WASHINGTON — Claire Chasles wants to know there is a reason to keep fighting. That is obvious both from the questions she asks and the ones she doesn't. She seeks no predictions, and her doctor offers none. He says only: "It's serious, but it's not over."
For now, that is enough.
"That's what I wanted to hear," Claire says. "I've still got a lot of fighting left."
Claire, 42, has advanced lung cancer, caused by 25 years of smoking that began when she was a teenager. She cannot undo the behavior of her youth. She can only live with its consequences.
In that regard, she is like hundreds of thousands of Americans who became addicted to cigarettes in their teens and who developed serious smoking-related illnesses years later, among them lung cancer, emphysema and heart disease.
At the same time, Claire hopes that her ordeal eventually will have a positive effect on her 21-year-old daughter, Christine Schulze, who is four months' pregnant and still unable to quit smoking.
The prognosis for advanced lung cancer usually is grim--a life span typically measured in months, rather than years. But who knows? Although Claire's tumor is growing, it is doing so slowly and scans of her bones, head and organs show no signs yet that the cancer has spread.
"That's why I haven't gone out of my way to discourage her, or present a gloom-and-doom scenario," said Dr. Naiyer Rizvi, her oncologist at Georgetown University's Lombardi Cancer Center. "She may do well for some time."
For how long, he won't say. He can't say, really, because he doesn't know. And Claire doesn't ask.
Soon she will begin the first of half a dozen daylong intravenous chemotherapy treatments, and much will depend on how the tumor responds. It won't be a cure. Lung cancer can only be cured when caught very early. Few cases are found at that stage. But today's drugs are more effective than those used in recent years against the disease, so there is reason to hope that she will gain some time.
While it may seem at times as if Claire and her doctor are avoiding the crucial issues, dancing around the truth, his responses have been honest--albeit tempered by the cues inherent in her questions.
Claire knows that lung cancer is a serious life-threatening disease. How much she is told beyond that is up to her.
"A patient should determine how much information she wants and how much she wants to hear about what the future holds," said medical ethicist Art Caplan. "The doctor should always allow the patient to set the emotional tone for a battle against a serious disease.
"Medicine is not just blasting tumors, it's also providing support and allowing someone to maintain a sense of dignity and control," he added.
In the past, doctors typically preferred to shield sick people from bad news about their prognoses. That attitude changed dramatically, however, with increasing acceptance of the concept of informed consent--a belief that patients should be given enough information to help them participate fully in their care. But some experts believe that sometimes the notion has been taken too far.
"I think, unfortunately, one of the unanticipated bad consequences of emphasizing informed consent to doctors is there's a tendency to think everybody has to get the worst spin on their medical prognosis and listen to every horrid nasty outcome imaginable," Caplan said. "That is not true. Informed consent is meant to empower patients, not terrify them and not crush their spirit."
There is little existing research that examines the role of a patient's attitude in the outcome of battling a serious disease. But anecdotal accounts abound of those whose positive spirits seem to have made a difference and who were determined to be there for important life-cycle events.
"I want to be able to hold this baby," Claire said of her grandchild, due in the fall. "I want to do all the things a grandma's supposed to do. I'm determined. You ain't seen the last of my face yet."
Rizvi's approach stands in contrast to that of a group of doctors who treated Claire briefly during an emergency last month--an episode that her family would prefer to forget. But it is a compelling example of how some health professionals convey information about seriously ill patients to their loved ones.
Claire was having difficulty breathing one night. Rather than make the long drive to Georgetown University Medical Center, she rushed to an emergency room near her home in Bowie, Md.
There, physicians unfamiliar with the details of her case opened up her chest to drain a buildup of fluid in her lungs. Apparently unprepared for the extent of the cancer, they pronounced her case terminal.
"I've got bad news for you," Christine recalls the doctors telling the group, which also included her fiance, Joe Kelly, and her younger sister, Carole. "The whole lung is covered with cancer. She has only six months to a year."