It's a conversation that most people dread, doctors and patients alike. The cancer is terminal, time is short, and tough decisions loom — about accepting treatment or rejecting it, and choosing where and how to die.
When is the right time — if there is one — to bring up these painful issues with someone who is terminally ill?
Guidelines for doctors say the discussion should begin when a patient has a year or less to live. That way, patients and their families can plan whether they want to do everything possible to stay alive, or to avoid respirators, resuscitation, additional chemotherapy and the web of tubes, needles, pumps and other machines that often accompany death in the hospital.
But many doctors, especially older ones and specialists, say they would postpone those conversations, according to a study published onlineMonday in the journal Cancer.
It's not entirely clear whether these doctors are remiss for not speaking up — or whether the guidelines are unrealistic. Advice that sounds good on paper may be no match for the emotions on both sides when it comes to facing patients and their families and admitting that it will soon be over, that all medicine can offer is a bit of comfort while the patient waits to die.
Dr. Nancy L. Keating, the first author of the study and an associate professor of medicine and health care policy at Harvard, said not much was known about how, when or even if doctors were having these difficult talks with dying patients. But she said that her research team suspected that communication was falling short, because studies have shown that even though most people want to die at home, most wind up dying in the hospital.
The researchers surveyed 4,074 doctors who took care of cancer patients, instructing them to imagine one who had only four to six months left, but was still feeling well. Then the doctors were asked when they would discuss the prognosis, whether the patient wanted resuscitation or hospice care, and where he or she wanted to die.
The results came as a surprise: the doctors were even more reluctant to ask certain questions than the researchers had expected. Although 65 percent said they would talk about the prognosis "now," far fewer would discuss the other issues at the same time: resuscitation, 44 percent; hospice, 26 percent; site of death, 21 percent. Instead, most of the doctors said they would rather wait until the patients felt worse or there were no more cancer treatments to offer.
They were not asked for their reasoning, but Dr. Keating offered several possibilities. One is that doctors may disagree with the guidelines, which are based on expert opinion rather than data.
"Or they may not be comfortable discussing it," she said. "These conversations are time-consuming and difficult. Some doctors may feel patients will lose hope. It's easier to say, 'Let's try another round of chemotherapy,' instead of having a heart-to-heart discussion." Training may also be a factor, Dr. Keating said. Medical schools spend more time on end-of-life issues than they did in the past, and the greater willingness of younger doctors to broach the subject may reflect that change.
Dr. Daniel Laheru, an associate professor at the Kimmel Cancer Center at Johns Hopkins and a specialist in pancreatic and colorectal cancers, said he was not surprised by the study.
"The natural tendency is not to provide more information about this than you have to," he said. "It's such an uncomfortable conversation and it takes such a long time to do it right."
He added, "People come to us with hope, and if you kind of yank that away from them right away, it's very unsettling."
A terminal diagnosis plus the grim details of "do not resuscitate" orders and hospice care may be too much for a patient to hear in one day. Dr. Laheru said he tried to prepare patients on their first visit for the idea that during later visits they would discuss different possible outcomes.
"They don't always hear that part," he said.
Dr. John Boockvar, a neurosurgeon at NewYork-Presbyterian/Weill Cornell Medical Center who treats many patients with malignant brain tumors, said he favored postponing such discussions until the end was drawing close. During his own late father's illness with leukemia, he said, his family was upset by an oncologist who brought up end-of-life issues early.
"As a patient and a family member, I don't know if I would have wanted to hear a doctor say, 'In 18 months we'll be dealing with hospice or end-of-life discussions — do you want to have that discussion now?' " Dr. Boockvar said. "I don't know what the emotional benefit is to the family. I don't think it's been studied."
As a doctor treating patients who are terminally ill, he went on, he did not hesitate to discuss end-of-life issues. But he said, "As the time approaches, there's usually ample time."
But Dr. David R. Hilden, an internist at Hennepin County Medical Center in Minneapolis and an assistant professor of medicine at the University of Minnesota, is not so sure.
"I think many of us wait until there's just a few weeks left and then you have no choice," he said. "It's going to happen in a week or two, and they're in the hospital and they're on their last legs. The time to talk is much earlier."
Without planning, Dr. Hilden said, dying patients may wind up in exactly the situation they dreaded most, tethered to machines in a hospital instead of being kept comfortable at home in their own beds.
"This last week, I had a patient with prostate cancer and end-stage heart disease, who probably has less than a year," he said. "I talked to him and his wife. 'How do you want your remaining days to be? How much do you want us to do?' He and his wife were very receptive. Many patients appreciate it. We had a good conversation. It's easier when the patient is older and it's not entirely unexpected. He's 86."
The patient said he did not want tubes or machines, but just wanted to be comfortable for his last few months.
"They were at peace with it," Dr. Hilden said, adding that many patients who get aggressive treatment for advanced cancer might in retrospect have made a different choice.
"They might say: 'After that last three or four months of radiation and chemotherapy, I'm sick, I'm nauseated, my hair fell out and it didn't extend my life. I might not have done it if I'd known, if I had had the chance.' "
Dr. Keating agreed, saying she thought that often when terminally ill patients choose to continue chemotherapy, they don't understand its limits.
"They say, 'I want to do everything,' and they mean 'everything to cure me,' " she said. "They don't understand it's not curative."
Despite the difficulties, she went on, doctors should level with their patients.
"When you know someone's going to die of their disease, it's only fair to the patients to help them understand that," Dr. Keating said. "But these conversations are very challenging. Figuring out how to do it well — it's so tricky. It's definitely not something everybody believes in."
