In 1992, I graduated from college with a degree in business and enrolled in the National Marrow Donor Program, never really expecting to match. But, a few months later, a phone call came from the Red Cross; I had “matched.” Would I come in for screening?
I was informed that the identity of the person to whom I might be donating could not be divulged. I envisioned a patient and family as they waited, hoping for their opportunity. I imagined their prayers and their anxiety. “What if it were me or my family?” I wondered. “Would someone care for us?”
After weeks of tests and exams, another call came; we had matched! Then, several days before the transplant, it was cancelled because the patient was too ill. That night, I penned a letter to the patient, saying, “I hope you pull through. I want to be of help. If you can, just get stronger, I’m still willing to do it.” I gave the letter to the Red Cross coordinator, who promised to pass it on anonymously if the patient’s family agreed.
Several weeks later the patient had recovered and was ready for a transplant. Blood and bone marrow were taken through two punctures in my pelvis. Meanwhile, my original letter had touched off an avalanche of letters, pictures, and stories from the patient and his family. Through them, I was afforded the extraordinary opportunity to become a part of Larry’s story.
I learned Larry’s story — about his children, his wonderful wife, his amazing family, and his gracious and loving friends — and, through this, became connected to their lives. Larry was able to return home, visited his favorite restaurant again, took family trips, was a father to his kids and spent time with his wife – all the things leukemia had robbed him of during the previous 16 months. “I” was along every step of the way, as my bone marrow took hold.
By now, inspired by Larry’s story and our relationship, I had begun studying for medical school. And as I dreamed of what kind of physician I wanted to be, there was no doubt; it was a doctor who would care for patients like Larry.
One day, another call came. Larry was very sick. His body was rejecting my bone marrow. I penned another letter to him and his family, and prayed. But alas, Larry died several days later, surrounded by family and friends. I grieved as if it were the death of a family member or close friend. I still felt strongly connected to Larry and his family.
I received a letter from Larry’s wife, telling me how much Larry had enjoyed his last months of life. “He really lived and enjoyed living,” she said. She said thanks and that she hoped I didn’t consider my contribution to Larry’s care to be in vain. She said one of the things that Larry looked forward to the most was reading my letters, and it made him feel proud to know he had inspired me to study medicine.
I went on to become a physician, naively thinking that most of my experiences in medicine would be as inspirational as those I had with Larry and his family. But “health care,” as I would come to experience it as a medical student and physician, was very different than I had imagined it. When I heard patients complain about their medical care, it was hardly ever about the lack of technical care or competence. Instead, it followed a common theme: “He just didn’t seem like he cared.”
During medical school education, the patient’s story was relegated to the category of “poetry” or “essay.” Healthcare valued technical competence more than these stories. As I listened and learned, becoming increasingly proficient in medicine, I kept looking for what had inspired me to become a physician in the first place. And I was having trouble finding it!
As I entered practice, the more the pressures of a busy medical office competed for my ability to participate in the patient’s story, the less effective I found myself as a healer and the less joy I found in medicine. Practicing rural family medicine helped me discover that patients often come to physicians with much more than just medical problems. They brought legal, marital, spiritual, financial, educational issues, and more. I discovered that I could solve as many health problems with a car ride, phone call, letter, or chain-saw as I could with penicillin.
My eyes were opened to the story of the patient, and what care they expect and need at this moment in their story. My fascination grew with the idea that the patient’s life is a story in which health care only intermittently plays a role. Care meant something more.
Though I became skilled at negotiating the clinical protocol, patients often came to the office seemingly indifferent to my agenda. I pushed to accomplish the checklist, worried the patient might suffer through an oversight on my part. Whether it was just a need to visit or ask a question about life, my agenda usually didn’t allow enough time to fully accommodate the patient’s story.
Though medicine is necessarily standards driven, we often thrust these on patients without their full understanding or engagement. And this approach tends to set up a dependent relationship. If it occurs without kindness, caring, and respect, patients may even perceive it as a form of harm, and either avoid care or disengage completely. And when it is unwelcome, it creates antagonism, yet another form of harm.
But, with my hand on the doorknob, the simple “Oh by the way…” offered up by the patient at the conclusion of an office visit invites me to delay my agenda and just listen. I am offered a chance to become a part of the patient’s story, where the patient is at the center and I am being asked to care. It is in the “oh by the way” moment when I discover that a “normal appearing” woman is abused by a model citizen husband; a spouse’s alcoholism is driving a family apart; a teenager has been taking her mother’s pain medications; and I learn how depressed and close to suicide the seemingly carefree successful father of three is as his business descends into bankruptcy and his marriage into divorce.
Pressure that physicians feel to maintain a good business model threatens to overlook a critical part of our “product.” In health care, the patient’s story and the relationship have ironically become the obstacle, rather than the objective. The consultative visit, the one place where the patient can discuss what is important to them with a trusted healer and confidant, is relegated to an agenda and a timeline by the need to see enough patients in a limited time to pay the bills.
Pauses such as the hand on the doorknob can be transitional points to discovery and relationship. In these pauses, I often felt the connection with the patient that is missing from the hamster wheel of a busy clinic or ward. In the pause, the agenda becomes the domain of the patient. In the pause, I often find myself uniquely free to listen and participate in the patient’s story. And in the pause, I’m able to suspend my assumptions and just listen.
Last year, I underwent my own extended “pause” as I left my clinical practice to attend a fellowship at the Institute for Healthcare Improvement (IHI) in Boston.
During the year, as I listened to patients talk, I discovered that many considered our health care system to be completely out of step with their lives. Patients spoke of their sense that health care just no longer cared. They reminded me that caring is not just about being nice to others. It is about an awareness and consideration of the true needs of others cultivated by a relationship between patients and those who provide care.
An article by Emeril Szilagy, “In Defense of the Art of Medicine,” captures the nature of this relationship between healer and patient, and between health and care. “A man stricken with disease today is assaulted by the same fears and finds himself searching for the same helping hand as his ancestors did five or ten thousand years ago. He has been told about the clever tools of modern medicine, and somewhat vaguely, he expects that by-and-by he will profit from them, but in his hour of trial, his desperate want is for someone who is personally committed to him, who has taken up his cause and who is willing to go to trouble for him.”
Health and care transcends position and location. I also discovered that most care delivery is actually self-care. As much as I might think I affect health outcomes, most are influenced by factors other than “me,” and are outside the four walls of medical delivery. Socioeconomics, biology, geography, education, literacy, temperament, environment, and networks all play a role in outcomes.
Through listening to patients, I began to realize that health care’s focus on controlling the access to and location of the diagnosis and treatment of disease, without empowering connections and relationships, displaced any opportunity for breakthrough improvements in health and care.
Health care providers must embrace the goals of improved safety, efficiency, effectiveness, and timeliness, but must also realize that health care does not own health and care. If it is owned by anyone, it is owned by patients. We need to include patients as we listen, learn, and redesign our current systems of care with them and for them. Care must become a community metric where all who work in service participate and understand the impact and importance of their role in the health of others.
Though metrics are important, a thermometer cannot measure despair, a Hemoglobin A1C is not an experience, and a blood pressure is not a heart-to-heart chat. If the connections and relational aspects of medicine are minimized or eliminated, health care and medicine become commoditized, and care becomes relegated to the status of a drive-though oil change which, even if technically competent, is soulless. If treatments and tests are ingredients, relationships and stories are the meal. Making the mistake of preserving one at the expense of the other lessens the potential of both. This is the essence of high-touch medicine, and it is why the pervasive need for the injured and hurting to seek healing from caregivers has endured across the millennia.
It is critical to get this right if we are ever going to restore the idea of “health” to health care. “Patient-centered” health care must not just “put” the patient at the center — a controlling and somewhat paternalistic concept. Patient-centered care  must mean that the patient elects to determine his or her location within health and care, and implies that we need to work with patients to develop a system for their needs. This might mean that we aren’t the biggest part of their story in some cases, and it behooves us to recognize when health care adds value and when it’s just in the way. Through a better understanding of the patient’s story, we can begin to see how we can truly help patients.
Increasingly, patients are self-directed. They are blogging, writing on “walls,” and forming self-help communities. But for each of these, there are others whose stories elude us, and they may struggle to find outlets to express themselves. These are the stories the health care system has never fully discovered. For them, systems supporting health and care must reach out to better understand their story and determine how we can best care. To accomplish this, systems of care must incorporate ways for all who provide care a way to truly “see” the patient; in so doing, patients can, in turn, “see” us.
It took a year away from patients for me to finally realize that the major impact of my relationship with Larry was not the “medicine” I was able to provide. Though important, it was ultimately not successful. The real value occurred in the relationship that afforded, if only for a while, an opportunity to care for another person and their family. As such, it allowed me to really “see” Larry and for him to “see” me. This is a mutually restorative process for healer, patient, and family.
Health and care will only become patient-centered when patients are allowed to design the “center” they want and need. A “center” based on a story. This one’s for you, Larry. Thanks for teaching me what it means to care and for allowing me to participate in your story.
The patient will see you now. Are you ready?