At harm’s length

Beneath the surface

On a cool day in the spring of 2006, I was seeing patients in my clinic. It was about noon when Tina and her mother came in. Tina was a beautiful 13-year-old girl. I had been their family physician since Tina was 6 years old, and over the years I had gotten to know them well. Tina seemed sick that day, which was unusual. She complained of a dull pain in her right knee that had begun about a week before. She had also had a low-grade, intermittent fever.

The physical examination revealed an irregularity of the anterior aspect of her right tibia. I requested an x-ray scan of the affected limb; a central osteolytic tumour was detected in the right tibial metaphysis. The tumour extended toward the knee. Results of a complete blood count showed that Tina had mild leukocytosis as well as an elevated erythrocyte sedimentation rate.

I did not know what to say. How do you tell a 13-year-old that she most likely has bone cancer? I decided not to. “Perhaps it is nothing important,” I whispered. “But I will refer you to an orthopedic surgeon for a better evaluation.”

Two weeks later Tina returned with both of her parents. It was obvious that they had received the bad news from the surgeon. They sat with downcast faces as they described the experiences of the past 2 weeks. Tina had undergone a bone biopsy—a painful procedure for adults and children alike. Her mother handed me a bulk of papers, including the pathology and immunohistochemistry reports and the treatment plan. The results showed that the mass was an Ewing tumour, just as I had suspected. The plan for treatment was transfemoral amputation followed by 4 courses of radiotherapy. The pile of papers contained a request for me to explain the situation to Tina and her family so that they would be psychologically prepared for the operation.

I had a difficult task ahead of me. Briefly I explained the implications of the tumour and asked them to cooperate with the orthopedic surgeon in order to achieve the best outcome. I tried to explain that sometimes we have to sacrifice precious things to achieve more important goals. That is what Tina had to do. She had to lose her leg to save her life. But this would not be easy. Tina was a young, fresh girl who had never faced any problems in her life. These small cancerous cells had become the biggest obstacle this little girl would likely ever have to face.

It was a painful conversation and I wasn’t sure in the end that I had convinced them to follow the treatment plan. They shook their heads. “Surely you are mistaken?” They left my clinic in deep grief.

Beyond hope

I didn’t see Tina again until she walked into my office almost 3 months later. I didn’t believe that her leg had been saved. She seemed cachectic and couldn’t walk without assistance. When I asked why Tina hadn’t had the surgery yet, her mother started crying and explained that they hadn’t been able to accept the idea of such an operation. They had not followed up with the orthopedic surgeon. Instead, they had traveled to Tehran, Iran, to find another way. But after spending 2 weeks there they had found only the same treatment option: amputation.

Then Tina’s aunt, recently returned from studying medicine in India, had told them about an Indian fakir who could treat untreatable diseases. So they had traveled to India to visit the fakir. They had been given incantations and herbal treatments to try, but saw no improvement in Tina’s condition. She developed dyspnea and hemoptysis in her last days in India. They returned to Iran—and to me.

A metastasis to her lungs was detected by a radionucleotide scan. Now there were no treatment options. Tina was admitted to hospital for palliative care; she passed away 2 weeks later. I will never forget the expression on her face in the last moments of her life. It was as though she was asking me not to let this happen again.

She left this world and left profound grief in my heart. Had we had a stronger relationship, Tina’s family might have trusted my advice. Tina taught me how important the patient-physician relationship can be and about the essential role of trust in that relationship. She lives on through my relationships with my other patients as she continues to remind me how to be a better physician.