What this patient needs is a doctor!

That phrase is almost legendary amongst internal medicine residents. The old, now retired giants, would allegedly use that phrase to berate residents who made errors.

Today, I use that phrase in a different vein. Awash in Information, Patients Face a Lonely, Uncertain Road

Nothing Meg Gaines endured had prepared her for this moment. Not the six rounds of chemotherapy for ovarian cancer that had metastasized to her liver. Not the doctor who told her, after Ms. Gaines was prepped for surgery, that he could not operate: a last-minute scan revealed too many tumors. “Go home and think about the quality, not the quantity, of your days,” he said.

Not the innumerable specialists whom Ms. Gaines, then 39 and the mother of two toddlers, had already mowed through in her terrified but unswerving effort to save her own life. Not the Internet research and clinical trial reports, all citing the grimmest of statistics. Not the fierce, frantic journey she made, leaving home in Wisconsin to visit cancer centers in Texas and California.

Now, just about out of options, Ms. Gaines faced an excruciating decision. Her last-ditch chemotherapy regimen did seem to be working. Three medical oncologists thought she should stick with it. But two surgical oncologists thought she should first try cryosurgery, injecting liquid nitrogen into the tumors to shrink as many as possible, and then following up with chemotherapy, allowing it to be more effective.

The catch? Ms. Gaines’s chances of even surviving the procedure were uncertain.

“Who will decide?” she asked a surgeon from Los Angeles.

The doctor then recited what has become the maddening litany of medical correctness: “We’re in the outer regions of medical knowledge,” he said, “and none of us knows what you should do. So you have to make the decision, based on your values.”

Ms. Gaines, bald, tumor-ridden and exhausted from chemotherapy, was reeling. “I’m not a doctor!” she shouted. “I’m a criminal defense lawyer! How am I supposed to know?”

This is the blessing and the burden of being a modern patient. A generation ago, patients argued for more information, more choice and more say about treatment. To a great extent, that is exactly what they have received: a superabundance of information, often several treatment options and the right to choose among them.

As this new responsibility dawns on patients, some embrace it with a sense of pride and furious determination. But many find the job of being a modern patient, with its slog through medical uncertainty, to be lonely, frightening and overwhelming.

This story reminds me of many patients, both in the outpatient setting and inpatient setting. Patient autonomy has advantages, but we should always consider whether the patient wants that autonomy. As physicians we must sometimes be directive – if that is what the patient wants.

“People want to feel a part of their health care,” said David Mechanic, a medical sociologist at Rutgers University. “But they don’t want to be abandoned to making decisions all on their own. When a doctor says, ‘Here are your options,’ without offering expert help and judgment, that is a form of abandonment. “

The problem that we (patients and physicians) now face is one of time. The decision making process is time consuming, and time is money (although we physicians cannot charge extra for that time).

“It’s hard to get a hold of the doctors at the clinic,” he said. “My own doctor is so overtaxed. He’s pushed, he’s pulled, he’s torn, he’s frantic, he does the best he can. But whenever I saw him, I felt like I was taking up his time. The waiting room has gotten so cramped! There are a lot more hoops to jump through before you can get to the doctor: I got more personal care 11 years ago.”

Physicians get paid by the patient unit. We generally get paid more for doing procedures than for talking to patients. Thus, we often default to ordering tests or referral rather than taking the time to talk.

Doctors feel the benefits and burdens of medical information being so accessible to patients. Yes, studies show that the more informed patients are about their care, the more likely their health will improve.

But the information that patients bring to the office visit is often half-baked. Doctors must spend precious moments in an already constrained time slot re-educating them.

Dr. Russo, the West Orange, N.J., internist who sees 5,000 patients a year, applauds patients who do their homework. But, he noted, especially when patients are researching treatment options, they flop down in his office, feeling inundated.

“The patients are stressed, they’re so confused, and it’s in our laps,” Dr. Russo said. “They are deserving of guidance.”

He is the generalist; his job is to diagnose problems. Then he refers patients to specialists who, he hopes, will help them with the daunting decisions.

Patients struggle to find their way, Dr. Russo said, but “there isn’t one person to walk them through the process.”

It is impossible to overestimate the bracing impact of that old-fashioned guide, the doctor who can be a patient’s constant, her Pole Star.

Insurance companies and the medical establishment seem to have little regard for the generalist. Chronically ill patients, or newly diagnosed patient desparately want a physician for these discussions.

Patients who have a continuing relationship with a personal physician, studies show, have greater survival rates and lower health costs. Conversely, the more medical personnel involved in the patient’s care, the greater the likelihood of error.

But though that primary relationship is so fundamental for patients, the medical establishment is gradually turning away from it. The number of medical students eschewing careers in internal and family medicine and instead pursuing specialties is increasing. Among the reasons they give are the declining prestige of primary care doctors, the eroding doctor-patient relationship, the financial hardships of maintaining a practice and the drain on family life.

The only way out of this dilemma is to reinvigorate the profession of primary care medicine. This reinvigoration can only occur if we reinvent compensation. Many students will accept the challenge if they can make comparable income. Compensation must allow (and even reward) us for spending adequate time with patients. We have the opportunity to shepherd our patients through the health care maze. Shepherding takes time, but patients need our help.

The failure to repair the profession will magnify the problem. This article speaks loudly about why we generalists are so important.