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Dana Bernstein is a smart, energetic, beautiful 25-year-old woman out to conquer the world. She enchants everyone she meets. Dana is also an expert in understanding the world of healthcare: expert not because she’s on the provider or delivery side of healthcare, but expert because she’s lived on the patient side since she was three. In the past 22 years, Dana has had more interactions with doctors and nurses, more admissions to hospitals, and more procedures than most people have in a lifetime.

What gives Dana her expert credentials is a battle with Crohn’s disease,1 one of the two major bowel diseases characterized by inflammation, or in layman’s terms, significant irritation and erosion of the bowel lining and walls. It’s a disease in which the body’s immune system essentially attacks its own organs. An estimated 1.4 million in the United States suffer from inflammatory bowel disease.2 Not many are familiar with it, and there is no known cause or cure.

Crohn’s disease represents a terrifying spectrum of possibilities. Some can live their entire lives with only very minor manifestations of it, while others develop significant, frequently recurrent, episodes involving the constant use of medications, multiple surgical procedures, and potential loss of the entire intestine, necessitating a small bowel transplant. Crohn’s can affect any part of the intestinal tract and can lead to significant problems in just about every major organ system.

Dana lives at the extreme end of the spectrum. Since her diagnosis, she’s had multiple operations and innumerable hospital admissions and procedures. If you sat and talked with her, you’d believe she’s no different from anyone else her age. But if she shared her struggle with Crohn’s, you’d learn that she has little of her intestines left, uses an ostomy, and receives daily nutritional support through a catheter threaded into her chest. Dana also struggles with managing chronic pain caused by extensive inflammation and the significant scarring from multiple surgeries. She’s facing the possibility of a small bowel transplant, which is a daunting procedure. It will put her life in jeopardy, and she’ll need more than just expert medical care to get through it.

By her own admission, Dana is not an undemanding patient. Aside from the complexities of her disease, she is very much the captain of her body. She and her mother, Cari Marshall, probably know as much about Crohn’s disease as many of the physicians who’ve provided Dana’s care, and Cari has dedicated her life to helping Dana fight her disease. Dana is an activated patient who’s not afraid to be her own advocate. She and her mother don’t just want information to make a decision; they want to be involved in how and why decisions are made.

But Dana also wants something more, and that’s the reason she travels 2,000 miles for healthcare, while there may be experts who could treat her closer to home in Las Vegas. Dana wants her physician to be someone not only who is at the top of his field, but who brings compassion and humility to his work. She found that combination in Dr. Feza Remzi, chair of the Department of Colorectal Surgery at Cleveland Clinic.

In Dana’s words, “I know I’m a tough patient, but I’ve been through a lot and know what works for me and what doesn’t. I often feel when I challenge doctors, they don’t want to engage and have a serious conversation with me about what’s going on.” She believes that Remzi cares for her as a patient, but also treats her like a friend. “He cares for me—I can feel it in the way he talks to me and the way he treats me,” she says. “He actually yells at me sometimes, but that shows he cares.”

Does considering a patient a friend cloud a doctor’s judgment and objectivity? “Absolutely not!” explains Remzi. “I’m her physician and surgeon first, but is it too much for me to care for her as a person?” Remzi explains how this brings more to the table: “If caregivers feel personally engaged, they will be sharper and more in the moment.” As a physician, he knows the boundaries. “I’ll never compromise what’s right for her care, but I’ll always see myself as her partner and advocate in helping her to conquer this terrible disease. We are friends in the foxhole together. I have her back, and she helps me be a better doctor—she keeps me sharp.”3

Remzi provides Dana with medical advice and treatment, but he also helps guide her and her family through the right decisions. Dana’s mother describes Remzi as one of the most compassionate and caring people she has ever met, saying, “His empathy is real!” The family’s trust and confidence in Remzi’s medical ability is bolstered by his concern for Dana as a person, not just as a patient.

Is it truly possible to expect both high professional competency and compassionate care with a human connection? I had the honor of being a guest speaker at an advanced executive leadership course at Harvard Business School when we discussed this very question as part of a Cleveland Clinic case study. We were considering the patient experience, how it factored into the treatment of patients and whether there could be a financial return on investment to help drive these concepts across an organization. I posed a dilemma to the students: You’re a patient needing heart surgery and have the choice of two surgeons. One is absolutely the best in the world by every measurable objective outcome, but she is mean and doesn’t communicate well with patients or their families. She’s a true technocrat who has no empathy or humanism. Your other choice is a surgeon renowned for compassion and empathy, but his outcomes, while within the standard of care, by reputation are not quite as good as the other surgeon’s. Whom would you want to do your surgery?

Interestingly, the students were about equally divided in their choice. Some said they didn’t care whether the surgeon ever talked to them, as long as the operation was a success with a great outcome. Others took what I call the more “humanistic” perspective: they wanted someone to care for them as a person as well as perform a competent operation, arguing that if the compassionate surgeon’s outcomes were within the standard of care, that was good enough.

As a surgeon who has seen excellent, marginal, and poor surgeons up close, I used to believe that technical proficiency was the most important element of surgical care and that if I ever needed an operation, I would surely choose technical prowess over everything else, including whether the doctor talked to me. I have seen very nice and empathetic but technically challenged surgeons navigate terrible complications and avert liability by building strong connections with patients and families. This illustrates a fact that’s often revealed in malpractice litigation: Doctors don’t get sued because they are incompetent. They get sued because they don’t communicate or build relationships with patients and families.

I wonder how the Harvard students would have responded if my colleague Shannon Philips, Cleveland Clinic’s quality and safety officer, had first educated them about the culture of safety. Technically proficient but disruptive physicians actually create an environment that is unsafe and stifle other caregivers from stepping forward to protect patients. These physicians can actually have worse outcomes because they foster a culture of fear. I suspect the students who favored the technocrat might have reconsidered.

Being on the other side of healthcare, both as a patient and as a family member of a patient, changed my beliefs about what I want from a physician. Patients deserve—and should demand—a physician who is medically competent as well as empathetic and compassionate. I also believe that as healthcare leaders responsible for safeguarding quality medical delivery, we should work hard to ensure that we provide both.

Brian Bolwell, chair of Cleveland Clinic Taussig Cancer Institute, is, like Remzi, among the smartest physicians I know, and also a caring and compassionate human being. I was in his office one day, and he seemed subdued. I asked what was wrong, and he said, “A young woman I took care of for a long time just died. It’s impossible not to be sad.” She was not merely a patient to him; he knew about her life, shared a journey with her, and cared about her. If I am ever diagnosed with a terrible disease, I want physicians like Remzi and Bolwell to care for me. I want to have a connection with the persons treating me. I want to know that they care about me personally, that they are as invested in my recovery as I am. Yes, I demand that they be competent and objective, but I want to know that they will be there with me and for me. I don’t want some brilliant technocrat to just perform a procedure and walk away without an afterthought as to how I will get back to my life. I want my doctors to know something about me as a person, listen to what I think, and understand that outside the hospital I have a life, a family, and friends. Why is this important? I want my doctors and other caregivers invested personally in my outcome.

Empathetic care that transcends the human condition is what I aim to provide to my patients and is the standard we should all expect for ourselves as patients. A personal investment in empathy and compassion by all caregivers is the foundation of the future for healthcare. We must align our organizations and people around patients and how we deliver care to them.

A focus on the patient experience has become a differentiator for Cleveland Clinic. Dana travels 2,000 miles for high-quality care and high-quality caring at our institution. Our alignment around the patient impacts everything we do, not only improving patient satisfaction, but ultimately enhancing our delivery of safe, high-quality care and high value. Any healthcare system in the world can and should adopt putting patients first as its primary purpose.

When we began our patient experience journey, there was no textbook or playbook telling us how to start. The healthcare scholarship doesn’t often consider the competency of how to deliver care. Trial and error became our modus operandi. We created our own strategies and tactics, adopted some from others, and applied lessons from businesses outside healthcare. Our approach has been based on living the challenges at the front lines of a diversified and heterogeneous healthcare system with incredible patient needs and demands. Our physician champions, including me, still see patients. Our nurse champions are at the patients’ bedside. This frontline involvement and commitment is one of the reasons we’ve been successful. You cannot fix the patient experience from a 50,000-foot strategic perspective; most of the work must be operationalized at the patient touch points and carried out by frontline caregivers.

From a practical standpoint, improvement required us to frame a strategy concisely and then focus on key elements that allowed us to implement it. Everything patients—and their families—see, do, and touch is considered by us as the patient experience.

This book focuses on how to think about the patient experience, how to define it, and the factors we feel are critical to enhance it. Improving patient-centeredness also impacts how we deliver safety and quality. These are important not just for patients, but for caregivers as well.

In the subsequent chapters, I describe how Cleveland Clinic’s leadership determined to make the patient experience a priority, defined it, and set a strategy for improving it. I discuss the foundational elements of culture, physician involvement, and understanding patients. I share our execution successes and failures, including how we organize, recruit, train, and measure for service excellence; how Cleveland Clinic has evolved its culture and aligned its workforce around Patients First; and how we improved the critical element of physician communication. I convey my beliefs and experiences regarding cutting-edge issues such as making patients our partners in ensuring a quality experience and sharing approaches with caregivers worldwide so that patients everywhere can hope to receive better care.

I have written about Cleveland Clinic’s journey because we have made a difference and our approach is working. It is just one of many possible approaches, and you may find that it can help your organization. And just as we have learned from a variety of different businesses outside of healthcare, I believe that our strategy and many tactics hold lessons for other businesses as well. Aligning a workforce around the customer is applicable to any business that has customers, which is every business.

No doubt some reading this book will look at parts of our organization and say that our approach is not functioning as well as we think. Improving the patient experience is hard work, and we still have a lot to do. But just as Cleveland Clinic historically has had relentless focus on medical excellence, there’s no question that we now pair that with a relentless focus on improving the patient experience. We have gone from being among the lowest-rated hospitals in the country for patient experience metrics to among the highest.

This book is not meant to be a comprehensive resource for every patient experience tool available or a technical manual of all that we do. I discuss our strategy and many of our tactics, and I describe some of the roadblocks we encountered. If you peer under the hood of our organization, we look like most other healthcare systems—perhaps even like yours. We have the same needs and challenges, and we all face an uncertain future.

There are some elements unique to our journey that have granted us unusual success. Cleveland Clinic’s appetite for innovation allowed this program to gain hold and flourish, giving us a head start. But at the time we began, external pressures were not as intense. Today, the forces pushing hospitals to get better are much stronger, so this should help others gain the foothold they need to climb the path of improvement.

It’s my hope that you will find something in this book that can help your organization. Perhaps the book will reinforce that you are on the right path and provide you with a reassuring pat on the back. My goal is simple. If you deliver healthcare, you must think about how to align your organization around the patient. In such an environment, Remzi, Bolwell, and millions of other caregivers throughout the world can deliver high professional competency and compassionate care with a human connection. It is what patients like Dana Bernstein want. It is the right thing to do, and it should be the focus of healthcare. It is what you would want for yourself and your family.

 

Notes

1.

Bruce G. Wolff, James W. Fleshman, David E. Beck, John H. Pemberton, and Steven D. Wexner, eds., The ASCRS Textbook of Colon and Rectal Surgery, 1st ed. (New York: Springer Science + Business Media, LLC, 2007), 584–600.

2.

“Inflammatory Bowel Disease (IBD),” The Centers for Disease Control and Prevention, accessed March 24, 2014, www.cdc.gov/ibd/.

3.

Dana Bernstein and Feza Remzi (Chair, Department of Colorectal Surgery, Cleveland Clinic), in multiple discussions with the author over the period January–April 2014.

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