Artificial Heart : Furor Blurs Horizon for Dr. DeVries

Dr. William C. DeVries remembers a time when his life was simpler. He knew what he had to do and believed that he knew why. People were dying and he thought he could help. So he sliced out a man’s diseased heart and put in an artificial one.

The operation on Barney Clark made medical history. In the universe of heart surgery, surgeon DeVries had walked on the face of the moon. He had replaced a human heart with a mechanical one--with no plans of going back. As the world watched in amazement, he did three more.

But his experiment--first at the University of Utah, then here at Humana Heart Institute--has stirred up a terrible furor: Is a permanent artificial heart possible, is it desirable, is it right? Now with all four patients dead, many physicians want the program stopped.

Unexpected Result

DeVries may have anticipated that his patients would die, but he never expected the clamor that enveloped even their lives. What began for DeVries as simply another step in a life of scientific research has become, to his surprise, a sticky debate over ethics, economics and institutional politics.

“I think it’s probably affected every single thing in my life,” he said recently, in interviews with The Times. “I’m a lot less naive, a lot more cynical about life. . . . I always thought things were black and white. And I find out that everything’s gray.”

The last four years have burned 10 off his life, DeVries figures. At 43, his blond hair is graying and his gaunt wedge of a face is creased. He stands arms crossed, head down, his 6-foot, 5-inch frame sloping like a long parenthesis.

“I grew up in a very rigid type of idealistic community, you know, that believed that things were right and things were wrong,” he said. Now, he said, he has learned about imperfect choices--”lesser of bad, better of good.”

Some of the more unsettling choices have stemmed from the government’s recent decision to pare down DeVries’ initial authorization for seven implants. From here on, it is judging his experiment one case at a time. It could halt the program at any time.

The ‘Next’ Patient

That places a terrible premium on the next patient. As DeVries puts it, he needs a patient who is sick, but not too sick. He needs a patient who will give the heart the best possible chance at success. So, he finds himself rejecting applicants he once would have accepted.

“You end up asking yourself if the societal interest of the experimentation outweighs the individual interest of any patient,” he confided uncomfortably, stabbing at a bowl of green speckled pasta in a small restaurant in suburban Louisville.

“And let me tell you, that’s a very bad decision to make. You know, it really is. It’s horrible to have to go in and look at a patient and know that he’s going to die. And you can keep him alive, but you can’t, because of this.”

Had that happened?

DeVries nodded. “Oh yes.”

Asked how many times, he said simply, “There’s been quite a few.”

What did he tell them--that he didn’t want to jeopardize the experiment?

“No. That’s not very humanitarian,” he said dryly. “. . . You don’t want to tell them, ‘I’m not going to do it because I’m scared it will ruin the project.’ You don’t say that.”

These days, DeVries is a central figure in the Humana Heart Institute, run by one of the most profitable private health-care chains in the world. His work has brought him extraordinary prestige--and Humana Corp.’s promise to foot the bill for 100 artificial heart implants.

Teams from across the country come to him for training. Nationally recognized specialists fly in to advise him on the heart. The windowsill of his small, spare office is cluttered with drafts of 10 long-awaited scientific papers on his last three cases.

He has dined at the White House with a Saudi king. He has met Steven Spielberg and James Michener. A soft-spoken surgeon from a small town in Utah, he has flown across the world. He has kept Barbara Walters waiting.

Comes at High Cost

But the flip side of his publicity has been a complete loss of privacy.

For two years, while his patients lived, his beeper accompanied him to the shower. He has signed more McDonald’s cups while waiting for Chicken McNuggets than he cares to remember. Demands on his time are insistent; time alone is rare.

To spend time with his wife and seven children, the family often has to leave town. They go white-water rafting, something he could not do while the patients were alive. At conferences, he finds himself mobbed at the door, regardless of the quality of what he has said.

“It tends to make you more of a showboat,” he said, remarking that the medical profession does not look kindly on “TV doctors.”

“It hasn’t made me more ostentatious. It’s made me feel worse about it.”

Now 20 months have rolled past since he did his last implant, the case of Jack Burcham, whose chest proved too small for the artificial heart. Last summer, his two remaining patients died: Murray Haydon, 488 days; William Schroeder, 620.

Arguments of Critics

Medical ethicists are arguing that his experiment should stop. They say the device is too crude, the quality of life for recipients too poor, the expense too great. They point to the frequency of blood clots, bleeding, infections, strokes. The thing, they say, should go back to the lab.

“The technology just is not there,” insisted Dr. Norman Shumway, heart transplant magnate at Stanford University Medical Center. “To get a real artificial heart . . . you’d need a power source that’s implantable, that’s inexhaustible, that’s non-heat-producing. And there just ain’t such a thing.”

Meanwhile, many concede that the artificial heart is useful as a temporary bridge to keep a patient alive until a human heart becomes available for transplant. But they insist that it is not ready for permanent use. DeVries is alone in advocating the permanent artificial heart.

“You know, there’s a thin line between dedication and fanaticism,” said Shumway, rising to the occasion reporters regularly create for him to take aim at DeVries.

“You don’t know where he’s going: Over the cliff?” said DeVries’ mother, Cathryn Nuttall, back home in Utah. She fears that he has become a scapegoat, wishes that he would lay off. “I feel this way: He has been a pioneer. And you pay a price when you’re a pioneer.”

Even the woman behind the Avis counter at the Louisville airport volunteers the jaded view of the newly disabused: “Well, people used to think he was God. Now it’s clear he’s just another human with a new technique.”

Hearing in Washington

Late last year, the U.S. Food and Drug Administration summoned DeVries to Washington for a hearing on whether he should be allowed to continue his work on the artificial heart. The panel questioned him for seven hours. He is certain they were on the verge of shutting the experiment down.

Eventually, the agency ruled that he could go on. But it imposed new strictures, requiring DeVries to make quarterly, rather than annual, reports. And instead of letting him proceed with the remainder of his seven cases, it intends now to assess each case, one at a time.

Even DeVries concedes that there have been times of self-doubt.

“When the heroes of American surgery get up and say, ‘This is ridiculous, it’ll never work,’ pretty soon you feel, ‘What am I, some kind of Cyclops?’ ” he said. “I remember many times thinking, am I really unusual or weird?”

He went on, “You’re facing battle on all grounds: Well, I’m putting this heart in, I own stock in Symbion (the Utah company that makes the artificial heart). Are you financially gaining from this? . . . Are you getting something substantial, or are you just enhancing your reputation?

“You have to decide. . . . What is life and death? Do I believe in God? Does it really matter whether God wants me to do this or not?”

Not Ready to Quit

But DeVries insists that he has no thought of giving up. At 43, he has spent half his life working toward a mechanical heart for those patients for whom no human replacement can be found. He believes that he is right. Anyway, he can’t stop now.

Once, he said, he tried.

It was “after Barney Clark” (a turn of phrase, like anno Domini , that marks the year you start counting). It was spring of 1983 in Utah. The Seattle dentist had died after 112 tumultuous days. It had taken 18 months to win federal and University of Utah approval for the operations, and DeVries was not eager to restart the process.

He said he took a week off to rest, then went back to conventional heart surgery. He put the artificial heart aside, believing that someone else might take it up. He waited a while. Nothing happened.

Suddenly, DeVries said, he felt that he was shirking a duty.

“I felt that I had an obligation, almost that I was built and put on this Earth to do something like this, and this was an obligation that I was neglecting,” he said.

“So then I picked it up and I said, you know, I’m not going to be happy unless I do this. And from that point on it became something that, you know, that you do. And you do it, and it works, and it’s wonderful when it’s successful and difficult when it isn’t. But it’s still going.”

DeVries is the product of driven stock. “Stubborn Dutchmen,” as his mother put it. His father emigrated from Holland at age 16, worked in a print shop to learn English, enrolled in high school at 20 and graduated at 24. Then he put himself through medical school.

But when the United States joined World War II, Henry DeVries signed up--as did all the men in his family at their father’s suggestion. He ended up shipping out the week his first child, William, was born. Six months later, he was killed when his destroyer was bombed in the South Pacific.

His widow returned to Utah, where she had met DeVries, and later married Don Nuttall, a heating and air-conditioning contractor and a fellow Mormon. Together, they raised seven more children in a little house in Ogden beside the foothills of the Wasatch Mountains.

Busy at Life’s Work

These days, one of their children supervises distribution of flour at the Pillsbury plant in Ogden. One repairs copiers, one works for the phone company. Two work in heating and air conditioning, one is in the Navy, one is writing the great American novel.

And one is in Kentucky, as his wife said, “trying to beat death.”

“I had a psychiatrist friend and I said, ‘What do you do with a kid who’s stubborn? Do you worry?’ ” remembered DeVries’ mother. “And he looked at me and said, ‘My dear, there’s a lot of difference between perseverance and determination, which are positive traits, and stubbornness, which is negative.’ And he says, ‘If you direct him in the right direction, then it’s a positive thing.’ ”

For some reason, DeVries knew early on that he would be a doctor. He had his father’s stethoscope, a childhood friend recalled, and they would listen to each other’s hearts. DeVries was extremely bright, remembered Richard Smuin. But “not an egghead, not a nerd.”

He might have been a very good basketball player. But he chose the high jump, and set about teaching himself in the stubbly field beside the house. In his senior year in high school, he became the Utah state champion. At the University of Utah, he jumped 6 feet, 9 1/2 inches, and set the school record.

Started a Tradition

“He was the one that started the tradition of having a guy dress up in kilts for the assembly,” said Chick Hislop, then track coach at Ben Lomond High School. “He went out in assembly with those long, skinny legs. . . . Looking back on it now, I think it just kind of reflected his confidence with himself. He knew what he was, so it didn’t bother him.”

DeVries’ upbringing was strictly Mormon. He attended meetings of the Mutual Improvement Assn. and he became an Eagle Scout in a Mormon troop. Good, homey values, his mother said. “Christian values, honesty, those things. Mormons are pretty rigid.”

But when he turned 18 and the time came to go on a two-year Mormon mission of proselytizing, DeVries begged off, pointing to a track scholarship and plans to study medicine. Those “socially redeeming” excuses enabled him to avoid any further explanation.

“I always thought that was like selling doughnuts door to door,” he said recently of missionary work. “If they really would have asked me, my answer was I didn’t believe in it. Fortunately, no one asked me about that.”

Years later, he kept a quotation on his wall. It was about how the man who follows the crowd gets no farther than the crowd. But the man who walks alone finds himself in places no one has ever been before.

“You have two choices in life,” it goes on. “You can dissolve into the mainstream or you may be distinct. To be distinct, you must be different. To be different you must strive to be what no one else but you can be.”

In Louisville, DeVries was driving through a light rain. Eyeing a swamped cemetery, he wondered aloud whether the corpses might surface. He was driving the white Mercedes he bought when he was forced to divest his Symbion stock when he joined Humana in 1984. The Mercedes succeeds a ’65 Mustang.

“I used to play in the volleyball league but I got too busy last year so I stopped that,” he said. “But I try to do something like that, competitively.”

Why, he was asked.

“Because I feel better after I do it.”

But why competitively ?

“Because I feel better after I do it.

“I tried to run a marathon once. There was this little guy beating me. I couldn’t stand it. So I decided I won’t let this guy beat me. I remember getting on his tail and just following him. I lost track of what was going on for about 16 miles in. I remember him getting real nervous and upset that I was trailing him so close. I just wanted to finish. I remember laying on the grass and just vomiting and saying to myself, ‘This can’t be good for my health. . . .’

“Karen and I used to make stained glass windows all the time,” he said, speaking of his wife. “My job was cutting the glass. She was the solderer. I had to give them away, because there’d always be a crack somewhere. And see, you’d know it. And if it was yours, you’d always go to that thing (the crack), instead of seeing how beautiful the window was. So, better to give it to someone. Like my mom or my sister or someone. They look at it for the beauty, and not that little imperfection.”

The way DeVries tells it, he slid into the artificial heart in the haphazard way others slide into, say, accounting: A calculating fraternity brother counseled him to hitch his wagon to a star, then he forgot his lunch and wandered through the right door.

It was his first year at the University of Utah medical school. You need a gimmick to get a good residency, the frat brother said, and you need someone to go to bat for you. Associate yourself with someone with an international reputation, he said. Flipping through a newspaper to a story about an arriving professor, he said, “What about this guy, Kolff?”

Later that week, DeVries recalled, he forgot his lunch. Unwilling to sponge off his friends, he was ambling through the halls. He saw a lot of people going into a conference room. There was a small sign: “Dr. Willem Kolff, history of the artificial kidney.”

Alliance in Science

That summer, DeVries went to work for the Dutch-born scientist, who had developed the first clinically useful artificial kidney out of an old bathtub and cellophane sausage casings in 1943. He’d put an artificial heart in a dog in 1957. DeVries became Kolff’s first employee at the new Division of Artificial Organs.

All through medical school, he worked in Kolff’s animal barns, where a collection of doctors, technicians and vets were tinkering with plastics and putting crude hearts in sheep. The sheep were going into shock and dying. Survival time was measured in hours.

In 1970, DeVries graduated at the top of his class and embarked on a nine-year surgical residency at Duke University in North Carolina. He was convinced that the heart would be in a human before he could return to Salt Lake City. But each time he visited, it hadn’t been done.

So in 1979, he came back.

“There comes a time when you have to take a chance, when you have to gamble, when you’ve got to risk everything,” said Ross Woolley, a professor and member of the university’s Institutional Review Board. “If you aren’t willing to risk everything, you’re in the wrong business. That’s the way new things are done.”

Reputation on the Line

“Bill DeVries was willing to stake his reputation on this,” said Dr. Don Olsen, the veterinarian who had developed many of the surgical techniques for putting the heart in animals. “Had the experiment been a total disaster, he would have had a reputation to live down for the rest of his life.”

No one appears to have had any idea how the artificial heart would turn their world upside down. Take Woolley: He figured the news story about the Barney Clark operation “might make it to the Nevada border. It could get all the way to Denver.”

But within hours of the operation on Dec. 2, 1982, the hospital had been taken over. There were banks of telephones, detachments of TV cameras, bundles of mikes. As doctors tell it, reporters stalked the halls, scrounging for scoops. Bribes were offered, they swear.

“It was a circus,” one professor said icily.

On the third day, Clark went back into surgery. Days 4 and 5: kidney failure. Day 6: two hours of seizures. On Day 13, a broken valve had to be replaced. Later there were kidney problems, lung problems, depression and nosebleeds that lasted days on end.

Last Steps to Death

Day 92 brought diarrhea and violent vomiting, then pneumonia. Days 109 through 111, progressive kidney failure. Day 111, progressive circulatory shock. The following day, Barney Clark died.

Clark’s death was attributed to multiple organ failure, which surgeons said had less to do with the heart than with Clark’s bad health. He turned out to have been far sicker than anyone had known in advance. In the end, they said, only the artificial heart was working.

In late 1984 and early 1985, DeVries did three more implants, this time in Louisville, where Humana Inc. had offered to subsidize the next 100. In the following months, it became apparent that the heart was causing severe problems of clotting, infections and strokes.

Initially, William Schroeder, 54, made remarkable progress: He drank beer, jawed with President Reagan and cruised around Louisville in a van. But a series of strokes damaged his memory, mobility and speech. For the first time, the heart was linked to neurological damage.

Murray Haydon, 59, was in better condition going in. But within a month, he suffered severe internal bleeding. He became dependent upon a respirator and had a mild stroke, no brain damage. But he spent most of the remainder of his life in intensive care.

Jack Burcham, 63, died just 10 days after his operation, in which DeVries had been forced to remove part of the sternum to fit the heart in his chest. There was massive bleeding and then kidney failure. He died, doctors said later, of undetected internal bleeding.

From the beginning, DeVries faced fierce critics.

In Salt Lake City, they surfaced first on the university’s Institutional Review Board, the group responsible for guarding patients’ rights in experimental cases. Led by a former associate of Kolff, their reservations held up the project for more than a year.

After Clark, there were a new set of questions, and after that, new delays. The process contributed to DeVries’ decision to leave for Louisville. He complained tersely that he did not like watching patients die while he waited for red tape.

Now medical ethicists and others have raised troubling questions about the patients’ quality of life, “informed consent” and whether the patients gave it. The debate has expanded steadily to encompass for-profit medicine, health care costs, right to die.

Life in Intensive Care

“I don’t think there’s anyone in the United States who thinks you’re doing people a favor by having them survive a year or more in an intensive care ward,” said Dr. George Annas, a professor of health law at Boston University.

“The whole procedure is suspect, in terms of its benefit,” said Dr. Walter Stevens, an associate dean of the University of Utah medical school. “That’s been born out by the fact that all the patients have died of clotting disorders, strokes, what have you.”

The most persistent scientific criticism has been that researchers building the heart have not found materials that are completely compatible with blood. So to prevent clotting, DeVries has had to use anti-clotting drugs and run the risk of uncontrolled bleeding.

“You’re essentially putting a hunk of metal/plastic in and exposing it to the blood supply,” said Dr. Sidney Wolfe, director of Public Citizen Health Research Group in Washington. “Not surprisingly, the blood supply doesn’t react positively.”

Meanwhile, other critics have argued that medical research cannot be done honestly in a for-profit institution like Humana, concerned with publicity and profits. Annas, for one, questions whether there can be “informed” consent when a patient is under the duress of imminent death. “People who are dying and are desperate will do almost anything their physician recommends,” he said.

Use as a ‘Bridge’

Finally, Dr. Denton Cooley, chief surgeon at the Texas Heart Institute, argues that the heart is “only appropriate for a bridge, as a stage towards cardiac transplantation.” He cited the history of infections and clots and “general body deterioration and discomfort.”

Critics find DeVries surprisingly willing to discuss the bigger issues. He has also consulted extensively with an advisory board convened by Humana. The group includes nationally recognized specialists in strokes, infections, lung and kidney problems and ethics.

But he questions the motives of the increasing number of surgeons who fault his program while using the heart as a bridge to a human heart transplant. He suspects that they would be working with the permanent artificial heart, too, if they could get the financial and institutional commitment that is required.

And when his patients die?

“If you say, ‘I’m going into medicine to fight death,’ you’re going to lose. Because your patients will all die, and they’ll die in spite of you and maybe they’ll die because of you. . . . You can say you’re able to give some human being some meaningful life, or something they didn’t have before.

“It’s a great feeling to be able to help someone like that. I don’t look at that as a failure--if you can advance something. It’s a failure if you take a person, make his life living hell. There are some things worse than death.”

But at least in some cases, hadn’t his patients’ lives been just that?

“All I can tell you is I’ve probably known more about the quality of life of Schroeder, Haydon, Burcham and Clark than anybody alive on Earth on this day. True, I’ve got a lot invested in it. But if I had the same thing happen to me, I wouldn’t hesitate to sign the consent form and have it done today.

“Haydon, for example, incredible guy. Quiet-type person. Used to sit on the front porch and just watch people. He’d have to sit up at night with his head between his legs in order to breathe. He couldn’t lay flat in bed. People say these guys were forced into doing this. Sure they are. But that’s the way it is. You make decisions when you can’t breathe that you might not make when you’re healthy.”

These days, DeVries arrives before dawn at Humana Hospital-Audubon, overlooking the park where John James Audubon once sketched birds. He does open heart surgeries, assists on transplants, sees patients. He spends every third or fourth night in the hospital on call.

Referrals for the artificial heart are down to one or two a week--down from 10 to 20 a week during the heyday of Schroeder’s early recovery. Five times recently, patients referred for artificial hearts turned out to be eligible for transplant and received a human heart.

In ways, the deck seems stacked against DeVries. His technique is experimental, so it can be used only as a last resort. His patients must be ineligible for accepted therapies such as transplantation--at a time when more and more patients are receiving transplants.

When DeVries moved to Louisville in 1984, there were 12 transplant programs nationwide. Now there are more than 80. Because of advances in drugs to prevent rejection, patients are being transplanted into their 60s, when 50 was the cutoff a few years ago.

So he is left with a pool of older, possibly sicker patients, at a time when more than ever he needs “a patient who is better equipped to do better.” He wants someone without Schroeder’s infections or Haydon’s respiratory problems, someone with better kidneys.

Will there be such a person, the ideal patient?

“There may or may not be,” DeVries said simply. “But you just wait it out and see.”