On a humid May afternoon in Vienna, 74-year-old Al Hlavin sits in a reclining chair in his bedroom watching Dog Whisperer. In this episode, a spoiled Pomeranian won’t stop biting strangers. Her owner doesn’t know what to do.
“It’s humbling,” Hlavin says.
Hlavin is suffering from a neurological disease so rare that it was discovered only in 1968. Called corticobasal degeneration, the disease has, over five years, steadily robbed him of the ability to speak and walk. He hasn’t left the bedroom in months.
Hlavin’s wife, Martha, sits on a bed nearby. Nineteen years younger, she has the tall, straight, slim carriage of a runway model. Before meeting Al, she answered phones in the Capitol Hill office of Michigan congressman Carl Purcell and wrote a guide to dating for single Catholics. With her direct manner, she wouldn’t be out of place dispensing rapid-fire dating advice on a daytime talk show. Instead her life is focused on this one room in Vienna and its lone occupant.
Linda Cooper enters the bedroom. She’s been a nurse for more than 40 years, a hospice nurse for eight—she came to the field after seeing the care her father received from his hospice nurse. Six years before Hlavin signed on to the service, his mother was her patient. When Cooper talks, her face is infused with a softness you see only in those who’ve dedicated their lives to care.
“Did you sleep well?” she asks Hlavin.
“How’s the pain?”
“It is humbling,” he says.
He and I sit watching TV. The Pomeranian is miraculously healed. The happy family hugs the Dog Whisperer. I look over and Hlavin is crying. He doesn’t have the muscle control to wipe away the tears.
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Linda Cooper works for Capital Caring, the second-oldest and fourth-largest hospice in the country; it serves an average daily caseload of 1,100 patients in the Washington area. Capital Caring CEO Malene Davis says its goals are simple: “Quality of life for those at the end of it. The best pain management possible. A way to be with the ones you love.”
Hlavin has been able to stay at home because of the work of Capital Caring’s doctors, nurses, social workers, and certified nursing assistants. Because he’s at home, his three sons—ages 22, 20, and 14—are constantly nearby, their youthful exuberance a welcome lift. (He also has five children from a previous marriage.) Every morning, John, the youngest, walks to school through the woods outside Hlavin’s window and waves.
“Were it not for hospice, he’d be dead or a number on a chart somewhere,” says Martha Hlavin. “Instead we’ve been given the opportunity to experience this process here at home. That’s a precious thing.”
To join hospice, you must have a life expectancy of less than six months. You can pick up the phone and call a hospice agency directly if you think someone in your family might qualify, and if a physician determines he or she does, you could have medical, psychosocial, and emergency plans in place by the end of the day.
Approximately 1.6 million US patients received hospice care in 2010, more than double the number of just ten years before. In 2000, there were 2,315 hospices in the country; in 2010, there were 5,150, including 20 in the Washington area. And while private residences are still the primary location of most hospice care in the United States, hospice increasingly serves patients in nursing homes, assisted-living facilities, and hospitals.
This rapid spread of service, almost entirely covered by Medicare and Medicaid, actually saves money. According to a 2007 Duke University study, the average hospice patient reduces Medicare program expenditures by $2,309 during the last year of life. In evaluations, patients also report that hospice care markedly improves their quality of life.
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With the breakneck expansion come concerns, however. First is the challenge of regulating such explosive growth. Thousands of patients are fraudulently signed on to hospice before they qualify, milking the government of tens of millions of dollars a year. For-profit hospices, a rarity a decade ago, made up half the nation’s total in 2010, bringing new levels of competition and regulatory complexity.
Another issue is that a great percentage of patients come to the service late. “One-third of patients die within seven days or less,” says Jon Radulovic, the National Hospice and Palliative Care Organization’s spokesman. Lengthening the stays would increase their quality of life and financial savings.
Even with all the challenges, the growth of hospice has sparked a remarkable—and largely untalked-about—transformation of the American health-care system. While politicians and pundits debate the role, size, and future of Medicare, it has been changing all the while. Hospice care—structured medical care with comfort, not cure, as its goal—fulfills many of the goals of health-care reform: cost savings, better utilization of services, patient benefits. And as baby boomers—the 78 million Americans born between 1946 and 1964—get older, hospice’s role in American health care will become more important.
Though our cultural discomfort with dying keeps it off the front pages, hospice is very much at the center of this national moment.