Last Journey of Artificial Heart Recipient – NYT

Tue, 8 Oct 2002

Sheryl Gay Stolberg’s drama-filled, but sobering article in The New York Times, chronicles the ordeal of James Quinn, the subject of an extraordinary and wrenching medical experiment in which his heart was replaced with an artificial one. From a scientific standpoint, the experiment was “successful”– the heart functioned from Nov. 5 until it was unplugged, Aug 26– but the patient (not to mention his wife) suffered far more than he had expected before he died. “This is nothing, nothing like I thought it would be, he said. “If I had to do it over again, I wouldn’t do it….I would take my chances on life.”

Especially troubling in this, and other fatal experiments–including the gene transfer experiment that killed Jesse Gelsinger–is the central role played by those with financial stakes in t he enterprise. In this case, Abiomed, the manufacturer of the artificial heart–in controlling the discussions about ethical problems.

The Times reports that Abiomed created “a council of independent ethicists to advise the company and to serve as patient advocates.” That is a contradiction in claims: ethicists who are hired by bio-tech companies lose their independence instantly. Such advocates render advice that furthers the interest of the stakeholders– they cannot serve as bone fide “patient advocates” and should not be authorized to do so.

Especially revealing ( in the excerpt below) is the tension between the culture of medicine as a healing profession, and the culture of biomedical technocrats. The underlying conflicts of interest surface especially when there are setbacks in the experiment. From then on, the patient’s deteriorating condition, and human needs are viewed as a burden by company representatives, a burden from which the company wants to detach itself.

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EXCERPT: Dr. Michael Berman, the F.D.A. official overseeing the trial, says the agency strongly urged Abiomed to require home environmental reviews before patients left the hospital. But Mr. Berger of Abiomed said company officials “did not do an enormous amount of preparation or preplanning,” in part because they did not really expect the first patients to go home.

Also at issue was who would pay for Mr. Quinn’s home nursing care. But, Mr. Berger said, the financial agreement between Abiomed and Hahnemann did not address who should pay — an omission that Dr. Zink said infuriated her.

By August, Abiomed had agreed to absorb the cost “for a certain period of time,” Mr. Berger said. Ms. Holmes was trying to train new help. Mr. Quinn began making occasional visits home, which lifted his spirits greatly. On Aug. 15, he sat in his living room, on the new couches Dr. Samuels had brought, and nibbled on a cheese steak sandwich prepared by his wife.

“I want to come home and stay home, come home and be with my grandchildren, with my wife,” he said. “They say there’s possibilities, that the pump works so good, I could maybe live another 20 years if the rest of my body holds up.”

Eight days later, Mr. Quinn suffered a massive stroke. Two days after that, he was declared brain dead.

The Aftermath: Lingering Anger Over Suffering

Butch Quinn’s funeral took place just after Labor Day in the brick-and-stone church he and his wife had attended for years. Dr. Samuels and Ms. Holmes were there; although the surgeon wanted to deliver a eulogy, Irene Quinn politely turned him down. A military honor guard played taps, and presented Mrs. Quinn with the flag draped over her husband’s coffin. The minister praised Mr. Quinn’s faith. The altar was decorated with huge sprays of flowers from Hahnemann and Abiomed. Yet in nearly two hours of song and prayer, the words “artificial heart” were never spoken.

Mr. Berger said Abiomed was grateful to Mr. Quinn, who helped demonstrate the heart’s reliability. He said the company hoped to enroll eight more patients in the artificial heart trial by the end of this year and intended to ask the F.D.A. to permit “limited commercial distribution” of the heart in 2004.

“You can say, `Look what we achieved, it’s positive,’ ” Mr. Berger said. “That is something you feel very good about. On the other hand, we want our patients to do well, and to feel that they are doing well.” In that regard, he said, Mr. Quinn’s story “is distressing.”

Dr. Samuels is not certain whether he will have another artificial heart patient. On the day he ordered Mr. Quinn’s heart stopped, he said, he tried to focus on their good times — the Thanksgiving turkey dinner, the grandson who ran onstage for a hug. “All I could think,” the surgeon said, “was that at least I had a chance to see him at home, to interact with his grandchildren and family.”

Irene Quinn remains angry. Of her husband, she said, “He would have been better off dead. He wouldn’t have suffered.”

See, full article: October 8, 2002. On Medicine’s Frontier: The Last Journey of James Quinn By SHERYL GAY STOLBERG http://www.nytimes.com/2002/10/08/health/anatomy/08HEAR.html?pagewanted=print&position=top