© 1998 by Oxford University Press
Everyone dreads it, and for Gregory White Smith it happened at the Mayo Clinic during the holidays in 1986. The rare, inoperable tumor lodged in his brain was killing him, said his oncologist. He wouldn't live to see the following spring, let alone another Christmas.
"It was such a blindside, and it put me in a position I never expected to find myself in," Smith said recently. "It was a lot like that 60 Minutes watch. I could hear the ticking."
As it turned out, Smith wasn't running out of time so dramatically. He's seen every holiday since that diagnosis. But during the winter of 1986, he didn't know that. After being given a death sentence, Smith retreated to his hotel room and binged on pastries and bad TV.
"It was part denial, part disbelief, part defiance, part anger," he said. All these emotions flooded his rationality. He floated through the season, not telling his family, avoiding thoughts of the mass of miswired cells and twisting capillaries pressing against his brain, robbing him of a future.
"Most physicians don't understand how a patient receives this information," said Smith, who last year published an award-winning book, Making Miracles Happen, that chronicles patients who outlive all expectations. "They may think they're saying all the right qualifiers, but patients only hear the end of the sentence. They only hear the time they have left."
It's a touchy topic, painful for all involved. Doctors say it's the hardest part of their job. Some patients say they want to know everything about their disease. Others do not want to hear anything about it. How does a doctor know what to say?
The Patient's Choice
"Absolutely it's the patient's call" whether they want an estimate of their time remaining, said Arthur Caplan, Ph.D., director of the Center for Bioethics at the University of Pennsylvania, Philadelphia. Everyone interviewed for this story -- doctors, patients, family members -- agreed with Caplan. But knowing whether a patient wants to hear a doctor's best guess can be tricky.
"If I am asked directly about 'how long do I have to live'. . . I first ask a few questions to determine if they really want a specific answer," said Walter Hunter, M.D., medical director of Hospice of Michigan, which cares for upwards of 1,000 terminally ill patients.
After Hunter is convinced the patient wants a response, he cautions that there is no way to know for sure, then estimates "in terms of days, weeks, months." He factors in the outcomes of similar cases and any viable individual differences, then emphasizes the importance of "living in the here and now."
Though patients are entitled to full information, "some don't want to hear until they're ready to hear, and they find this kind of conversation robs them of hope," said Caplan. And "there are certainly some cultural groups and ethnic groups who do not want to discuss it because they think it's arrogant and even may make death happen if you talk about it." Doctors need to be alert to this possibility, said Caplan.
From the point of view of the family, having a concrete time frame can spur end-of-life decisions and help everyone make the most of limited time. "It gave us time to say goodbyes," said Janet Ragland of Dallas, referring to when a doctor had said her father had "between 6 months and a year." And "it helped him to take care of funeral arrangements immediately," while he was still alert, she added.
But while some family members are grateful when doctors put boundaries on their loved one's life expectancy, others get upset when doctors are hesitant to do the same.
Last year Nick Mascari of Brockport, N.Y., watched his 80-year-old mother deteriorate from pancreatic cancer. He wanted to know about how long he had left with her, but the doctors would not say.
"From the point of view of the family, it's frustrating because you're emotional, and because you're trying to be pragmatic and figure everything out," said Mascari, referring to inheritance issues and other last wishes. "A realistic estimate would have helped us plan."
No Patient Is a Median
Perhaps the doctors felt they could not accurately assess how much time Mascari's mother had -- many doctors say it's more of an art than a science. Because for even the most textbook case of intractable cancer, some patients -- like Smith who is still living with hemangiopericytoma -- survive longer than expected. Lung cancer, for instance, claims 60% of patients within a year of diagnosis and 86% within 5 years. But that still leaves 14% alive long enough to be considered cured.
"Doctors are not that wonderful at predicting survival," said Caplan. "They certainly can predict when people have a very short time to live . . . but the amount of time for each patient is tough to predict."
However, Caplan backtracked and added doctors have to consider the odds, not the outliers. Patients like Smith who outlive all expectations are "almost a statistical oddity. You don't want to sort of set the default of discussion with the outliers. You have to set it for the main population."
That sentiment seems cold-hearted to some.
"I have lost count of the times I have chided students or residents about telling a patient they had '6 months to live,' " writes Margaret Tempero, M.D., a clinical oncologist at Eppley Cancer Center, Omaha, in the book Communication with the Cancer Patient. "What do statistics about a group of patients really predict for a single individual? For that patient . . . there is no median. . . ."
Tempero's point is well-made. Patients are individuals, and intangible factors such as what some call "the will to live" vary widely and are largely unknowable.
Colliding With Reality
It is for this very reason that clinicians like M. Sheldon Polsky, M.D., a San Antonio urologist, are tight-lipped about patients' life expectancies. Polsky is lucky in that he does not consider "99 percent" of his prostate cancer patients terminal. And for the cases that are, he does not lay out a timeline.
"I only see that in movies," said Polsky. "I tell them 'I just can't tell,' and say that there's no way I can know. It's the worst part of my job."
This dread that goes along with talking to potentially terminal patients may prompt doctors to avoid communication, something desperately ill patients need. For patients to understand the stage of their illness, the range of available treatments, and the pluses and minues of each option may take many conversations.
Horror Stories
And despite the horror stories Smith has heard of doctors saying -- " 'You have a year at most.' End of conversation." -- most doctors he has dealt with make time for the critically ill. "The ones who are good doctors understand that they owe the patient some time," he said.
Besides avoidance, another way doctors deal with breaking such horrible news is to put a positive spin on it. It's human nature to see the chances for success, says Tempero, and patients have a right to keep that hope: "We are charged with delivering good medical care but not with . . . taking away someone's hope."
However, Caplan argues that sometimes the message -- you're dying -- gets lost. "People . . . shy away from the subject too often or dress it up in hopeful language" so that patients do not understand what's being said.
He continued, perhaps in defense of wavering doctors, that "human nature collides at the bedside of a very sick person. People want to talk positively."
This assertion is at least partially borne out by a June 3, 1998, Journal of the American Medical Association article that examined how cancer patients' views of their time-to-death influenced their treatment choices. The study found late-stage lung and colon cancer patients tend to "overestimate their survival probabilities." This optimism steers some to prefer risky, toxic treatments over palliative care.
Both Polsky and Tempero said that it is the doctor's job to ensure very sick patients are as comfortable as possible.
In these situations, Polsky often says, "I've reached the end of what I can do," then offers to search for a clinical trial. Tempero calls this providing "a gift of information for others."
That's just the kind of gift Smith is giving. After spending years sleuthing for clinicians who could treat his tumor, he and partner Steve Naifeh founded Best Doctors, Inc. The Aiken, S.C., company researches and catalogs world-experts in peculiar, rare illnesses, then publishes them in The Best Doctors in America and provides specialized searches for a fee.
Smith sympathizes with doctors like those who gave him his 3-month death sentence 12 years ago. He knows their job is difficult. But he thinks every doctor and medical student needs to prepare for similar situations.
"I imagine that no two patients are the same," he said. "The good doctors constantly make judgments and know how to deal with every kind of patient . . . from those who are chasing rainbows to those in complete denial."
-- Brian Vastag
Days, Weeks, or Months: When to Say How Long?
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