The New Health Dialogue

What if the sneakers said, "Just Don’t Do It?"

Or we had television commercials of beautiful couples running on the beach because they didn’t take their pills?

Or if our public service announcements reminded us that "Watchful Waiting Can Save You a Whole Lot of Angst?"

American culture is very "fix it" and action-oriented, and that’s often how we approach health care. We tend to think doing something is preferable to doing nothing (especially if we are doing something bigger, better, bolder, and newer than whatever it was we were or were not doing before).

The way we make our medical decisions -- and the ways doctors influence those decisions -- perpetuates this cycle of behavior.

Researchers from the University of Michigan’s Institute for  Social Research, sponsored by the Foundation for Informed Medical Decision-Making (we wrote about a conference they held in DC a while back) found that when it comes to making nine common medical decisions -- decisions about cholesterol lowering drugs, or certain cancer screenings -- U.S. patients know less than they think they do and make decisions that are far from well-informed.

The "National Survey of Medical Decisions" (the "DECISION" study) also found that much of the information patients do get from their doctor stresses the advantages, not the disadvantages or risks, of the treatment the physician is recommending. Doctors, moreover, don’t inquire much about patient preferences. And they aren’t shy about offering their own opinions.

So much for  patient autonomy and informed health care consumers.

"What we’ve done is documented across a lot of decisions across a wide span of the adult population that decisions are made in a pretty passive, paternalistic way," Floyd "Jack" Fowler Jr. PhD, senior scientific adviser and former president of the foundation, told me. “The overwhelming dynamic is the doctor makes a recommendation, talks about the reasons for doing it, doesn’t talk much about the reasons for not doing it, and doesn’t involve the patient much in these decisions."

The research is presented in a series of papers and editorials in the journal Medical Decision Making. It comes at a time when "patient-centered care" is a new buzzword in U.S. medicine; “shared decision-making” and development of more patient decision aids may get a boost from health reform legislation. (Some of the elements of the legislation designed to encourage shared decision-making must still get money through the congressional appropriation process.)

"What you see in the data is that the physicians recommend the drugs, they tell you why to take them and they never tell you why not to take them,” he said. “People are taking lifetime drugs, for cholesterol and blood pressure, that may not be doing that much good.”

"This really describes some of the mechanisms, some of the issues where overtreatment comes from," Fowler said. “It was so clear that the doctors were perceived as being in favor of the interventions and not presenting two sides." When surgery was discussed, the pros and cons were addressed more thoroughly than when discussing drugs or cancer screening, although the patients were still not fully informed. "That’s what you would hope," because more is usually at stake, Fowler said. A patient can stop taking a cholesterol-lowering pill. A patient can't undo surgery -- or go back in time to avoid a surgical complication.

The Michigan team surveyed more than 3,000 U.S. adults age 40 and older between November 2006 and May 2007, inquiring about decisions about common "preference-sensitive" or elective medical decisions: screening tests for colorectal cancer, breast cancer, and prostate cancer; prescription medications for hypertension, high cholesterol, and depression; and surgery for knee or hip replacement, cataracts, and lower back pain.

Patients have a choice about all of these procedures, and patients -- given complete and accurate information -- may not all make the same decisions.  Not only do people have different medical histories, they evaluate information differently in light of their own experience, values, personality, and lifestyle. There’s certainly nothing wrong with choosing aggressive care -- if it’s an informed choice, and it’s truly a choice, but there is some evidence that people given more complete information and context do choose more conservative treatment, Fowler said.

In addition, despite the avalanche of health information in the media, on the Internet and in commercials (or maybe because of the information, as so much of it is "bad information or misinformation," Fowler said) , people often don't know even the basic facts needed to make an informed choice, such as potential risks and benefits. The study also found that people overestimate their risk for conditions like cancer -- and overestimate the benefits of cancer screening while barely registering the possible downside. (Unnecessary biopsies, scarring, complications, anxiety -- and expense.)

"We way oversold cancer screening," said Fowler, who has spent many years researching patient outcomes and how treatments affect patients. "So people have distorted risks of what the likely risk of getting cancer is, and how much good screening will do."                                              

These aren’t isolated or rare decisions. The research team found that more than three in four had made at least one of the nine decisions within the preceding two years. Half made two or more of them.

Unraveling all the causes behind poor communication and overtreatment is complex. Our fee-for-service health care system has incentives for doctors to order a lot of tests and procedures. The pharmaceutical industry, of course, also does its best to get both physicians and patients to reach for the pill bottle. But Fowler noted that in the decision-making circumstances explored in this study, money wasn’t necessarily the root cause. (A surgeon recommending an operation he would perform, or a physician recommending a screening when he had a stake in the imaging center, for instance, might profit. But in most of these decision-making and communication settings -- ie whether a primary care physician prescribed a statin or recommended an antidepressant or made a referral to an orthopedist -- the physician didn't have such a direct financial stake, Fowler said.)

The Boston-based Foundation for Informed Medical Decision Making is a nonprofit that aims to inform and amplify the patient’s voice in health care decisions. It advances research, policy, and clinical models to ensure that patients understand their choices and have the information they need to make sound -- and informed -- health decisions.