Despite the large number of doctors and nurses who crowded the operating room, it was eerily quiet. All in attendance stared in silent horror at the large dark-red tumor that protruded from the vagina of the young girl lying anaesthetized on the table under the merciless spotlight. Just hours earlier, the 10-year-old had been brought into the hospital by her parents for "bleeding." When the emergency room doctor saw the large lesion, he immediately called the gynecologic oncologist. Now in the operating room, two gowned physicians carefully removed the tumor and controlled the bleeding. Afterwards, the child was moved to the recovery room, and from there to the gynecological floor.
As a second-year ob/gyn resident, I was on my first gynecologic-oncology rotation, and the girl became one of my patients. Being on the oncology service, I was captivated by the complex operations and enthralled by the surgical skills of the oncologist who, in my opinion, operated like a virtuoso. During surgery, his movements were like those of a gifted musical conductor, lightly moving the tip of his scalpel or scissors as he effortlessly separated tissues, opened surgical planes and exposed blood vessels, nerves and the ureters, all with minimal blood loss. I was fascinated. The operating room was the focus of my attention. I was far more interested in the technical aspects of surgery than in the patients we operated upon. I quickly performed my daily assignments including rounds, patient admissions and discharges, dictations and outpatient clinics, so I could spend as much time as possible at the operating table. I participated in as many surgeries as I could, even when it meant arriving earlier and staying at the hospital after hours when I was not on call. I thought I had found my calling. Learning to operate like this oncologist, I thought, would enable me to save countless lives.
In the weeks that followed, this little girl was to change this naïve view. She made me a better physician.
The pathologic result confirmed the worst possible diagnosis — an aggressive sarcoma. After an intense discussion by the oncologic team, I was present when her parents were called in and the aggressive nature of the tumor and the very small likelihood of survival were explained to them. The team recommended the immediate removal of their daughter’s uterus, ovaries, and as much of the intra-abdominal tumor as possible, to be followed by chemotherapy. The signed consent form was stained with their tears. I was saddened by the need to remove the uterus and ovaries from such a young person, but since I knew the grim prognosis associated with sarcomas, I understood the rationale for radical surgery as the best option.
I had watched as the young girl was brought to the operating room and anesthetized. I was one of the surgeons to operate on her. Unlike the way I had felt during previous surgeries, this time I noticed that I was unable to concentrate on only the technical aspects of the operation. I realized that caring for her before surgery, and seeing her parents grapple with the shocking diagnosis, had created in me an unfamiliar level of emotional involvement.
During the child’s postoperative course, I found myself spending more time than usual in her room and came to better know her and her family. I sensed that our relationship had changed. She and her parents shared their fears with me and described the details of their lives, as if I were a confidant, a relative, an older brother.
Fortunately, her recovery was uneventful, and she was discharged home.
Three weeks later, she returned for her first round of chemotherapy. Just a month before, she had been a typical youngster, going to school, doing her homework, and visiting friends. Now she was in a hospital room, surrounded by strangers who poked and prodded her and subjected her to painful treatments. She suffered from vomiting and diarrhea, side effects of the therapy. Once again, I did my best to help her deal with the pain, fear, and anxiety. Her familiarity with me seemed to ease her discomfort. Her parents, who put on a brave face while she was awake, shared their heartache with me while she slept. I watched them tenderly care for her, struggling with the knowledge that she was unlikely to survive while still hoping for a cure.
By the time she returned for her second round of chemotherapy I was no longer on the gynecologic-oncology rotation, but she and her family requested that I continue to be her caregiver. She asked that I be the one to start her IV access and begin the chemotherapy drip. My program director and the oncologist agreed that it would make it easier on her and her family, so I became the resident in charge of her care. My bond with her and her family grew. It was painful to see her lose her hair and become more and more swollen from the combination of medications and anemia. While her parents hid their agony from her and her younger sister, they continued to share their pain and fears with me.
While I knew my involvement made this awful experience a little easier for them, it was becoming harder for me. I was no longer able to use my white coat as a shield. I lost the ability to dissociate from the suffering of my patient. Watching her vomit again and again, despite the medications she received in order to decrease the side effects of the chemotherapy, seeing her become weaker and paler with every passing day, it became impossible for me to leave my feelings behind when I went home. Even more difficult was that while I watched the life slowly leaving her body, my wife and I were expecting our first child.
I was again called upon by her and her parents to participate in her third round of chemotherapy. She looked very different from the girl her parents had brought to the emergency room just three months earlier. Her small frame seemed lost in the big hospital bed. She was pale, bald, swollen, and too weak to talk. I sat in her room and held her hand, watching her condition rapidly deteriorate. I saw her family come to accept the failure of modern medicine to save their child. I was there when she passed away.
The death of this little girl and the agony of her family broke my heart. My glorified view of oncologic surgery became more realistic, as did my understanding of the limits of medical therapy. More profoundly, I learned the importance of opening my heart to my patients, making time to listen to their stories and acknowledging their fears and pain. I understood that even when I could not cure a disease and heal my patients, I must strive to make their experiences better by salving the spirit as well as the body. I learned that I could do this by lowering my personal shield and, when appropriate, not hiding my emotions. I learned to make sure they know that I care.
Dr. Neiger is a Professor of Obstetrics and Gynecology at the Department of Obstetrics and Gynecology in Wright State University, Dayton, Ohio. All names and identifying information have been modified to protect patient privacy.
Illustration by April Brust