Giving the Bad News
by Judy Bachrach
AUGUST 25, 2009 TAGS:
Let’s imagine you are diagnosed with a terminal illness. And you have, say, just one or two years left to live. Or less. Do you want your physician to deliver the news to your face? And if so, when? And how?
Bluntly? As in: “Are you a fast writer? Good, because your will needs to be written in, tops, four weeks.” Or should the delivery of bad news to be accompanied by Hallmark euphemisms? (There are, for instance, hospices where the word death is hardly ever uttered. “Your father just passed” was the preferred mode of news delivery at the last place I volunteered. A visitor might have been pardoned for thinking the main complaint was kidney stones.)
Whatever your personal preferences, receiving news of your imminent demise from a doctor is a situation you’ll likely never have to face. And not because you’re not going to die. Or because you are likely to die peacefully in your sleep or suddenly and without notice on a super-highway, when a truck hits your hybrid. Only 10 percent of the population gets a speedy final exit. In 1990 cancer actually out-gunned heart disease as the No. 1 killer of Americans younger than 85. So what this means is, you will probably die slowly, only no one in the medical profession will want to tell you how bad things really are.
According to a recent federally funded survey run by the Dana-Farber Cancer Institute in Boston, two-thirds of all terminally ill cancer patients never hear the D-word from their doctors at all. And not just cancer patients. I have talked to Alzheimer’s specialists, internists, and surgeons – and their general consensus is: You’re better off not knowing. Even if you think otherwise. And anyway, most doctors don’t want to talk to you about it.
“Yes, isn’t it awful,” says Erika Schwartz, a New York internist, who also happens to be the medical director of the insurance company Cinergy. “This is what happens: Death is something you are trained from medical school on to fight against. You get to be the kind of person who thinks: Nobody dies on my shift!
“And so if somebody is really dying,” she adds, “the doctor gets the feeling that death is a personal insult – an insult to the doctor! You don’t want to admit to the fact that the death of a patient is even possible, because it represents your failure.”
However, not all reluctance to deal candidly with terminally ill patients stems from wounded pride – or a sense of failure --on the doctor’s part. Howard Fillit, a nationally renowned specialist in Alzheimer’s disease, explains there are other reasons he almost never tells an Alzheimer’s patient the hard truth about the neurodegenerative illness, which is both progressive and fatal. And, he adds, in this determination to muzzle the hard truth he is not alone.
“Most of the time – and most doctors agree with this – we don’t use the A-word with patient because it’s very scary. The person is cognitively impaired. So there’s not a lot of value to say, ‘You’ve got Alzheimer’s’ if there is memory loss – I mean, the person might not even remember later what you just told them. Or the person might not comprehend what you’re saying as you’re saying it.”
However, Dr. Fillit adds, he always insists on seeing such patients with a caregiver, a friend, spouse or relative, and that person might get the full brunt of the bad news – at some point. “I just don’t want to scare the caregiver on the first or second visit,” he says. “For me to tell someone, ‘Your husband will eventually be unable to walk, unable to eat, and will need a feeding tube; he will have swallowing problems and likely get pneumonia from aspiration’ – that’s horrible news. I have to spend a lot of time educating the caregiver.”
A pause. “And sometimes I never tell people the hard truth in great detail. What’s the point of loading people up with horrible news that might not happen for seven years? I may say, ‘This is going to be a long course; eventually your loved one will be completely dependent and may die from this disease.’”
He will try, in other words, to avoid specifics.
But here’s the problem with physician reticence. According to the Dana-Farber Cancer Institute report conducted by Alexi Wright, a hematology-oncology physician, patients who’ve had candid end-of-life discussions with their doctor are no more likely to feel depressed than those who’ve been deprived of such discussions. They are also less likely to demand invasive, useless and costly end-of-life care. In fact, Dr. Wright has described such frank talks with the terminally ill as producing “cascading benefits for patients and their caregivers.”
By “cascading benefits,” Wright means that after being handed the gift of truth, the dying can tell those they trust what kind of end-of-life treatment they want -- or don’t want. And relatives and spouses don’t have to feel ignorant (or, worse, guilty) about making medical choices for the terminally ill as the end approaches.
Are there risks associated with such doctor-patient talks? Yes, indeed – and once again because of the doctors. As Jane Brody reveals in her excellent Guide to the Great Beyond, in one study of terminally ill patients, 63 percent of doctors’ survival predictions were found to be overly optimistic. In another study of cancer patients under hospice care, the average person, despite being assured of three months more of life, died after 23 days. Doctors, as Dr. Elizabeth B. Lamont and Dr. Nicholas A. Christakis wrote in the Journal of the American Medical Association, might harbor, however unconsciously, an emotional attachment to a dying individual and therefore an understandable desire to shield that patient from the truth.
“We’re not fortune-tellers, we’re doctors, and I can’t tell you for sure if you’re going to die this month, or in 20 years,” the internist Erika Schwartz concedes. Nonetheless over the years, she’s learned how to deal with terminally ill patients, what to tell them and how to tell it. Some years ago she told a woman in her 60s that she had metastatic breast cancer.
“I said to her, ‘The difference between you and me is, I don’t know what will kill me, not yet. While you do know what you’re probably going to die of.’
“This woman said to me, ‘But I want to see my family gathered around the table on Thanksgiving, and I just don’t know if I’ll live that long.’
“I said, ‘You know what? Why not have Thanksgiving this week, just make it Thanksgiving, and invite the whole family!’ And she did. And I went to visit her once a week for six months until she died. We really got to know each other. The relationship between her and me was so rewarding, I really mourned her when she died.”
Dr. Schwartz concedes she was never trained by what she calls “conventional medicine” to be this frank and open with the dying. And Dr. Fillit, the Alzheimer’s specialist, says much the same. But here’s what happens when I ask Dr. Fillit the question that has been bugging me since we first started talking:
“Should you some day be diagnosed with a disease resulting in severe cognitive difficulties and then death, would you want to know?”
“Yes, I would want to know,” comes the doctor’s reply, “because then I could jump out the window.”
“You’re serious?”
“Yes. Well, maybe I’m being a bit facetious. But I’m not sure I would want to live a long time in a state of dependency and cognitive impairment.”
He is, in other words, just like the rest of us.
Bluntly? As in: “Are you a fast writer? Good, because your will needs to be written in, tops, four weeks.” Or should the delivery of bad news to be accompanied by Hallmark euphemisms? (There are, for instance, hospices where the word death is hardly ever uttered. “Your father just passed” was the preferred mode of news delivery at the last place I volunteered. A visitor might have been pardoned for thinking the main complaint was kidney stones.)Whatever your personal preferences, receiving news of your imminent demise from a doctor is a situation you’ll likely never have to face. And not because you’re not going to die. Or because you are likely to die peacefully in your sleep or suddenly and without notice on a super-highway, when a truck hits your hybrid. Only 10 percent of the population gets a speedy final exit. In 1990 cancer actually out-gunned heart disease as the No. 1 killer of Americans younger than 85. So what this means is, you will probably die slowly, only no one in the medical profession will want to tell you how bad things really are.
According to a recent federally funded survey run by the Dana-Farber Cancer Institute in Boston, two-thirds of all terminally ill cancer patients never hear the D-word from their doctors at all. And not just cancer patients. I have talked to Alzheimer’s specialists, internists, and surgeons – and their general consensus is: You’re better off not knowing. Even if you think otherwise. And anyway, most doctors don’t want to talk to you about it.
“Yes, isn’t it awful,” says Erika Schwartz, a New York internist, who also happens to be the medical director of the insurance company Cinergy. “This is what happens: Death is something you are trained from medical school on to fight against. You get to be the kind of person who thinks: Nobody dies on my shift!
“And so if somebody is really dying,” she adds, “the doctor gets the feeling that death is a personal insult – an insult to the doctor! You don’t want to admit to the fact that the death of a patient is even possible, because it represents your failure.”
However, not all reluctance to deal candidly with terminally ill patients stems from wounded pride – or a sense of failure --on the doctor’s part. Howard Fillit, a nationally renowned specialist in Alzheimer’s disease, explains there are other reasons he almost never tells an Alzheimer’s patient the hard truth about the neurodegenerative illness, which is both progressive and fatal. And, he adds, in this determination to muzzle the hard truth he is not alone.
“Most of the time – and most doctors agree with this – we don’t use the A-word with patient because it’s very scary. The person is cognitively impaired. So there’s not a lot of value to say, ‘You’ve got Alzheimer’s’ if there is memory loss – I mean, the person might not even remember later what you just told them. Or the person might not comprehend what you’re saying as you’re saying it.”
However, Dr. Fillit adds, he always insists on seeing such patients with a caregiver, a friend, spouse or relative, and that person might get the full brunt of the bad news – at some point. “I just don’t want to scare the caregiver on the first or second visit,” he says. “For me to tell someone, ‘Your husband will eventually be unable to walk, unable to eat, and will need a feeding tube; he will have swallowing problems and likely get pneumonia from aspiration’ – that’s horrible news. I have to spend a lot of time educating the caregiver.”
A pause. “And sometimes I never tell people the hard truth in great detail. What’s the point of loading people up with horrible news that might not happen for seven years? I may say, ‘This is going to be a long course; eventually your loved one will be completely dependent and may die from this disease.’”
He will try, in other words, to avoid specifics.
But here’s the problem with physician reticence. According to the Dana-Farber Cancer Institute report conducted by Alexi Wright, a hematology-oncology physician, patients who’ve had candid end-of-life discussions with their doctor are no more likely to feel depressed than those who’ve been deprived of such discussions. They are also less likely to demand invasive, useless and costly end-of-life care. In fact, Dr. Wright has described such frank talks with the terminally ill as producing “cascading benefits for patients and their caregivers.”
By “cascading benefits,” Wright means that after being handed the gift of truth, the dying can tell those they trust what kind of end-of-life treatment they want -- or don’t want. And relatives and spouses don’t have to feel ignorant (or, worse, guilty) about making medical choices for the terminally ill as the end approaches.Are there risks associated with such doctor-patient talks? Yes, indeed – and once again because of the doctors. As Jane Brody reveals in her excellent Guide to the Great Beyond, in one study of terminally ill patients, 63 percent of doctors’ survival predictions were found to be overly optimistic. In another study of cancer patients under hospice care, the average person, despite being assured of three months more of life, died after 23 days. Doctors, as Dr. Elizabeth B. Lamont and Dr. Nicholas A. Christakis wrote in the Journal of the American Medical Association, might harbor, however unconsciously, an emotional attachment to a dying individual and therefore an understandable desire to shield that patient from the truth.
“We’re not fortune-tellers, we’re doctors, and I can’t tell you for sure if you’re going to die this month, or in 20 years,” the internist Erika Schwartz concedes. Nonetheless over the years, she’s learned how to deal with terminally ill patients, what to tell them and how to tell it. Some years ago she told a woman in her 60s that she had metastatic breast cancer.
“I said to her, ‘The difference between you and me is, I don’t know what will kill me, not yet. While you do know what you’re probably going to die of.’
“This woman said to me, ‘But I want to see my family gathered around the table on Thanksgiving, and I just don’t know if I’ll live that long.’
“I said, ‘You know what? Why not have Thanksgiving this week, just make it Thanksgiving, and invite the whole family!’ And she did. And I went to visit her once a week for six months until she died. We really got to know each other. The relationship between her and me was so rewarding, I really mourned her when she died.”
Dr. Schwartz concedes she was never trained by what she calls “conventional medicine” to be this frank and open with the dying. And Dr. Fillit, the Alzheimer’s specialist, says much the same. But here’s what happens when I ask Dr. Fillit the question that has been bugging me since we first started talking:
“Should you some day be diagnosed with a disease resulting in severe cognitive difficulties and then death, would you want to know?”
“Yes, I would want to know,” comes the doctor’s reply, “because then I could jump out the window.”
“You’re serious?”
“Yes. Well, maybe I’m being a bit facetious. But I’m not sure I would want to live a long time in a state of dependency and cognitive impairment.”
He is, in other words, just like the rest of us.
RELATED CONTENT
TO ADD A COMMENT, PLEASE FIRST SIGN IN OR REGISTER.
