Cancer Patients And Doctors Struggle To Predict Survival
When a doctor tells a patient that she has cancer and has just a year left to live, that patient often hears very little afterward. It's as though the physician said "cancer" and then "blah, blah, blah."
Anxiety makes it difficult to remember details – and the worse the prognosis, the less the patient tends to remember. Recent studies have found that cancer patients retain less than half of what their doctors tell them.
So it's not surprising, perhaps, that a patient with advanced cancer can leave her oncology appointment thinking she has a set amount of time left to live. "The doctor gave me a year," she'll say, as though she were a half-gallon of milk with a "sell-by" date printed on her head.
But prognoses are almost never that clear-cut, despite the fact that patients need to make big decisions based on those numbers. Should she quit her job? Take that dream cruise? Write a living will?
Physicians play a part in the confusion, too. Doctors consistently overestimate how long a patient has to live, according several studies. In one study of terminally ill patients, just 20 percent of physician predictions were accurate. The majority, 63 percent, were overoptimistic.
And if patients think a doctor is doing a good job of communicating with them, they're more likely to be erroneously optimistic about a cure. That can keep patients from fulfilling key goals before they die.
One big challenge is that a prognosis is not an absolute number. Doctors often look up data gathered by the National Cancer Institute or the American Cancer Society, or they will use their own clinical expertise.
The data are typically given as a median, which is different from an average. A median is the middle of a range. So if a patient is told she has a year median survival, it means that half of similar patients will be alive at the end of a year and half will have died. It's possible that the person's cancer will advance quickly and she will live less than the median. Or, if she is in good health and has access to the latest in treatments, she might outlive the median, sometimes by many years.
Doctors think of the number as a median, but patients usually understand it as an absolute number, according to Dr. Tomer Levin, a psychiatrist who works with cancer patients and doctors at Memorial Sloan Kettering Cancer Center in New York. He thinks there is a breakdown in communication between the doctor and patient when it comes to the prognostic discussion.
Levin and other people who work on the social and emotional side of cancer – psychiatrists, psychologists, behavioral scientists – are training people who treat cancer on how to make the conversation easier for everyone.
During a two-day session at Memorial Sloan Kettering on communicating with cancer patients, three doctors were brought to a small room, where they practiced giving a prognosis to an actor.
The doctors were encouraged to set an agenda for the discussion, ask the patient what he or she wanted from the session, and to present the prognosis as a best-case, worst-case and most likely scenario. They were encouraged to tell patients to prepare for all three scenarios, and to write down the prognosis so the patient would remember the specifics. The best-case scenario helps to preserve hope, and that hope is not simply a warm feeling — 1 in 10 patients do much better than the median survival time for their cancer.
But many people avoid preparing for the worst-case scenario, Levin says, "because the worst-case scenario is the scariest." Sometimes a family's desire to "think positive" can make people reluctant to bring up death or dying. "And the end result is that the patient is left alone with his fear of dying and he can't speak to anyone about it." Levin also wants the doctors to make it clear to their patients that they will not abandon them if the worst-case scenario comes to pass.
Find other stories in the Living Cancer series at WNYC.org.
During the role-playing session, Dr. Asma Latif sat across from an actress portraying a 42-year-old woman with stage III ovarian cancer.
"The goal of the treatment is to cure the cancer," she said to the pretend patient. "But we know that this often is not possible. And actually the most likely scenario is that we don't cure the cancer. And I" — Latif paused. She could see that the patient was becoming visibly distressed by the uncertainty of her prognosis. "Can I do a time out? I don't know how to recover from this."
Latif was struggling with giving a prognosis that had a wide and vague range of outcomes. Levin assured her that while it seemed cumbersome, it was more honest and would help patients make difficult life decisions.
Ultimately, Latif agreed that she would try this with her patients, that she could see the value in it. But after the role-playing was done, all three doctors agreed that this session was more difficult than others they had undertaken, even more than discussing death and dying.
Our series is produced with member station WNYC, and with WETA, whose documentary Cancer: The Emperor of All Maladies will air on PBS in March.
9(MDE1MTIxMDg0MDE0MDQ3NTY3MzkzMzY1NA001))
Transcript
DAVID GREENE, HOST:
Immediately following a diagnosis of terminal cancer, there is the inevitable question of how much time is left. A cancer prognosis is excruciating to receive and to give. As part of our series Living Cancer, produced with member station WNYC, reporter Amanda Aronczyk looks at how some doctors are trying to make this conversation a little easier for everyone.
AMANDA ARONCZYK, BYLINE: Heather Lake did not want to know her prognosis when she was diagnosed with stage IV stomach cancer.
HEATHER LAKE: I knew stage IV was just a matter of time, so I didn't want to know.
ARONCZYK: She didn't know, but her family did. She overheard her daughter on the phone telling a friend that the doctor gave her just four to six months to live.
LAKE: I say, you could have told me. Four to six months has passed. Next month is five years.
ARONCZYK: Heather Lake was given months to live five years ago. Now she thinks her prognosis was meaningless. And she's glad the doctor never told her.
LAKE: I think that would've killed me because I would have been dwelling on that. I wonder if today's the day I'm going to die. Oh, I don't even like to think about it.
TOMER LEVIN: These prognostic conversations drive patients and their families crazy.
ARONCZYK: Dr. Tomer Levin is a psychiatrist at Memorial Sloan-Kettering Cancer Center in New York. He says the first problem is just hearing what the doctor has said in the first place.
LEVIN: The person is very anxious. They may hear cancer, and everything else becomes blah, blah, blah.
ARONCZYK: Studies show that when patients are told their cancer prognosis, they retain less than half of what their doctor tells them. Many patients walk out of their appointments thinking they've been giving an expiration date, like they're a half gallon of milk.
LEVIN: It's not just one number that you can give to a patient. You can't say to a patient you've got 12 months left to live like in the movies.
ARONCZYK: You say that a doctor can't say it's going to be 12 months live, but they do all the time.
LEVIN: Well, I think what is happening is that the patients hear 12 months, and what the doctor is saying is that you have a 12-month median survival.
ARONCZYK: Median survival; so it's the middle of a range. That means that if you have 100 similar patients - same cancer, roughly the same age - in 12 months' time, 50 of those patients will be dead and 50 will still be alive. It's not as though 100 patients expire on some exact date, but that's often how patients understand it.
LEVIN: If a patient understands that they have 12 months left to live and they die within 11 months, they feel cheated. Well, you know, you told me that I had 12 months. I still had things to do. On the other hand, if a patient lives for 13, then he thinks, gosh, there's just no point. I've done everything. I've taken my cruise. I've said my goodbyes. I'm just waiting to die. And that, again, is time wasted.
ARONCZYK: Dr. Levin thinks patients need to think about their prognosis differently, and so do doctors.
LEVIN: So who can give me an example of a difficult prognostic discussion or a complicated one?
ARONCZYK: He teaches a communication skills workshop for people who work with cancer patients. Today's class is discussing prognosis. And it's attended by three doctors, including Dr. Afsheen Iqbal. She specializes in lung cancer.
AFSHEEN IQBAL: I had a really young kid who was 29 with stage IV lung cancer. He had started smoking...
ARONCZYK: She told the group about a patient she had seen with a very poor prognosis. He was really sick.
IQBAL: And I started crying when I was talking to the mob, who, you know, very easily could have been my mom. And only then did the 29-year-old who was, like, on his phone texting while I was talking him, like, not really understanding...
ARONCZYK: She never cries at work, but he was her youngest patient so far.
IQBAL: And I was new. Anyhow, so they didn't come back to me.
ARONCZYK: Balancing realism and hope is difficult. Dr. Levin describes three kinds of doctors - there is the avoider, who dodges difficult conversations. There's Dr. Death, who goes into agonizing detail about every possible bad outcome. And then there's the optimist. Most doctors fall into this last category. And according to recent data, sometimes the better they know the patient, the more optimistic - and wrong - they get the prognosis. It's the tyranny of positive thinking.
LEVIN: Everyone says, it'll be OK, think positive. And so the person turns around to his wife and says, well, honey, what happens if I die from this? And his wife says, don't worry about that, just think positive.
ARONCZYK: And the end result is that the patient is left alone with his fear of dying. These classes teach the doctors to talk about death while also maintaining hope. Hope is not just a feeling; 1 in 10 patients do really well. So Dr. Levin suggests they present patients with a best-case, worst-case and most likely scenario.
ASMA LATIF: So I want to explain a few numbers because...
ARONCZYK: Another of the students, Dr. Asma Latif, is role-playing giving a prognosis. The patient isn't real; she's an actress pretending to be a 42-year-old with stage III ovarian cancer.
LATIF: So the goal of the treatment is to cure the cancer.
UNIDENTIFIED WOMAN: (As cancer patient) Yes.
LATIF: But we know that often that's not possible. And actually, the most likely scenario is that we don't cure the cancer and that - can I do a timeout?
LEVIN: Yeah, take a timeout.
LATIF: I don't know - I don't know how to, like, recover from this.
ARONCZYK: Dr. Latif was struggling with explaining the prognosis for a cancer with a wide range of outcomes. It could progress quickly and the patient might die within six months, or she could be cured and live her entire natural life. It's a bit like saying it's going to snow and it's going to be sunny and it's going to be windy today.
LEVIN: This is exactly the challenge. So if you are expecting extremes of weather - let's say you have to be in three different cities within a short period of time, you have to pack appropriately.
ARONCZYK: Dr. Levin says patients need to be ready for extremes. The point of a prognosis is to help you plan for the worst and the best. Look at Heather Lake, the five-year stomach cancer survivor. On the day I met her, she was at the Queens Cancer Center in New York for her regular shot.
LAKE: It's for the bone marrow, the cells, the white blood cells.
ARONCZYK: But you haven't been doing chemo every other week for five years?
LAKE: Yes.
ARONCZYK: For five years.
LAKE: Yes.
ARONCZYK: You're kidding me?
LAKE: No, I'm not.
ARONCZYK: That's a lot.
LAKE: It is a lot. You know, I've gotten accustomed - this is how the life is. I'm just dealing with it.
ARONCZYK: Not all new cancer treatments are easy. But Heather Lake has stuck with it, and she's done remarkably well. Even Linda Bulone, the nurse who convinced her to try it, couldn't have predicted that Heather Lake would still be alive and happy today.
LINDA BULONE: She'll tell you more than anyone she has a great social life. She actually has a better social life than me. I live vicariously through Heather (laughter). And she just got back from Trinidad, right?
LAKE: From Vegas.
BULONE: Oh, from Vegas. Yeah, I can't keep up...
LAKE: Vegas - and I'm going to Trinidad in November.
BULONE: ...With all her travels. And we work her - she works her treatment around her travels. But she knows that that's what's keeping her doing these travels.
ARONCZYK: Bulone doesn't have a lot of patients like Heather Lake. Her grim prognosis, just four to six months to live, was based on data from the past. It didn't anticipate this new treatment or how well she would do.
BULONE: She outlived the study - not only outlived, but look how beautiful and terrific she is.
ARONCZYK: For NPR News, I'm Amanda Aronczyk in New York.
(SOUNDBITE OF MUSIC)
GREENE: That story is part of our series Living Cancer. It's produced with member station WNYC and also with WETA, whose documentary "Cancer: The Emperor Of All Maladies" will air on PBS next month. Transcript provided by NPR, Copyright NPR.
300x250 Ad
300x250 Ad