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.
• • •
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.
Back in Vienna, I ask Hlavin how hospice has benefited him. He considers the question at length.
Not long after graduating from Johns Hopkins at age 19 with an engineering degree, Hlavin designed, built, and managed Fairfax County’s public schools. The 12th-largest school district in the country, Fairfax has myriad challenges, and Hlavin’s designs in ameliorating these were so effective and economical that the State Department hired him immediately after his retirement and sent him to 75 countries to build and monitor American schools abroad.
Hospice for Seniors
In recent years, the dramatic growth of the assisted-living industry, coupled with an older average entry age of 85 years, has fostered stronger relationships with local hospice providers. The partnerships make sense: Andrew Carle, founding director of the Senior Housing Administration program at George Mason University, says about one-third of assisted-living residents die in their communities. What's sometimes unclear, though, is how hospices and these facilities function together.
The preferred-provider relationship, in which an assisted-living facility recommends a hospice that it feels works well with its residents, is most prevalent. There are also inpatient hospice-care units—typically wings reserved for hospice patients. According to Carle, this type of arrangement is rarer because it requires a special license; it's generally available only in continuing-care retirement communities that offer nursing services as well as assisted living.
Regardless of how the relationship works, Carle says there's never any shared ownership or financial partnership between the two: "Families and residents living in assisted-living communities are allowed to utilize any hospice they want and should be ethically informed of such."
It's important to do your own research and make sure the hospice you choose offers the services your family member needs. Here are some questions to ask:
But about six years ago, Hlavin’s health began to deteriorate. Because corticobasal degeneration is so rare, it took doctors years to diagnose. Hlavin struggles to form the words to answer my question about the care he has received.
“When the words are taken away, who are you?” Martha says at last. “How do you live your life? The ability to communicate gone, independence gone, but the life and love still there. Who are you behind all this?”
Hlavin has been in hospice for nearly two years, much longer than expected, as his unusual disease has an unpredictable progression. “He’s on a lot of pain meds today,” his wife says.
He suddenly looks me straight in the eye. “It is a beautiful process because I have a chance to correct all the mistakes,” he says.
And then he’s gone again.
• • •
Though Western medicine can trace its roots back to ancient Greece, modern hospice care in America is little more than 40 years old. Most of its guiding principles were developed in the 1950s and ’60s by Cicely Sanders, a British nurse who brought them to the States in a series of lectures, and by the Swiss-born, Chicago-based psychiatrist Elisabeth Kübler-Ross, who in 1969 published On Death and Dying, identifying the stages of grief and advocating treatment that focused on the patient, not the disease.
Internist Matthew Kestenbaum, Capital Caring’s chief of medical staff, was ready to leave medicine altogether soon after finishing med school because he was frustrated by, as he describes it, the field’s “piecemeal, fractionized, and impersonal” flavor. Then he met a physician working in hospice. Now he could never imagine doing anything else.
Says Kestenbaum: “Someone’s in pain—and then they’re not. Someone’s scared—and then they feel at ease. What more is there?”
Which raises an interesting question: Is hospice’s true value in patient comfort and economic benefits or in addressing a deep longing for connection and reassurance? Perhaps nowhere in the country is the need for simple comforts as strong as in Washington, a city of unending conflict and striving and enormous responsibilities.
Or maybe hospice is about something even simpler.
“Dignity,” says Capital Caring CEO Malene Davis.
“Dignity,” says Martha Hlavin.
“Dignity,” says Dr. Kestenbaum. “If patients can keep that . . . .”
Or as nurse Linda Cooper puts it: “The best part of this work is when we can help people live until the end. It’s a road we all have to walk someday.”
• • •
The next time I visit the Hlavins, Al is bedridden and noncommunicative. His health has rapidly declined, precipitated by a fall at 3 in the morning. Family members have arrived from all across the country, including his five other children as well as grandchildren, neighbors, and church members. They go into the bedroom. They leave the bedroom. They disagree with aspects of his care or agree with them. But he is home.
In an alcove of the kitchen that Hlavin long ago designed, his wife reflects on all of this.
“What I see,” she says, “is how little we truly know of what’s inside each other. Is he in pain? Yes. Is it sharp and stabbing or dull and throbbing? Is he nourished by his faith or does he feel betrayed? Nobody knows.”
Linda Cooper emerges from the bedroom and stops to give Martha a hug. “Sometimes we can’t help as much as we’d like,” the nurse says.
A week earlier, when Al could still speak, Martha had asked him, “Do you want to talk about it?”
“What’s going to happen.”
“No,” he said.
Martha felt frustrated because she wanted to share in this last step, but she realized that the frustration was her issue, not his, and didn’t push the point. In the end, hospice can bring dignity, comfort, and quality of life but not always closure.
Says Martha: “It’s humbling.”
• • •
On July 3, 2011, Al Hlavin passed away peacefully at home surrounded by his family.
Freelance writer Josh Swiller can be reached at firstname.lastname@example.org.
This article appears in the November 2012 issue of The Washingtonian.