What’s up with patient/survivor care?

From the annual meeting of the American Society of Clinical Oncology, Chicago

I just covered my last ASCO session, the oral presentations on patient/survivor care, this afternoon. I’m sure I will have several stories to come out of this session but I am a bit mystified by the attendance. The room could easily have seated about 500 people but there were only about 40 of us there. I would wager that most were allied health professionals and perhaps even a survivor or two. So where were all of the oncologists?

The other sessions that I have covered—sessions on new drugs or new drug combinations—were held in rooms that could have held more than a thousand people. While not packed, these rooms were pretty full in comparison. The cynic in me suspects that patient care is not well attended because there is no money in it but I hope there is more to it than that.

So I asked my colleague, Jane MacNeil—-who is the editor of The Oncology Report and my mentor for oncology reporting—-why does patient/survivor care get so little attention? She offered several possible reasons.

First, drug companies, investors, and analysts—who are focused on new drugs and profits—have a very big presence at ASCO. This translates to lot of M.D.s and Ph.D.s at the meeting, who never see patients. “In turn, community oncologists are becoming less and less of a presence. The smaller symposia that ASCO has started— i.e., the breast, gastrointestinal, and genitourinary meetings—may be more valuable to the clinician,” Jane told me.

Second, “oncologists are trained to save lives. Their mission is to help their patients live longer. While they strive for ‘manageable toxicity,’ oncologists are used to serious side effects coming with life-saving treatments. It’s not that they want their patients to suffer, but they are more invested in helping them to live. Not all supportive care is palliative, but when all else fails, giving up and recognizing that palliation is best for a patient can be very difficult for some physicians,” Jane said. This makes some sense to me. In my own experience covering medicine, this is a phenomenon that is not limited to oncologists alone.

Third, Jane noted that “many oncologists are uncomfortable with quality of life studies that are based on subjective responses from patients. I have heard speakers say at meetings that they know quality of life is important, but they don’t know how to interpret the results of these studies. Phase III trials give them objective survival outcomes in hard numbers.” Even patient/survivor care researchers acknowledge the “squishiness” of quality of life data. I agree that it’s hard to make the shift from thinking in terms of quantitative results to qualitative results. Still, it seems to me that patients are telling physicians some important things about how to improve care with quality of life data.

Lastly, “Oncologists order treatment but oncology nurses deliver much of the supportive care and, in many cases, are more sensitive to these issues because they spend more time with patients and their families,” Jane observed.

I’m curious to hear what oncologists have to say about patient/survivor care. What’s your take?

—Kerri Wachter

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