6 - Family beliefs and the medical care of children

Summary

Case narrative

Richard, a 15-year-old living with his parents and younger sister, has recently been diagnosed with Hodgkin disease after having been brought into the hospital by a school nurse. He enjoyed good health prior to his diagnosis, having previously experienced no major illnesses or need for surgery. After an initial evaluation, Richard and his parents meet with the hematologist/oncologist to discuss the diagnosis and treatment. They are told that with appropriate treatment, including chemotherapy, his chances of long-term survival are better than 90%. However, side effects of treatment are significant, including marked fatigue, nausea, and vomiting. While long-term sequelae may result from the disease and the treatment, Richard could live for decades with the recommended regimen and be able to fulfill his dream of becoming a pilot. His parents ask what the outcome would be if they decline the recommended treatment and are told that his chances of survival would be extremely low, possibly zero.

The parents appear genuinely concerned for their son and seem to understand what is at stake. They thank the physician for the information and then politely say that the decision they have reached is to pray for healing, and not to give permission for their son’s medical treatment. They say that this decision is in keeping with long-held family beliefs and they feel confident that their son is going to be “fine.” Richard, who seems bright if slightly immature, says he agrees with his parents’ decision and that “it’s about respecting family beliefs and tradition.”