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Vital Signs: Final Battles

Mrs. Chang's life had not been easy. Now she was afraid her death wouldn't be, either.

By Stewart Massad
Mar 1, 1998 6:00 AMNov 12, 2019 6:12 AM


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Mrs. CHANG LAY IN THE EMERGENCY WARD, fighting. She was fighting terminal cancer, pain, and despair, and as her oncologist, I was called to see her. Just back from a farewell visit to her parents in Taiwan, she lay on her gurney behind a green curtain, her son beside her. Her knees were drawn up, her arms crossed, her eyes closed. When I said hello and touched her frail shoulder through the worn hospital gown, she turned, her body stiff beyond her years. She fought to sit up, to smile, to regain the politeness and grace that were second nature to

her. But fighting took everything she had. She grimaced and fell back against her plastic pillow.

I can’t, was all she said. I can’t.

Mrs. Chang had cervical cancer and it was killing her. She was not yet 50, and because of her cancer she never would be. Her life—as immigrant, wife, mother, waitress, daughter—had been full of struggles. She had survived them all, but now she was struggling with things she could not overcome. I could not cure her, only help her to be more comfortable.

Nearly two and a half years had passed since she first came to see me, the gynecologic oncologist at Chicago’s Cook County Hospital. At the time of diagnosis, her cancer had spread beyond the cervix, the opening from the vagina into the uterus, and into surrounding tissue. Although the cancer was advanced, it was not yet hopeless. I had told her of the odds and outlined her options. And at first she did well. Radiation treatments shrank her tumor. Then a hysterectomy removed the residual growth. For two and a half years, she was healthy. On visits to the clinic every few months, I examined her. I was looking for signs that cancerous cells remained in her reproductive tract. I also asked her about new pain, weight loss, leg swelling, and cough—all signs that cancer has recurred.

During these visits she described to me her triumphs and travails. Her son finished college and began work as a graduate student in molecular biology. She kept working in a Chinese restaurant, serving meals, pouring tea. She nursed, buried, and mourned the elderly husband she had traveled with from Taiwan years before. She kept her Chinatown apartment in order. And she hoped.

Then she slipped at work and hurt her back. She took pills from the drugstore, and infusions from a traditional Chinese herbalist, but her backache did not go away. Her son noticed the bulge in her neck she had tried to ignore, and he brought her to me. I felt the stony lump and ordered tests to confirm what I already knew: that her cancer had recurred. A week later I stood in the dim, air-conditioned radiology suite studying Mrs. Chang’s ct scan as the radiologist pointed out malignant lymph nodes along her spine. A surgeon later put a needle into the tumor above Mrs. Chang’s collarbone and aspirated fragments of tissue.

When the cells were inspected under a microscope, they were indistinguishable from the malignant cells that had been in her cervix. Mrs. Chang’s cancer had metastasized: the cancerous cells had spread beyond the local structures of the vagina and pelvis, passing through the lymph system up along the spine, behind the heart, until they had finally reached the neck. Cancers are often detected there because they form visible tumors.

Back in the clinic, I told Mrs. Chang and her son of her diagnosis. She sat with her hands folded and her eyes downcast. He stood, his hand on her shoulder. I told them her cancer was incurable, having spread too far for radiation or surgery to contain. Still, we would work to slow its spread. I saw that she was not surprised: we had spoken before of my suspicion that the cancer had recurred, a suspicion that she shared. When I was finished, she stood up, barely five feet tall. What shall we do? she asked.

We began by talking. Caring for patients with incurable illnesses requires a lot of talking. Patients always wonder why their treatments fail, even if some never speak the words. I know about probabilities and prognoses, but never the answer to the mystery of why treatments fail some and cure others. We still know too little about the biology of cancer and the mechanisms of therapy. I could only hold Mrs. Chang’s hand and tell her so. And I told her I was sorry.

Then we moved on to more pragmatic issues; we discussed how far she was willing to go to resist the disease. We talked in a way that was new to her. Before, I had been able to tell her what treatments gave her the best chance for cure. Now I only reviewed her options, asking her to choose what seemed best. Cancer treatment is like that. In cancer therapy, initial treatment involves fairly clear-cut algorithms developed from scientific studies. Treatment is often difficult, with painful surgery, debilitating chemotherapy, or radiation—sometimes combinations of these. But usually, at the start, survival is the goal. Doctors coach patients through the therapy, and patients endure.

Once hope for cure is gone, though, there are no algorithms, and the burden of decision making shifts from doctor to patient. The focus moves from cure to quality of life, and what determines quality only the patient can decide. Some elect aggressive therapy, fighting their disease in a battle to the death, never surrendering, regardless of the costs in terms of sickness, weakness, and pain. Others elect to yield immediately, refusing to compromise themselves, resigning themselves to death when their strength fails and they can no longer maintain the dignity and physical integrity they value. Most, like Mrs. Chang, choose a middle path, using conventional anticancer treatments like chemotherapy and pain medication until the escalating physical and emotional costs become too high.

For five months Mrs. Chang took intravenous chemotherapy. While it could not eliminate her cancer, it could shrink the tumors that caused her suffering. The drugs used in chemotherapy are powerful: they work by killing rapidly dividing cells. But they have powerful side effects: nausea resulting from interactions in the brain and gastrointestinal tract, and anemia from the depletion of normal but rapidly dividing red blood cells. Mrs. Chang found the nausea tolerable and the weakness that resulted from the anemia worth the benefit. She received chemotherapy every three weeks. Within six weeks, the metastatic cancer in her neck shrank from the size of an egg to a hard little pearl, and her pain faded.

But after five months, the cancer cells that the chemotherapy could not destroy became resistant to its effects. The cancer-ridden lymph node in her neck grew back. The pain returned. I offered alternative chemotherapy: regimens less proven, regimens that required longer hospital stays, that would make her bald, that would sap her immunity. She declined.

How long will I live? she asked.

Few women in your situation live more than a year, I answered with intentional vagueness. Though she did not understand my explanation in English, her biologist son explained in Mandarin how chemotherapy fails for different women at different times: it fails some women in a few weeks, some live with indolent cancers for a year or two or three, most die after six months or so.

I can tell you what will happen to a hundred women, I told her, how many will beat the odds and live longer, how many will die earlier. But I can never predict what will happen to any individual, to you.

Instead of her future, we focused on her present pain. Pain can be a constant companion of patients with terminal cancer, and its cause is not well understood. The growing tumor may press on nearby nerves, and it may also induce local inflammation, part of the body’s reaction—and unsuccessful defense—against cancer. Narcotics are the key to relieving cancer pain. But they carry a stigma, and when I told Mrs. Chang I was prescribing morphine, I saw fear in her eyes.

I will not be an addict, she said.

No, I told her. You will be free of pain. I ask patients to think of morphine as a tool. Some people abuse it, and it hurts them. We’ll use it to help you.

We began with a mix of short- and long-acting morphine to dampen its side effects and minimize the number of pills. I added laxatives to combat the constipation the morphine induces. When I saw her shortly after that, she sat straighter and smiled when she saw me.

I am going back to Taiwan, she announced. I must see my parents one time more. I do not expect you to understand, but it is my duty.

Who will go with you? I asked, frowning. Who will take care of you?

I take care of myself. I always have. Even before my husband died.

I looked at her son, who always accompanied her. He only shrugged.

I tried talking her out of it, he said. I can’t do anything with her. It’s a Chinese thing, Confucius and all that. Everyone from the old country is that way.

She scowled at him. I am going, she said. I wrote out prescriptions for a supply of medication and hoped the customs agents wouldn’t trouble her.

While Mrs. Chang was away, I read about experimental treatments and alternative therapies, but I found nothing new that offered real hope for extending her life. I realized I had grown to like Mrs. Chang. And I realized she would soon die. Caught up in the hustle of clinics, wards, and operating rooms, doctors rarely reflect on their cases. Especially difficult to contemplate are the terminal ones—cases that offer no promise of the emotional reward that comes from triumph over disease. And yet, as an oncologist, I’ve come to realize that caring for the dying is a central part of the physician’s role, one that goes back centuries before the development of the modern technologies that made possible the conquest of some diseases. Accepting that role is difficult, because it means accepting mortality—not only the patient’s but one’s own. As a gynecologic oncologist, I had trained first in obstetrics, spending night after night during residency delivering babies. Perhaps witnessing the cycle of birth and death, the continuity of life and the span of generations, made it easier for me to confront the fact that neither Mrs. Chang nor I would live forever. Thinking about Mrs. Chang’s life made me think about the limits to my own ambitions and the transience of my achievements. When Mrs. Chang returned after two months, it was to a humbler doctor.

She came back fighting, heading straight from the airport to the emergency ward. When I arrived, she was overwhelmed with pain. She had run out of medication, her son told me, a week before her flight home, and she had been unable to afford the price of any earlier plane or the cost of an oncologist’s care. She had barely survived the flight, the cancer gnawing at her while the jet bumped through turbulence.

I put her in the hospital. One of my residents pushed liquid morphine into an iv line. Her face unclenched. Her body relaxed. She fell asleep.

But her body had grown tolerant to the narcotic. Controlling her pain required so much morphine that the drug made her dizzy. She saw visions: childhood friends, grandparents. I reduced the doses and added other drugs. I used an antidepressant, which changes the way the body interprets pain, reducing the sense of suffering and despair. I gave anti-inflammatory agents, which reduce the pain that results from the body’s reaction to the invading cancer. I consulted radiation oncologists, who gave short courses of X-rays to metastases eating into the bones of her spine, shrinking the tumors and temporarily arresting their growth. I called in a team of anesthesiologists who specialize in the outpatient management of pain. They prescribed new drugs to block the nerves that transmit pain.

And I called on hospice nurses. Over the last few decades, the hospice movement has grown up to fill a void left by conventional medical therapies. Hospice care offers terminal patients the opportunity to face death at home, among loving family and friends. Once that was the norm, but now most patients die in hospitals, their deaths too often prolonged by technologies that eat away at the quality of whatever life remains. Hospice care is an alternative many choose.

But it seemed not to be an alternative available to Mrs. Chang. Though founded on compassion, hospice care—the counseling, the nursing visits, the commode and special bed, the drugs—costs money. Mrs. Chang had little money and, as a restaurant worker barely earning minimum wage, no health insurance. Though her son was a citizen, she was a legal alien, and the hospital’s social worker found that since she had always worked off the books for cash, she was ineligible for Medicare. The county government had provided her clinic and hospital care, as it has for millions of immigrants over the decades. But in a time of shrinking budgets, there were few funds for hospice care for the indigent. The hospice team would visit once a week, but that would not be enough for Mrs. Chang, fragile as she was.

It is not a problem, her son told me, after I outlined the obstacles to home care at Mrs. Chang’s bedside one afternoon. I will quit school.

No, Mrs. Chang said. She tried to sit up, struggling to rise and to control her anger at the same time. I am your mother, and I will never allow that. I would take my own life before I let you throw away your dreams. She fell back on her pillow. After all, she asked him, what do you think my life has been for?

In the end, his sacrifice was not needed. The cancer grew rapidly, blocking the tubes that channel urine from the kidneys to the bladder. Obstructed, Mrs. Chang’s kidneys failed.

We could put in tubes, I offered. That would relieve the obstruction and buy time.

Time for what? asked Mrs. Chang, ever the pragmatist. My son is a scientist. She sighed. I would like to see my grandchildren. She looked at her sheepish son. But Mr. America says he hasn’t found the right girl, so I will go.

She went into a coma and died with her son beside her. After he left to notify the aunts and uncles, the cousins and friends and the funeral home, I went in to see her. Her face was placid. She had finally risen above her struggles.

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