Don’t forget the relatives

The 25 year old patient had a rare skin disorder called Stevens-Johnson syndrome. She had been in intensive care for several days. One morning, at 9.40 am, her core temperature was 38.5°C. At 10 am it had climbed to 40.5°C. By 1.30 pm it was 42°C. At 4 pm it had risen to 43°C. It reached 44.4°C before she went into cardiac arrest. After 10 cycles of cardiopulmonary resuscitation she was pronounced dead, at 6.13 pm.

Nine months later I represented the patient’s relatives at the inquest. They said they had no idea she might die, that no one had bothered to tell them quite how sick she was. “If we had known,” the mother said, “we would have stayed with her in that room the whole time.” Their complaint is a familiar one.

Historically, the clinician’s gaze has been focused on the patient. The patient’s intimates have remained in the shadows. The doctor-patient dyad leaves out the family. The Hippocratic Oath states, “Into as many houses as I may …