people and their situations can make physicians better caregivers. In one of Jones’ recent sessions, a physician confessed that he was burdened by all the stories he had gathered over the years from his patients who had passed away. He felt they were meaningful, but didn’t know what to do with them. Jones led the physician in an exercise in which he could process some of these stories through writing, memorializing the lives of these individuals while examining the stories to see how they could help understand and assist other patients.
“We care for human beings, not for the gallbladder in room 315,” he says, “and humans have physical, spiritual, emotional, and environmental needs.” At Hennepin Healthcare in particular, the patient population is often challenged with issues commonly viewed as social determinants of health, such as poverty, unstable housing, and unsafe neighborhoods. Many patients don’t have reliable transportation or other basic requirements for getting and staying healthy.
“In the past, those things have been ignored or marginalized, and we’ve seen ourselves as providers who, although we care about people, our job is to treat their medical needs,” explains Jones. “That’s changing. We’re trying to take a more holistic view. A patient’s story matters. If someone comes in with a bruised arm and wants to tell us the story of how it happened, we need to listen to understand all the causal elements and create a place of safety for them, rather than interrupting them. It helps us get a more complete view of their needs and concerns.”
In her book What Patients Say, What Doctors Hear, Danielle Ofri, M.D., says the training doctors receive in medical school leaves them less likely to really listen to patients, as they start looking to solve problems that they may not yet fully understand. Studies have shown that a patient only speaks for an average of 12-18 seconds to a physician before being interrupted, and patients completed their full opening statements when meeting with a physician only 23 percent of the time.
The University of Minnesota’s Community-University Health Care Center (CUHCC) is working to change that with its own Narrative Medicine program. EmmaLee Pallai, M.F.A., education manager for CUHCC, leads the program, with a focus on bringing together U of M medical students and residents with the center’s patient population, and encouraging both groups to share their stories and learn from each other. The groups meet at CUHCC for dinnertime sessions that combine a meal, reading and group discussion, and prompts asking all participants to share personal stories of illness or injury aloud.
“The program builds in a reflecting and listening practice before the [students] become providers,” says Pallai. “Listening is such a big part of communication. These students typically learn about talking to patients, not talking with them. But learning to listen to patients can help health outcomes.”
Both Pallai and Jones find a particular hunger for this kind of training among younger physicians. “They understand it’s about treating patients in a more holistic way,” says Jones, though he has encountered resistance from some doctors. “As one doctor said to me, ‘If I wanted to major in literature, I would have gone to grad school for that. But I didn’t, because I’m a scientist,’” remembers Jones. “The fallacy is that there’s this great divide between arts and science. I believe they’re connected through our complex and beautiful system of humanity.”
Colleen McDonald Diouf, CEO of CUHCC, agrees: “Narrative medicine lays the foundation for working collaboratively with the patient…There’s a lot of burnout in third-year med students, and this helps bring mindfulness into their healthcare practice.”
Ultimately, wellbeing becomes a story co-authored by doctor and patient. As Pallai says, “It’s about how we listen to each other’s ideas of health, and how we can work together to get there.”
Igniting a Patient Revolution
Dr. Victor Montori, author of Why We Revolt: A Patient Revolution For Careful and Kind Care
photo by bill bartlett
Just as narrative medicine encourages profound listening, so does Victor Montori, M.D., a researcher and diabetes specialist at Mayo Clinic, believe that reimagining our healthcare system will require different types of collaboration: among patients and doctors; community members with clinics and hospitals; and citizens and policy makers at the national level.
In 2016, Montori founded the Patient Revolution, the first nonprofit to spin off from the Mayo Clinic, with the goal of using stories and conversations to revolutionize the industrial healthcare system at three levels. The first is the level of the individual in a clinical setting: Productive conversations can help clinicians and families see patients’ situations in high-definition, so that the solution makes intellectual, emotional, and practical sense for these individuals. The second level is between citizens and the healthcare organizations that serve them: Hospitals and clinics must learn, and then meet, the needs of their unique communities. The third is at the national policy level, where dialogue can lead to healthcare policies adequate to all needs.
“We’re attempting to do the same thing at every level,” says Montori, “which is to move away from a system that offers treatments for ‘people like this,’ and instead treats this person. We’re trying to arrive at those solutions through dialogue, so the end result is careful and kind care for all.”
Montori states his case in his lyrical and powerfully argued book Why We Revolt: A Patient Revolution for Careful and Kind Care. “Money has taken over as the industry’s raison d’être,” Montori writes, “such that patient care should happen only where it makes business sense. Money has shifted from a resource for patient care to the product of healthcare.” In pursuing short-term financial gains, he argues, healthcare organizations often fail those with the most intractable health challenges, including chronic conditions that cause pain, suffering, and dysfunction but don’t have an easy pharmaceutical or surgical fix.
“When healthcare becomes fundamentally about economic outcomes, we’ll find it where the money is, not where the need is,” Montori says.
He acknowledges the challenge in countering the received wisdom that a profit-based, competition-fueled system that underserves everyone but the wealthiest is the price we must pay for a system that also drives innovation and achieves new life-saving and -extending medical breakthroughs. “A patient revolution must promote new thinking to uncover the ways in which social justice, innovation, and sustainability should not be traded off, but be a joint expectation of any system built on developing value for patients,” he writes.
This revolution must be led by citizens, in Montori’s view—healthy people with the energy and political will to lead the way and have important, difficult, paradigm-shifting conversations at every level, from the doctor’s office to politicians’ town hall meetings. For tools and resources you can use to start these conversations, visit the Patient Revolution’s website at thepatientrevolution.org.
Untangling the Knot of Behavioral Health Change
Dr. L. Read Sulik is Praestan Health’s founder CEO, and chief medical officer
photo by bill bartlett
Research has shown that behavior is the most significant determinant of health status, with individual behaviors such as smoking, alcohol abuse, and poor diet accounting for as much as 70 percent of healthcare costs. But helping people change deeply ingrained patterns of behavior has proven one of the biggest challenges facing the healthcare system today. L. Read Sulik, M.D., founder and CEO of Praestan Health, believes the key to lasting behavior change among patients—and improved health outcomes—may lie in changing the behaviors of the doctors who care for them.
Praestan Health aims to move from the traditional disease- and symptom-oriented focus of healthcare toward a framework focused on wellbeing, primarily by combining some of the tenets of narrative medicine (such as deep listening and acknowledging the complexities of patients’ lives) with the power of technology, artificial intelligence, and machine learning.
Using their own software, Praestan aims to turn every individual’s story into thousands of data points that can be analyzed to determine the most effective paths to health and wellbeing for that person—paths that will be mutually discussed and designed by patients and their healthcare teams.
Based in Minneapolis, Praestan Health’s services are available around the Twin Cities metro at Northwest Family Clinics and Pipe Trades Services Minnesota clinics. It also offers consulting to PrimeWest Health and Glencoe Regional Health Services. This past summer, the company landed $12 million in new funding, which is intended to fund future product development.
From lifestyle factors such as diet and exercise, to genetic predispositions, to what drugs and medications a person is on, Praestan’s software platform distills and analyzes a wide range of elements contributing to a person’s health state or condition to target the greatest opportunity for improvement.
Sulik uses the analogy of an Uber driver to illustrate Praestan’s potential. A user climbs into the driver’s car, and a GPS system maps the most efficient way for that driver to get the passenger to his or her destination. Likewise, when a healthcare provider works with a patient to identify a desired state of health and wellbeing (the destination), Praestan’s software can help them map a precise and personalized route to get there, drawing on its living library of thousands of evidence-based strategies for behavioral health change (ranging from cognitive-behavioral therapy to mind-body medicine to health coaching).
A patient starts by completing an online intake and an in-person assessment that inform their health profile and identify targeted areas for change. The Praestan software platform uses analytics and machine learning to design and continuously refine a personalized change plan, administered by a human care team that guides the patient through coaching, psychiatric care, or other therapies mapped out in the plan.
Unlike with traditional electronic health records, when any provider on a care team updates an individual’s care plan following a session or visit, Praestan’s platform also automatically updates the dynamic shared master plan, with instantaneous communication that doesn’t require writing a letter or messaging another provider with a progress note. “We need to be using technology to facilitate communication and collaboration in a more seamless way,” says Sulik, “to bring the human component into care more effectively, and to overcome the barriers that get in the way of being present and guiding a person through their path of healing.”
A Revolution in Healthcare
In a TED Talk, Dr. Victor Montori, of the Mayo Clinic, tells the stories of patients who inspired his initiative for more-humane, patient-centered healthcare, called the Patient Revolution.