This Article Extract Reprint (PDF) Submit a response to this article Alert me when this article is cited Alert me when eLetters are posted Alert me if a correction is posted Services E-mail this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Add to My Personal Archive Download to Citation Manager Reprints & Permissions Citing Articles Citing Articles via ISI Web of Science (4) Citing Articles via Google Scholar Google Scholar Articles by Rowe, M. Search for Related Content PubMed PubMed Citation Articles by Rowe, M. Related Collections Legal/Regulatory Issues Personal Experience ("Narrative Matters") Quality Of Care

Narrative Matters

The Rest Is Silence

PREFACE: Doctors are told in medical school and in residency that maintaining good relationships with patients is important for good clinical practice. They also are taught that connecting on a human level to patients and their families can help to prevent lawsuits over real or perceived medical error. Medical error may not be entirely preventable, but how doctors communicate about it is something that physicians and hospitals have the power to change. Even as hospitals work to build better systems to reduce error rates, human communication problems persist. Michael Rowe, who lost his teenage son after complications from a liver transplant, tells us how lack of expressions of compassion from doctors after the boy’s death—rather than medical error per se—led him down the path toward legal action. Carol Levine recounts the error that permanently disabled her husband years ago and that to this day defines their lives. She followed through with a lawsuit against the hospital that committed the error but explains why money alone is not enough to give her peace of mind about what happened. The tough situation that doctors face when their patients die is described by pediatrician W. Richard Boyte, who sheds light on why doctors often shut down emotionally in such circumstances and why doing so is harmful to patients and to the physicians themselves.

Jesse, my nineteen-year-old son, had been shivering constantly for the past twenty-four hours, and now his lips were shivering too. We stood around the bed, his mother, his stepmother, and I. Terri, his nurse, was in and out of the room hanging blood, platelets, and fresh frozen plasma on one of the poles at the corners of his bed. It had been a night and a day and a night since his last downturn. The three of us had gone without sleep, nodding off as we warmed bags of blood against our bodies before passing them to the nurses to be hung before the last bag was empty. The nurses said that doing this would make it easier for Jesse as the blood went through his IVs.

The first downturn had come three months ago, when Jesse’s surgeons took him back to the operating room four days after his liver transplant because his temperature had gone up and he needed more and more Fentanyl for the pain in his belly. (Jesse needed the transplant because of cirrhosis of the liver, which had been diagnosed two years earlier, shortly before his surgery for ulcerative colitis—an intestinal disorder that is associated with developing liver disease.) They discovered that while connecting the hepatic artery of his new liver to his intestine, they had inadvertently caused an intestinal perforation during the difficult task of cutting through the intestinal adhesions that had formed after Jesse’s surgery for ulcerative colitis. That perforation led to peritonitis, and peritonitis led to sepsis. Less than three weeks after his transplant Dr. Dorand, the attending surgeon, told us that Jesse had only one to two days to live. But Jesse rallied and received a second transplant. Before this last bout with sepsis there had been another perforation—this time caused by Jesse’s weakened state and poor nutrition—then another bout of sepsis that ruined his second new liver, another "one-to-two-days to live" speech, and another rally leading to plans for a third transplant.

I felt the bed rail sink a little to my left. It was Dr. Dorand. My wife, Gail, suggested that we all go outside the room to talk.

Dr. Dorand stood at the far end of the nurse’s station. Dr. Broward, the nephrologist supervising attempts to give Jesse the dialysis he needed to clear toxins from his blood, stood at his side. The ICU attending physician, the residents, the nurses, and we stood around them. We talked about what to do.

"We could take him back into surgery to look for a discrete source of bleeding," said Dr. Dorand. "I’m a surgeon, so that’s my impulse. I want to do something. If I did it, it would be with some hope." He paused. It was clear that he’d have a hard time mustering any hope for Jesse now.

"If he were your child, what would you do?" I asked.

There was silence. I wondered if my question was in poor taste but then thought, no, Dr. Dorand would understand that I had to ask it. He stood mute for what seemed like several minutes, looking around, not at the others as though to be rescued, but behind them. I wondered if I should break the silence by rephrasing the question, but something told me not to. Finally he looked at me.

"I would wait. I think it’s more likely that the surgery would kill him than help him. I would wait for an opening."

Dr. Broward agreed. He couldn’t give Jesse his daily dialysis because when they started the dialysis machine his blood pressure would plummet. "The best thing to do now," he said, "is to wait and see if we can find an opening to take action. If Jesse’s blood pressure stabilizes, then we can look for another opening from there."

The three of us—Gail, Rachel (Jesse’s mother), and I—looked at one another and agreed. An hour from now there might be another decision to make, but for now we would wait. The meeting broke up, and Dr. Dorand left for surgery. I told Gail I had to go lie down in our favorite resting place.

I don’t know if I slept or not, so I must have. I heard Gail’s voice. "Michael? I think you’d better come down to the room."

We stood outside Jesse’s room and looked back and forth from him to the blood pressure monitor above his bed. Minutes later it was over. Dr. Rivera, the ICU attending physician, called an end to the code, and everyone was out of the room in a blur. Terri, who had been counting the beats for Dr. Rivera, brushed by us on her way out and let out a great sob.

We took photos and cards off the wall. People came and went. The attending gastroenterologist asked if we wanted an autopsy. If not, they could remove Jesse’s tubes and IVs. If so, they would have to leave them in until the autopsy was performed. No, we didn’t want an autopsy. Jesse’s body had been battered and beaten, poked and prodded enough. The transplant coordinator told us that there would be no autopsy and that the body would be kept at the hospital morgue until our funeral director picked it up. I kept wondering if Dr. Dorand would come back. Gail’s sister arrived to take us back home.

From Trust To Mistrust

 
Rachel and I decided to have jesse cremated and made separate funeral arrangements in our separate hometowns. I waited for Dr. Dorand’s call. The power of newborn grief had blinded me to the fact that it might be hard for a surgeon to have an ongoing relationship with the father of the boy who had died on his watch. Perhaps I felt close to Dr. Dorand because he had reached out to Jesse a few weeks before his transplant, telling him that he had his whole life ahead of him, while reminding him of the risks. Perhaps it was because a few weeks before Jesse’s last downturn, Dr. Dorand had played guitar and sang "Here Comes the Sun" for him, at the risk of ridicule from his colleagues. And there were tears in his eyes when I asked him what he would do if Jesse were his son.

Two days before the funeral I got a call from my funeral director, who informed me that upon arriving at the hospital to pick up Jesse’s body, he was told that it had been taken to the city medical examiner’s office for a full autopsy and that Rachel or I would have to come to the city morgue to identify Jesse before that office would release his body. I called Jill, the liver transplant coordinator. Her quick action straightened it out—no autopsy was performed, and the body was released to our funeral director. But I asked for an investigation of how communication between the ICU and the hospital morgue could have broken down so badly. The explanation, which blamed our funeral director, was preposterous and, it seemed to me, designed to protect the hospital against a lawsuit. I was angry and amazed that anyone could think we would fall for this inaccurate accounting.

Over the next few weeks I came to realize that Dr. Dorand was not going to call. I also began to receive the first of what would be dozens of letters from the hospital, mostly bills, from the many consulting specialists. These came from the ICU and nearly every hospital department, even though my health plan had negotiated a "global price" to cover all expenses. One bill was addressed to Ms. Jessie Harlan-Rowe. Another, for $357,000, offered me the option of using my MasterCard.

I wrote a letter to the liver team about our feelings. Dr. Dorand called and invited us to meet with him about setting up a physician-survivor group to develop standards for how the team would deal with death. Gail and I met with him and agreed to help, but weeks passed and we heard nothing. I wrote again, this time to the director of the hospital, listing our grievances. I received a letter informing me that the hospital was looking into things and would get back to me. No one did.

By this time I was beginning to wonder if lack of empathy was the problem, after all. What if Dr. Dorand and the others didn’t want to talk to us because they had made mistakes that had cost Jesse his life? What if the perforation that occurred during Jesse’s first liver transplant was not a "surgical accident," as Dr. Dorand had described it, but a surgical error? Should they have suspected, much earlier than they did, that his belly was filling up with intestinal contents? In the silence that followed my son’s death, trust died and mistrust took its place.

One morning, about three months after Jesse’s death, Gail and I sat at the kitchen table and talked over breakfast. "We want to be paid," she said. "And if we can’t have Jesse back we want to be paid in understanding, and if we can’t have understanding then we want to be paid in money."

Slippery Slope To A Lawsuit

Top From Trust To Mistrust Slippery Slope To A...

 
I followed the green stripe painted at a three-foot height on the tunnel wall in the hospital basement until I reached the medical records office. A Mrs. Lopez introduced herself and led me through another set of tunnels formed by banks of five-drawer metal file cabinets on either side. I sat at a Formica-top desk. She brought out volume after thick volume of Jesse’s chart, seven volumes in all. I started at volume one and studied nurses’ and doctors’ notes and surgical and lab reports. There was no smoking gun here, but I found reason to think that Jesse’s doctors should have diagnosed a perforation and gotten him back into surgery long before they did. I had Mrs. Lopez copy some pages for me and went home.

Over the next nine months I reviewed the chart material with a neighbor who is an ICU nurse; through a friend I contacted a physician who found things that disturbed him and who then tried to get a liver specialist to look at the chart. I phoned and wrote to the hospital asking for missing lab reports and x-rays. I talked to several malpractice attorneys before finding one who was willing to talk to a doctor about Jesse’s case, assuming I could find one. Finally, nine months after my visit to the medical records office, I found a liver specialist who told me I had cause but that Jesse’s was not an obvious and flagrant case of malpractice and might be difficult to prove. This doctor talked to my attorney the next day, and the attorney declined to take the case. My investigation had ended.

I finally did hear from Dr. Dorand again, around the time I spoke with the attorney. It turned out that he was calling a physician-survivor meeting, after all, and had done some work on a policy for the liver team to follow up with family members after a patient’s death. The meeting came too late for us, and I don’t know what the outcome was, although I’m glad it was going to take place.

It has been six years since Jesse died. The people I work for in New Haven—those who are homeless, are mentally ill, have a drug addiction, or live with their children in public housing projects where the street lights get shot out to give cover of darkness for nighttime drug dealing—endure daily traumas that, I expect, will never be my family’s lot. I am aware, too, that a certain privilege surrounds being the father of a child who died from a liver transplant—that of having a job that provides the insurance to pay for the surgery and that scarce organ in the first place. Still, the death of a child, or any loved one, is a grievous thing. That event was made worse for us by silence from the only people we thought were in a position to understand what we had gone through.

I dealt with all of this in various ways—by writing about Jesse; by having the good fortune not to be biologically prone to deep depression; and by a learned capacity to control my rage. Jim, a fellow parent whose baby daughter had died of biliary atresia (a condition in which the bile ducts fail to develop as they should) knocked over a newspaper stand outside the hospital and would have been arrested if his wife hadn’t been there to explain his behavior to the police. Despite our warnings that it would be stolen (and it was), my mother placed a stone with Jesse’s name on it under a tree she’d had planted for him in a park in Canada, the country of his dreams, although he never went there.

Jim, my mother, and many of those who sue doctors, as well as many of those who do not, have no place else to hang their grief when that grief—and seemingly their loved one’s life—is being ignored, even declared, in the space left by silence, a thing of no value. I too felt this, even though the rational side of me knew that the hospital and doctors did not intend to show us such extreme disrespect.

It is not that people sue without medical cause, but that they sue, in part, because they have no place else to go for recognition (from those who should be among the first to give it) that their loved one’s life and their loss matter. My wife’s comment about "being paid" came at a time when we still didn’t know whether we were reacting to lack of empathy or lack of good medical care. The notion of payment may seem crude when talking about human life, but the term is correct: When trust exits, debits and credits enter the vacuum that nature abhors. Trust gives passage over doubt, disbelief, and dark possibilities, and its absence nurtures those same qualities. And while I’ve made this point in relation to lawsuits and the contemplation of lawsuits, surely it applies to other aspects of the doctor-caretaker relationship after a patient’s death. Death is a failure when the aim was greater health, but with a little bit of effort it need not be only a failure. Both doctors and family members might benefit from words and actions that bridge the silence that death leaves behind.

Editor's Notes

 
Michael Rowe, Michael.rowe{at}yale.edu, is an associate clinical professor in the Yale School of Medicine’s Department of Psychiatry and codirector of the Yale Program on Poverty, Disability, and Urban Health. He writes about homelessness, mental illness, and other behavioral health issues. His memoir, The Book of Jesse, will be published by the Francis Press in October 2002.

                      What's this?