When the System Fails

I PURCHASED a purple “My Little Pony” at Walmart. I told myself it was to bring a brief smile to a sad little girl’s face. In reality, it was for me. In the overwhelming apparatus that medicine has become, sometimes the patient gets lost. So does the doctor. As the major safety net hospital in our region, my own hospital is arguably better equipped than most to effectively handle the human side of medical care. But even the most experienced institutions face an increasingly uphill battle against the systemic shortfalls of American medicine.

The patient, whom I’ll call Mohammed, was an American citizen, fully employed with health insurance, although with limited English language skills and health literacy. I had been his primary care doctor for seven years, and he came to me about two years ago with a lesion on his scalp after hitting his head on the door. I didn’t know exactly what it was, although my best guess was some sort of post-traumatic injury. I sent him to surgery for another opinion. The surgeon concurred with my diagnosis, but scheduled a biopsy. What I didn’t know was that Mohammed didn’t return for the planned procedure. He was struggling as a new single parent to his two young children who had just arrived from a war-torn African country, while his wife was left behind, her visa delayed by bureaucratic obstacles. He had deferred the biopsy because of his life circumstances without understanding the significance, and without catching anyone’s attention. The ball was dropped, and he fell through the cracks in the mighty apparatus.

Fast-forward eight months to the next time I saw Mohammed. He was scheduled into an overstressed clinic where non-English-speaking and other vulnerable patients are often squeezed into 15-minute appointments.

Mohammed’s appearance was shocking. His head was wrapped in a turban-like surgical dressing, his smile and face deformed from surgery and resulting nerve damage. The pathology report was a punch in the gut: malignant melanoma. The surgeon had not called me about the diagnosis. My patient did not understand it; he had never heard of melanoma.

I read through the progression of events in his medical record. He eventually had an excisional biopsy after multiple missed appointments and delays, and then a massive head and neck surgery as part of his treatment.

There were some bright spots in this tragic situation. I enlisted the help of Representative Michael Capuano, the Department of State and the patient’s lawyer to expedite the lengthy immigration process to bring Mohammed’s wife home, which was nothing short of a miracle, and they were finally reunited. When he was feeling sick from the effects of chemotherapy, I visited Mohammed at his house where he served me tea and I read to his children. This is when I first learned of his daughter’s interest in “My Little Pony,” and that her favorite color was purple. He and his wife brought a prayer rug for my clinic to share with all of my Muslim patients.

The last time I saw Mohammed, he was in the hospital, where he was being treated for pneumonia and pain from his rapidly progressive metastatic disease. For the first time he did not smile and his eyes seemed vacant, but I was consoled that he had the comfort of his wife’s presence. It occurred to me later that I never asked him or his wife how and where he wanted to die. I assumed it had been done, but also realized I wasn’t really equipped — psychologically or technically — to do it.

Mohammed died shortly thereafter, having outlived his projected survival, 21 months after his diagnosis. He was 42 years old, and his children were 4 and 9.

Months afterward, his wife came to see me and described his death. When Mohammed began to deteriorate at home, the family brought him to the emergency department. It was clear they did not understand the role of hospice care. I was not informed of this visit. His wife told me that the following morning, Mohammed went to the bathroom and collapsed, unable to get up. He vomited blood. His wife and young daughter could not lift him back onto the bed, so they positioned him on the floor as he died. Afterward, his young son pulled back the sheet they had placed over the body and said, “Daddy is asleep.” The hospice nurse was scheduled to come at noon that day.

Mohammed’s “high-tech” cancer treatment cost hundreds of thousands of dollars. The human cost is not measurable. Investment in care managers, health educators, reasonable visit times for clinicians to spend with patients, home visits, collaborative appointments among specialists and primary care doctors, and enhanced communication within care teams are necessary and low-tech ways to improve the care of all patients, but especially our most vulnerable populations, albeit at a financial cost. Death planning must be integrated into this care and reimbursed.

The current landscape in medicine is that physicians are burdened with ever increasing workloads that make devoting the required time for complex patients very difficult. The fast-paced corporate environment of medicine is not conducive to good communication — either among clinicians or with patients. This became especially poignant toward the end of Mohammed’s life when there was little communication among different silos of caregivers, and poor comprehension of a death plan for Mohammed and his family.

I will never know if this tragic outcome could have been averted, but I will always wonder. There is nothing to speculate about his death planning. It was poorly done.

Mohammed repeatedly told me that his fate was in Allah’s hands, but he had also entrusted his care to me, his doctor.

Sondra S. Crosby is a physician and an associate professor of medicine and public health at Boston University School of Medicine who specializes in refugee health.