WASHINGTON – It's one of medicine's uncomfortable truths: That blood test for prostate cancer is far from perfect. Would as many men take a PSA test if they knew? Or consider treatment for early breast cancer: Is saving the breast worth all the extra doctor visits for radiation or would you prefer the whole breast removed in one trip?
There's no single right answer for everyone yet patients often are ill-equipped to weigh increasingly complex medical options. Now there's a small but growing movement to get unbiased reports of the pros and cons of different tests and treatments into patients' hands before they fall back on, "Doc, just tell me what you'd choose."
"No matter how hard I tried" to be objective, "inevitably my personal biases got involved," recalls breast surgeon Dr. Dale Collins of New Hampshire's Dartmouth-Hitchcock Medical Center, which helped pioneer the concept that it calls shared decision-making.
Think of it as "informed consent 2.0," going a step beyond the brief patient education that doctors are required to provide. One state, Washington, has passed a law encouraging the trend. And it may get renewed attention in this era of health care reform because studies suggest that patients who get the full scoop frequently choose more conservative therapy than their doctors initially recommend.
Savvy patients today turn to places like the National Institutes of Health or American Cancer Society for advice. For the less savvy, some medical groups are developing what they call decision aids, plain-English guides that give equal voice to the advantages and disadvantages of options and include real patients explaining why they chose differently. They can be videos or pamphlets, but the goal is for patients to get the guides even before doctor appointments so they come armed with better questions.
Consider that PSA blood test. Most men over 50 have had one even though it's hugely controversial. Why? Most men who undergo a biopsy for an abnormal PSA test don't turn out to have prostate cancer at all. Of those who do, there's no proof yet that the early detection saves lives. But finding an early prostate cancer forces a decision about trying surgery or radiation treatments that can cause incontinence and impotence — known harm for unknown benefit.
In fact, health guidelines issues last year concluded men over age 75 shouldn't get a PSA test while younger men should make an individual choice after hearing the pros and cons.
But getting upfront objective information is rare, Dr. Michael Barry of Massachusetts General Hospital told a meeting of the nonprofit Foundation for Informed Medical Decision Making last week, where health workers gathered to debate how to spread "informed choice."
In a decision-aid video the foundation sponsored about PSA testing, one doctor says, "Is this a slippery slope that I really want to get on?" He decided not to have his own PSA level checked.
"It's a good way to diagnose a potentially fatal condition," says another physician on the video who did get tested.
At Dartmouth, every woman diagnosed with early-stage breast cancer now sees a similar decision-aid video before meeting a surgeon. They're also quizzed to be sure they understood that survival is equally good regardless of whether they choose removing just the tumor, followed by radiation, or removing the whole breast — but that there are valid reasons for either choice, such as anxiety about keeping the breast, the time radiation requires, how often more surgery is needed.
Patient choice is only one part of good health care; a separate problem is how often doctors fail to offer proven care, such as medications that improve survival after a heart attack.
But many other scenarios — back surgery, knee and hip replacement, enlarged prostates, especially end-of-life care — have no one-size-fits-all guidelines, and Dartmouth research suggests where patients live often is the biggest determinant of what they get. For example, elderly patients with chronic illnesses spend 11 days in the hospital in Bend, Ore., over their last two years of life — while those in Manhattan spend 35 days in the hospital, although the extra care doesn't lengthen life.
A new University of Michigan study of how 3,000 patients made common medical choices suggests patients frequently have misinformation. Fewer than one in five could name the most common side effect of cholesterol-lowering statin drugs they were considering, for example. Moreover, patients said their doctors discussed treatment advantages more than the disadvantages.
Whether decision aids or some other approach truly improves informed choice remains to be seen, but a handful of medical centers are trying the guides.
"You're getting so much information thrown at you at one time, it's hard to assimilate," says Alethea Cassidy, 53, of Erie, Pa., who was diagnosed with early-stage breast cancer in March 2007 and received a similar decision-aid video from Allegheny General Hospital. It helped her decide to keep her breast. "It alleviates any doubts."