Warten auf den „Tag X“: Alte und neue Dilemmata für den terminal lungenkranken Patienten mit Mukoviszdose

Summary

The possibility of lung transplantation is the main sign of hope at the otherwise dark horizon of cystic fibrosis (CF) patients with end-stage lung disease. Now that lung transplantation has left the experimental stage, the scarcity of donor organs becomes apparent as one of the major new problems. Therefore, the unpredictably long time on the waiting list becomes a period of futile hope and of despair for some patients. Most recently, the modern noninvasive ventilation methods offer new hope since they promise to effectively prolong survival (on the transplant waiting list). But these new methods may not guarantee survival either.

In spite of medical progress which allows the physician to provide medical support even in desperate situations, the ability (and willingness) to support the dying patient remains an essential element of CF care. It is this ability which was characteristic of CF treatment in the pretransplant era, and therefore intensive care should incorporate this ability as an equally important medical duty. This is much more difficult than before, however, since today the outcome of the terminal stage of the disease must not necessarily be death but transplantation.

“When it comes to dying, arms are for hugging not for intravenous infusions (…) For most of our history as physicians we had few therapies but some kill as comforting the dying and consoling the bereaved. My wife’s clear mind as she faced death, and a concerned circle of physician friends, helped me experience that tradition. Many people do not. It must make sadness even sadder” ([24], S. 279)