Awash in Information, Patients Face a Lonely, Uncertain Road - New York Times

An excellent piece in the nytimes that encapsulates how atypical medical care is in the U.S. compared to the rest of the world. I think the underlying issue is that in American culture, there is a widespread delusion that we can control everything with enough information, the right doctors etc...I have had patients, after doing their internet research, tell me exactly how I am going to do their surgery, not valuing my experience in doing several thousand such procedures beforehand, not to mention two decades worth of medical training and practice.

Additionally it can be quite difficult for me to parse through the medical literature on a given topic, especially with regards to manipulation of statistics in peer referenced journals, without even getting into the "over the top spins" of big pharma on their products. I seriously doubt that most patients can tackle these issues.

It is frustrating and time-consuming to have to often re-educate patients when they come to office with misguided information from the internet or based on a sales pitch they saw or heard somewhere.

At the same time, I often find it frustrating that their is no good means to get the word out regarding one's skills etc...Patients usually form their opinion based on "bedside manner," which is only one component of care, especially in surgical specialties. Surgeons can't compete, like professional atheletes, on the number and range of cases (especially successful cases) they have done. Their is no public mechanism for such information...Patients can't tell which doctors are up to date on the latest treatment options. Doctors get known often on the basis of how many research papers they have had published, which is not necessarily an indicator of how good a clinician may be.

I am not even going to get into the whole mess with regards to insurance companies and the underlying threat of malpractice suits that colors every patient encounter here in the U.S....

Awash in Information, Patients Face a Lonely, Uncertain Road - New York Times: "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."...

Such quandaries do not apply only to life-rattling illnesses. Last summer, with the second joint of his left big toe painfully throbbing from gout, Carl Schneider, a law professor at the University of Michigan who had already consulted his internist and a rheumatologist, leaned wearily against a hospital wall as three other doctors argued over which regimen he should follow. One doctor handed him a 20-page Internet printout that cited gout treatment studies, none of them definitive.

"At 57, it's a little late to be starting medical school," Mr. Schneider remarked acidly. "But the burden still falls on me, having to pick among opinions." ...

Like many patients, Ms. Gaines did not turn to a primary care doctor to help coordinate her care or aid with decisions. Increasingly, that soul-healing doctor-patient relationship has become harder to sustain. Whipsawed by insurance plans, patients frequently switch physicians. Pressed by diminishing reimbursements, those doctors are building ever larger, more unwieldy practices, with less time for each patient.

The strain has left doctors themselves feeling exhausted, angry and heartbroken.

"My visits are almost ludicrous," said Dr. John Russo, an internist in West Orange, N.J., who sees 5,000 patients a year. "But economically you have to see so many more patients than you should, just to keep the lights on. You can't sit and talk and really get an entire history. So you do what you were taught as a resident: do more tests, don't spend more time with patients, getting to know them."...


Until the late 1960's, patients perceived doctors, then almost exclusively white men, as unassailable figures of authority. They knew best. But during the social and cultural upheaval that ushered in the women's rights, civil rights and consumers' rights movements, the paternalistic authority of the physician became deeply suspect. Women fought to join the conversation. Challenging the mystification of medicine, the Boston Women's Health Book Collective published "Our Bodies, Ourselves," a landmark guide. Women changed conventional wisdom about the prevalence of hospital deliveries, hysterectomies and mastectomies.

With the introduction of Medicaid and Medicare in 1965, health care began to be seen as a right, not a privilege. Patients repositioned themselves as consumers of health care, entitled to as much information as possible. Support groups sought to empower patients with booklets and questions for doctors. ...

By the 1980's, opinion seeking could even turn into doctor-shopping for specific procedures. Patients started suing doctors, an escalating conflict leading to, among other things, high malpractice premiums, Congressional debates and, in the examining rooms, overcautious conversations between litigation-alert doctors and patients.

Within the past decade, the shift in the doctor-patient conversation - from, "This is what's wrong with you, here's what to do," to "Here are your options, what do you want to do?" - became all but complete. Baby boomers had gotten what they had asked for. And then some.

"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. "...

"I wondered if he thought about me when I wasn't there," Mr. Sommers said. "I wrote a heartfelt note to my doctor to let him know why I wasn't coming back. But I never heard from him."

Even though he recently found a new neurologist, he does not know if this doctor will become the medical cheerleader and adviser that he longs for. "So my gatekeeper is my girlfriend, not my doctor," Mr. Sommers said. "We hash it all out, we figure out the options. She has a good, clear focused head about this stuff."...

Last summer, as doctors tried to figure out why her husband's urine had turned the color of cola, Joyce Rich went to work figuring it out herself.

Mrs. Rich, 58, a nursery school teacher from New City, N.Y., had to do something with her nervous energy. Like so many people who, when threatened by illness, feel frightened and helpless, she turned into a formidable Googling machine. Doing the homework gave her the comforting illusion of having a measure of control. ...

With patients having so much medical information, being a primary care doctor these days means donning armor daily. Here comes the public, bearing pharmaceutical brochures, sheaves of Internet printouts, pages of time-consuming questions: Vioxx? Total body scans? Why didn't you recommend a carotid artery Doppler?...