Our January pick for the PBS NewsHour-New York Times book club, “Now Read This,” is “Heart: A History” by cardiologist and author Sandeep Jauhar. Become a member of the book club by joining our Facebook group, or by signing up to our newsletter. Learn more about the book club here.
In “Heart: A History,” Sandeep Jauhar chronicles some of the startling ways we have come to better understand the heart. Doctors experimented on themselves. Desperate parents allowed their children to be the subjects of experiments. Countless animals were sacrificed.
“How should we view the actions of our medical forefathers from our vantage point today?” Jauhar asks. Many of the experiments surgeons performed in the 1950s brought us to our current understanding of the human heart, but “would not pass muster with any institutional review board today.”
In the annotated pages below, Jauhar explores more deeply the actions of C. Walton Lillehei, an American surgeon considered the father of open heart surgery and one the most innovative surgeons of the 20th century.
Pages 80-81 from “Heart: A History”
Cardiologists in Minneapolis admitted Gregory to the Variety Club Heart Hospital at the University of Minnesota. After performing tests to confirm the presence of the VSD, they arranged for a consultation with Lillehei. They had heard about the innovative research he was doing in the attic of Millard Hall. Perhaps this maverick would be the one to finally fix the dreaded VSD and prevent another baby’s death. After meeting Gregory, Lillehei proposed an operation in which he would fix the boy’s VSD using cross-circulation, with Lyman Glidden, who had his son’s blood type, serving as the donor. Lillehei made it clear to the Gliddens that he had used cross-circulation only on dogs, but he told them that if a child of his needed open-heart surgery, he would not hesitate to use the technique. Desperate, the Gliddens gave the go-ahead. The consent form they signed in March 1954 was a single sentence: “I, the undersigned, hereby grant permission for an operation or any procedure the University staff deems necessary upon my son.”
Today, patient autonomy and shared decision making are mantras in the hospital, ethical imperatives that supersede all others, including beneficence. But the situation was very different in the 1950s, when doctors were more apt to act without what we would consider informed consent. Medical paternalism was rampant, but it would be a mistake to think of Lillehei as authoritarian. By all accounts, he was an unusually compassionate physician, having been a patient himself. As a patient, he knew the vulnerability that comes with illness. He knew on a visceral level how patients look to their doctors for guidance and protection. But as a surgeon, he also understood that his young patients had no chance for a normal life and that there were no other procedures available to help them. Desperate parents did not want to hear that there were no options. They wanted a doctor to do—try—something.
As a father, I can only imagine the Gliddens’ agony. I can see them racing across the flat Minnesota landscape that winter, sick child in tow, the white dashes on the straight road extending like a zipper to the horizon. They were still mourning their daughter and were desperate to avoid another young death in their family. Their hearts were full of fear—the worst kind, of love about to be snatched away—but courage, too: the courage to go first, to offer up their little boy for a chance, however small, at a normal life, and perhaps for the sake of science as well.
Lillehei’s experiments are a painful reminder that innovation and expertise in medicine are earned on patients, and unfortunately there is always a learning curve. How to protect patients while doctors learn is a conundrum still faced in all areas of medicine. For example, in the early 1990s, a hospital in Bristol, England, introduced an innovative operation to correct a congenital heart abnormality in babies called transposition of the great arteries. Before this, newborns with this condition were treated with a palliative procedure that had poor long-term outcomes. Children at the hospital ultimately benefited from the innovation, but a heavy price was paid. The death rate for babies in the first few years after doctors started doing the operation was many times higher than with the palliative procedure. Commenting on the poor outcomes, a pediatric surgeon wrote that it was understood “there would initially be a period of disappointing results.”
Observers were aghast, however, calling for a moratorium on the procedure. They argued that surgeons with children’s lives in their hands should not take on more than they could handle. How then, surgeons responded, do we innovate? For a new technology, there is no opportunity for rehearsal. For an innovation to benefit patients, there has to be a first time.
There seems to have been no hand-wringing on Lillehei’s part, no soul-searching about how to protect babies and children while he learned on them. The kids, Lillehei knew, were doomed anyway, justifying the risks. But he underestimated the backlash.