As physicians, we learn much from our patients

When I first met Mary, already in her forties, she had suffered throughout her life from an arteriovenous malformation of the face. As a result, from early childhood, she had endured the discomfort and humiliation that accompanies the stares of strangers. She came to me hoping I could improve her appearance.

The abnormal connection between the arterial and venous halves of her circulatory system caused her cheek, jaw, and neck to be constantly swollen and red, pulsing with every beat of her heart. Normally, the pressure of the pulse is dissipated as the arterial vessels narrow, and the blood flows through the very small capillaries. By the time the blood enters the venous side, the flow is smooth, more like the surface of a lake, but for Mary, the effect was more akin to the pounding of the surf on a beach during a major storm.

Mary had tried everything in her power to hide the disfiguring facial deformity, from makeup to surgery, but her efforts were to no avail. By the time we met, she had undergone more than two dozen surgeries, yet her deformity remained highly visible.

Operating on this type of blood vessel malformation can trigger massive bleeding, so surgeons need to be careful. They also need to be humble in contemplating surgery after so many other attempts have failed to correct a deformity. If a problem can be easily solved, it usually is on the first or second attempt.

To operate or not to operate?

I knew from long experience that patients commonly feel disappointed after plastic surgery, particularly when their expectations exceed the results. With the outcome so visible, such disappointment can be out of proportion to the objective reality. What others might see as a relatively minor problem – a small, inconspicuous scar or a slight degree of asymmetry – can seem disfiguring to the patient.

In Mary’s case, a great result was simply impossible. I warned her that any improvement would be minimal, at best, and that operating risked further scarring and deformity.

And as difficult as it was to say to her, I made sure that she understood that no matter how successful the procedure was, her facial deformity would remain visible. Strangers would keep staring.

I believed it was essential to be honest with her, not offer false hope. For many patients, I would have refused to do the surgery, but something about her demeanor made me decide to offer her the option of going ahead.

I explained what the procedure would entail, and that she should expect, at best, a 1 percent improvement. She assured me that 1 percent would be worth it.

The operation went without complication. A week later, scheduled to see her in a follow-up visit, I worried about what she would say. But as I entered the exam room, she beamed with a big smile. She handed me a beautiful, handwritten thank-you card, and expressed her deep gratitude for her improved appearance.

Objectively the change was minimal, but to her it was major.

Mary faced the world as she was, dealing stoically with what for most people would be unbearable pain. Her courage inspired me. Over the next decade, I performed several more procedures on her, each bringing small improvement but continued gratitude.

Some of us are bothered by barely discernible imperfections, and 1 percent does not seem like a lot. But through gratitude, Mary was able to accept what she was given, embrace life and move forward.

Hearing the patient voice

As physicians, we learn much from our patients.

In this column and the next one, I’ve singled out four patient stories to share. Together, these four individuals have taught me powerful lessons about gratitude, compassion, listening and acceptance. These skills have proved as essential to my development as a surgeon as the technical skills I mastered in training and honed in practice.

All of the stories are based on real-life experiences but with the names changed to respect the privacy of these special individuals. Readers of this column have enjoyed previous articles about my experience as a physician and have asked me to describe the experience more fully. I am hopeful that by telling these stories, all of us can learn from those experiences.

A life forever changed

I first met Linda, a beautiful little girl with blond hair and unbridled energy, when she was only six years old. She had gone with her family on a camping trip, and as everyone toasted marshmallows on the camp fire one lovely evening, she tripped and fell into the flames. Her face, neck, chest, abdomen, arms and legs incurred second- and third-degree burns, leaving 30 percent of her skin surface damaged.

When she fell into the fire, she braced herself with her hands and burned the skin around all sides of her fingers. The consequence was that what had been soft, pliable skin now more closely resembled leather. I knew the next day the underlying tissues would swell, and the combination would cut off circulation to the fingertips. To prevent this, I took her that night to the operating room and made deep cuts to divide the burned skin and accommodate swelling. This would be but the first in a series of procedures.

Linda would require several weeks in the hospital and three additional surgeries. Each burned area would need to be replaced with skin grafts. And each skin graft would have to be taken from an unburned area, increasing the ultimate scarring by at least 10 percent.

Between each operation, nurses daily took her to a steel tub filled with disinfectant. Overnight, the dressings would stick to the wound and have to be pulled away. Then the dead skin from the burned areas would be removed, and the underlying wounds scrubbed. Each step was more painful for Linda than the previous one.

In the operating room, skin grafts would be obtained by slicing thin layers of normal skin from the deeper tissues, exposing the most sensitive nerves to the air for multiple days until healing occurred. For an adult, the excruciating pain and daily fear proves overwhelming. For a child, it has an impact forever. Linda’s life would never be the same.

I took care of Linda for the next several years, revising her scars and freeing areas of tightness in her face and neck. Over that time, her scarring faded, and her appearance improved significantly. Eventually, her family moved away, and a different surgeon assumed her care.

I stayed in touch with the family, receiving holiday cards each December. Linda sent me a photo of herself at her high school graduation. I called and congratulated her on her college acceptance. Then I lost track of her.

Five years later, at a national meeting, I ran into a plastic surgeon I knew who told me he had met a former patient of mine. When he told me it was Linda, I was delighted and anxiously asked how she was doing. He said she was doing extremely well but added that she was his colleague and not his patient.

Linda had become a nurse and worked with him in a burn unit.

She was the nurse the patients most often asked to clean their wounds and change their dressings. Her compassion and her courage in returning to a burn unit inspired their confidence and soothed their fears.

What do we do with the pain we all suffer at one time or another? Some grow bitter and lash out with anger. But Linda went a different route. She converted her pain into compassion. She devoted every day of her life toward helping others overcome their pain.

Physicians can be frustrated and overwhelmed when we don’t have enough time in a day to complete everything we need to do. Sometimes we hurry as we change a bandage, remove sutures or just talk to patients. Linda taught me the importance of slowing down. Among the best gifts we, as physicians, can give our patients, whether in the exam room or at the bedside in the hospital, is to take the time to demonstrate the compassion we feel.

Gratitude and compassion

Patients are often surprised when, years later, I still remember who they are. After all, I was their only surgeon, but they were one of thousands of patients I treated. Patients rarely realize how much we value the lessons they teach us. And what we learn remains embedded forever, not only in our memories but also deep in our hearts and minds. Gratitude and compassion are two of the most important lessons I have learned, and ones I strive to imbue in the residents I teach.

Robert Pearl is a physician and CEO, Permanente Medical Groups. This article originally appeared in Forbes.

Image credit: Shutterstock.com

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