Lessons from Our Patients: Development of a Warm Autopsy Program

July 2006 | Volume 3 | Issue 7 | e234 Patients and their families can be our greatest teachers. Such was the case with the initiation of the Warm Autopsy Program at the Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease at the University of Pittsburgh. This brief essay describes events that led to our beginning the program, which we believe uniquely benefi ts researchers whose work focuses on the quest to further understand idiopathic pulmonary fi brosis (IPF). We outline the lessons that we have learned in the hope that our experience may be useful for other centers that are considering a warm autopsy program for patients and their families. A detailed description of the regulatory and ethical issues related to warm autopsy is beyond the scope of this essay and has been previously reviewed [1]. The idea for the Warm Autopsy Program was planted as one of our support group meetings was ending. One of the patients approached our clinical nurse specialist (KOL) privately, and said that he was “going to die soon” and wanted to donate his lungs to our program for research. He then said, “I don’t want others who get this disease to suffer like me.” We had been holding a support group for patients with IPF for about two years, and this patient and his wife attended frequently. He was a retired fi refi ghter who was unable to be seen in our clinical program because his insurance would not cover any medical expenses at our institution. His wife learned about our support group on the Internet and they actively participated. He had also been a trumpet player in a band and said that his participation in the band had decreased over the course of his illness. It was obvious that it was important to him to be able to donate his lungs to assist in fi nding a cure for this disease. Lesson One: Listen to the Patient