Cancer Realities

By Heather Millar

Cancer care is complicated, stressful. The outcome is always uncertain. You’d think that in this sort of highly charged situation, both doctors and patients would make extra efforts to communicate clearly. But, alas, we’re all human, and it often doesn’t work out this way.
Even when patients believe that miscommunication has resulted in a physical harm, or a misstep in treatment, some 87 percent do not make a formal complaint or initiate a discussion about it, according to a recent study in the Journal of Clinical Oncology. Doctors, for their part, rarely initiate conversations about these problematic events. You can read a summary of the findings here.

It’s kind of amazing that we still get our wires crossed so much. The National Cancer Institute, which sponsored the study, has a “Cancer Communication Research Center” for heaven’s sake.

In this most recent study, researchers interviewed 416 patients at three medical centers. Of these, some 93 patients believed that something had gone wrong in their cancer treatment. Of those 93, some 47 percent believed that the main problem was communication. Another 24 percent mentioned problems with both medical care and communication. As noted above, only a few of these problems resulted in a formal complaints or discussions between doctors and patients.

We can do better than this. Of course, it would be nice if medical schools spent a little more time training doctors to talk to patients and to include them in care decisions. But until that happens, we patients need to remember to screw up our courage, ask questions, and air our concerns.

I don’t say this out of some naïve idea that “talking things out” always makes everything better. But I do think that not speaking up can make things worse.

When my Dad was dying of lung cancer, his oncology team recommended exploratory surgery at the 11^th hour. I had my doubts about this, but I didn’t say anything. My mother, an attorney who always nurtured a rather dim view of doctors, had her doubts, but she was in shock and didn’t say anything. So they cut open my Dad’s abdomen. They found cancer everywhere. They shook their heads and closed him back up. He lived only two more weeks, and each day of those last days was more painful than it needed to be because of the surgery. The incision stitches and abdominal tenderness were a completely unnecessary part of his suffering.

We should have said something, communicated our concerns. We should have complained when it all went awry, so that the next patient would not suffer the way my Dad did. We didn’t. We had lots of excuses: we were tired, stressed out, grief-stricken. There didn’t seem to be any point. Now, I realize that our passivity was wrong, and a little bit selfish. Next time, I’ll speak up. You should, too.

Let me know if you’ve found any techniques or opening lines that make doctor-patient communication easier.