Commentary.

Abstract

Case Sara, a 23-year-old woman, was admitted to the transplant service with early-onset idiopathic pulmonary fibrosis, neutropenia and anemia. Both her mother and brother were affected with the same disorder. Her mother died several years ago, ventilated in the intensive care unit (ICU); a death Sara describes as horrible. After witnessing the death of her mother, Sara said repeatedly " I will never die that way ". As a result she appointed her aunt power of attorney for personal care. Her brother had a successful transplant 3 years ago and is known to the transplant team. Sara has now deteriorated with possible community-acquired pneumonia (cultures negative to date) and is hypotensive. In discussion with the transplant team Sara says she wants a transplant, but refuses ventilation. Her last words to the ICU team before intubation are: " No don't put the tube down … I don't want it … I don't want to die like my mother … please, no ". On the night that Sara's condition deteriorated, the decision to intubate was made by the ICU resident with support from the transplant team. After 10 days, the patient remains unstable on increasing ventilatory support. The family is insistent on continuing treatment despite the earlier wishes of Sara. The transplant team assures the family that Sara can be maintained indefinitely on ventilation and they can perform the transplant unless she gets an infection. The ICU team is experiencing growing tension, as their efforts to maintain life support are increasingly difficult with little hope of survival. Sara is now on high-frequency oscillating ventilation. The ICU nurses are unclear of the plan as previously policy stipulated that ventilated patients were not transplant candidates. They find the family's expectations of complete recovery unrealistic. They want to know what is realistic to expect.