The rejiggering of how doctors, hospitals, governments, and insurance companies do business together—as though they comprised a widget industry—puts the emphasis on procedures and systems instead of people, Kagan argues. “American health-care is very much about fitting into the boxes. I worry about the fact that we create structures where we’re checking boxes rather than figuring out what individual patients need.”

In her clinical practice, Kagan is very much about listening to how patients and families talk about themselves, their lives, and their ills. “I think the typical thing—and this is what we teach clinicians—is to have a basic framework of, If this, then that. We try to use logical paths for decision-making. I think that it’s harder to teach the relationship piece, though we emphasize it quite a bit in medical and nursing education.”

Because they are experts, Kagan points out, health professionals often feel pressure to provide answers, to tell patients what they need to do rather than listen to them talk about what hurts, where the itch is, how tired they are, what they’ve done about it, and how illness has changed the way they live. It is precisely in these narratives, she has discovered, that much of the needed diagnostic and treatment information can be found. She acknowledges the time burdens that doctors and nurses labor under—the need for efficiency imposed by managed care. But putting in the time upfront, she insists, to hear “symptom stories” or to probe for what patients are experiencing—and what they hope for—is not more time-consuming but less.

“As nurses, it’s our responsibility to step back and say, ‘Let’s find out where this person is now and what responses to illness are evident, and not make judgments about how much assistance this person needs.’ My job is to fix what I can—not to cure diseases but to fix symptoms and side effects—and then help people sort out for themselves how they’re going to live with whatever remains. My job is to ask, ‘What’s bothersome, and what do you want to do about it?’”

Much of Kagan’s research and clinical practice relates to care of the elderly, particularly old people with cancer. Since cancer is the third leading cause of death in adults over 65, notes Strumpf, the nurse-scholar’s approach to health-care will become increasingly important as society grows older.

Currently, more than 12 percent of the U.S. population is age 65 or over, which comes to about 35 million people. Over the next three decades, the number of older Americans is expected to double. They will make up nearly 20 percent of the census count by 2030.

In 1900, the average life expectancy was just over 47. By 2050, it is projected that the average American will live a little more than 80 years. “There is, I think, a very fervent American hope or belief that health will come without a price and that cure comes at no cost,” Kagan muses. “Ours is not an infinite lifespan. I don’t think we’ll be able to cure the fundamental problem of senescence—the fact that the minute our organism is fully formed there are aging processes that immediately kick in—and with senescence comes increased risk of disease.”

As the population grows older, society will assume an ever greater burden of disease and disability—the cost of longevity—including a higher incidence of cancer. Cancer rates increase sharply with age. More than half of all malignancies and more than 70 percent of cancer deaths occur in the elderly. “What we know about cancer is that you’re much more likely to be old and have cancer than to be young. So the common experience—and one that most American adults these days have at least cursory familiarity with—is that you’re old, you’re frail, you have cancer, you have other chronic diseases.”

There are now more than 4 million people age 85 and over. This most frail age group is the fastest growing segment of the population and is expected to hit 19 million half-way through the 21st century.

“It’s a really scary curve,” says Kagan. “Those people will have differential disease patterns for which our systems of care are not well equipped, and we’re still allocating way too few dollars and way too little public policy and thought to figuring out how we’re going to create a seamless system of care that doesn’t make people who will be providing for their older relatives wish that they could die.”

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2004 The Pennsylvania Gazette
Last modified 02/27/04

FEATURE:
Sarah Kagan’s “Genius Idea”
By Peter Nichols
Photography by Addison Geary

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