Improving the "patient experience" is a trending topic in health policy circles these days, the subject of many new conferences and journal articles. Providers puzzle over this. How can they improve patient "compliance" and "adherence" to doctor's orders? What are the techniques to educate patients on "self-management"? How can we better coordinate the various services offered to each patient, so the patient doesn't fall through the cracks?
It is gratifying to see this emphasis on patients. Yet many providers still do not grasp that improving patient experience requires something more than studying the issue and implementing a few new policies. It requires nothing short of a paradigm shift in the way they think about their role in the patient's life, and the fundamentals of their practice.
The best example of providers misunderstanding the depth of this issue, is how the influential provider-governed Beryl Institute defines the patient experience as: "The sum of all interactions, shaped by an organization's culture, that influence patient perceptions across the continuum of care." In other words, Beryl believes that the patient experience is the patient's reaction to what providers do.
Trust me, that is not how patients view their own experience.
"Momma had her last radiation treatment today," a young woman that I'll call Karen posted on Facebook last June. "Can't even explain the amount of strength and courage that crazy lady has shown, and I couldn't be more proud to call her my Mom."
Patients and their families see their experiences as Karen did, as the act of summoning every last reserve of strength and courage to endure each minute, one day at a time. Patients don't see themselves as mere recipients of services. Patients and their families don't talk about self-management or compliance or adherence. They find themselves in an epic story of survival and adventure. They are the reluctant heroes of that personal drama, Odysseus setting forth on the ultimate journey. Some patients are ready and some aren't, but every patient is forced to try their best, since the road is before them.
One of the country's leading thinkers on the patient experience is Dave deBronkart, who miraculously survived Stage Four kidney cancer. His mantra (and the title of the book he co-authored) is: Let Patients Help! DeBronkart advises providers to recognize patients as journeymen, not baggage, in the quest toward recovery. He speaks to provider groups throughout the world, and gave one of the most popular TED talks ever, all with an eye toward reframing the way the health care system engages patients and insisting that patients are part of the cure, not passive recipients of care. He says that patient knowledge and wisdom and willingness to research are a wealth of untapped resources.
Most of us know someone like Karen, Karen's mom or Dave, who stood up and squarely faced the worst news imaginable. Though doctors work with patients every day, there is something very different about being on the other side of the fence, as deBronkart's co-author Dr. Danny Sands movingly recounts in his blog about suffering life-threatening seizures.
Providers can nurture, coach, mentor, guide and be humble enough to realize they have only a small -- though critical -- role to play in the larger life story of the human beings they call patients. Providers succeed when they recognize they aren't treating a disease or filling an empty vessel with "services," but coaching a complex person with a destiny and a legacy who, for better or worse, is the hero of her own life.
I'm sad to report that Karen's "crazy lady" mother, Susan, 52, died from breast cancer a week ago. Susan was beloved throughout her rural Maine community, an exceptional teacher, community volunteer, mother. She had a very special gift with children, many of whom are traveling from far and wide to come to the funeral of this woman they revered.
"I believed a miracle would happen and she would beat this beast," said Susan's dear friend Kathleen. "She fought the most courageous fight I've ever witnessed. Heaven is so lucky to have this new angel."
In my opinion, Susan did win, though not the way we all hoped for. But a life well-lived is the ultimate triumph. "To have been given 22 years with you was such a blessing," Karen wrote in an open letter the day her mother died. "I promise with all my heart to be the fun loving, positive and slightly wacky person you've taught me to be. Thank you for all the amazing memories, Momma Bear."
Susan is a winner, and so are the many excellent physicians and nurses who cared for her through her battle with cancer. As Patch Adams said in the film: "You treat a disease, you win, you lose. You treat a person, I guarantee you'll win." The patient experience is more the stuff of Shakespeare than Grey's Anatomy. Providers with that wisdom will transform health care forever.
This post first appeared on Forbes.com.