doctor communication, oncology
Doctors Learn How to Say What No One Wants to Hear
By ABIGAIL ZUGER;January 10, 2006;NYTimes
ASPEN, Colo. - In one room, a woman sobs into her hands after learning that her breast cancer has spread to her liver. Next door, a young man cured of lymphoma two years ago listens impassively to the news that his disease is back. Down the hall, a grizzled middle-aged hardware store owner hears that despite radiation treatment his prostate cancer is now in his bones.
"You sure of that?" he says incredulously to the young doctor breaking the news. "You sure those were my films?"
It could be any hospital's outpatient clinic. Instead, it is a small experiment in teaching cancer doctors to do the hardest part of their job: not doling out radiation and chemotherapy but caring for the patients who fail these treatments. The patients in this case are actors but the doctors are all real: young oncologists who converged at this off-season ski resort for a five-day course in how to talk to patients about the worst possible news.
All doctors have these talks from time to time, but cancer doctors face more than their share. According to one estimate, over the course of a career an oncologist will break bad news to patients about 20,000 times, from the first shocking facts of the diagnosis to the news that death is near.
Despite all the practice, it is the rare doctor who is any good at these discussions. And while some medical schools now offer basic communication courses, more sophisticated training for specialists is uncommon. One recent survey found that less than a third of oncology training programs attempted any form of communication training; only about 5 percent of practicing oncologists have had any.
"The general feeling has been that these are not teachable skills - that either you have it or you don't," said Dr. Anthony Back, an oncologist at the Fred Hutchinson Cancer Research Center in Seattle.
Not only do most doctors not have it, Dr. Back said, but those who do generally hone their skills by trial and error, saying all the wrong things until they find the right ones, leaving a trail of tangled miscommunications and alienated patients.
Five years ago, Dr. Back and four colleagues obtained a $1.4 million grant from the National Cancer Institute to devise a better way.
What they have created is a short immersion course in the language of bad news, one which, like all good language courses, leaves the lecture hall far behind. Instead, students spend their time with native speakers - in this case, four preceptors, or teachers, who are experts in medical communication and five actors who stay in the roles of patients with terminal illness for the duration of the course, each growing sicker as the days go on.
With actors instead of real patients, the doctors can make mistakes, redo and reword their thoughts and get feedback on how best to deliver such lines as, "I'm afraid there's no more chemotherapy out there for you," or "probably weeks to months, not years."
When it comes to saying these words, "I don't think patients realize how worried we are," said Dr. Daniel Carrizosa, one of the students, who is completing his oncology training at the University of North Carolina.
Research shows that he is right. For patients, the flood of emotion that comes with bad news drowns out everything else, especially the reasoned intellectual responses that usually guide human interactions.
Scans have actually shown that patients react to upsetting news first with the primitive limbic lobe of the brain that guides the deepest instincts and emotions.
"If a patient is back in her limbic lobe, she's not going to hear a thing you say," said Dr. Walter Baile, chief of psychiatry at M. D. Anderson Cancer Center in Houston and one of the course preceptors.
As a result, the stilted, jargon-ridden, information-packed sentences in which most doctors encase bad news are pointless. Patients remember nothing about them except the fact that the doctor clearly has not a clue what they are experiencing.
But for doctors, learning what to say instead can be grueling.
The 20 doctors who took the course this fall, the eighth group over the last four years, are all receiving advanced oncology training at some of the country's most prestigious hospitals, and they are by any standard among the brightest and most articulate around. They have been taking care of patients for years, and have had hundreds of bad-news conversations.
The fact that they signed up for this course at all shows they are more attuned to communication problems than most.
But even they, when they first come face to face with an actor playing a cancer patient, routinely lapse into the awkward, defensive "medspeak" patients know so well. They mumble about "abnormal laboratory findings," "concerning small shadows," "evidence of some lesions in the bones."
They blurt out long paragraphs of information without stopping for breath. They smile nervously at all the wrong times.
"This is so uncomfortable," said Dr. Biren Saraiya, an oncology fellow at the University of Medicine and Dentistry of New Jersey, searching in vain for the right words to tell a jaunty young man that a routine blood test is abnormal and that the cancer the patient thought he had licked might be back.
"He's young, not much older than me," Dr. Saraiya said. "I am afraid for him. But how afraid should I make him?"
His preceptor, Dr. Robert Arnold, an internist and communications expert at the University of Pittsburgh, suggested: "Name your emotions. And then acknowledge he doesn't have to have the same ones."
Sometimes a phrase like "you pay me to do the worrying" will strike the right note of empathy and concern, Dr. Arnold said. Sometimes, though, it will infuriate a patient who hates to be patronized. So find out who the patient is, he said. Be direct. "Say 'Help me understand your story,' or 'Are you the kind of person who likes to know all the details?' Dr. Arnold said. "Figure out what kind of doctor your patient wants you to be."
Over the week, the students learn helpful phrases for all the landmark conversations of bad cancer, from the first intimation that a cure is not possible to the discussions of how and where patients want to live their last weeks.
Saying, "I wish things were different" can let patients and families know that things are going badly, but emphasize that the doctor is on their side, said Dr. James Tulsky, a palliative care expert at Duke. "Hope for the best; prepare for the worst" can be a useful mantra, too.
The doctors learn never to give bad news while standing up, never to do it in a public corridor, always to have a box of Kleenex at hand. They learn not to try to cheer up patients who have every right to be grief-stricken. They learn to address the reasons behind the question, "How long do I have?" rather than just reciting numbers that are invariably inaccurate.
They also learn every detail of the fictional lives of the five actors they interview daily: the young man with relapsed lymphoma, the young mother with metastatic melanoma, the woman whose bones and liver are riddled with breast cancer.
By the last day of the course, as the actors, visibly enfeebled, lie in bed and the doctors each tell them goodbye, there isn't a dry eye in the house.
"This brings back a lot of memories," said Dr. Raymond Liu, an oncology fellow at the University of California, San Francisco, reaching for the Kleenex himself.
He had just told the patient with terminal breast cancer, played by Jeannie Walla, that he had treasured their time together and that he would miss her.
Ms. Walla told him not to worry about his tears. "For a patient," she said, "it is the most comforting thing you can do."
All good feelings aside, though, this $1.4 million question remains: Does this kind of training work?
The actors, all members of the local Aspen acting community, have now watched eight batches of doctors progress through the course and are enthusiastic. "Sometimes the doctors who show up are so bad you say, 'Oh God, this is hopeless,' " Ms. Walla said. "Then you watch them actually improve."
John Dillon, another actor, said, "No matter what level the doc is at, we see them go up a notch."
For a more formal validation, Dr. Back and his colleagues have accumulated a load of pre- and post-training questionnaires and videotaped interviews, which are still being analyzed.
But the long-term results are anyone's guess. Three months after a similar British course, doctors were still communicating more effectively with their patients.
No one knows whether this kind of training will make any difference after years.
"Right now, it's an effort to do all this," said Dr. Saraiya of New Jersey. "It's hard to add the extra effort. But I'm afraid of losing it."
The key is practice, said Dr. Arnold, who likened learning to talk to patients to learning to ride a bicycle. At the beginning it is impossible, at the end there is nothing to it; in between there is a long wobbly path where the student needs steadying hands at the ready.
"And this is the only way we know how to teach," Dr. Arnold said, "to have five kind people watching you and holding you up."
By ABIGAIL ZUGER;January 10, 2006;NYTimes
ASPEN, Colo. - In one room, a woman sobs into her hands after learning that her breast cancer has spread to her liver. Next door, a young man cured of lymphoma two years ago listens impassively to the news that his disease is back. Down the hall, a grizzled middle-aged hardware store owner hears that despite radiation treatment his prostate cancer is now in his bones.
"You sure of that?" he says incredulously to the young doctor breaking the news. "You sure those were my films?"
It could be any hospital's outpatient clinic. Instead, it is a small experiment in teaching cancer doctors to do the hardest part of their job: not doling out radiation and chemotherapy but caring for the patients who fail these treatments. The patients in this case are actors but the doctors are all real: young oncologists who converged at this off-season ski resort for a five-day course in how to talk to patients about the worst possible news.
All doctors have these talks from time to time, but cancer doctors face more than their share. According to one estimate, over the course of a career an oncologist will break bad news to patients about 20,000 times, from the first shocking facts of the diagnosis to the news that death is near.
Despite all the practice, it is the rare doctor who is any good at these discussions. And while some medical schools now offer basic communication courses, more sophisticated training for specialists is uncommon. One recent survey found that less than a third of oncology training programs attempted any form of communication training; only about 5 percent of practicing oncologists have had any.
"The general feeling has been that these are not teachable skills - that either you have it or you don't," said Dr. Anthony Back, an oncologist at the Fred Hutchinson Cancer Research Center in Seattle.
Not only do most doctors not have it, Dr. Back said, but those who do generally hone their skills by trial and error, saying all the wrong things until they find the right ones, leaving a trail of tangled miscommunications and alienated patients.
Five years ago, Dr. Back and four colleagues obtained a $1.4 million grant from the National Cancer Institute to devise a better way.
What they have created is a short immersion course in the language of bad news, one which, like all good language courses, leaves the lecture hall far behind. Instead, students spend their time with native speakers - in this case, four preceptors, or teachers, who are experts in medical communication and five actors who stay in the roles of patients with terminal illness for the duration of the course, each growing sicker as the days go on.
With actors instead of real patients, the doctors can make mistakes, redo and reword their thoughts and get feedback on how best to deliver such lines as, "I'm afraid there's no more chemotherapy out there for you," or "probably weeks to months, not years."
When it comes to saying these words, "I don't think patients realize how worried we are," said Dr. Daniel Carrizosa, one of the students, who is completing his oncology training at the University of North Carolina.
Research shows that he is right. For patients, the flood of emotion that comes with bad news drowns out everything else, especially the reasoned intellectual responses that usually guide human interactions.
Scans have actually shown that patients react to upsetting news first with the primitive limbic lobe of the brain that guides the deepest instincts and emotions.
"If a patient is back in her limbic lobe, she's not going to hear a thing you say," said Dr. Walter Baile, chief of psychiatry at M. D. Anderson Cancer Center in Houston and one of the course preceptors.
As a result, the stilted, jargon-ridden, information-packed sentences in which most doctors encase bad news are pointless. Patients remember nothing about them except the fact that the doctor clearly has not a clue what they are experiencing.
But for doctors, learning what to say instead can be grueling.
The 20 doctors who took the course this fall, the eighth group over the last four years, are all receiving advanced oncology training at some of the country's most prestigious hospitals, and they are by any standard among the brightest and most articulate around. They have been taking care of patients for years, and have had hundreds of bad-news conversations.
The fact that they signed up for this course at all shows they are more attuned to communication problems than most.
But even they, when they first come face to face with an actor playing a cancer patient, routinely lapse into the awkward, defensive "medspeak" patients know so well. They mumble about "abnormal laboratory findings," "concerning small shadows," "evidence of some lesions in the bones."
They blurt out long paragraphs of information without stopping for breath. They smile nervously at all the wrong times.
"This is so uncomfortable," said Dr. Biren Saraiya, an oncology fellow at the University of Medicine and Dentistry of New Jersey, searching in vain for the right words to tell a jaunty young man that a routine blood test is abnormal and that the cancer the patient thought he had licked might be back.
"He's young, not much older than me," Dr. Saraiya said. "I am afraid for him. But how afraid should I make him?"
His preceptor, Dr. Robert Arnold, an internist and communications expert at the University of Pittsburgh, suggested: "Name your emotions. And then acknowledge he doesn't have to have the same ones."
Sometimes a phrase like "you pay me to do the worrying" will strike the right note of empathy and concern, Dr. Arnold said. Sometimes, though, it will infuriate a patient who hates to be patronized. So find out who the patient is, he said. Be direct. "Say 'Help me understand your story,' or 'Are you the kind of person who likes to know all the details?' Dr. Arnold said. "Figure out what kind of doctor your patient wants you to be."
Over the week, the students learn helpful phrases for all the landmark conversations of bad cancer, from the first intimation that a cure is not possible to the discussions of how and where patients want to live their last weeks.
Saying, "I wish things were different" can let patients and families know that things are going badly, but emphasize that the doctor is on their side, said Dr. James Tulsky, a palliative care expert at Duke. "Hope for the best; prepare for the worst" can be a useful mantra, too.
The doctors learn never to give bad news while standing up, never to do it in a public corridor, always to have a box of Kleenex at hand. They learn not to try to cheer up patients who have every right to be grief-stricken. They learn to address the reasons behind the question, "How long do I have?" rather than just reciting numbers that are invariably inaccurate.
They also learn every detail of the fictional lives of the five actors they interview daily: the young man with relapsed lymphoma, the young mother with metastatic melanoma, the woman whose bones and liver are riddled with breast cancer.
By the last day of the course, as the actors, visibly enfeebled, lie in bed and the doctors each tell them goodbye, there isn't a dry eye in the house.
"This brings back a lot of memories," said Dr. Raymond Liu, an oncology fellow at the University of California, San Francisco, reaching for the Kleenex himself.
He had just told the patient with terminal breast cancer, played by Jeannie Walla, that he had treasured their time together and that he would miss her.
Ms. Walla told him not to worry about his tears. "For a patient," she said, "it is the most comforting thing you can do."
All good feelings aside, though, this $1.4 million question remains: Does this kind of training work?
The actors, all members of the local Aspen acting community, have now watched eight batches of doctors progress through the course and are enthusiastic. "Sometimes the doctors who show up are so bad you say, 'Oh God, this is hopeless,' " Ms. Walla said. "Then you watch them actually improve."
John Dillon, another actor, said, "No matter what level the doc is at, we see them go up a notch."
For a more formal validation, Dr. Back and his colleagues have accumulated a load of pre- and post-training questionnaires and videotaped interviews, which are still being analyzed.
But the long-term results are anyone's guess. Three months after a similar British course, doctors were still communicating more effectively with their patients.
No one knows whether this kind of training will make any difference after years.
"Right now, it's an effort to do all this," said Dr. Saraiya of New Jersey. "It's hard to add the extra effort. But I'm afraid of losing it."
The key is practice, said Dr. Arnold, who likened learning to talk to patients to learning to ride a bicycle. At the beginning it is impossible, at the end there is nothing to it; in between there is a long wobbly path where the student needs steadying hands at the ready.
"And this is the only way we know how to teach," Dr. Arnold said, "to have five kind people watching you and holding you up."