Session Two: Time--Counting the Moments/
Making Moments Count

Debu Tripathy, M.D.
Oncologist, University of California, San Francisco

I'm a medical oncologist at UCSF, and my investigative work has been in the development of new therapies for breast cancer, primarily for advanced breast cancer. This provides a good platform for my talk to you today and also for discussion later on this afternoon. I want to speak about the paradox that emerges when we have in our hands new and exciting technology with benefits that may actually be somewhat limited, but which are presented in dramatic ways to the public; and how this paradox comes into sharp relief when individuals seeking new therapies and new technology for an incurable cancer have to confront the notion of mortality and the fact that, despite advances in technology, they may face a situation from which they cannot benefit.

The last few years have actually seen a scientific trend towards a difference in the way in which we look at cancer. Number one--and I'll focus my comments on breast cancer, since that's the area from which I can provide examples--in the area of prevention, there have been some advances in which small benefits in lowering the risk of getting breast cancer have been achieved with drugs that themselves have side effects. And that, of course, has generated a lot of controversy. For the majority of women in this country and in most industrialized countries, the mortality from breast cancer is actually very good: only a quarter of patients will actually die. And that is because the patients' symptoms present at earlier stages, mostly through public awareness, through mammographic screening. And there have been advances where therapies after surgery can clearly improve the long-term outcome of individuals. But this improvement in outcome is more of a statistical finding. In other words, when you study one population getting a therapy compared to a population that is not, you see improvements in outcome. But it's very difficult to point to an individual person and say, "For you, this therapy is going to work." You're basically lowering the risk, which is a very difficult benefit for many individuals to perceive and comprehend. And then, finally, in the area of metastatic breast cancer, a disease that is generally not curable and generally does lead to death, there have for the first time now been new therapies that can improve the long-term survival of patients. These are not curative therapies, but they are therapies that can extend life.

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Having described that as a backdrop, let me talk now about some of the struggles that individuals have, and where I think technology has brought us in that regard.

When someone comes to you for care, especially as a sub-specialist, someone who is doing research, someone who is at a referral center, the expectations are quite high. And we have become a culture of technology, a culture of high expectation. And why not? If one looks at computer technology and communication technology, we have made great strides. We now expect to be able to travel to Europe and check our e-mail daily and get on the phone and talk to whomever we want any time of the day or night. And the same thing has happened in medicine, although the implications for longevity are a little more blurred. As I have mentioned already, in the area of breast cancer these benefits get a lot of press, and they are presented as the triumph of technology over nature.

There are many reasons for that hyperbolic presentation of science. Part of it is that we are used to success; we like to present success. It sells newspapers better. The 20/20 show is appealing to watch when it puts a technological advancement into the perspective of a human individual, showing us a very dramatic story of someone who responded to a new therapy. In reality, it may be the case that the chances of response might only be 20% and treatment may only prolong life by a few months, though the news story is certainly not transmitted that way to the public.

So one of the challenges for us is how to convert that expectation of technology's success into the reality of what we can do for an individual patient. In terms of how we as oncologists can interact with patients, many limitations have emerged over the years and for many reasons. I'll enumerate some of them. One was illustrated pretty well by Judith Light in the play Wit. The play is about a woman's struggle with terminal cancer, and it portrays the medical profession and medical oncologists, in general, as very cold and uncaring. While one can interpret that in many ways, I think that the play calls attention to many limitations that medicine has today, not just the uncaring nature of some practitioners, but the limitations that oncologists and other care providers have in dealing with their patients.

Time is probably the most important element that is missing. And this, again, is what creates the gap that I'm describing between the expectations and what can be done. When I see a patient in our practice, there's a certain amount of education that needs to be done--in fact, quite a bit. In this day and age, the availability of the Internet, and all the books and periodicals that are out there, help get information out to patients, but they also hurt the situation in that the information is not being filtered and hence can be to some extent misleading, conflicting and confusing. The limitation of time that is available to us to educate a patient about the technology applicable to their particular situation is a problem that limits our ability, over time, to navigate a patient. Just as you would steer a very large barge down a river, making very gentle turns slowly, in order to achieve the direction you are looking for over a long period of time, we need to proceed in very slow, deliberate, but strong moves. Time does not always allow for this.

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The process of educating someone about new technology is something that I undertake early on. After all, as I mentioned, people are coming to understand what new technology has to offer them. But in discussing the technology, they must also understand that, for each person, the situation is going to be unique. And it's in that uniqueness that one starts to discover what the limitations of therapy are.

The final item that complicates things is a general uncertainty. Cancer and many medical illnesses are very heterogeneous diseases, they present in many different ways, they have many different natural outcomes, and they respond to treatment differently. We know from a molecular standpoint that breast cancer is genetically very complex, and therein lies the individuality of the therapy. We can portray to someone what the technology we have to offer them is, what their particular situation is, and what the expectations of therapy might be, but it is all shrouded in levels of uncertainty. "Here is a new monoclonal antibody that will bind this ONCA gene that can regress your cancer. However, only about 20% of individuals with your particular cancer respond. One of the ways we will track this response is by measuring scans and doing blood work, and then making decisions as time goes on." These are the lines that a patient might hear. But these lines contain several messages. Number one is "You have a serious problem." Number two is "I can help you." Number three is "We have new modern technology that can be a benefit." But the last point is "We don't know how you're going to do." Uncertainty. Confronting mortality and death tends to be one of the more final facets that one might bring up. I think that's inappropriate, I think that one has to be able to bring up mortality.

At our center, we are exploring a model where, in the initial consultation, not only do we try to take a very holistic approach in assessing their medical situation, their social support, and their psychological well-being, but we start to bring up these issues at the very beginning. I'm a little nervous about this. This is not an area in which there is background science to guide us, where there have been any studies to know what the impact will be of bringing up mortality very early on in someone's process of interacting with our center. Even if they have early-stage breast cancer and their chances of dying from cancer are small, we think we need to bring it up, but much more so, when they come to us with advanced breast cancer. When we're still taking a very aggressive tack in looking at what their options are and proceeding with aggressive therapy before we make a decision as to whether this is working, it is very difficult in the same day and in the same session to bring up the prospects of failure and the prospects of death. Nevertheless, our belief is that we need to approach it in a way that is positive, yet starts to get those issues in at the very beginning.

I look to comments from my colleagues today in the discussions that follow to help refine the directions that we take with this whole process. I think we can achieve a synthesis of emerging technology, high expectations, and, at the same time, acceptance of mortality and acceptance of dying. It seems as though these are opposing forces, that they cannot be mixed and cannot be taken well together in a given patient and in a given session; but I do think there is a way that we can bring them together. And I hope, in the future, that I can present to you what we are seeing, at least from a qualitative standpoint, in this integrated approach to patient education and care.

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