THE REAL-LIFE EDUCATION OF A HEALTH-CARE REPORTER

BY MADGE KAPLAN

 

We're airborne and en route to Atlanta, to a conference for health-care journalists. My colleague points out a piece in Time about a geriatric care manager who can be hired for $75 to $125 an hour. "Oh" I say, "we could never afford that." She looks puzzled: "Huh?" she says. "I thought this might be useful for your workshop," a panel I would be moderating about the health professions. "Of course," I say. "Sure." But I have to laugh. I had been thinking about my dad.

The panel went fine, but lately, all my work is subject to distraction. In 1998, my father suffered a stroke. He now must lean on his family, just as surely as he must lean on canes and walkers, to navigate and negotiate new kinds of services. And I had no idea how all-consuming being a family caregiver -- even a long-distance caregiver -- would be.

Two and a half years ago, when this family medical ride began, I imagined I was a lot more powerful. Not only that -- and here comes the confession -- I felt a rush of excitement, once my father was out of danger. He was in an acute-care hospital, the prime locus of our country's experiment with managed care. I'd get a ringside seat. I would "learn" new things while negotiating with providers. And oh, the story ideas I would accumulate along the way!

I have story ideas all right. But they are not the ones I expected. They often come to me in the middle of a sleepless night. What I have discovered is this: there is a kind of theoretical knowledge of the health-care system and a way of viewing it from on high. And then there's the kind that presents itself much more slowly in the throes of trying to deal with the system, in real time.

I fear that health journalists may be increasingly tempted to soar above the messy stuff, especially when we have new discoveries in medical science to keep us aloft. But down here in the trenches, whenever I speak to anyone who's had recent high-intensity involvement with health care, I find they have stories that equal or surpass mine. So, despite my exhaustion and occasional disillusionment, I'm mapping out some new lines of inquiry.

They're rather like small thorns, I hope, in the side of an increasingly powerful medical p.r. industry that will one day dictate the health-care beat unless we journalists keep insisting upon our own mission. Here are some observations I hope to turn into solid reporting:

* Greater consumer knowledge is not really welcomed by the nation's hospitals. Yes, there are exceptions. But the typical acute-care hospital today cannot seem to function with patient or family member as informed consumer. The term sounds nice but it doesn't fit anywhere in our beleaguered system. If you press hard enough, you're included and listened to -- begrudgingly -- and dubbed a troublemaker, not a partner. Why are hospitals such laggards in this respect?

* Doctors still don't get it. This complaint is hardly a new one, but almost no one seems to be telling them that paying closer attention to informed patients and relatives is not only more humane, but also a way to sharpen diagnoses and reduce errors.

* Because our society hates the idea of growing older, we'd rather talk about prescription drug coverage for seniors than custodial care. Affordable medicine is important, but we are about to need an army of trained workers to care for aging Americans trying to get along at home. The lack of qualified attendants and aides to help with bathing, meals, and so forth, along with the absence of affordable insurance coverage for these services, is about to take on crisis proportions.

* Family caregivers are not all alike. Some people aren't up to the task emotionally or physically: they lack the skills to care for a frail person at home or to run interference with the health-care system; not everyone can adjust their lives to assume this added responsibility. So the idea of tax credits to help live-in family caregivers may be too limited. Who's paying attention to the actual needs and circumstances of today's family caregivers?

* Talk of administrative simplification in health care is fashionable, but talk is as far as it goes. Medicare actually has claim forms that state across the top: Denial Purposes Only. To get a supplemental insurer to pay up, one has to go through months of paperwork, filing for something both parties -- Medicare and patient -- already know will be denied! This madness is only the tip of an iceberg that the press must bring to the surface.  

My personal experiences have given me as a journalist a deeper appreciation of the everyday problems of our health-care system. With all the change we hear about, it's been radicalizing to discover how much things have stayed the same. That insight alone is worthy of exploration on the health-care beat.