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August 23, 2001
The Unknowns of the Mechanical Heart
By George J. Annas
BOSTON -- Now we have seen his face, heard him talk and learned his name: Robert Tools is the first recipient of a self-contained artificial heart, following in the footsteps of Barney Clark, who became, in 1982, the first recipient of a permanent artificial heart.
On Tuesday Mr. Tools, who received an AbioCor mechanical heart on July 2, went public, for the first time, in a closed-circuit TV interview. The public learned that he had been a technical librarian and that he is still getting used to having a whir in his chest instead of a heartbeat.
But this information, however interesting, doesn't solve a nagging question that has plagued this entire event: Just how much information should be released in such a medical experiment?
AbioCor's manufacturer, Abiomed of Danvers, Mass., has insisted on a policy of restricting information about Mr. Tools during his recovery. Until Jewish Hospital in Louisville, Ky., released his name this week, it had held only a few news conferences and rarely issued news releases. Abiomed and the hospital had stated that they didn't want to compromise the patient's privacy.
Of course privacy is important in medical care. But motives for secrecy can be mixed: researchers are also conscious, inevitably, that publicity can destroy a research project. A media circus grew up around the first four recipients of artificial hearts, especially Barney Clark and Bill Schroeder, both of whom received the Jarvik-7, a device that required that they be permanently attached to a refrigerator-sized machine. In those cases, the doctors reported even the smallest and most personal details.
Abiomed and the University of Louisville, where the AbioCor research is centered, were justified in wanting to avoid a media circus this time. But they went too far, failing to adopt the full spirit of openness that scientific experimentation on human beings requires.
The artificial heart experiment is about much more than engineering; it is about quality of life. Can the new artificial heart produce a quality of life substantially better than the older models? Or can the mechanical heart only prolong a person's dying process?
To answer these questions we don't need to know Robert Tools's name (which could reasonably be kept secret) or the details of his family life, but we do need to know all there is to know about how he is doing with his new heart. And we need to receive this information from outside, objective observers with medical expertise who see him frequently. Otherwise, our society cannot know whether it is justifiable to implant the artificial heart in any other patient. Individual companies, surgeons and hospitals have no social or ethical warrant to decide on their own whether a particular human experiment is acceptable.
Barney Clark was only well enough to be interviewed on videotape once. William DeVries, his surgeon, asked: "It's been hard for you, hasn't it, Barney?"
"Yes, its been hard," Dr. Clark replied. "But the heart itself is pumping right along, and I think it's doing well."
Dr. Clark's comment acknowledged what his surgeon could not: at some point he and the artificial heart had switched roles. As he became more ill and depressed, Dr. Clark became the means of sustaining the artificial heart. When he died 112 days after the surgery, his surgeon said that the heart was still performing perfectly.
The limits of what doctors can do to human beings in the name of science are a matter for public decision and public accountability. It is too early now to declare the AbioCor either a success or a failure. But before this device is implanted in anyone else, we need full disclosure, objective observers and a realistic assessment of the way it has worked for Mr. Tools.
George J. Annas, a professor at Boston University's School of Public Health,
is the author of "Some Choice: Law, Medicine and the Market."