Giving Patients a Larger Voice
More Doctors Welcome Dialogue About Tests And Procedures

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.

That's why Fairfax physician Krist tries to help his patients reach their decisions. In the decade that William Forrester has been a patient of his, they have discussed the PSA test annually. Most years, Forrester, a retired journalist, declined the test. No matter which way he chose, he says, Krist helped him feel comfortable with his choice.

"This is a new kind of medicine for me, to be involved in the decision-making," Forrester says. Last year, when he reached age 70, the two agreed that there was no longer any reason to screen him for a cancer that often takes 20 years or more to produce symptoms.

Sidestepping Harm

Many family practice physicians use some form of shared decision-making, but most doctors have not gotten on board. Some think they can't afford to spend the time it takes -- time for which they are generally not reimbursed. Others worry that they will be sued if a patient declines a screening test, such as the PSA, and then develops cancer down the road.

Payers, on the other hand, including Medicare, are looking carefully at making decision aids more widely available, and possibly even requiring that doctors employ the collaborative process before they can be reimbursed for certain procedures. That's because patients are often less interested in undergoing invasive -- and expensive -- surgeries and procedures once they've been fully informed.

In a recent meta-analysis, or study of several studies, Annette O'Connor, a health services researcher at the University of Ottawa in Canada, reported that patients who had access to decision aids were 21 to 44 percent less likely to choose a surgical option for such conditions as excessive menstrual bleeding, back surgery and angina, the chest pain caused by a partially blocked coronary artery.

John Wennberg, the director emeritus of the Dartmouth Institute for Health Policy and Clinical Research and one of the founders of the movement, has also long argued that if shared decision-making were widely adopted, it could help improve the quality of care in the United States -- and probably bring down costs.

Studies have found that most patients overestimate the likely benefit of treatments and tests while downplaying their potential for harm. And their doctors routinely misunderstand what their patients value and what kinds of treatment they would want if they really understood the trade-offs.

"We don't think of this as a medical error," Wennberg says. "But operating on a patient who didn't really want a particular surgery may be as bad as operating on the wrong knee."

Wennberg and a handful of researchers around the world have been working to formalize methods to bridge the gaps in patients' understanding about everything from back surgery to drugs to cancer-screening tests such as the PSA. Sometimes, a fairly simple discussion with a doctor is enough to fully inform a patient.

For other patients, decision aids are needed, because doctors often can't spend the time to sift through competing options and they're not trained to help patients weigh their worries and hopes against the various odds for benefit or harm.

These aids include short videos, brochures, questionnaires and interactive computer programs, which patients may take home and go through at their own pace.

Once they more thoroughly understand the pros and cons of a proposed treatment or test, they can then discuss it with their doctor, a process that generally leaves them more satisfied with their care.

Georgetown's Taylor has conducted several studies that found that men who received decision aids walked away with a better understanding of the PSA test, regardless of whether they chose to be tested.

Who Has Time?

Only a handful of hospitals have made shared decision-making a standard of care.

Encouraged by Wennberg, Dartmouth-Hitchcock Medical Center, in Hanover, N.H., in 1999 became one of the first in the country to set aside funds for shared decision-making. The hospital now offers 30 decision aids for such surgeries as mastectomy and lumpectomy, prostatectomy and back surgery.

The researchers want Medicare to support research needed to design balanced, effective aids for patients and to determine when to make them available. Getting shared decision-making incorporated into hospitals and doctors' offices will come, its advocates suggest, when Medicare and other payers begin reimbursing doctors and hospitals for using it.

In the meantime, patients can let their doctors know whether they want to play a more active role in their medical care. Kuba says part of the reason she has stuck with the Fairfax Family Practice for 20 years is the ability to discuss every treatment and test with her doctor.

"There's always a give and take," she says. "They help me put it all together." ¿

Shannon Brownlee is the author of "Overtreated: Why Too Much Medicine is Making Us Sicker and Poorer" (Bloomsbury).

View all comments that have been posted about this article.

© 2007 The Washington Post Company