JUDY FREEDMAN, Cancer Patient: Let’s get some strawberries at the market.
BETTY ANN BOWSER, NewsHour Correspondent: Six years ago, psychotherapist Judy Freedman thought her days for a family afternoon stroll in New York City were numbered. That’s when she found out she had lung cancer.
JUDY FREEDMAN: I was told I had a 6- to 12-month prognosis. And, I mean, I was absolutely shocked.
BETTY ANN BOWSER: But new drugs and experimental therapies not only made it possible for the 59-year-old Freedman to survive; today, she’s living with cancer.
JUDY FREEDMAN: I was going to take these to the store.
BETTY ANN BOWSER: Since her diagnosis, Freedman has savored every moment with her only child, Sarah. She’s renewed her interest in photography. And with husband George, she’s taken three trips to Europe.
But now the cancer has spread to her spine and brain. When she got the bad news, she wanted to talk to her oncologist about the care she would receive at the end of her life, but that conversation never took place. Freedman asked the NewsHour not to identify her doctor.
JUDY FREEDMAN: I haven’t had a real end-of-life discussion, and I’m a big discusser. And I love my oncologist, and he’s been wonderful. He has many very unique qualities that I love, but talking about end of life and being amenable to it is not one of them.
Lack of discussion causes issues
BETTY ANN BOWSER: Freedman's situation is not unique. A recent study funded by the National Cancer Institute and the National Institute of Mental Health found that only 37 percent of advanced cancer patients reported having end-of-life discussions with their oncologists.
The research was done at Harvard University's Dana-Farber Cancer Institute; 603 patients at clinics all over the country were surveyed.
DR. ALLEN LICHTER, Chief Operating Officer, American Society of Clinical Oncology: That's just wrong, and we have to change that.
BETTY ANN BOWSER: Dr. Allen Lichter is the chief executive officer of the American Society of Clinical Oncology, or ASCO. He says he was stunned to learn so few patients reported having these conversations.
DR. ALLEN LICHTER: Patients who don't have an end-of-life discussions are three times more likely to have intensive care during the last days of life beyond a ventilator, et cetera, et cetera, have lengthy hospitalizations.
Twenty-five percent to thirty-five percent of patients are receiving active chemotherapy less than two weeks from their date of death. So if you add all this up, this is an extremely low-tech intervention, an end-of-life frank discussion that would save millions and millions of dollars in medical care costs.
DR. ALEXI WRIGHT, Dana-Farber Cancer Institute: In this analysis, we adjusted for patients' treatment preferences.
BETTY ANN BOWSER: Dr. Alexi Wright, the lead author of the study, presented it at the annual ASCO conference last month. Nearly 30,000 oncologists from around the world attended.
DR. ALEXI WRIGHT: We found that, much to our surprise, that patients who reported having end-of-life conversations with their doctors were no more distressed, they did not have higher rates of depression, higher rates of anxiety. They didn't express feeling more worried or nervous or sad.
And, in fact, it seems like they got much better care at the end of their lives. They were three times less likely to be admitted to the intensive care unit, four times less likely to undergo ventilation, and six times less likely to be resuscitated.
BETTY ANN BOWSER: The researchers came up with a conservative estimate of $304 million that could be saved in just the last week of life alone. That's of the 565,000 people who die from cancer each year.
Another major study released this spring by the Dartmouth Atlas Project, an ongoing research program that charts health care costs, went even further. It said more care does not result in better care or better outcomes. Some chronically ill and dying Americans receive too much care, and that over-treatment actually harms them.
Care for the person and the body
JUDY FREEDMAN: I do have, I think, some residual, slight numbness.
BETTY ANN BOWSER: When Freedman learned her cancer had spread, she sought out someone to have that discussion with.
DR. DIANE MEIER, Mt. Sinai School of Medicine: From my point of view, as a palliative medicine doctor, the good oncologist is the one who calls in palliative medicine when these issues become relevant.
BETTY ANN BOWSER: So she reached out to Dr. Diane Meier, a nationally recognized palliative care expert at Mt. Sinai Hospital in New York City.
Palliative care is a growing field of medicine that concentrates on improving the quality of life for seriously ill patients and their families. It is not dependent on prognosis.
In Judy Freedman's case, Dr. Meier made some adjustments to her medications that relieved most of her pain and helped her sleep better.
DR. DIANE MEIER: If they're at home, they're running the show. They determine what they're going to do when they get in bed. They sleep at night. They get to see their family when they want to, and it costs a lot less.
But what's fascinating is that the data is starting to suggest they actually live longer, as well.
BETTY ANN BOWSER: Dr. Meier also helped Freedman understand the implications of a treatment that would have delivered chemotherapy directly to the brain...
JUDY FREEDMAN: You put that in your brain, and then what?
BETTY ANN BOWSER: ... a therapy her oncologist had offered. The two doctors consulted.
DR. DIANE MEIER: When I asked him about her treatment options and the pros and cons of the different treatment options, one of the treatments that he had suggested to her when I asked him about it, he said he didn't really think it would help her.
And I said, "You know, do we still want to offer her something that isn't really going to help her and might carry consequences or side effects?" And he said, "I don't want Judy to think I'm giving up on her."
And I thought that captured it perfectly, that here was a physician who cared so deeply about his patient that he wanted to convey to her his commitment to her, that he was not going to abandon her no matter what. The way he thought he had to do that was by offering treatments, regardless of how likely they were to benefit, in a way.
Learning to treat patients honestly
DR. BARRON LERNER, Columbia University Medical Center: How do we go about discussing with these patients and their families this difficult issue of how aggressive to be?
BETTY ANN BOWSER: Dr. Barron Lerner is a professor of medicine and public health at Columbia University Medical Center in New York. He periodically holds midday lunch sessions with medical students to teach them how to handle these delicate conversations. He begins by asking the young doctors to describe their experiences.
DR. BARRON LERNER: So anyone have an instance, a case they can recall?
PETER SCULCO, Student, Columbia University Medical Center: Ben and I actually had an interesting case. It was our first case on neurology, and there's a woman who came in with basically some headache and some vision changes. We knew, based on some of the imaging and some of the studies, that it had like a really dismal prognosis, but I wasn't sure when to have that sit-down conversation. You don't want to just in passing say, "Oh, well, this has a terminal prognosis," and ruin the hope that he had. It was kind of a difficult situation.
DR. BARRON LERNER: One of the things that that raises for me is the issue of timing. You know, when do you do this?
So you can be put in a very awkward situation, I think, where you've got a patient or a family coming to you and saying -- you know, and I've heard the stories over the years that a family member will sort of grab the medical student and say, "Is my mother dying?" Right? And there's the medical student, and, you know, I have this image of the medical student like -- right?
BETTY ANN BOWSER: Dr. Lerner says that, to understand why so few oncologists have these conversation, one needs to look how doctors approach disease.
DR. BARRON LERNER: They feel that it's almost wrong to have that sort of discussion, that giving up is equivalent to doing something bad. And we're really not giving up here.
We're just shifting from aggressive treatment to try to kill sick cancer cells to aggressive palliation, where we're going to do as much as we can to prolong life for as long as possible and to keep the person as comfortable as possible.
Living well, a day at a time
BETTY ANN BOWSER: For Judy Freedman's daughter, Sarah, palliative care has taken a huge burden off her shoulders.
SARAH SCHWARTZ, Daughter of Cancer Patient: My mom, you know, she loves doing things, and she loves going outside, and being in the world, and playing with our neighbors. And when her side effects are so bad that she's uncomfortable, it's just -- it limits her life so much.
And I just really want her to be able to do things for as long as she can do them. And I just don't want her to be, you know, miserable because of her physical condition.
BETTY ANN BOWSER: Husband George is also relieved.
GEORGE SCHWARTZ, Husband of Cancer Patient: Now I can focus on her and our relationship and having the best times that we can have under these circumstances, rather than being focused on very minute details of her care.
JUDY FREEDMAN: Death is not a catastrophe or something horrible. Now, of course, it can be. I'm not trying to say that it isn't and that I don't feel extremely, extremely sad, you know, that I'm going to have a shortened life.
But there was something that put me in with everybody else, you know? I mean, we all are going to die and to live as well as you can while you live.
BETTY ANN BOWSER: Recently, a new lung cancer drug was added to Freedman's regiment. But if it causes any nasty side effects, she will stop taking it. Freedman remains committed to a life worth living.