Making Choice an Option
Are patients who sign informed-consent paperwork really informed about the treatment they're about to undergo? Of course not. The fine print on such forms is for lawyers, not sick people. But should patients understand the risks and tradeoffs of different treatment options they face? Of course. Dartmouth has been leading the way, not just asking for informed consent, but giving patients informed choice.
By Maggie Mahar
When Joe Rubin returned home from a visit to his urologist five years ago, he had bad news for his wife. "The doctor says that I have early-stage prostate cancer. They can treat it—I'll be okay," he assured her. "But I'm going to have to have this radiation treatment. The doctor thinks that in a case like mine, it's the best option. He said, 'If you were my father, this is what I would advise you to do.'"
"What are your other options?" asked his wife.
"I can't quite remember—there's surgery, but he said I didn't need that," said Rubin, whose name has been changed to protect his privacy. "And there are a couple of kinds of radiation, but he likes the new kind where they implant radioactive seeds in your prostate. He seems to know what he's talking about—I trust him."
"I'd just like to know a little more about the options," his wife replied. Janice Rubin knew that Dartmouth-Hitchcock Medical Center had created a shared decision-making center that helps patients understand the risks and benefits of various treatments, so that evening she went online and found the center's website, which, in turn, led her to other websites, including one for the Ottawa Health Research Institute.
When she was done browsing, she gave her husband a full report. "I'm glad he doesn't think you need surgery," she told him. "Even among men under 65, one out of a thousand die during or right after the operation, and five out of a hundred have a serious problem afterward—like a heart attack, a stroke, or blood clots in their lungs. Plus, five years after the surgery, more than a quarter are incontinent and more than three-quarters can't get an erection."
"Yeah, I remember the doctor talking
about that," Joe replied. "But I'm not going to have surgery—just the radiation, and it's the new kind where they implant little seeds."
"But there's a catch," said Janice. "Because that's a new treatment, the doctors don't know a lot about its side effects. What they do know is that with the older type of radiation—which is still in use—two out of a hundred men have a serious complication like a stroke, and many also have problems with incontinence and impotence. Five years after treatment, four percent are still wearing pads and nearly two-thirds can't have erections.
"Some doctors think the risk of any of these problems is lower with the seed radiation," she added. "But they don't have enough evidence to be sure. On the
other hand, the good news is that the radiation is pretty effective—especially if you're a low-risk patient."
"The doctor did say I'm very low-risk," Joe responded. "The PSA test they gave me—the blood test that can indicate prostate cancer—showed that my PSAlevel is pretty low. But they also did a biopsy, and showed that I do have cancer. Still, the doctor said that this is a kind of cancer that progresses very slowly. In fact, he said it's likely I'll die of something else before I get to a point where the cancer causes me any problems."
"So why do the radiation?" his wife asked. "Why not just keep an eye on things and see if they get worse? That's the third option they talk about in the medical research. It's called 'watchful waiting.'
Mahar is currently a fellow at the Century Foundation, where she writes and blogs about health care. She is the author of the book Money-Driven Medicine: The Real Reason Health Care Costs So Much, published in 2006 by HarperCollins, and has worked for the New York Times, Barron's, and Bloomberg. She wrote a feature for Dartmouth Medicine's Spring 2007 issue about the impact of the Dartmouth Atlas of Health Care on the national health-policy debate.