COLUMN ONE : What to Do When the News Is Bad : How patients react to a grim prognosis can be as variable as the human spirit. For doctors, it raises the question of how--and how much--the seriously ill should be told.
Anne was 62 and had fought metastatic breast cancer for three years, always agreeing to any treatment that might prolong her life and asking no questions about what would happen if she refused therapy. Then, during a checkup one day, her doctor almost offhandedly told her: “You know you’re terminal, don’t you?”
She died less than two weeks later.
The news Greg Anderson received was even more direct. The Fullerton man was told his lung cancer was so advanced he had 30 days to live.
Nine years later, Anderson is alive and well.
How people react to a dreaded prognosis is as variable as the human spirit, say health experts. The very words the doctor chooses to convey a patient’s chances--and the timing of the conversation--are almost as important as the diagnosis itself. This delicate exchange can influence the type of treatments chosen or rejected and--perhaps as importantly--the patient’s attitude.
This disclosure is also the core of the informed-consent doctrine of medicine, a body of laws meant to ensure that “patients might meaningfully exercise their right to make decisions about their own bodies,” said USC law professor Alexander M. Capron, an expert on medical ethics.
But just what that means between two people in the confines of a doctor’s office has generated great controversy. The issue is further clouded by the lack of precision in statistics that doctors rely on to explain patients’ chances. And sometimes, patients may confuse the messenger and the message, reacting to a grim prognosis by blaming the doctor.
In a ruling last week, the California Supreme Court said doctors must give seriously ill patients enough information to make intelligent decisions about treatment but are not obligated to disclose the statistical chances of dying--even if patients ask.
Patient advocates have criticized the ruling, saying doctors have no right to withhold any information requested by a patient. Moreover, they say, the ruling could inhibit pursuit of aggressive therapies that could lengthen someone’s life.
But many patients call informed consent a double-edged sword. A bigger problem than not being told the truth, they say, is being clobbered by it.
Although doctors may feel they are being candid, receiving a bleak assessment of the future sends many seriously ill patients into an emotional and physical tailspin, said psychologist Marc Schoen, director of the Psychoimmune Program at Cedars-Sinai Medical Center.
“In a lot of cases, it causes people to just give up,” he said. “The flip side is the people who respond by saying, ‘I’ll show you.’ It ignites them. It’s just the motivation they need to fight.”
But the first reaction is more common, Schoen said, because negative suggestions are intensely powerful.
“If people are told they are not going to get better, that has an amazing effect,” he said.
Last week’s court decision was prompted by the case of Miklos Arato of Studio City, who was found to have pancreatic cancer in June, 1980, but was not told by doctors that he had a 50% chance of living one year.
After Arato died at 42, one year later, his family sued the doctors, saying that had he been told his chances were poor, he would have refused painful medical treatment and put his financial affairs in order.
But doctors argued that they received mixed signals from Arato about how much he wanted to know. They claimed that the survival statistics were unreliable and that they did not want to deprive Arato of any hope of surviving. Advising the electrical contractor that he should consider putting his affairs in order, they said, was not among their duties.
The court ruled that doctors should conform to common practices in the medical community and disclose enough information for the patient to make intelligent choices about treatment. That decision gives doctors latitude to do what they think is best for their patients, said Dr. Stephen Forman, director of bone marrow transplantation at City of Hope National Medical Center in Duarte.
“Communication is at the essence of the doctor-patient relationship, and you have to be sensitive to what a patient needs to know and when,” Forman said. “I’m not surprised that the court has backed away from trying to codify what comes down to human behavior.”
But USC’s Capron contends that the Arato decision could be interpreted as downplaying the significance of a close doctor-patient relationship. Over the course of treatment, a doctor usually has the opportunity to learn about the patient’s life and needs, he said.
“Physicians can educate themselves about how to convey to a patient, at an appropriate pace, as much information as the patient needs,” Capron said.
“There should be a genuine conversation back and forth between the physician and the patient. This is not something quick and easy.” Doctors have no way to predict how a patient might react to unsettling news.
“Doctors are in a real quandary too,” Schoen said. “They often want to tell a patient something, but they don’t know if they should. I think it’s a tough place doctors are in.”
Forman said oncologists are often well-prepared to communicate with seriously ill patients, but many doctors are uncomfortable in such situations. Medical schools need to offer more training in this area, he said.
“When I give someone bad news, I also like to link it with what we’re going to do to make it better,” said Dr. Barry Rosenbloom, an oncologist affiliated with Cedars-Sinai. “To just give the bad news is a terrible blow to most people. I try to avoid giving bad news without saying what we are going to do to help.
“As I get to know people better, I usually know how they might react,” he added. “On the other hand, with someone I’m meeting for the first time or have only met recently, I may not know. So I’m very careful in how I break the news. I don’t feel I have the right to come on very strong.”
Rosenbloom, who says he always feels trepidation when he discusses a patient’s prognosis, noted one thing he has learned: “A few times I have had people say, ‘You have to tell it to me straight. I’ve got to know.’ That has always backfired. Most people want to know there is some hope or that we have some ability to help them. I think when people say, ‘Give it to me straight, doc,’ they don’t really want to hear some terrible news.”
A complaint among some patients is that doctors are sometimes insensitive to their feelings at the time they disclose a prognosis.
Being truthful with a patient is important, said Ronnie Kaye, 50, a Los Angeles psychotherapist. But the truth can hurt.
Kaye saw her doctor three months after surgery for breast cancer.
“I was feeling very good. And my doctor said to me, ‘You’re looking good.’ He told me to go into the exam room. Then, in the exam room, he said, ‘You know you have a 30% chance of recurrence within the next couple of years,’ ” Kaye recalled.
Immediately, said Kaye, she felt her optimism over her health fading. “I was furious. I said to him, ‘Why bring me down after I came in here feeling so good and had had a good checkup?’ ”
Kaye found a new doctor.
As part of the informed-consent process, most doctors try to provide their patients with ample information about their conditions. But, said City of Hope’s Forman, it is rarely in the best interest of patients to hear a lecture full of statistics, treatments and options on the day they receive a diagnosis.
Arlyne Draper, 53, had surgery for cancer in her left breast in 1977. Thirteen years later, the cancer recurred in her right breast. The doctor sat down with Draper and her husband and told them the cells were “very aggressive.”
“My doctor said, ‘If you don’t have chemotherapy your chances will be 40%,’ ” recalled Draper, of San Diego. “He went on rattling statistics. My husband got very upset and finally interrupted him and said, ‘If we have to sit here and listen to you rattling statistics instead of telling us what we can do to save my wife’s life, we’ll change doctors.’ ”
Draper was also upset and later wrote a letter to the doctor, saying: “To me, you are the bearer of bad news. I need a doctor who will help me in my desire to get well.”
The doctor apologized.
“I don’t think statistics should be given at the time when you’re first diagnosed,” Draper said. “You’re in shock. You need time to assimilate the information.”
Dr. Cary Presant, president of the American Cancer Society in California, said doctors are deeply affected by giving bad news to patients. He says he relies on his family and colleagues for support and tries to learn from his patients. In one case, Presant treated a young psychologst with advanced lung cancer. The man decided to make a film to show others how they might cope with this disease.
“It was one of the most moving experiences of my life to see how he adjusted to this,” Presant said. “I’ve used much of what I learned from him with other patients. . . . He was able to set goals for what he was able to achieve. That is what I do with other patients, try to get them to set goals.”
Cedars psychologist Schoen said that what patients believe to be true about their conditions can affect how they respond physically. Schoen once counseled a man who had been treated for colon cancer. The man was due for a checkup a few days later.
“When I saw him, he told me: ‘I have never felt better in my life.’ Two days later, he went to the doctor and they found (cancer) in his liver during a test. The doctor told him he was not going to survive this. Within a week, he died. He gave up,” Schoen said.
Gayle McKenna, 49, was devastated when her doctor told her in 1986 that her ovarian cancer was so advanced she would probably live for only six months.
Instead of absorbing the statistics, McKenna said, her mind raced with thoughts of getting away from the doctor.
“I decided I was not going to accept that prognosis, and I went to another doctor,” said the Studio City woman. McKenna endured nine months of chemotherapy and is in remission.
“I really felt that if I had believed that first doctor, I would have been dead within six months,” she said.
Greg Anderson’s experience convinced him that statistics have no place in a prognosis. “Statistics are almost always interpreted negatively,” he said.
Anderson, 45, received a diagnosis of lung cancer in 1984 and was told he had about 30 days to live. But Anderson found literature on lung cancer that put his chances of beating the disease at 5%.
“At first I was hugely depressed. Then, as I thought about it, it made me decide to do everything I could to be in that 5%. But most people don’t make it that far. Most get bogged down in despair,” said Anderson, who went on to found the Cancer Conquerors Foundation, a patient education organization in Fullerton.
Doctors should communicate a prognosis “with maximum hope,” he says.
There is ample research on the importance of a patient’s outlook in influencing the course of illness, said Harold Benjamin, president of Wellness Community, National, an organization that provides counseling and support for the seriously ill. For example, one study has shown breast cancer patients in support groups had better survival rates than other women.
Because of this psychological factor, he said, doctors should not drop statistics on patients unless asked.
“If pressed, doctors should say, ‘Every individual is different, and your situation may be completely different. However, if you really want to know what the statistics are, these are the statistics,’ ” Benjamin said.
But, he warns, there is a credo at the Wellness Community: “Don’t ask the question unless you’re fully prepared for the answer.”
Proponents of using survival statistics as part of informed consent acknowledge it is a thorny issue. But they contend these very statistics are often necessary to try to extend life, or at least help prepare the person for death.
Although McKenna says being told she had six months to live was horrifying, it also made her reach for treatment beyond the status quo. She turned to a specialized cancer treatment and research center.
“If patients know (that time may be limited), then they would have the opportunity to try experimental or alternative medicines,” McKenna said. “If I hadn’t been told I had six months, I would have been cheated from the opportunity to try something else.”
But the problem with statistics, many say, is that they have nothing to do with an individual patient.
“Giving a single statistic is often not very helpful. It just gives you the average patient, and there is no such thing as an average patient,” said David Orentlicher, the ethics and health policy counsel to the American Medical Assn.
Statistics, or outcomes, vary by region, the doctor’s training and other factors, say medical experts.
“We cannot do what the public thinks we can do with statistics,” said Dr. Joanne Lynn, a statistics expert at Dartmouth Medical School. “People think they are going to get something that maps out their life plan, rather than something that is more like the odds. They think that doctors have a real clue, and they don’t.”
Efforts are being made to improve statistics, Lynn said. In one study already under way, data on 10,000 patients will be analyzed to look at how a prognosis is made, what the outcome is and what patients understand about their conditions.
But no matter how uncertain statistics are now, they are often the sole basis for deciding what to do about an illness, said Ellen Moskowitz, an associate with the Hastings Center, a New York research institute that examines ethical issues in medicine.
“Patients have the right to choose between different courses of care: more aggressive versus less aggressive,” she said. “They would be unable to do that if they don’t have full disclosure of information.”
