Ultimately, the Decision Is Yours

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 OK.

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 vise-like 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 buttock and thigh 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 University, 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.

In Search of Definite Answers

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.

Hindsight’s Wider Perspective

I have never fully recovered from the surgery. Not a day passes when I 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.

Careful listening is a starting point to careful thinking. We all sense when someone is listening carefully to us, and when one is not. In the latter instance, a physician may be distracted, overly confident, rushed or entering into the dialogue with blinding preconceptions. Such responses are red flags to the patient and his family that other counsel is imperative.

Good Decisions Require Collaboration

A doctor’s explanations to a patient’s family should make sense to them. All dimensions of a medical problem need to be clear: what is expected, what is unpredictable about the course of the illness; the level of risk inherent in a recommended therapy; the full range of options available. There is nothing so arcane and technical in medicine that it cannot be explained to, and understood by, a layperson. If such an explanation is not offered, then there is a cause of concern. This could indicate that the physician himself may not fully comprehend the situation, or that he is not willing to completely disclose the breadth of the issues involved, or has failed to fathom the patient’s intuition. Here again, the patient and his family should seek a second opinion.

It takes time for a physician to elaborate on a clinical situation and, if necessary, reopen the dialogue and refine his words. In the new world of medicine, time is often the least available element. Time is treated as a tightly controlled commodity in managed care, with follow-up appointments often measured in single-digit minutes. Indeed, rewards are often given to the doctor when the maximum number of patients is seen in a minimum number of hours. This factory mentality further dictates that the fewest tests be offered and the cheapest therapies be chosen. Although the past system of fee-for-service suffered from egregious abuses, with some doctors ordering inappropriate tests and even performing operations for which there were unclear indications, the pendulum now has swung too far in the opposite direction. Many patients find that their health plans restrict second opinions, particularly with consultations outside their own network. I believe when confronting such obstacles the patient and family should be very vocal and press as hard as possible to consult a chosen specialist.

I have learned that the questioning of my perceptions and plans by my patients is a vital component in formulating the best possible diagnostic and treatment strategy. Such questioning gives me the opportunity to reevaluate and sharpen my own thinking.

When I was suffering with my back, I was frightened, confused and demoralized. I found it hard to listen and even harder to hear. I felt lost and desperate, and could not summon my own intuition. I was too ready to put myself entirely in the hands of a doctor who seemed to have all the answers, and discounted the sober perspective of my wife, Pam.

What I experienced is, to a varying degree, the experience of every patient in the grip of illness. During the months after the disastrous surgery, I revisited in my mind each step that had brought me to such debility, and saw in a harsh retrospective light how I relinquished my critical judgment. It was only when I began to question and evaluate the opinions offered to me that I reclaimed my intuition, and found physicians and caregivers who helped me to regain my health.

I know, firsthand, that evaluating medical advice is a great challenge for all of us. I have learned that when we are armed with knowledge, steadied by family and friends, and able to call on our intuition, we can gain clarity and insight, and are prepared to make the best possible decisions.

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Dr. Jerome Groopman teaches medicine at Harvard Medical School and is a leading cancer specialist. He is also chief of experimental medicine at Beth Israel Deaconess Medical Center in Boston. Groopman also writes about medicine and biology for the New Yorker magazine. He is the author of the forthcoming “Second Opinions: Stories of Choice and Intuition in the Changing World of Medicine” (Viking). In this excerpt, adapted from “Second Opinions,” Groopman, then a junior professor at UCLA Medical School, writes about an injury he suffered while training for the Boston Marathon in 1979.