Ian Bykovsky

Ian Bykovsky is a twenty-six-month-old child of recent immigrants from a former Soviet-bloc country. He had been a well child, but, because of fever and cough, he was taken for a pediatric visit. Physical examination and laboratory studies led to a presumptive diagnosis of acute lymphoblastic leukemia. Ian was admitted to the hospital, and the diagnosis was confirmed by bone marrow aspirate and biopsy.

            Communication with Ian’s parents is complicated because neither speak English. A family member who does speak English attended meetings between the physician and Ian’s parents, to interpret the explanation of Ian’s condition and the medical recommendations. They physician explained that standard treatment for Ian’s condition included one month of inpatient treatment with steroids and chemotherapy, followed by two years of weekly outpatient treatment with steroids and chemotherapy. A Broviac catheter would be necessary as well as a series of spinal taps.  The physician explained that with this standard course of treatment, Ian had an 80 percent chance of permanent remission. The physician also explained that the side-effects of the treatment would include hair loss and nausea, as well as some long term effects on Ian’s learning ability and heart function were possible, but they should be minor. Mr. and Mrs. Bykovsky decided they did not want this treatment and provided a number of reasons for their position. First, they said that the treatment would be a long and painful ordeal to put a child through, they were also concerned about the spinal taps. They were also afraid of being responsible for Ian’s home care, particularly using the Broviac catheter. They spoke of the easier acceptance of life and death in their native country, and how people there typically have large families, in part from an expectation that not all children would survive to maturity. In their country, people are less likely to rely on aggressive medical treatment when a grave diagnosis is given. Mr. and Mrs. Bykovsky could accept that Ian’s life would be shortened by their decision, but they preferred tat to subjecting him to the horror of treatment.  Furthermore, Mr. and Mrs. Bykovsky said that they were guided in their decision by the deep religious convictions of their Pentecostal faith, that the hand of God would decide Ian’s fate.  The Bykovskys are told that if there leave the hospital against medical advice that a child protective agency might authorize Ian’s treatment over their objection. They respond that they left a totalitarian state for America because of the promise of religious and personal freedom, and that this kind of interference by the state in their family’s life was exactly what they thought they had escaped. 

--by  Jeffrey Spike and Jane Greenlaw