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When my gynecologist's office called me and asked that I come in as soon as possible, I knew this was not good. But I could not have imagined the bizarre and dramatic odyssey I was beginning – or how frighteningly close several trusted doctors were to sending me to unnecessary, expensive and painful surgery. And there's no way I could have known how the deceased management guru with whom I'd spent more than a decade of my professional life collaborating would provide an essential piece of advice.

I had had my biannual in-office biopsy 10 days before. The procedure was done to determine whether my small daily dose of estrogen was causing cancer. While estrogen taken for menopausal symptoms can increase a women's risk of uterine cancer, adding progesterone can reduce that risk. But in my case the progesterone made me more irritable than taking no estrogen at all. So with my doctor's permission I kept taking the estrogen but quit taking the progesterone. The biopsies were done to keep an eye out for cancer.

When we met to discuss my biopsy results, my doctor said a lab report showed atypical cells in my uterus, a condition considered a precursor, or even an indicator, of cancer. She wanted me to immediately schedule a hysterectomy – a major surgery in which the entire uterus is removed.

I am 65 years old and have avoided all surgery since I had my tonsils out at 6. I asked if there were any alternatives. No good ones, she said. Besides, she said, after the surgery I would be able to take all the estrogen I wanted.

I could choose to have a D&C, she allowed, dilation and curettage, an extensive scraping of the uterine lining. This is a relatively minor, in-and-out procedure, but if results of that process revealed more atypical cells or cancer, I would have to have a hysterectomy anyway. And, she reminded me, if I had a D&C I would not be able to take any more estrogen afterward. I would still have my uterus and, therefore, would need to be tested for atypical cells and cancer regularly and indefinitely.

I said I would like a second opinion; she gave me two doctors' names.

I met one a week later. He read the lab report and told me that I had a 1-in-4 chance of having cancer already – and that unless I wanted to have another child I should have the surgery to remove my uterus immediately. If I had wanted a baby or had been unhealthy, he told me, the alternative treatment would be long and risky, requiring repeated D&Cs, numerous tests and a life of medication – including the dreaded progesterone – until I finally had a hysterectomy.

The Lab Report

Somewhat impulsively, I reminded the doctor that the fifth leading cause of death in American hospitals was medical mistakes. I asked if he would read the biopsy slide that showed my cells to be abnormal. He said he would have a leading pathologist read it with him, and if there were any question, he'd take it to others.

I faxed the lab report to my internist. She called the gynecologist and suggested that maybe I could have a D&C, and then they could watch me for a while. But they agreed that I had told them I needed the estrogen to be civil to people, and that I should not take it anymore unless I had a hysterectomy.

The internist referred me to another doctor, to whom I faxed the lab report. (I should note here that all these doctors saw the written lab report; no one had seen the biopsy slides except the lab technician, who had interpreted the slide and written the report.) This doctor left a message on my answering machine saying that he was leaving the country on vacation and that he saw no nonsurgical alternative to hysterectomy.

I got the impression from the doctors that, after menopause, women's reproductive parts become a liability. One recommended it was better to have such surgery at 65 than at 75. And a couple of them pointed out that if I had my ovaries removed at the same time, I could avoid getting ovarian cancer, too.

I read books and scoured the Internet for the implication of atypical cells. Not much controversy: a possible precursor and indicator of cancer.

Friends who had had the operation agreed it was difficult, but most had suffered from acute discomfort before the surgery and the procedure had relieved it. By contrast, I felt great physically and would not enjoy any relief from the surgery. I was not happy about having major abdominal surgery with all the risks that would pose, plus the weeks and months of feeling weak and uncomfortable. I couldn't decide what to do.

I finally asked my internist what she would do. She said if she were 65 and wanted to take estrogen and had atypical cells, she would have the hysterectomy. I decided to follow her advice.

Are Four Doctors Wrong?

At this point, I began to prepare for surgery.

Immediately after getting news of the atypical cells, I had stopped taking the estrogen. To prepare for the procedure, I went to an acupuncturist (a great preparation for surgery and recovery, I'd been told). I also had a therapist friend make a hypnotic recovery tape to play during the surgery. I rearranged my house and moved a bed to my living room, since I had been warned I should not climb stairs for at least two weeks. I was also told it would take six weeks to recover and maybe even longer to begin doing yoga again. I got what used to be called the last rites of the Catholic Church – now called the sacrament of the sick. I hired a practical nurse to be at my bedside the first night after surgery to assure that anyone who touched me washed his or her hands first. I drew up a living will, a power of attorney and updated my regular will.

Meantime, it took two days of telephone calls to get the actual biopsy slide sent from the lab to the doctor who had agreed to provide a second reading. I could never have accomplished this without being persistent, using a fax machine and having a Federal Express number. I wondered what people without these resources did.

Two weeks passed. I did not hear from the doctor who was to give me the second reading of the slide. I expected he would say that it showed atypical cells and I should have immediate surgery. I called his office and kept missing him. On the day before surgery, I spoke to my surgeon/gynecologist and she agreed to track him down.

In Search of Quality

That day, I went to Sibley Hospital in the District to preregister for the hysterectomy. The young woman taking my information followed the usual questions and answers with, "At Sibley, you are not just a patient, you are a consumer, a customer. Let me explain what that means."

I laughed and said she did not have to explain. I was familiar with the concept of pleasing the customer, having worked for years with the late W. Edwards Deming, the legendary management analyst and statistician who developed the philosophy of customer-driven management and continual improvement. An NBC program I had produced in 1980, "If Japan Can, Why Can't We?" had introduced his ideas in the West. His work eventually reached corporate America and became adopted throughout the economy as Total Quality Management.

Deming had been a resident of Washington, too. Over 10 years, I had spent months interviewing him for a library of videos and two books about his ideas, including the concept of making decisions based on data.

Somehow deep in my subconscious, this encounter at Sibley must have triggered an important question, though I did not realize it at the time.

I returned home. Surgery was less than 24 hours away. In the late afternoon, I took a long walk with my husband and then did some stretching. As I started mourning that I was not going to be able to stretch in the coming weeks, a thought or a voice – I can't remember which – came to me.

"Would you really make a decision about something as important as this with a single data point – just one reading of one slide?" Dr. Deming seemed to be asking me.

I thought about it. Then, with trepidation, I walked downstairs to speak with my husband. "I don't think I can have surgery tomorrow," I said, "I just heard from Dr. Deming, and he wanted to know why I was making this major decision with information from just one data point."

I expected him to be annoyed. He had moved the beds around and been through all these weeks of discussion and preparation. Instead he said, "You're right. There is no such thing as a fact." He had worked with Deming, too.

But the second reading of the slide was still not available. I called the surgeon/gynecologist; she said if she couldn't get to the other doctor, she would just do a D&C – the minor, in-and-out surgery – the next day. By now, I imagined the second reading, if it got done at all, as being done on the fly. I assumed the doctor would just confirm the obvious and recommend the hysterectomy.

At that moment, I decided I would ignore whatever he said and have only a D&C.

I went out and returned home to find a message on my answering machine from the second doctor.

"Don't have a hysterectomy unless you want one," he said. "That slide was over-read."

He called back later and said to go ahead and have the D&C – but based on the slide as he saw it, he expected no problems to be discovered during the procedure.

Deming to the Rescue

The next morning I arrived at Sibley at 8 a.m., and as I walked into the waiting room, a well-dressed man with a name tag identifying him as Jerry Price, chief operating officer of the hospital, approached me.

"You're Clare, aren't you?" he said.

"Yes?" I answered dubiously.

"You don't know what I want to talk to you about, do you?" he said.

But without his saying another word, I did know: Deming.

"We have all the videotapes and books you did with him, and we practice his philosophy here at Sibley," Price said. "We have plenty of time to talk. Your surgery is not until 10 a.m."

He led my husband and me to his office and told how inspired he and his staff were by Deming's ideas. He told a delightful story of how Deming had been a patient at Sibley in the early 1990s and had called him into his hospital room and said, "You don't trust your patients, do you?"

Price said he was puzzled.

"Look in the closet," Deming roared. He shouted a lot, particularly at top management.

Price looked in the closet and it was filled with the coat hangers used in expensive hotels, the hangers that have little balls that must be fitted into tiny holes.

"How would you like to be 92 years old and sick and you couldn't even hang up your clothes?" Deming demanded. "Do you think your patients want to steal your coat hangers?"

Price showed us a letter from Deming in which he had sent a $25,000 check and instructions to buy new coat hangers for all the patients' rooms.

Price did so, had a number of them sanded down and got Deming to sign them. Today, the quality awards at Sibley are sturdy wooden hangers with hooks and Deming's signature mounted in a frame.

"We are the hospital for demanding Washington residents who have extremely high expectations. Dr. Deming taught us how to meet those expectations through the quality improvement process," Price said.

Later, I had the D&C. The biopsy done on the cells taken during the procedure showed no atypical cells.

A Lesson Learned?

I asked my gynecologist what the lesson of all this was.

"It is a good example of the importance of managing your own medical care," she said.

This surprised me. I thought she was managing my medical care. But of course, she was right. Doctors can only give you advice. And the advice can be no better than the information upon which it stands. And so it falls to you to monitor the quality of the whole caregiving process, from appointments to diagnosis and procedures to recovery and billing.

To a layperson like me, it's difficult to know where to start, even if a leading thinker on quality management is prompting you from the other world. Some questions I would like to ask Deming are: How many readings by how many pathologists of a single biopsy slide are needed to verify a recommendation? Are two data points a trend? Does a single biopsy equal only one opinion no matter how many people read it? And how many doctors should be consulted and about what?

Good luck finding answers to all that. Questioning the authority, advice and conclusions of doctors and risking their displeasure, all done under the burden of a possibly deadly disease, is easier to talk and write about than to do. It is not the same as arguing with your automobile mechanic, putting off talking with your accountant or lawyer, or challenging an elected official.

Incidentally, my gynecologist had said that if the lab reader of the suspicious cells had not reported them and I had had cancer, my survivors could have sued.

Later, I realized that I had been saved from unnecessary surgery because of my work with Deming. I had been able to see the system – though I could not have described it that way the day before surgery. I had seen the intangible connections among the doctors, lab and slides and multiple possibilities. In contrast, the doctors saw only a series of single events: probability of cancer, possibility of lawsuits, cost of surgery and so on. It seems beyond their power to put together an outpatient health care system of different doctors and labs for each patient.

Being a competent patient in the third millennium is a new and baffling challenge. You have to ask impolitic, and sometimes impolite, questions. You have to monitor your care in the system from beginning to end. You have to prod the various parts to communicate with each other. You have to remain focused on your optimal goal – your health – because not everybody else in the system is certain to be. My good doctors were all competent, professional, caring people who were concerned about my health, but they didn't question the work of others in the system. That, in the end, was the biggest threat to my health.

Meanwhile, I have taken no more estrogen. Even though I am having hot flashes and reading a lot in the middle of the night, I am so relieved to have escaped a hysterectomy that I am not as irritable and impatient as I used to be.

Oddly, my lack of estrogen seems to have affected my husband more. He can't seem to do things as well as he used to. I have to keep reminding him what he is doing wrong and how he could do it better. I sometimes wonder if pointing out the things he has been doing wrong is the best management practice.

Somehow, I don't think that is what Dr. Deming would advise.

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