Chapter 16 : Allocation of Resources: Scarcity and Triage

Section 5. Case Study

 

Transplant Turmoil

By Ridgely Ochs
Staff Writer

First of a series

Dr. Lewis Teperman called for someone to "kill the music for a minute."

The Billy Joel tune came to a halt, and Teperman leaned over the yawning chest of the patient on the surgical table. Suddenly he stood up, and in his cupped hands was a section of human liver. Moments ago it had belonged to 21-year-old Jessica Whelan.

He stepped back off his stool, turned and walked rapidly, hunched over, some blood dripping to the operating room floor. He reached a small table and placed the precious brown blob into a steel basin filled with heparin, an anticoagulant produced in the liver, and preserving solutions.

In less than an hour, having bathed the organ -- actually the right lobe of Jessica's liver -- and located and cleansed all the bile ducts and vessels, he covered the basin in a baby blue cloth and carried it like a casserole to the operating room across the hall.

"It looks beautiful," he announced to the expectant blue-gowned team of surgeons and nurses, each of whom looked up from their patient on the table. "It went perfectly. No surprises."

These are among the most dramatic moments in one of what is undoubtedly the most dramatic and technically demanding surgeries in medicine: a live donor liver transplant. In what an observer called "a slow ballet," one surgical team from New York University Medical Center had begun more than six hours earlier, on a hot, humid day in July, to cut out about 60 percent of the liver from Jessica, a healthy college student who lives in Levittown. It was then placed inside her 46-year-old father, Kenneth, of North Babylon, whose own diseased liver, if not removed, would eventually kill him.

Another five hours of surgery remained as the second team began the exacting, tedious job of cutting out the diseased organ and connecting all major ducts and vessels to the new liver. If all went well -- and that was not an inconsiderable "if" -- within weeks both patients would have fully regrown livers (the liver is the only internal organ that regenerates) and be on their way to resuming their normal lives.

This would end a process for Jessica and Ken that had begun the previous summer and included innumerable meetings with doctors, nurses and social workers, countless tests and much soul-searching.

For one of the questions raised since the death of liver donors Michael Hurewitz in January at Mount Sinai Hospital and Danny Lee Boone at University of North Carolina Hospitals at Chapel Hill in July 1999, is whether a healthy person desperate to save the life of a loved one can truly understand the risks of an operation like this. Prompted by such profound altruism, can there be true informed consent?

Indeed, there is no consensus in the transplant field on how to ensure that donors truly understand what they are doing, no clear guidelines on which donors are the best candidates, no long-term data on how their health is affected by such a surgery, no oversight on which centers are qualified to perform transplants and no agreement among surgeons on how precisely the surgery should be done.

"There are an incredible number of unanswered questions," said Dr. Mitchell Shiffman, director of the transplantation center at Virginia Commonwealth University Medical System in Richmond. "That does not mean you should not go forward. It does mean we have to look critically."

Last year, 408 live adult-to-adult liver transplants were performed, according to the United Network for Organ Sharing, a nonprofit organ procurement group. And that number is likely to rise precipitously within the next few years. Right now 17,491 critically ill Americans are waiting for a liver, yet last year the traditional source -- cadavers -- met only a little more than a quarter of that number. With nearly 3 million infected with the chronic form of hepatitis C -- a disease that destroys the liver -- the waiting list is expected to triple within the next decade.

NYU is the only one of the 120 transplant units across the country that perform live donor transplants to assign a social worker to both the donor and recipient to ensure that everyone understands the risks, that no one is feeling unduly pressured, Teperman said.

"I think it has doubled the work but it has been a very important safeguard and we've learned from it," said Teperman, head of NYU's liver transplant unit. He performs about three live liver transplants a month, along with about seven or eight transplants using organs donated from cadavers. He estimated that, all told, at least 50 people are involved at one point or another with each $200,000-plus transplant.

In this one, each player seemed larger than life. Jessica, a top student who has been on the dean's list for three semesters at Molloy College, where she has a softball scholarship and is studying to be a teacher, appeared unwavering in her determination to help her father, despite her fear of needles and blood.

And even before his liver disease began to take its toll, her father, a building supervisor in a Nassau County school district, had endured enough life-threatening conditions -- from a nearly severed leg when he was 7 that required multiple operations, to a recent bout of meningitis that put him in a coma -- for several people. In fact, it was blood transfusions during the many leg surgeries that were the source of the hepatitis C that was destroying his liver.

(Since 1992, a test has screened blood for the virus.)

Like Jessica, he exuded a deep determination and strength -- as well as a father's guilt and profound anxiety that his need was going to result in harm to his daughter.

Initially, he said, he turned down Jessica's offer to be a donor, instead turning to his wife, Susan, who had also volunteered. But the vein structure of Susan's liver turned out to be potentially incompatible with Ken's system. Jessica met the two main requirements -- her blood type was compatible and her size (5-foot-4 and 116 pounds) was close enough to her father's (5-foot-8 and 185 pounds).

Other tests showed that her liver was healthy and had a suitable structure. And so Ken, facing the clear prospect of liver cancer, reluctantly allowed Jessica to be the donor.

In the weeks before the operation, Ken had asked his daughter over and over if she was sure she wanted to go through with it. Over and over he said, "No parent wants to do harm to their children. This is very, very upsetting." Over and over he said: "I just want everyone to know what a hero she is."

Those two weren't the only ones to loom large. Teperman and the 21 other surgeons, nurses, anesthesiologists and pump technicians stood hour after hour, many without a break -- a tableau of unwavering focus. Teperman headed the team working on Jessica; Dr. Thomas Diflo led Ken's team. Their work, as they hovered elbow to elbow over their blue-swathed patients in the small operating rooms lined with machines, appeared seamless.

And yet, these very heroic qualities are emerging in a setting that lacks two critical elements: long-term data on patient survival and standard oversight.

Those voids have prompted questions about whether this is an operation that can -- or should -- be practiced widely.

"Those are things we are struggling with," said Dr. Nancy Ascher, head of a Health and Human Services advisory panel on transplantation, which is expected to make recommendations on these issues to HHS Secretary Tommy Thompson in the fall. "I did not get the impression the secretary did not want progress in this field, but he desperately wants it done safely."

The fear that donors, driven by their desire to save a loved one, won't understand what they're undertaking is of particular concern to many experts.

Mary Ellen Olbrisch, a clinical psychologist in the transplant center at Virginia Commonwealth University in Richmond, said it's important to go over the informed consent form -- the document the hospital has drawn up that outlines the risks -- three or four times with a prospective donor, "even if they don't want to know."

Dr. Mark Fox, who chairs the ethics committee for UNOS, the organ-sharing network, and also is the director of the program in transplant ethics and policy at the University of Rochester, said it takes somebody committed to making sure the patient is fully informed, someone who says: " 'I have to go the extra mile to try as best as I can to get this person to reflect back to me what these concerns are.'"

As Teperman, a smiling, high-energy man who appears to care deeply for his patients, said more than once: "I know the minute that I take one thing for granted, when I relax at all, that's when we're going to have problems."

The story of this daughter-to-father transplant begins the evening before the surgery:

6 p.m. Wednesday:

Jessica appears in the waiting room outside her hospital room, her eyes rimmed in red. She admits to crying after an IV needle was placed in her arm. "I just hate needles," she says. Asked how she's feeling, she says, "I'm, like, all right. I'm a little more nervous."

Teperman stops in and tells her -- as he has many times before -- that he expects her to coach his 10-year-old son in softball when the operation's over.

It's an old joke between them, and she smiles a little.

On the next hall, her father lies in bed, preparing to have a catheter inserted through his neck and run into his heart to monitor its function. He too loves to tease and is giving the nurse a good-natured hard time, but he's a little groggy and his words are slurring slightly. He admits he didn't sleep well the night before. "I just want to get it over with," he says.

7:30 a.m. Thursday:

Jessica is wheeled to a hallway outside the OR. It's lined with so much equipment her gurney appears almost lost.

Once more she is asked to review what is called the informed consent, this time with the co-chief of cardiothoracic and transplant anesthesia, Dr. Marc Kanchuger. It's his job this last time to make sure she understands what she is doing and the risks of the operation -- even though Jessica has been through this process a half-dozen times over the past months with Teperman and her social worker. Kanchuger is in charge not only of putting Jessica to sleep but also of keeping her alive during the next 12 hours.

"What are we doing here today?" he asks.

"We're going to have a transplant," she replies calmly.

"No, what are we really doing?" Kanchuger says. Jessica looks a little blank and says nothing. He then reviews the possible things that can happen to her -- including death -- during the operation.

"This is a big procedure. You are doing a big thing for your father. But it's not a walk in the park," Kanchuger says. "I promise I'll take good care of you.

One of us is with you all of the time and I'm in charge." He adds: "You're pretty brave. I've got to give you credit."

8 a.m.: Jessica is wheeled into the OR, the nurses drape and prep her and Kanchuger begins administering anesthesia.

9:07: The first incision is made. Called the "Mercedes cut" because it resembles the emblem on the car, it entails cutting horizontally across her entire chest under the breast and then vertically down her stomach to a couple inches above the belly button.

Smoke rises and there is the smell of burning flesh as Teperman uses a cauterizing knife called a Bovie that both cuts and cauterizes flesh and abdominal muscle, thus minimizing blood loss.

9:18: The liver, the largest internal organ and the one that performs the most functions, is exposed. Jessica's chest is held wide open with a metal clamp called a retractor. The first thing Teperman does is to identify, divide and tie off the blood vessels on the far side of the liver. The smaller vessels, of which there are hundreds, can be cauterized or clipped, but each of the half-dozen bigger ones must be sewn. Every time he begins to cut, the knife beeps.

9:41: The choice of music has been a problem. Softish rock has been playing, and a voice asks for "something a little funkier." A nurse puts on a Ricky Martin CD and, as if in unison, the eyes visible over surgical masks register distaste. Teperman remarks that the music selection is not his fault: Someone has taken his CDs.

10:51: No music is playing as an X-ray machine that resembles a large beauty parlor hair dryer is wheeled in to take pictures of Jessica's liver and bile ducts "to make sure there are no surprises," Teperman says. Even though she had undergone an MRI scan, sometimes undetected anatomical anomalies or problems don't become obvious until the person is on the operating table.

11:07: "There are no surprises," Teperman announces. "Everything is as expected. You can send for the recipient." This means Ken will soon be wheeled into the other OR, and the other team will start to scrub in. The music resumes with a CD of Billy Joel's hits.

11:27: One nurse hands Jessica's gallbladder, about the size of a baby's fist, to another, who puts it in a small bottle of solution. The organ, which lies just below the right lobe of the liver and stores bile, is taken out forever because, Teperman says, with the right lobe about to be gone there is no place for it anymore. The body can function fine without it.

12:09 p.m.: "All right, the structures are divided," Teperman announces. This means that all the major vessels and ducts of the right lobe have been separated from the left lobe and preserved, and the actual severing of the right lobe can begin.

12:27: Ken's gurney arrives outside his OR. "How's Jess making out?" he asks. Teperman comes out to reassure him she's fine and to say, "You're in great hands."

12:28: Back in the OR, Teperman begins cutting through the liver. He uses an ultrasound knife called a Cusa that cuts easily through liver tissue but stops at blood vessels, each of which has to be sewn, clipped or cauterized. The knife makes a low buzzing sound not unlike someone cutting a hedge.

2:25: The liver is cut completely in two.

3:22: Teperman carries the liver lobe from his OR to Diflo's.

3:26: Teperman has washed up and, putting on a white coat, goes to talk to Jessica's mother, Anna Moses, and her stepfather, Jerry, who have been waiting in a small room on another floor. He tells them that the operation went "as we expected" and that she should be out of the OR in about an hour and a quarter. "You have a great, great daughter. I am continually impressed with the human spirit and she has a great one," he tells them. Sitting side by side in the otherwise empty room, they both smile and Anna asks Teperman to sign the teddy bear they have bought for Jessica.

She seems eager to talk and tells two stories about Jessica's altruism. In one, Jessica was bumped by a car when she got out of her car to help a blind lady in a wheelchair off the side of Hempstead Turnpike. In another, Jessica was waiting at a left-turning light when she noticed that cars were going around a stalled vehicle. She got out of her car and saw that the driver had collapsed on the steering wheel. She called 911, then went to the hospital to check on the driver, who had had a heart attack. "She has too big of a heart," her mother said.

4:36: Jessica's chest is sewn up and a drain inserted to take care of blood and excess fluid the body produces after such a trauma. She'll then be taken into intensive care, where she will stay for the next three days.

4:45: "How are you doing?" Teperman asks as he walks into the other OR, which is booming with the Rolling Stones. "We're just about to take it out," Diflo says of Ken's liver. Teperman joins Diflo's team at the surgical table and, within minutes, the liver is out and unceremoniously set aside in an empty metal tray at the foot of the table. Unlike Jessica's liver, which is smooth, soft and a deep rich brown, Ken's is a pale gray-brown, stiff, hard, bumpy and shrunken looking.

4:58: Diflo takes Jessica's liver from the bowl and begins the complex, tedious task of sewing it to Ken's blood vessels and bile ducts.

5:35: "It's in," Diflo announces, as the new liver's veins are connected to Ken's, allowing the blood to flow through it. The hepatic artery and bile ducts still have to be connected, any bleeding has to be stanched and abdominal drains have to be put in place. In about three more hours, Ken will be wheeled into intensive care, where he will stay for the next five days.

Jessica left the hospital a week after her operation. She experienced post-op stiffness and pain that were pretty grueling, and at first she had a hard time following orders to get out of bed and start walking.

But once she did, she began to regain strength and the pain began to ease. After 10 days, she was still experiencing pain at night and was getting up every 45 minutes to walk around. She was also looking forward to getting rid of the drain in her abdomen.

But she said she had no regrets: "I'm absolutely glad I did it. Now I know I did everything I could for my father. I'm glad it's over with."

A month later, she was back to college and driving her new car. Her prognosis for the long term? "She should be playing as good a game of ball as ever," Teperman said.

Ken, remarkably, was out of the hospital after 10 days, and on his first day home was teasing and joking with a caller -- despite three tubes hanging from his abdomen, the constant monitoring of his temperature and blood pressure and figuring out the fistfuls of medications -- he was taking nine different medications three times a day -- prescribed to prevent infection or rejection.

He said he hadn't experienced as much post-op pain as Jessica had, crediting the high dose of steroids he was given. And he said he was up and walking 21/2 days after the operation -- even before Jessica.

The hardest time was seeing his daughter in pain. "Looking at her made me die a thousand deaths," he said. "I thought I would gladly die."

In fact, he did have an unanticipated side effect. A week after his operation, a heart monitor picked up two bouts of tachycardia, abnormal heartbeats, which Teperman said were possibly due to the medications. Ken said he felt neither episode but, to ensure his heart was still healthy, he underwent a cardiac catheterization, in which a tube is inserted in the arteries to see if there is a blockage. His arteries were clean, he said, and he believes he'll be able to stop the heart medication that he was given after the tachycardia episodes.

Eventually, Teperman said, he hopes Ken will take only one drug to prevent rejection of the liver -- which costs between $5,000 and $10,000 a year. But for now, much of his time is spent taking pills at precise intervals throughout the day.

"In the scope of things, if that's the biggest price I have to pay, well ... " And he immediately added: "My biggest happiness and relief is that Jess's up and around and almost back to normal."

Copyright 2002, Newsday, Inc.


 

Widow Fights for Oversight of Surgeries

By Ridgely Ochs
Staff Writer
 

Vickie Hurewitz has tried to forge a life for herself and bring meaning to the death of her husband, Michael, by campaigning for governmental oversight of live donor transplants.

Michael, 57, died Jan. 13 at Mount Sinai Hospital after he donated a section of liver to his brother, Adam, 54, of Setauket, chief of pulmonary and critical care medicine at Winthrop-University Hospital in Mineola.

Since then, Vickie Hurewitz has moved from upstate Schuylerville to a log cabin on 10 acres outside of Albany and is buying a horse, a young Belgian Freisian mare -- coincidentally, she and Rhonda Boone of Burnsville, N.C., whose husband, Danny, died in 1999 after he was a liver donor, both live in log cabins, drive pickup trucks and own and ride horses. They have also become friends.

Hurewitz said she has been working to set up the Mike Hurewitz Living Organ Donation Project. The project, affiliated with a state consumer advocate group called the Senior Action Council, will be an "effort to get living organs regulated," she said. "We have to do something. It's too unspeakable." Hurewitz, who works as a consultant for a nonprofit group that serves low-income New Yorkers, said she favors halting all live donor transplants and supports a policy of "presumed consent," in which organs from brain-dead people would be available unless the person had specifically stated otherwise.

"But I have been told there's no political will for this," she said, "so I'm asking for a moratorium [on live donor liver transplants] until we have regulations."

She plans to attend Tuesday's meeting of the state Committee on Quality Improvement in Living Liver Donation, appointed by Health Commissioner Antonia Novello in March. The panel is expected to propose improvements to the donor's informed consent process, and the standards of care and post-operative care. (In addition to Mount Sinai, New York University Medical Center, New York Presbyterian Hospital, Westchester Medical Center and University of Rochester Medical Center also perform live-donor liver transplants.)

The Health Department's March report on Hurewitz's death depicted a transplant unit too understaffed and too slow to react to his worsening condition. Novello said the care was "fragmented at best" and "shocking," fined the hospital $48,000 and imposed a six-month moratorium on such liver transplants at the hospital.

The state is also investigating 123 cases alleging poor care at Mount Sinai that were filed after Hurewitz's death. Health Department spokesman Rob Kenny said many have been completed. "However, the decision on what should be released and when still hasn't been made," he said, adding that each complainant would receive a personal letter. Eighty-two of the cases involve the liver transplant unit.

Six involve donor care; the rest pertain to liver transplant recipients or those awaiting livers.

Kenny said "nothing has been decided" on whether the state will allow Mount Sinai to resume performing adult-to-adult live liver transplants on Sept. 12, the end of the six-month moratorium.

Copyright 2002, Newsday, Inc.

 

 

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Copyright Philip A. Pecorino 2002. All Rights reserved.

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