How Death Becomes Life
Page 28
Charlie Miller, the director of liver transplantation at the Cleveland Clinic, is widely regarded as an incredibly gifted surgeon who makes the hardest cases look easy. Still, everyone in the field knows that as the head of liver transplantation at Mount Sinai in New York City back in the early 2000s, he had a donor death. A young man was donating a portion of his liver to his brother. The surgery itself went fine, but a few days later, the donor died. Numerous errors were documented in the newspapers and tabloids, citing “woefully inadequate” care. While Sinai took a big hit in the unforgiving New York press, Miller himself got eviscerated. Amid the various investigations, he ended up stepping down from his role at Sinai and disappeared from view for a couple of years. Eventually, he turned up at the Cleveland Clinic, and revived his career and his standing—as is perhaps best exemplified by his becoming the president of our transplant society in 2015. He continues to be involved in living donations.
In one of the most meaningful talks I have heard as a transplant surgeon, Miller documented his experiences at Mount Sinai—who he was before the death, how filled with confidence he was, how sure he was that he would never have a donor die on him. Sure, he knew the data. But he was so good, he thought, that those numbers didn’t apply to him. When it happened, of course he was devastated. But at the same time, it seemed like a freak thing—the donor had gotten a rare infection in his stomach, likely related to some food he ate, maybe related to the surgery. It didn’t feel like a surgical death: the donor didn’t bleed out on the table or lose his liver function because Miller had tied off a vessel.
Miller was unprepared for what happened next. According to a New York Times article that came out after he was hired at Cleveland, “Almost instantly, it seemed, he went from the top of his profession to being ‘almost nothing,’ he said, as if his entire career had been erased.” He went to Japan for nine months, and then ended up in Modena, Italy, “at the invitation of a friend and colleague who knew that a fellow surgeon needed to be in the operating room.” As Miller talked about rebuilding his life, his confidence, his career, he also described the despair he felt at the time. He was fifty-one, and faced with the prospect of losing a career that he had put so much of his life into. He was unsure that he would ever be able to work in the United States again. Perhaps more important, he was being so disparaged in the press and felt so destroyed personally that he thought he might lose his family, too. Those were truly dark days.
“Italy was a lifeline, ” though, he said. It was there that he focused on how he might make the living-donor liver operation even safer, by learning a technique to take less liver from the donor (using the smaller left lobe, rather than the larger right lobe, which had traditionally been transplanted). Will another donor death occur? Absolutely. This is just how statistics work. But shifting the risk he can control away from the donor has been therapeutic for Miller. He has regained his confidence, his love for surgery. He performs surgery more safely now than he did before, and he does a better job when obtaining donor consent, making it as clear to them as it is to him that they can die.
Miller stresses the importance of being prepared, having protocols and support in place, and making sure the donors and recipients know what they’re getting into. Even after his infamous donor loss, this eminent surgeon is as supportive of living donation as he ever was—maybe even more so.
I have thought about this topic every day for the last decade. I have considered how Starzl and Calne and many of the other pioneers were opposed to living donations, and I have thought a lot about whether I would let my wife or my kids donate an organ to me. While I think living donation is one of the most wonderful things someone can do, we need to be extremely careful to avoid coercion. Do the people involved truly understand why they want to donate? What do they imagine the experience will be like? Do they know what the risks are? How will they feel if it doesn’t play out the way they expect?
I believe in living donation, and I see the donors as heroes. I celebrate them in the same way I would celebrate someone who ran into a burning building to save a loved one. My role is to help them run into that building as safely as possible. But it is never without risk.
HERE IS AN uplifting story that I always think about when I think about living donation. Torril is one of the most memorable and charismatic patients I have ever taken care of, and to this day I’m proud to have been able to play a small role in her life.
Torril’s mother needed a kidney transplant. I initially evaluated Torril’s father, who seemed healthy. Then, on his CT scan for his workup, we identified a large retroperitoneal sarcoma, a big cancer in the soft tissue surrounding his kidney. He ultimately had this removed, but it ruled him out for donation. In the end, Torril donated her kidney. She likes to say that the process saved two lives: her mom’s because she got the kidney, and her dad’s because the donor testing serendipitously revealed his undiagnosed cancer.
This story doesn’t have a totally happy ending. About a year after the transplant, Torril’s mom developed a blood cancer that was likely related to the immunosuppressive medicines she was taking to prevent rejection. She ultimately died from this cancer, which of course was tragic.
Torril and her husband run an organic farm, and during the year after the transplant Torril’s parents lived on the farm and helped run it with them. Having this additional year with her mom, who was healthy and active, was worth it for Torril. In a speech she delivered in memory of her mother, who was cremated upon her death, Torril talked about how in her mother’s ashes was a piece of her, too, mixed in for eternity.
Part VI
Today and Beyond
Everyone here has the sense that right now is one of those moments when we are influencing the future.
— STEVE JOBS
16
Complications
No matter what measures are taken, doctors will sometimes falter, and it isn’t reasonable to ask that we achieve perfection. What is reasonable is to ask that we never cease to aim for it.
— ATUL GAWANDE, COMPLICATIONS: A SURGEON’S NOTES ON AN IMPERFECT SCIENCE
No book about surgery, particularly one about a field as complex as transplant, would be complete without a chapter on complications. As strong as we surgeons are supposed to act in surgery, we all have to figure out how to deal with complications. Managing them medically is the easy part. The challenge is how to handle them emotionally. Complications sit on your shoulders like a heavy weight, sucking the joy out of your life. And to add to the misery, every day, we have to visit patients who are struggling because of errors we made. Many of them are living in despair, unable to eat, sometimes even with stool pouring out of their bellies.
I will never forget the time one of my mentors in residency, a world-famous thoracic surgeon, had a string of complications during several esophagectomies. He had performed literally thousands of them, but for some reason, three in a row leaked, forcing him to divide esophaguses and bring “blowholes” out in the neck (called spit fistulas). I remember him turning to me and saying, “I am creating fucking monsters.”
Some complications are of the kind that sit with you day and night—for example, the pancreatic leak after a kidney transplant I did. To this day I don’t know how that happened. Whatever the reason, a couple of days after the surgery, the patient developed fluid in his belly. I wanted to make sure it wasn’t urine leaking from the new kidney, so I tapped it and had it tested for creatinine, which would be high if it was urine. It also got sent for the pancreatic enzyme amylase, and the results came back positive—meaning the fluid was leaking from the pancreas. I tried everything to stop the leak, from giving the patient medication, to stenting his pancreas, to resecting portions of it, but in the end, nothing worked. I saw this patient every day for months. I saw him when he seemed to be doing better, and I continued to see him when he was clearly getting worse. He got frustrated with me by the end, and I got frustrated with him. I can distinctly remember hoping, when he was really sick,
that he would just die. It does not feel good to admit that. And in the end, he did. (Don’t get me wrong. I feel awful that it happened, and I feel responsible, even though I don’t know why it happened and can’t imagine how I caused it. I was just powerless to fix him, and death provided relief for both of us.)
Some complications are straight-up mental errors. Gary was a retired high school teacher (of physics and chemistry) with a wife and two daughters. He was generally a healthy guy, didn’t drink or smoke, and had led a good life. But about twenty years before I met him, he had his gall bladder removed, and after the surgery, he was told there was something wrong with his liver. He underwent a workup and was diagnosed with alpha 1-antitrypsin deficiency. Alpha 1-antitrypsin, a protein made in the liver, is secreted into the bloodstream, where it goes to the lungs to protect them from damage. In patients with this genetic disorder, the protein is abnormal and gets stuck in the liver, leading to cellular damage, ultimately causing end-stage liver disease. Many of these patients also develop lung disease from lack of this protective protein (since it is stuck in the liver), most commonly emphysema.
Gary developed cirrhosis of the liver, and eventually his liver stopped functioning almost completely. By the time I met him, he was extremely ill: His kidneys had failed secondary to his liver, and he was on dialysis. His belly was filling with fluid, requiring frequent taps. He was as yellow as a banana, and he was confused. His advanced illness had moved him to the top of our transplant list, and a liver became available for him just in time.
The surgery started at around 5:00 a.m. His hepatectomy was straightforward—he had a shrunken liver with five liters of ascites. The donor liver was of good quality, but it did have some variant anatomy that needed to be reconstructed on the back table. There were a few other minor challenges in the OR, but ultimately, the liver perfused well and worked right away.
We finished up, and I spoke with Gary’s wife, Doris. I thought things had gone well. Gary made slow improvement, and after a few days he was out of the ICU and back up to the floor. His kidney function started to recover slowly. He was so ill at the time of the transplant that I knew he would have a long hospital stay.
Then, about a week later, his bilirubin levels started to go back up, and he started to look yellow again. I ordered an ultrasound: the flow in the vessels looked normal. A day later the bilirubin was still going up, and I got a biopsy. No rejection. Finally, the next day, I decided to get an ERCP (the same procedure Nate underwent). I hate having this done too soon after a transplant, since it involves cannulating the donor bile duct that I had just sewn to the recipient duct. I am always nervous that this might disrupt my anastomosis, but I was concerned Gary had a narrowing (stricture) where I had sewn the two ducts together; and fortunately, our guys are good at it, and if there was a narrowing, they could probably thread a stent across it. When they performed the ERCP on Gary, they saw some sort of friable mass blocking the bile duct. They did a biopsy, but couldn’t get a stent in.
Damn. I knew I’d flushed the duct before sewing it together, and it flushed fine. Still, Gary’s bili levels kept going up, and a couple of days later I had them try another ERCP. This time, they maneuvered past this mass and got a stent in. All good. The biopsy showed benign hyperplastic tissue. I thought we were out of the woods.
Then, a couple of days later, Gary’s blood pressure dropped into the seventies, he was confused, and his bowel movements were black—all telltale signs of an upper-GI bleed. We moved him back down to the ICU, got a breathing tube in him, and got the GI guys to send another scope down there. As expected, the benign mass was bleeding impressively. They injected it with epinephrine (which causes the vessels in it to constrict and stop bleeding) and put in some clips. But they weren’t confident.
Gary did okay overnight, but then bled again, aggressively, the next day. His pressure was down again, too. They again went in with the scope, this time trying to burn the bleeding mass of tissue. They were not happy; neither was I. Confident he would keep bleeding, I told his wife, Doris, we would need to go back to the OR. She was nervous; so was I.
I took Gary back to the OR later that evening. We entered the abdomen, and the liver looked beautiful. I mobilized the duodenum and, once everything was exposed, called in my colleague Cliff, who operates on the duodenum. Duodenal leaks are rather deadly, given duodenums’ corrosive contents (including bile and pancreatic juices) and the difficulty in closing these leaks. Cliff stood over my shoulder as I opened the duodenum and found the clot. It wasn’t actually bleeding at this point, but it looked like it would again. And the mass was clearly nothing to be worried about in terms of cancer. I oversewed it carefully, and then closed the duodenum. Cliff gave me his blessing and left.
Now Phil, my fellow, and I turned our attention to the bile duct—and the stress level in the room immediately went down; this was an operation I had done many times. We divided the bile duct from the liver, just below the level of our old anastomosis and just above where the duct courses into the duodenum. We removed the stent that our friends in GI had placed, and handed it off the field. I asked for a suture to oversew the duct, a 2–0 silk. Phil held the end of the duct up so I could place my tie.
Suddenly, we noticed a rush of blood up closer to the liver. Had we disrupted something? We sucked out the blood and saw that the bleeder was just some small, inconsequential vein that had decided it wanted to be heard. We asked for a stitch, and all was well again.
Now we turned our attention to the next part of the operation: getting the bowel ready to be brought up to the duct. We repositioned our retractors lower and prepared the small bowel we would use to reroute the bile duct. Once this was ready, we replaced our retractors, and got the bile duct exposed. We made a hole in the jejunum near the end of our Roux limb and, using interrupted sutures, sewed the duct to the jejunum. It looked perfect at the end. We irrigated with a liter of warm saline and started closing the abdomen.
We finished closing at about two o’clock in the morning. I spoke to Doris, tucked Gary in in the ICU, and went home with the high you get when a complex operation goes well. I figured Gary was out of the woods.
The next day, I was sitting in my office, going over the case in my brain the way a professional golfer goes through each shot in a round of golf, when suddenly I said out loud, “I never tied the other end of the duct shut!”
I quickly called Phil, but he was out on a plane, procuring organs. I left him a message, asking if we’d forgotten that one tie. The second he landed, he called me and said, “Holy shit! We didn’t do it! You gotta take him back!”
I walked down to the ICU. Doris beamed at me from the chair next to the bed. In the bed, Gary looked tired but alive. He was so happy he had the breathing tube out, and he started to thank me, but I quickly stopped him and said, “I forgot one step of the operation. I need to take you back.”
He asked, “Am I a victim of a medical error?”
Yes, I suppose you are.
Malcolm Gladwell once wrote an essay for The New Yorker titled “The Physical Genius.” In it, he writes about Wayne Gretzky, Yo-Yo-Ma . . . and master neurosurgeon Charlie Wilson: “Charlie Wilson talks about going running in the morning and reviewing each of the day’s operations in his head—visualizing the entire procedure and each potential outcome in advance. ‘It was a virtual rehearsal,’ he says, ‘so when I was actually doing the operation, it was as if I were doing it for the second time.’ ”
I, too, often sit in my office or at the scrub sink and “perform” the operation in my brain before doing it in real life. I go over the moves, what things are going to look like, what problems we might get into. Before I do a laparoscopy, I look carefully at the CT scans, picturing the anatomy in 3-D, seeing what all the structures will look like and how they will be related. (This gets easier the more you do it.) I can’t fall asleep after a big case because I can’t stop my head from reviewing the steps of the operation, as if a tape were playing back the moves. I can act
ually register what I did well and what I might have done better, which helps me think about the next case. It is probably the same for any field that combines technical skills with mental preparation.
Oh, I did take Gary back to the OR that day. Things were pretty stuck already, one day after the other operation. I dug down and got behind my Roux and found the open end of his duct. Would he have been okay if I had left it open? I’m not sure. I oversewed it and closed him back up. And to this day, almost six years after his transplant, he is doing great.
ONE OF THE things that helps all of us in the transplant field deal with complications is the “M and M,” or “morbidity and mortality” conference, a weekly meeting where cases from the previous week are discussed. Virtually every department of surgery has M and M, and all resident training programs are mandated to hold these conferences. They are held primarily for the purposes of learning, teaching, and improving quality of patient care, but I think most of us find them cathartic, too. An M and M is usually run by a senior surgeon, often the chairman or division chief. A resident or fellow presents the case, and other surgeons chime in with questions, comments, recommendations, and, often, criticism. Usually the attending surgeon in the case will at some point give his impressions of what happened, what went wrong, what might have been done differently. There certainly are cases where I think I did everything right; where, given the information I had, I would have done things the same way again. But there have been many others where I wish I had made different choices, where I shouldn’t have operated, I should have called for help, I should have made a different choice about where to put a kidney, how to sew the artery to the liver, how to handle the ureter. Each one of these decisions likely led to some suffering for the patient—perhaps a reoperation, another procedure, more time in the hospital, blood transfusions, loss of an organ, even death. Heavy stuff—but talking about it with other people in the field is incredibly helpful, even when they call you out on your mistakes. We are all trying to be better for the next patient we see.