Hospices Are Succumbing to Falling AIDS Mortality

In the shuttered twilight of his bedroom at the Linn House hospice in West Hollywood, Richard Bettger turned to a friend and asked, “Am I dreaming or am I really going to die?”

Stanton Schnepp didn’t know what to say. The two men had met five years earlier at Gold’s Gym, when both of them were fit and healthy. Now Bettger, his skin gray, his hair limp and thin, was dying of AIDS.

“Yes, Rich,” Schnepp said finally, “you’re going to die.”

That was slightly more than a year ago. Today, Bettger--his skin ruddy, his hair thick and curly--tells the story of his brush with death with a sense of wonder. For he has done something few people can claim: He has outlived his hospice.

Bettger is an example of what is being called the Lazarus syndrome, the phenomenon of AIDS patients who have been nursed back from the brink of death with new drug therapies. And Linn House, which closed earlier this year, is one of the casualties--a hospice for AIDS patients that suddenly saw demand for its services all but disappear.

Similar stories are being told around the country as hospices have shifted their priorities to other diseases or have closed. Of those that dealt solely with AIDS, “I’m not sure there are any left,” said Stephen Connor, vice president of the National Hospice Organization.

In San Francisco, the Coming Home Hospice opened in 1987, largely to treat AIDS patients. “If we have one AIDS patient there now, that’s a lot,” manager Jeremy Hollinger said.

To be sure, the decline in AIDS mortality is not universal. Outside the United States, the disease continues to run unchecked through many underdeveloped countries. And within the United States, minorities--especially African Americans--continue to die at rates much higher than for whites, and have never been as well served by residential treatment centers.

Still, the gains have been tremendous, and the closure of Linn House might be seen as a memorial of sorts to the end of a terrible era. Or it could be, as some would have it, a sign of hubris and miscalculation by the AIDS Healthcare Foundation, which ran Linn House.

Either way, its passing marks a turning point--in the life of a disease, and in the lives of its patients.

Before he was stricken with AIDS, Richard Bettger was a man of boundless energy, friends say. A small-town boy from Angels Camp, Calif., he had begun his career in the 1970s selling pacemakers. He was young and gay and brimming with life’s possibilities.

By the mid-1980s, the AIDS epidemic was spreading rapidly. A Silver Lake chocolate wholesaler named Michael Weinstein was becoming active in AIDS issues. Pharmaceutical companies were working to find a cure. And Bettger had moved to Los Angeles, where he would become a successful mortgage loan officer.

AIDS, he thought, was something that happened to others.

In 1986, Bettger agreed to join a friend for HIV testing at the Gay and Lesbian Center in Hollywood. He was just going along for support. When the results came in, he told the counselor he had no reason to worry.

“I hate to tell you,” she said, “you’re positive.”

Bettger’s response was to work harder. He was making deals seven days a week. In his off hours, he went to the gym.

In the next year, 1987, more than 1,000 people died of AIDS in Los Angeles County. Many, rejected by their families, had nowhere to go. Some died on gurneys at County-USC Medical Center. Aghast at their plight, a group called the Los Angeles AIDS Hospice Committee, led by Weinstein, successfully lobbied the Board of Supervisors to establish a fast-track program to build hospices where AIDS patients could die in dignity.

By 1988, the board had committed $2 million to the effort and Weinstein’s new AIDS Hospice Foundation had opened the region’s first AIDS hospice, Chris Brownlie House, near Elysian Park.

The hospice quickly had a waiting list. Weinstein, whose abrasive manner was earning him enemies, began expanding the focus of his organization. By 1990, the AIDS Hospice Foundation had become the AIDS Healthcare Foundation.

Meanwhile, there were tantalizing signs of progress in AIDS research. In 1990, at the Sixth World AIDS Conference in San Francisco, researchers began talking about the potential of new drugs, some of them known as protease inhibitors.

Dr. Anthony S. Fauci, chief of AIDS research at the National Institutes of Health, predicted that by the mid-1990s, AIDS would become a chronic, manageable condition.

All this was interesting but hardly paramount to Bettger. He still had no symptoms of AIDS, and he seemed to be leading a charmed life.

In 1993, business was booming. Bettger, cheerful, warm and ambitious, would make more than $200,000 in the mortgage business that year. And he would reconnect with an old love, a man named Chris. The two began living together in Bettger’s Studio City apartment.

And then Bettger entered what he calls his “dark night of the soul.”

On Jan. 14, 1994, Bettger asked Chris to move out. Their relationship wasn’t working. Three days later, the Northridge earthquake struck.

Bettger’s home and office were badly damaged. The mortgage business crashed. “I lost everything,” he said. “The relationship, my ability to work. I couldn’t focus. I didn’t have any energy. . . . I just couldn’t make it work.”

Fading Fast With AIDS

Although he didn’t immediately recognize it, he was sick. He moved back home to Angels Camp.

In late 1997, during a visit to Sacramento, he was diagnosed with AIDS.

Bettger sank fast. He was listless, prone to high fevers, and often had trouble breathing. He developed a bone marrow disease. It became clear that he couldn’t stay in Angels Camp, but he didn’t know where else to go.

Salvation came, improbably, in a copy of Metropolitan Home magazine that he picked up at a doctor’s office. It featured a story on the Linn House hospice. One picture showed a sun-splashed bedroom with a double bed and flowers on the night stand. Another depicted the dining room, with wicker chairs, a cathedral ceiling and a restored Art Deco mural.

To Bettger, who had just been told he had less than six months to live, it looked like one step short of heaven.

Linn House had been in the planning stages since about 1990. The AIDS Healthcare Foundation broke ground on June 6, 1994. By the time the hospice was ready to open in early 1996, AIDS researchers were beginning to talk excitedly about a “drug cocktail” of protease inhibitors and antiviral drugs.

John Maceri, then chairman of the city’s advisory committee for AIDS housing issues, remembers Weinstein appearing before the panel to seek funding for Linn House. “We said, ‘We don’t need another hospice facility. . . . Surely you can see the trends in your own clients.’ ”

But Weinstein says he received the go-ahead on city funding in 1994, before he knew about the new drug therapies. In any case, after “bullying everyone in town,” according to Maceri, Weinstein opened the 25-bed hospice in the spring of 1996. It had cost about $4 million, including $1.1 million in city-administered federal funds.

“We hoped for the best and prepared for the worst,” Weinstein said.

‘I Was Ready to Die’

In the early days of Linn House, Weinstein recalls, patients were dying almost daily. “Gurneys with body bags rolling out was just no big thing, just an everyday thing. It was the equivalent of being in a war zone,” he said.

After a while, though, the gurneys started rolling out less often. There were fewer memorial services. Occasionally, a patient would get well enough to leave. Beds began to go unfilled.

AIDS deaths in Los Angeles County declined by 52% in 1997 from the previous year, and then by 34% in 1998. At the 12th World AIDS Conference in July 1998, researchers said AIDS in the United States was becoming a chronic, manageable disease, just as Fauci had predicted.

Bettger moved into Linn House on July 1, 1998.

He was so weak that it was a major effort to get out of bed. His sight and hearing were failing. He suffered excruciating pain. His weight fell from 175 to 128 pounds in five months.

“I was ready to die,” he said. “I just wanted to go peacefully.”

Dr. Jeff Myers, the medical director of Linn House, had a job that was, in many ways, inimical to what he’d been taught in medical school. He wasn’t there to cure anyone, but to let them die in comfort.

On the other hand, basic medical ethics dictated that he had to try to save a life if he could. And in Bettger’s case, he thought he could.

First, Myers treated Bettger with antidepressants to combat a crushing depression that had caused him to give up on life. When Bettger began to respond, Myers started him on other drugs, including a cocktail of the new anti-AIDS medications.

About that time, Stanton Schnepp ran into Bettger’s old love, Chris, at the gym. “I said, ‘You know, Rich is going to be dying soon. I don’t know if you have any interest in seeing him or talking to him before he dies, but if you do, you’d better do it now.’ ”

“He came right away,” Bettger recalled. It was a transforming moment. “He said, ‘Rich, I’ll be here for you every day I’m in town . . . and I’ll get you up and going.’ ”

Through a combination of Chris’ visits, the medication and Bettger’s own resolve, he began to recover.

“It was like a miracle, like a light shone on him,” said a friend, Linda Michelle.

On Nov. 11, 1998, Bettger celebrated his 49th birthday. A memorial service was being held on the first floor of Linn House; upstairs, the staff held his birthday party. During the party, he says, a nurse told him he’d have to go. He was too well.

There were a lot of Rich Bettgers at Linn House. The AIDS Healthcare Foundation had already closed its first hospice, Chris Brownlie House, in 1996. By last spring, with only a dozen or so patients at a time, Linn House was no longer financially viable, Weinstein said.

It was hard to justify, he said, “when the money we were losing could provide care to 6,000 or 8,000 patients” at the foundation’s clinics.

For about six months, the AIDS Healthcare Foundation tried converting Linn House into a short-term residential care program. But at the end of September, Linn House closed and was put up for sale.

Since then, Weinstein and his AIDS Healthcare Foundation have come under scrutiny and criticism.

“To close the place down and say, ‘It’s for sale,’ we’re not sure is entirely allowable,” said Ferd Eggan, the Los Angeles city AIDS coordinator.

With so much government money sunk into Linn House, Eggan says, it seems possible the AIDS Healthcare Foundation had a legal obligation to stay open.

Weinstein says the foundation had no legal obligation to operate Linn House beyond September.

Weinstein thinks Linn House would make a good drug and alcohol rehabilitation center. The foundation still runs a hospice program out of its Carl Bean Center in Jefferson Park, but most of the patients there are on the rebound.

AIDS researchers, meanwhile, are warning that AIDS deaths seem to be increasing again, suggesting that the new drug cocktails don’t work for everyone--or that not everyone can stick to the complicated regimen they require.

Bettger has started life anew. He has returned to the mortgage business. He tells his story to teenagers through an AIDS awareness program. He has become deeply religious, attending church regularly and becoming active in Promise Keepers, the Christian men’s organization, despite its well-known antipathy to homosexuality.

“Life is fun now,” Bettger says. “The past--the past is to be cherished. But there’s a lot of joy to come into my life now.”

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AIDS Deaths Fall

AIDS deaths have fallen dramatically in the United States since the introduction of new drug therapies in the mid-1990s. With mortality rates declining, fewer AIDS patients have been seeking hospice care.

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Sources: Centers for Disease Control and Prevention, California Health Department