Case example

Dr. Tyson is a general pediatrician in private practice. He is caring for Gail, a 5-week-old infant who presented to his office three weeks ago when her parents became concerned about her decreased feeding and apparent weakness. The parents reported that they were told that Gail was normal and healthy when they took her home from the hospital. Gail is a pretty baby girl, but Dr. Tyson's initial physical examination three weeks ago revealed that she was seriously ill. She had an elevated respiratory rate and very poor muscle tone.

Dr. Tyson was concerned about a life-threatening infection and so began a course of antibiotics immediately and admitted Gail to the hospital. While in the hospital, her respiratory condition worsened, and she was intubated and placed on a ventilator. No infection was discovered, but a muscle biopsy revealed tragic news: Gail has a rare and incurable genetic disease called fatal infantile myopathy. This condition is caused by a genetic mutation in the mitochondria of the muscles that leads to progressive weakness and death, usually within six months. Dr. Tyson shared this diagnosis with Gail's parents and grandparents and grieved with them.

At a subsequent family meeting, Gail's parents and grandfather (who is a pastor at a local church) told Dr. Tyson that they were praying for Gail's recovery and believed that God would not allow her to die. Dr. Tyson replied that he wished that Gail could be cured, but that he believed that Gail's illness was incurable and that she would die soon, with or without the current treatment measures. He voiced his concern about the pain and suffering associated with artificial ventilation, needle sticks, feeding tubes, and other interventions required to keep Gail alive. Dr. Tyson recommended removing the ventilator, but the family rejected this recommendation. The family did seek the advice of a theologian from a nearby Bible college. The theologian listened to Dr. Tyson's and the family's views, and acknowledged the difficulty of the situation, but offered no solution. How should Dr. Tyson proceed?

The rise of the futility debate

As described in Chapters 15 and 16, a series of US court decisions in the 1970s and 1980s established patient rights to refuse life-prolonging medical treatment.