Prologue

My first experience as a patient proved as instructive as all my classes in medical school.

In the autumn of 1979, while training for the Boston Marathon, I developed a nagging ache in my right hip. I assumed I had bursitis, an inflammation around the joint. My self-diagnosis proved drastically wrong.

A sports medicine doctor was the first physician I consulted when the ache slowed my pace. He gave me Indocin, a strong anti-inflammatory medication, for the presumed bursitis. "Take it easy for about two weeks," he said.

I did not want to rest. I would lose my edge and endurance. "What about a rowing machine?"

The doctor looked at me knowingly and said light crewing was probably okay.

I set the metal oars at high resistance and pulled hard, warming up my arm and leg muscles. Then I rowed with my legs extended, to maximize the effort. The familiar dull ache grew in my right hip. I ignored it. A few minutes later, a viselike spasm exploded in my lower back. Electric shocks raced down my legs. I fell to the floor.

It took many hours, lying in a fetal position, until the pain eased. There were still tingles of electricity that played over my buttocks and thighs as I hobbled to bed.

In retrospect, the ache in my hip was not bursitis but referred pain from a nerve pinched by a bulging lumbar disc.

My wife, Pam, then a resident at the Massachusetts General Hospital, came home. Her advice, later echoed by the sports orthopedist, was that the best approach was strict bed rest, continued anti-inflammatory medication, and tincture of time.

But I wanted an immediate remedy and stubbornly believed I knew what was best. After all, my medical training had been as a student at Columbia, an intern and resident at the Massachusetts General Hospital, and a fellow at UCLA. Waiting patiently for nature to heal me seemed passive and paltry, so I doctor-shopped, seeking the second opinion I wanted to hear. I found a neurosurgeon willing to perform a limited operation on the bulging disc. The surgery did not fully return me to my prior state. There was still a dull ache in my back and hip. The marathon came and went.

In June of 1980, I left Boston for Los Angeles to join the UCLA faculty as a specialist in blood diseases and cancer medicine. Pam began her last year of medical residency there. I had not given up the idea of marathons.

One morning, after coffee at a friend's house in West Los Angeles, I stood up from my chair and abruptly collapsed. Again a powerful spasm gripped my lower back and electric shocks sped down my legs.

X rays showed no clear cause for the relapse. There were no bulging discs. I saw many consultants: rheumatologists, neurosurgeons, sports medicine doctors. Each told me that the lumbar spine is a "black box" and best left alone to heal itself.

I was emotionally frayed and bitterly frustrated by the lack of answers. The cause of my problem had to be defined and aggressive solutions applied. I was determined to be permanently repaired.

"You'll be up and running within two weeks," a burly orthopedist in private practice in Beverly Hills told me cheerfully.

He asserted that I had "instability" of my lower spine. A fusion, done by harvesting bone from my pelvis and inserting it along the ridges of my lower spine, would create an internal brace and fully restore my mobility. His partner, a neurosurgeon, wasn't so sanguine, but I was not deterred. The heady promise of the orthopedist made moot any other consideration.

I awoke from the surgery in the intensive care unit. My lower back felt woody and numb, and at first I thought I was cured. But moving my legs, or even just flexing my toes, triggered waves of such pain that my previous symptoms seemed minor.

I had hemorrhaged during the operation. The surgeons were unsure why. Perhaps the chronic anti-inflammatory medication had weakened my clotting system, although everything seemed in order preoperatively.

The agony did not relent. I was told I had neuritis, that my spinal nerves were irritated from the spilled blood and resultant scarring. The orthopedist suggested he operate again to free the nerves. I was confused and uncertain. At Pam's insistence, I declined.

For three months I lay on ice to numb the stabbing pains. I was given strong analgesics, Percodan and other narcotics. They made me nauseated and dopey. I could not focus and think. Books were a blur. I had little to say in conversation. I was despondent and became terrified that this would go on for the rest of my life.

I finally realized that my desperate belief in a perfect solution was a fantasy. I also realized that it was up to me, in part, to try to rebuild myself. I consulted a specialist in rehabilitation medicine. The narcotics were discontinued as I began physical therapy. The first sessions were awful, my frozen legs resisting even minor passive movements. I gradually extended my stride by supporting myself on parallel bars submerged in a hot pool. It took nearly a year for me to walk more than a few yards.

I returned to my career as a hematologist and oncologist at UCLA. A cot was set up in my laboratory, so that I could rest regularly. After I made rounds with the residents and students, I often had to lie on the floor of the conference room and discuss my patients while supine.

I have never fully recovered from the surgery. Not a day passes when I don't fail to think of my headstrong decision, because of the limits on my functioning. The pace and length of my stride are tightly constrained. Soft seats, like those on an airplane, fail to support my lumbar spine, and after a few minutes in them, my back goes into spasm; I carry a customized back support when I travel or go to a meeting. If I bend incorrectly, or quickly lift my heavy briefcase, or overtax muscles by standing too long on rounds, I suffer a siege of back and leg pain.

From this debacle and my chronic debility I developed a more tempered view of medical interventions and an abiding sense of humility about my profession and my own practice.

When patients and I sit in the quiet of my office and consider which options to choose, I often recount my experience. It brings me closer to them, knowing that I was on the examining table, swept up in the same tempest of confusion, fear, and frustration, vulnerable to all sorts of advice.

I make no pretense of omniscience. Decisions about diagnosis and treatment are complex. There are dark corners to every clinical situation. Knowledge in medicine is imperfect. No diagnostic test is flawless. No drug is without side effects, expected or idiosyncratic. No prognosis is fully predictable.

Still, there are important landmarks that help doctor and patient successfully navigate this uncertain terrain. A clinical compass is built not only from the doctor's medical knowledge but also from joining his intuition with that of his patient. This melding of minds occurs when the physician probes not only his patient's body but also his spirit, considering not only the physical repair required but also the psychological and emotional needs. Eliciting a patient's intuitive sense of his condition is not simple. It takes time and open dialogue to build trust with a person and to encourage him to express himself.

I wrote this book to provide an inside view of the complex and rapidly changing world of medicine and thereby help people make informed decisions. While there are no pat guidelines applicable to every patient and every situation, the chapters that follow retell critical moments that have forever shaped my thinking and practice-not only for my patients but for my family and myself. It is these times-both when my opinions and actions proved right and when I seriously erred-that I have sought to portray in the clinical dramas which occurred around me.

One such medical encounter occurred with Karen Belz, a longtime friend. Karen's family was plagued by breast cancer-her mother had died from it, and her sister, Ruth, was undergoing chemotherapy for widespread metastases. Karen was struggling with the question of being tested for a mutation in the breast cancer susceptibility gene BRCA, which is frequent in people of Eastern European Jewish descent. Did Karen really want to know, and what would she do, if she tested positive?

I came home from the hospital that evening and discussed Karen's dilemma with Pam, now a specialist in endocrinology and metabolism. I assumed she would agree with my clear logic and readily endorse my recommendation of prophylactic surgery to Karen. I was stunned when Pam took a very contrary point of view. What I took as the optimal choices were seen as problematic by a doctor whose expertise I admired and whose values I shared. What had seemed clear-cut was not.

My experience with Karen Belz and her treatment appeared as a story in The New Yorker magazine several months later and is included here. Her situation emphasizes that clinical decisions cannot be formulaic but must fit a person's beliefs, background, and desires. The risks we are willing to take, and what we are willing to give up to try to live, differ for each individual.

The other seven stories are published here for the first time. Each was chosen to illustrate a particular dimension of medical decision making.

Some choices are urgent and the consequences immediate. In the ER or operating room, decisions can spell life or death within minutes. My firstborn son, at ten months of age, developed an intestinal obstruction and almost died due to physician misjudgment. His story opens the book. Other chapters highlight seemingly minor decisions, made in less urgent circumstances, which proved to importantly determine the health and welfare of a person-their effects not manifest for months to years. I also recount instances when I had no clear understanding of what was happening clinically. Nonetheless, choices of great risk had to be made.

In a predictable world, clinical decision making would be a well-defined, scientific exercise with set methods for diagnosis and treatment. One increasingly vocal health care camp, populated by technocrats and managed care administrators, promotes this view. They believe that "decision trees," with branching algorithms and formulae, are necessary and sufficient for the practice of "effective medicine." The unfortunate truth is that this is not possible. People adapt differently, physically and emotionally, to each illness and react in varying ways to a given therapy. This means that diagnosis and treatment cannot be strictly bound by generic recipes, but must be made individual, to be consistent with the particular clinical and psychological characteristics of the person.

It is imperative that a physician has deep knowledge of his patient and his disease and ready access to first-rate technology. This conclusion comes from one of my most painful family experiences. In the spring of 1974, while still a student at Columbia, I was awakened in the middle of the night by a telephone call from my mother. My father, the person whom I loved and looked up to most in the world, had had a heart attack. His doctor was a general practitioner associated with a small community hospital in Queens. The ambulance was directed to that hospital rather than another nearby, larger center. I rushed from my dormitory in Manhattan and arrived at his bedside. No cardiologist was available. There was no intensive care unit in that hospital. The treatment my father received was rudimentary, and he died.

I reflected on that moment at each subsequent step of my clinical training-at Columbia, at the Massachusetts General Hospital, at UCLA. In these institutions, I saw what care could be. Other men in their fifties were saved by rapid and expert intervention. Advanced technologies, like aortic balloon pumps, angioplasty, and respirators, relieved the failing heart, opened blocked coronary arteries, and supported the fragile system. Of course, there were times when the best cardiologists and the best treatments failed. But at such moments, the doctor could assure the family that everything that could be done was done.

I committed myself to practicing medicine with the rigor and expertise my father had not received and to steering patients to the best medical centers that offered every chance for help.

But what is the "best" hospital or the "best" doctor?

When my grandfather had Alzheimer's disease, he was referred to a specialist touted as at the top in his field, based at a prestigious medical center. This distinguished doctor proved far from the best for the emotional and logistical needs of my grandfather and our family.

Thus, providing outstanding medical care demands not only scientific skill but also an open heart. These days, yet another attribute is needed. The clinical landscape is changing rapidly, much of the upheaval due to HMOs and managed care. This new world of medicine is populated by overseers who dictate your options and have interests that may conflict with your own. So you need more than a caring physician competent in physiology and pathology and pharmacology-you need someone who knows how to bypass the obstacles of bureaucracy and business, to maneuver in the system and get things done for his patients.

It is my hope that the stories in this book will enable the reader to make medical choices-his own, or for family or friends-with greater knowledge and deeper intuition, thereby contributing to the remedy of illness and enjoyment of health.

Jerome Groopman
Brookline, Massachusetts
May 1999

Reprinted from Second Opinions by Jerome Groopman M.D. by permission of Viking, a member of Penguin Putnam Inc. Copyright (c) 2000 by Jerome Groopman. All rights reserved. This excerpt, or any parts thereof, may not be reproduced in any form without permission.