A Paper Graveyard in Pittsburgh

Among a great a variety of other material, Dr. Starzl’s archival collection contains two boxes of documents culled from material that had been discovered in the “attic” of Dr. Starzl’s Pizza Hut office building. This material had initially been slated to be destroyed. Their loss would have been unfortunate because the content in the 23 boxes revealed a dark side of the liver transplant revolution that occurred between 1981 and 1990. 

Recognizing this, Dr. Starzl and Katie Benedetti personally culled the more than 2000 patient folders in 23 boxes marked for destruction and decided for each folder whether it contained documents worth saving.  Almost all of the patients whose records were in the 23 boxes had sought candidacy for transplantation but died before liver replacement could be accomplished.  After consignment to the “died while waiting” category, their names were removed from the candidacy list.  Thus, the 23 “for destruction” boxes constituted a gigantic paper graveyard of people who came to Pittsburgh seeking a liver but did not receive one. (Doc. 1, Doc. 2, Doc. 3, Doc. 4)

Because the workups of these patients proved to be futile, only the key correspondence has now been preserved, and even then, limited to about 250 selected cases.  The principal emphasis was on personal letters written or received by Dr. Starzl.  An exception was made in 15 Colorado cases; these were the only Denver charts in the “attic boxes”.  Because of the scarcity of Denver information throughout the Pizza Hut material, these 15 folders were all retained in their entirety; i.e. nothing was culled from the Colorado charts.

Most of the letters from Dr. Starzl were to the referring physician, or frequently to the patients themselves.  Combined with other material (e.g. autopsy report summaries, newspaper articles), relatively complete stories of individual patients could be pieced together.  Moreover, a clear picture emerged of the turbulent landscape of the early and mid-1980’s that allowed the following generalizations:

By 1981, it was increasingly acknowledged that liver transplantation (developed in Denver) had reached the level of a viable service.  Because the University of Pittsburgh (at first) and then Cambridge University (England) were the only 2 centers in the world to provide this service, floods of desperate patients with end-stage liver disease descended on the 2 centers.  Overwhelmed by supplications for care from all over the world, an administrative framework was erected in Pittsburgh to try to deal with the overwhelming demand.  In May, 1981, Dr. Starzl submitted an organizational plan to Mr. Dan Stickler, the Director of Presbyterian University Hospital Doc. 5).

Due largely to the severity of disease, only about 10% of the potential candidates (probably less), actually made it to liver replacement.  Many were admitted for evaluation and died within a few days, before studies could be completed. Despite the chaotic environment, there were surprisingly few complaints from patients or their despairing families. When these occurred, highly personal letters of apology were written by Dr. Starzl or other members of the team.

Screening was initially done by a small group of people: Dr. Starzl, Dr.Shunzaburo Iwatsuki, Dr. Byers Shaw, and an intensive care nurse named Sandra Staschak (later married with a name change to Sandra Staschak-Chicko).  Soon after, separate evaluation services were set up for adults by Dr. David Van Thiel.  For infants and children, a pediatric group headed by Carl Gartner stepped in. Gartner’s younger associates were Basil Zitelli and Jeff Malatack with the addition in the late 1980’s of Andy Urbach.  Financial concerns also were evident in the correspondence. By 1982, stringent requirements for money deposits were enforced before patients were accepted for evaluation. This was a particularly painful matter for overseas patients who were writing from every country in the world, trying to get on the Pittsburgh list.

Another theme exposed by this collection is the desperate effort by Dr. Starzl to stem the tide of tragedies by rapidly training new team leaders and exporting them to other centers.  By 1985, approximately 10 new programs led by these men and women had sprung up in the United States.  An incomplete American list included 3 Harvard hospitals (New England Deaconess, Massachusetts General Hospital, and Boston Children’s Hospital), the Mayo Clinic, Mt. Sinai in New York, UCLA, Baylor University Hospital (Dallas), University of Nebraska (Omaha), University of Colorado (Denver), University of California (San Francisco), and Stanford (Palo Alto). In addition, a torrent of visitors from Asian, multiple European, and other North or South American countries arrived for extended sabbaticals or fellowships in transplantation.

By 1990, the maps of the world were populated with liver transplant centers to an extraordinary extent, almost all led by surgeons trained in Pittsburgh.  Many of the successful second generation American centers (e.g. UCLA) engaged in training their own fellows. The overall result was that liver transplantation was assimilated within one decade into the armamentarium of conventional medical practice.  The job was complete by the time of Dr. Starzl’s retirement in December 1990, 3 months before his 65th birthday.

The tragedies that made up almost all of the 2000 patient folders of the attic collection had dwindled by the end of the millennium.  Virtually every major University center (and some private medical centers) now offered liver transplantation as a service that could be traced back to Pittsburgh.  In fact, the fleet of Pittsburgh-trained surgeons who had founded their own U.S. programs had launched a lively competition for the scarce supply of organs.  The disparity between liver supply and demand that exists today (2011) was all too apparent.

Prepared and written by:
Dr. Thomas E. Starzl and
Katie Benedetti on August 25, 2011