Giving Patients a Larger Voice

Alexander Krist, here examining Sin Kan of Fairfax, makes sure his patients can learn about the pros and cons of procedures in advance.
Alexander Krist, here examining Sin Kan of Fairfax, makes sure his patients can learn about the pros and cons of procedures in advance. (By James A. Parcell For The Washington Post)
By Shannon Brownlee
Special to The Washington Post
Tuesday, October 23, 2007

Should I? Shouldn't I?

Those are questions that increasing numbers of patients ask themselves about such common steps as being screened for lung cancer, taking certain drugs and having back surgery.

In many instances, there is no clear answer. The science doesn't tell us; each patient must weigh the uncertain benefits against the risks.

That's why a small but growing number of doctors, including Maura Sughrue and Alexander Krist, family practitioners in Fairfax, make sure their patients have a chance to learn about the pros and cons of various procedures before undergoing them.

The doctors at Fairfax Family Practice aren't acting just out of goodwill. They're part of a trend called shared decision-making that is just beginning to catch on around the country. It is aimed at filling the gaps in knowledge that patients routinely face when their doctors either don't know about or don't fully explain the uncertainties of a test or a proposed course of treatment. And, by helping patients understand their options, often with the help of informational aids such as booklets and videos, shared decision-making aims to leave patients more satisfied with their choices while it cuts back on debatable (and expensive) procedures.

After Lynn Kuba, one of Sughrue's patients, was prescribed Fosamax by her gynecologist to treat osteoporosis, Sughrue and Kuba looked at the results from a bone scan and together decided that her bone loss was not yet serious enough to risk the drug's numerous side effects, which can include diarrhea and ulcers. Kuba has decided for now to take a Vitamin D supplement, which affects how the body absorbs calcium and is essential to slowing the loss of bone.

In other examples, the doctors help their patients understand that medical science doesn't always offer a clear choice. Prostate cancer testing is a case in point. The prostate-specific antigen, or PSA, test is a simple blood test that can detect prostate tumors on average 11 years before a rectal exam does. To anyone who assumes that catching prostate cancer as early as possible leads to cures, the PSA test looks like a no-brainer.

But the evidence doesn't support that view. If early diagnosis of prostate cancer were really effective, then the mortality rate for the disease should go down as more and more men are screened. There has been a slight drop in the mortality rate in the United States in recent years, but screening may not deserve the credit. Mortality also has declined in Britain, where men are rarely given the PSA test.

Although the benefits of the PSA test remain uncertain, the risks of acting on those results are real. If the PSA shows elevated levels of the antigen, men generally undergo a needle biopsy, in which the doctor inserts a needle multiple times into the prostate and withdraws small samples of tissue. If cancerous cells are detected, most men opt for surgical removal of the gland.

Even in the most skilled hands, prostatectomy leaves as many as half of men incontinent, impotent or both, sometimes permanently.

"It borders on unethical not to inform men of the state of the science before they undergo screening for prostate cancer," says Kathryn Taylor, a researcher at the Georgetown Lombardi Cancer Center.

Today, debate over the PSA test rages on, and neither doctors nor patients know what the right course of action is. For some men, the fear of cancer might outweigh any concerns about side effects from the treatment that might follow a troubling test result. But for others, a cancer that often grows very slowly might seem less of a worry than being incapacitated by a prostatectomy.

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