Online Extra: Saving Lives Shouldn't Be This Hard

I almost didn't live to write this story, thanks to the maddeningly hidden information I needed to make correct medical decisions

Of all the days I could have died, last Nov. 11 would have been the most pointless. It was 8 weeks after I learned that at 43 I had stomach cancer. In the morning, I was supposed to drink a barium shake to light up my insides for a scan. In the afternoon, I was supposed to have anesthesia so my surgeon could install a port to receive my chemotherapy. There was only one problem: If I drank anything before going under, there was a chance I'd vomit during anesthesia. And there was a small chance it could kill me.

Neither doctor knew what the other was planning to do. A hospital administrator had made both appointments since I'm enrolled in a clinical chemotherapy trial. She didn't spot the conflict. The doctors didn't have enough information to raise the red flag. So I sat in my radiation oncologist's office, the barium about as far from me as this keyboard is as I write, with a technician telling me to drink up.

And the only reason I know for sure why I'm still alive is that I insisted on calling the surgeon, who demanded I cancel the scan.


  Then I raged at the tech who happened to be there, demanding to know how this happened. Then she fetched a supervisor. I rained enough F bombs to turn the hospital into rubble, but I really only had one question: "Why the F was preventing this my job?"

In fact, it is -- and the primitive state of communication in medicine is why. A medical-records network like what President George W. Bush is supporting, would have let each doctor know what the other was planning and would prevent such errors -- which kill as many as 195,000 Americans each year. But that system is years away. In the meantime, the grim fact is that you're on your own, whether you know what you're doing or not.

The health-care system doesn't give patients the tools or the support they need to make confident decisions about choosing doctors, treatments, or hospitals. And though patients are using the Internet more than ever, many don't know the most effective ways to get the data they need when they need it most. I didn't. I know from being a reporter that after years of delay, the digital hospital is beginning to emerge. I know as a cancer patient -- excuse me, that's cancer survivor now -- how critical and how overdue it is.


  In fact, I found the system almost conspires to keep you from learning what you need to know to manage your care. My doctors, perhaps wary of seeming to make promises I could hold against them later, were chary with information even about themselves. My surgeon John Cunningham, for example, declined to mention that a trade directory had named him one of New York's top surgeons. Modest, perhaps, but I wish he had bragged. It was something I needed to know.

Many Web resources I consulted were shockingly bad: Even Google was regularly stumped by my search queries about stomach cancer treatments, and I'll reserve a special place in purgatory for the New Jersey Health Dept.'s useless Web site. And my hospital was no help at all, either. There was no staff to help with my research, and they didn't even give me access to a computer when I was in the hospital.

What should hospitals do? First, they ought to give patients access to the Internet. My hospital, a good one in a very tech-savvy New Jersey suburb, didn't have any way for me to get online. There was no PC in a patient lounge, no point in my bringing a laptop into my room, nothing. The sum of the written information I got in five days in the hospital was two three-page Web printouts that my in-house doctor brought me.


  And one of them, from the Cleveland Clinic's Web site no less, gave treatment advice for colon cancer -- which can come from the same gene my doctors think caused my stomach tumor -- that I know from family experience to be wrong. The information I got wasn't nearly enough, and it wasn't until I got sprung from the hospital that I could even begin to research my illness or my options intelligently.

By the time I had access to any meaningful information, I was supposed to have made my big decisions. In fact, I had decided whether to have surgery (yes, I lost most of my stomach, along with about 50 pounds), whether to have it at that hospital or head into New York to a specialty cancer center (I stayed put), and who my surgeon should be. I was supposed to do it more or less in the dark, I guess.

I couldn't get access to much information about Cunningham beyond his partners' impressions of him and learned nothing at all about my hospital's safety record or ratings for cancer treatment. I got on the phone, mostly with doctor friends, and then I guessed. I happened to guess right. But I'm still pretty ticked off that I had to guess.


  Second, give patients help. If there's one thing I remember from reporting this week's cover story, The Digital Hospital, it's a hospital exec saying elderly patients can hardly be expected to understand their treatments when you can plainly see how baffled many are by the hospital's parking garage. It's not just older patients who have these problems, however: I'm young, smart, and my brain was basically soup, both from the stunner of my diagnosis and the fact that I'd lost basically half of my red blood cells.

Hospitals need to help patients learn how to study their conditions and their options. They're full of social workers, counselors, and even volunteers. Training them to train patients in learning about their diseases and their options is an investment in letting us learn quickly how to coordinate our own care. And it's a job a motivated candy-striper could handle. Even doctors, who are known to complain that patients rely on unreliable Web sites, should be way more active in helping us find something better.

What should patients do? First, use your insurance company. Among the most important payoffs from hospitals having upgraded their information systems is that health-care payers, from Medicare to HMOs, now know an enormous amount about hospital quality. And they increasingly are giving incentives to use the best. Sometimes, they will pay the good hospital a few percent more per each patient, figuring they can afford to because they'll save money by not having to pay for treating complications or longer hospital stays. Sometimes, they'll even give you a lower co-payment if you go where they guide you.


  More often, they'll designate a hospital as a "center of excellence" for treatment of a particular disease and actively push the hospital. In my case, a UnitedHealthcare nurse called me at home after the first of my two hospital stays to nudge me to switch hospitals and continue my treatment at Memorial Sloan-Kettering, the big-deal cancer center in New York. They didn't get to me until after I had made my decisions, but they knew much more about what difference moving to Sloan might make than I realized at the time.

It wasn't until doing my reporting for this week's cover that I grasped what United's strategy really was. And, contrary to my suspicions back then, they weren't pushing the rock-bottom cheapest option. United execs say about 90% of the people who seek their advice about where to go end up taking it. If I had it to do again, I'd call United first.

Second, get a hospital report. I wasted a ton of time trying to learn about my hospital options. To get the real scoop on a hospital in a form you can understand, you need only 10 bucks and two words: The Colorado consulting firm rates hospitals using a quantitative formula based on results of Medicare cases. From orthopedics to heart disease, their ratings break down hospitals' practices in detail and reduce things to simple star ratings you can decipher even when you're in pain and your head is spinning.


  Very basic info is free, and a long summary of a hospital costs $9.95. In a hospital, an aspirin seems to cost three times that. Next time, I'll demand any hospital that wants my business give me their HealthGrades scorecard. It's no different than insisting that a used-car dealer give me a vehicle-history report. At least as much is at stake.

Ultimately, though, I have no complaints. I finish chemotherapy in about a week, my tumor didn't make it to my lymph nodes, and the decisions I've made seem correct so far. Indulge me as I say thanks: John Cunningham saved my life. Adam Barrison, my gastroenterologist, became an instant friend when I most needed one, and he got the diagnosis right. And my oncologist Michael Wax, on top of recommending a clinical trial that is among the most promising out there (I had six weeks to check out the trial, and I did, thoroughly), has been the strangest blessing of all: a cancer specialist whose bent sense of humor got me to laugh at myself and my condition. As Dr. Wax himself might say, who knew?

But like any patient who looks at U.S. health care critically, I know the system doesn't give patients and doctors the information they need when they need it. It's a shame. And as consumers' understanding of what technology can do to prevent medical mishaps like mine rises, it will soon be seen as malpractice. Lives are in the balance, including yours.

By Timothy J. Mullaney in New York

Edited by Patricia O'Connell

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