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Narrative Matters

Life But No Limb: The Aftermath Of Medical Error

I have written about my experiences as my husband’s caregiver but have avoided writing, even talking, about the medical error that occurred early in his hospitalization. It is only now, nearly thirteen years later, that I am cautiously ready to tell that part of the story. It is my story because the person to whom direct harm was done is unable to give his own account. The choice to write about such a painful experience brings up feelings of shock, disbelief, and even guilt. In some illogical way, writing about the medical mistake is an embarrassment, as if by doing so I will be exposed to the world as a person whom fate has singled out for a particularly nasty break.

Yet I have overcome these doubts in order to add a different perspective to the oddly disembodied, professional discussion of medical error. Medical error is more than an engineering problem, amenable to technological and "systems" solutions. Policies put in place to reduce medical error also must address the financial and emotional needs of those who suffer great and often permanent harm.

‘There Was A Mistake’

 
After the accident my husband was brought by ambulance to a community hospital. The neurologist on call somberly told me that even if my husband survived, he would be seriously impaired, both cognitively and physically. I wanted another opinion. Despite bad weather and telephone outages, I managed to get my husband transferred to a major New York City tertiary care hospital that same day. There the high priest of neurosurgery vigorously reassured me that my husband would be "one hundred percent okay." So, of course I believed him, not the community hospital doctor, whose initial prognosis turned out to be right.

A week into my husband’s stay in the ICU, when he still showed no signs of coming out of the coma, I received a call in the middle of the night from the neurosurgery resident. He said that my husband had a blood clot in his right hand and needed immediate surgery. At the hospital, the plastic surgeon called in on the case assured me that clots like this occur frequently; an operation would clear it out. He said they would give my husband a big dose of heparin to make sure that the clot didn’t recur.

The first surgery did not do the job, so back my husband went to the OR in less than twenty-four hours. At that point, the neurosurgeon met me in the hall. He seemed very angry. "There was a mistake," he said. "The catheter used to measure arterial gases became clogged, and a new catheter was placed on the same hand instead of the other hand. You never put two sticks in one hand. When that catheter became clogged, circulation was blocked through his hand."

He then said, "It wasn’t noticed for twenty-four hours," the passive voice subtly deflecting responsibility from a human agent. I can quote this line verbatim because it was repeated many times by family members who were there. At the time, though, I saw only the doctor’s mouth moving and his hand indicating where the catheter was placed; it was like watching a TV scene with the sound muted. He then said, "They’ll fix it. It’s not life-threatening." I asked, "But it is hand-threatening, isn’t it?" He only shrugged and walked away.

Only later did I remember that on the day before the first surgery, I had told the ICU nurse that my husband’s right hand was very cold. She said, "I’ll put on another blanket." That brief exchange haunts me to this day. Why didn’t I insist that she look at his hand and call a doctor right away? Would it have made a difference? I will never know.

Several surgeries followed, each accompanied by larger and larger doses of heparin. Then came a final, middle-of-the night surgery, after which the plastic surgeon told me, "We can’t save his hand. He developed an overwhelming allergic reaction to heparin. Instead of clearing the clot, the heparin made his blood clot so quickly that we couldn’t even begin to clear the vessels." I first asked whether this was a systemic reaction. Yes, he replied, but my husband would survive. I then asked whether his hand had been amputated. No, they wanted to wait to see how high up on his arm the damage went.

From Bad To Worse

Top 'There Was A Mistake' From Bad To Worse Looking To The Law Disclosure And Closure

 
For the next several days I sat by my husband’s bed watching his hand, then his wrist, then his forearm turn black. Suddenly he developed a serious infection and needed emergency surgery, to which I consented. What else could I do? His right forearm was amputated an inch or so below the elbow. For the next several weeks I sat by his side looking at the raw, finally healing stump.

Four months later my husband, still in a coma, was transferred to a rehabilitation facility. Gradually he came out of the coma, disoriented, confused, and incontinent. He was unable to sit up, eat, or move without assistance. The brain stem controls these functions; his was irreparably damaged. When he began to recognize me and understand a little of what happened, he repeatedly asked me to put his wheelchair in front of a mirror. He believed that his lost arm had been placed somewhere else on his body and that I was not showing him where it was.

The psychologist on staff was sympathetic, but from the beginning the rehabilitation therapists dismissed any possibility that my husband could use his right arm in any functional way. In the acute care hospital the specialists had assured me that with new prosthetic materials and therapy, my husband would be able to do almost everything he did before—go back to his job as a public relations executive, give presentations, everything. Upset by the rehabilitation therapists’ appraisal, I called the original doctors and asked for a consultation. No one responded. My husband never got a prosthesis that provided any functional benefit, and he scorned the one that was supposed to look like a normal hand.

At this point—and only at this point—I started to get mad. Not only had my husband’s prognosis for meaningful recovery been wildly overstated, but he had suffered a terrible loss and no one seemed to care. What would he have been able to do with a right arm intact? Hard to know. He was, in effect, paralyzed, but he was extremely sensitive to touch, which made physical therapy painful. His left hand was useless. Perhaps with a stronger right hand he could have fed himself, turned the pages of a book, changed the channels on the TV, helped in transfers from bed to wheelchair, touched me, and held our grandchildren. These are not meaningless actions in his life or mine.

Looking To The Law

Top 'There Was A Mistake' From Bad To Worse Looking To The Law Disclosure And Closure

 
A prominent corporate attorney i knew was trying to get our insurance company to cover some home care. He offered to talk to the hospital administration off the record and try to get a small settlement for us. No one at the hospital would return his calls, and then he too started to get mad.

As the deadline for filing a lawsuit approached, he urged me to think about this option. Our future was bleak. My husband’s health insurer had paid for all of the care associated with the medical error—amounting to several hundred thousand dollars—and we were rapidly reaching the cap on his policy. Moreover, insurance coverage for home care would be very limited. To keep my husband at home and my life reasonably intact, I would have to pay for his care myself.

I had no idea how to find a responsible malpractice attorney, since all I had ever heard from my health care colleagues was the usual badmouthing of trial lawyers. I asked a friend who works in a different hospital to ask the risk managers who they would least like to come up against in a malpractice trial. With the pro bono lawyer by my side, I went to interview that firm. They took the case, warning me that the process would be long and painful. Was I up to it? I didn’t know.

The firm filed the lawsuit, naming my husband and me as plaintiffs. Then began the excruciating experience of dealing with the hospital lawyers, their delaying tactics, and our depositions. Although my husband was able to participate in the depositions, I never knew exactly what he would say because of his brain injury. This made the process even more anxiety-provoking.

Through their deposition questions and discussions with our lawyers, the hospital attorneys intimated that my husband was a reckless driver (even though several other major accidents, including a fatality, had occurred that morning on the same stretch of road). They focused on his brain damage, suggesting that the loss of an arm didn’t make much difference. They asked questions about our sexual compatibility, marital disagreements, and personal histories. If doctors think trial lawyers are sleazy, they have only to look to their own advocates for evidence of ugly behavior.

Months and months, and then a year, then two, passed. No settlement offers. I believe that the hospital lawyers were waiting for my husband to die, reducing the hospital’s liability. At last the judge ordered the doctors’ depositions to begin. And on the day before the first deposition (at which the extent and egregiousness of the errors would finally go on record), the hospital lawyers made an offer. Our lawyers said that it was fair, and I immediately accepted. It was finally over, or so I thought. But it is not over and never will be. Money, essential as it is, does not by itself right a wrong.

Disclosure And Closure

Top 'There Was A Mistake' From Bad To Worse Looking To The Law Disclosure And Closure

 
Pain and suffering are real, not just legal fictions. Even after years of therapy I still have nightmares involving loss of body parts. My husband has adjusted better than I have, partly because he has no memory of the events. My grandchildren are now old enough to ask about Grandpa’s missing arm. Where is it? I do not want them to know just yet that doctors can make mistakes, so I say that the loss was part of the accident that put him in a wheelchair.

At present, persons who have suffered medical harm have only one channel of recourse—the tort system. Lawyers take cases on contingency, and their fees come out of an eventual award, if there is one. This system worked for me. Even so, the lack of a long-term care system that can manage complex cases like my husband’s meant that the award provided only the minimum financial resources to allow me to cobble together a workable, though fragile, home care system. (My only alternative to suing the hospital was impoverishment so that my husband would be eligible for Medicaid. This would have ended my career and reduced the quality of our lives enormously.) But how many people can’t get lawyers to take their cases, because attorneys feel that the evidence is too weak, the odds of recovery too low, or the recoverable amount doesn’t justify the huge cost of going to trial or reaching a settlement? How many families give up because they can’t stand the strain?

Beyond whatever tort reforms may be advisable, some kind of nonadversarial system should exist for people who have suffered financially from medical error. Some potential models are the federal no-fault schemes for children who have experienced serious side effects from vaccines, or the federal compensation system for September 11 families. For some people, the benefits of certainty and speed may outweigh the downside of potentially lower compensation levels.

But even for people like me who do manage to receive compensation for medical error, money is only part of the solution. Lawsuits are filed not just for financial reasons but because people feel abandoned and aggrieved, in ways that better communication and acknowledgment might alleviate. Doctors and risk managers underestimate both the importance that families place on knowing what happened to loved ones and the frustration they feel when stonewalled. If there were more openness, including apologies, some lawsuits might be forestalled and others settled quickly, without so much emotional toll on families and physicians. Our lawyers have reconstructed a fairly good but still incomplete picture of what happened to my husband; to this day we do not know the details.

Equally important, I have no idea what happened as a result of the inevitable hospital and, I assume, regulatory review. Good reasons exist to keep confidential a hospital’s deliberations during a morbidity and mortality review, but I believe that it’s essential to let patients and families know what measures have been taken to prevent a similar error.

Despite this experience, I have entrusted my husband’s care to the same hospital and even on one occasion to the same ICU, where the care was excellent. But when he or anyone else in my family is hospitalized, I am constantly vigilant, mindful of how little it takes to turn routine into disaster.

Editor's Notes

 
Carol Levine is director of the Families and Health Care Project at the United Hospital Fund of New York. This essay is adapted from a presentation to a meeting of the Medicine as a Profession Forum, a project cosponsored by the United Hospital Fund and the Open Society Institute.

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