Sunday, February 24, 2008
News, In this Issue...

Through the eyes of a patient

A national health care plan won’t improve the quality of American health care—that will have to change from within

Through the eyes of a patient

Part One of a three-part series, “Atlanta’s Struggle for Quality Health Care”

By Stephanie Ramage

At least since the early 1990s, when then-First Lady Hillary Clinton tried unsuccessfully to introduce a national health care plan, the concept of universal health care in America has been a frequent and valid topic of discussion. This year’s presidential primaries have amplified that discussion, and with some 40 million people uninsured and hospitals buckling under the weight of providing care for those who can’t pay for it, it’s no wonder.

But universal health care won’t solve the problem of the lack of quality of health care in America. According to a survey sponsored by ABC News, the Kaiser Family Foundation and USA Today, of more than 1,200 people polled by phone in September 2006, 52 percent said universal health insurance coverage would have no effect—for better or worse—on the quality of the health care they receive. Elliott Fisher, director of the Center for Healthcare Research and Reform at Dartmouth Medical School, agrees.

“Universal coverage doesn’t solve the problem of lack of quality health care,” he says. “Having universal access to a chaotic and fragmented system doesn’t solve the problem.”

Or, to be more precise, problems—because there are many. First, there’s the dysfunctional distribution of doctors: In places like Atlanta, we may have too many specialists in proportion to a relatively small number of general practitioners. Then there’s the crushing shortage of nurses. There’s the corporatization of health care—something that often puts profit concerns well ahead of patient well-being. There’s the mountain of paperwork required in order for doctors and hospitals to be reimbursed by insurers or government agencies for their work.

And there’s also a culture so busy thumbing away on BlackBerries and Trios that it’s losing the ability to do the one thing most important to healing the sick: communicating—listening to, and having honest conversations with, patients. Despite their proficiency with BlackBerries, doctors in the U.S. are far less likely than their counterparts in other developed countries to use an electronic records system that would allow them to see their patients’ histories with the click of a button, saving their patients a lot of hassle and saving the system a lot of money by not duplicating tests.

For almost a month now, I’ve met with half a dozen patients and their family members, interviewed nearly a dozen health care professionals, from doctors to nurses to social workers, and read more than 40 studies and articles to see what has happened to the health care system that used to be the envy of the world. I wanted to find out how it became ill and what it will take to heal it.

The things I’ve learned are surprising. First, what most patients and their families complain about in terms of the quality of health care are so-called “little” things like having hospital staffers who are respectful of patients, having clean, quiet and reasonably spacious rooms, or just getting a blanket. Second, we can fix our system’s quality problems, and med schools and professionals all over the country are already taking the first steps toward doing exactly that—but to do that, we’ve got to make patients the center of our health care system.

Which brings us to the fear of retaliation by the medical establishment that often prevents patients and their family members from speaking out. Not one patient or family member interviewed for this series would agree to allow The Sunday Paper to use his or her real name. “I might get sick tomorrow and have to go to the hospital,” one man said. “And they’ll remember what I said about them.”

So we’ll call the man who said that “Joe.”

“SHE DESERVED A BETTER DEATH THAN THAT”

In June 2006, Joe’s wife Maggie (not her real name) started complaining of lower back pain. She went to her general practitioner, who referred her to a physical therapist. But after several sessions with the physical therapist, the pain had gotten worse. Maggie went back to her GP, who referred her to an orthopedist. The orthopedist ordered an MRI.

By now, it was late summer and Maggie was in excruciating pain. She found the car ride from her home in Decatur to Snellville for the MRI very uncomfortable. Nonetheless, with Joe by her side, she suffered through it. Then they went back to the orthopedist.

“He said the MRI didn’t show anything,” says Joe. “And he was kind of looking at us as if we just wanted drugs.”

Then, Maggie showed the orthopedist her swollen feet, legs and abdomen.

“He told her to go back to her GP immediately,” says Joe. “I could tell that he had some suspicion that it was serious.”

The GP sent her to the emergency room at DeKalb Medical Center (DMC). Once there, a doctor ordered tests on fluid drawn from her swollen areas. The next day, on her 49th birthday, Maggie was diagnosed with pancreatic cancer.

“She was put in a room in the general part of the hospital,” explains Joe. “It was just so noisy there. The oncologist was great. But it was so damn noisy.”

Such complaints are common to hospitals everywhere. Noise may not seem like a serious problem, but having a quiet environment can help patients to feel more comfortable.

Joe describes a cacophony, from the loud chirping of the monitoring machines to the staff who would knock and immediately barge in without waiting to hear whether Maggie was sleeping, to a “construction joist” in the floor outside the room’s door, which amounted to a metal speed bump over which carts rolled all day, “making incredible noise”—and even to Maggie’s bed.

“She had this bed that was designed to prevent bedsores,” says Joe. “But I don’t know how anyone could sleep in it. It had all these baffles and gadgets and it would sense her weight shifting and would readjust, but it would make these hissing noises and it would make a noise like a rattlesnake, all the time.”

Four days after her admission, Maggie was moved to an end-of-life care suite. It was spacious and quiet.

“At first, I thought ‘Man, this is great. Things are going to get better now. Why didn’t they put her in here from the start?’” says Joe. “Then I realized that it was the ‘death suite’—that’s what I called it. It was really nice, but I suddenly thought ‘Oh no, this is where people go to die.’”

By then, the cancerous growths on her organs had blocked Maggie’s bowels and she was vomiting fecal matter. She was very weak and obviously fading. Fourteen hours after Maggie was moved to the end-of-life care suite, she died.

“We did at least have enough time to tell each other what we meant to each other,” Joe says quietly. “She was just the sweetest, sweetest little person, and she deserved a better death than that.”

Maggie’s insurance provider, Blue Cross/Blue Shield, did a good job, Joe says. And her oncologist, he says, was great. What bothered him were little things that sick people in hospitals shouldn’t be bothered with—things like noises and staff barging in; and all that initial shuttling from doctor to doctor his dying wife had to endure.

DMC’s spokesman, Mike Tu, never answered our questions relating to the hospital’s noise policies or when exactly terminal patients are moved to end-of-life care suites.

Instead, Tu sent us this statement: “DeKalb Medical appreciates patient comments, and we are profoundly grateful for feedback which enables us to improve service and clinical care. DeKalb Medical has an entire department, Patient Relations, devoted entirely to addressing patient concerns, fulfilling patient requests, and responding to areas of improvement as identified by patients. Moreover, the independent Quality Institute, HealthGrades Inc. and other independent organizations have independently reported a very high satisfaction rate by the vast majority of DeKalb Medical patients. More than 99.9 percent of patients who have written letters or e-mails [emphasis added] have thanked DeKalb Medical for its professionalism, dedication and compassionate care. We invite the Sunday Paper to speak with these patients in addition to focusing on the small fraction of one percent of patients who've identified areas of improvement.”

We agreed to talk to satisfied customers of DMC. Tu faxed us letters of thanks from two former patients. One was a woman whose baby had been treated in the neonatal ward, but her experience was not analogous to Maggie’s. The other had been an oncology patient. I personally delivered my business card and a note requesting an interview to the woman, who answered her door with a phone at her ear and asked if she could call me later, but she never did. Her letter, dated June 2007, however, reads in part: “I was referred by my gynecologist to DeKalb Medical where I encountered a series of skillful oncologists, surgeons, and staff. Thanks to their expert attention, I now am healthy and looking forward to my future.”

As for all that shuttling from GP to physical therapist to orthopedist that Maggie endured, Dartmouth’s Fisher says some areas, like Atlanta, don’t have enough general practitioners, the doctors who are the front line troops of our health care system. Consequently, in order to handle heavy patient loads, they refer patients to specialists rather than ordering tests themselves. (GPs are entirely capable of much of the care, like ordering tests, that we associate with specialists.)

To complicate the shuttling, each new doctor’s appointment is like starting all over again, so much so that some cancer patients, in particular, get into a habit of carrying their entire medical file from one doctor to another. Fisher suggests care groups use a system that allows doctors to electronically record and access the entire medical history of a patient. They can put in the patient’s ID and see everything from MRIs to blood tests to vaccinations, no matter which doctor ordered them or where they were done. A small portion of groups already do that, but a 2006 Commonwealth Fund International Health Policy Survey showed that of primary care doctors in Australia, Canada, Germany, the Netherlands, New Zealand, the United Kingdom and the U.S., only those in Canada used electronic records less than those in the U.S.