Another Choice : Hospices for AIDS Cases: a Beginning

Soon after he brought Clay McMullen into his Los Feliz home last August, Glenn Carlson began to dread the night. For hours, Carlson would lie awake in the darkness, listening to the sounds of a friend dying of AIDS.

McMullen’s hoarse coughs from the next room were not yet alarming. His breathing was steady, even though he was skeletal, his sight was failing and his mind was fogged by dementia. But when groans were followed by the creaking of bedsprings, Carlson would bolt from his bed to make sure that McMullen, in his weakened state, did not collapse as he tottered to the bathroom.

Days were nearly as difficult as nights. Carlson’s interior design business suffered. Meetings were canceled and invoices stacked up while he bathed and fed his 40-year-old former lover and disinfected the house. When Clay’s deterioration proved unmanageable even for a full-time attendant, Carlson phoned his friend’s mother in Texas. His family reluctantly agreed to put him in a nursing home.

No Place for Him

After four days on the telephone in early January, Carlson could not find a home anywhere in Los Angeles willing to take in his friend. He resigned himself to a grim deathwatch for McMullen in a hospital ward. Then, a call led to a group of Catholic laymen in Long Beach who run Beyond Rejection, a makeshift hospice for AIDS patients. There, victims of the epidemic can spend their final months in the facility’s home-like setting, given 24-hour care by a group of volunteers.

In February, Carlson drove to Long Beach to tour the home. “I was afraid the place would have the smell of death,” he said later. Instead, he found two comfortable old clapboard houses furnished with stuffed animals, jars of candies, religious icons and hospital beds. He moved Clay in a week later.

2 Provide 16 Beds

Assisted by hospice workers from a nearby hospital, Beyond Rejection is one of only two hospice facilities (the other also is in Long Beach) catering solely to AIDS patients in Los Angeles County. The two homes together provide only 16 beds, barely an alternative in an area that ranks third in AIDS cases among the nation’s metropolitan regions and in which, as of March, 1,725 have died and another 1,085 still live with the disease.

The nation’s health system for the most part offers only two choices for people in terminal stages of AIDS: the home or the hospital. As long as finances and emotions are under control, families and friends, often aided by visiting nurses or hospice workers, can provide care for AIDS patients in their homes. But the loss of a job and health insurance, abandonment by relatives or lovers or the daily strain of tending to an AIDS patient can quickly make a home- care situation intolerable.

In the end, many disease victims wait out their last days in expensive hospital beds. Such is the case in Los Angeles County, where more than 70% of AIDS deaths occur in hospitals.

Over the last year, however, a small number of experimental AIDS hospices like the one in Long Beach have surfaced around the country, offering terminal patients a comforting and more cost-effective alternative to dying in hospitals.

In San Francisco, a 15-bed hospice catering to AIDS and cancer victims opened this month in a former convent. About 50 terminal AIDS patients in New York City are being cared for in hospice-like settings, including a residence founded by Mother Teresa. Similar projects have opened in New Orleans, Miami and Washington. And in Los Angeles, Archbishop Roger Mahony is expected to announce plans soon for a long-awaited Catholic Church care facility for homeless and dying AIDS patients.

‘Compassionate Care’

These pilot projects have sparked interest among a growing number of health professionals, gay activists, religious leaders and government officials. In March, U.S. Surgeon General C. Everett Koop toured San Francisco’s newly opened Coming Home Hospice, praising it as “precisely the kind of facility we are going to need in order to provide compassionate care to the enormous numbers of people who will be coming down with AIDS in the years to come.”

Support has not brought instant progress. An obstacle course of federal and state licensing regulations, uncertainty about who will pay for new forms of care and public fear of AIDS facilities have delayed many projects. In San Francisco, 21 months of delaying passed before its hospice opened. And 14 months after Mahony first said he wanted to build an AIDS hospice, a task force appointed to study the issue still is sifting through options.

“We’re not moving fast enough,” said Michael Weinstein, leader of the Los Angeles AIDS Hospice Committee, a group of gay activists trying to pressure the county Board of Supervisors to open its own hospice. “If predictions of the numbers of AIDS cases four years from now are correct (270,000 cases nationwide expected by 1991, according to the U.S. Public Health Service), the hospitals will be overrun. There have to be more alternatives, and soon.”

(Responding to Weinstein’s group, the Los Angeles County Board of Supervisors Tuesday voted to support the “concept” of hospice care for dying AIDS patients, although they offered no county funding for hospice care.)

Jim Johnson had similar thoughts last year as he searched for a house for terminal AIDS patients. It was Johnson who arranged to take Carlson’s friend McMullen into the Beyond Rejection home in February. Johnson, 38, a devout Catholic, is the home’s director.

Counseling AIDS Patients

A former real estate broker, Johnson was counseling AIDS patients in the spring of 1986. He wanted to do more. When he heard about Mahony’s plans to open a hospice, Johnson applied as an attendant. He waited for the archdiocese’s next step, but no further word came. Through friends in the church, Johnson heard that the effort was delayed.

Frustrated, he decided to develop his own AIDS home. He traveled to San Francisco and New York to observe efforts there, and then returned to join forces with Ralph Cano, a layman associated with the Franciscan order who also was interested in hospice care. They pooled $5,600 in seed money and rented a two-story house in central Long Beach, in a poor neighborhood of wood-frame houses near the Long Beach Freeway.

The first AIDS patient moved in July 18, into a home furnished with beds, Cano’s desk and Johnson’s antique sewing table. The first meals were hamburgers from McDonald’s. Fund raising was difficult in the early months. Johnson ended up selling more than $10,000 of his mother’s antiques to keep the home financially afloat.

Beyond Rejection survived those shaky early months, even enduring a split between Johnson and Cano over finances and philosophy. Johnson became sole director of Beyond Rejection, while Cano opened his own hospice-style facility in another section of the city.

Johnson has rented a second house, and with Beyond Rejection’s finances now secured by regular private donations, a hotel for ambulatory AIDS patients is about to open. A total of 24 AIDS patients have lived in the home. So far, five have died there.

Exempt From Licensing

Johnson has kept no more than six patients in each house, confident that smaller facilities would be exempt from state licensing. Although attorneys familiar with state regulations say that any care facility--no matter what its size--requires state approval, Beyond Rejection has managed so far to avoid licensing difficulties.

Beyond Rejection--and similar makeshift AIDS hospices in New Orleans, Washington and other cities--has endured mainly because of the unique service it provides. Local health authorities who are aware of its continuing evasion of licensing requirements point out that Beyond Rejection fills a need that no other health programs have met.

“Certainly, we’ve worried about the issue of (licensing) and how they’re walking that fine line,” said Ray Kincaid, director of the Long Beach Health Department’s AIDS programs. “But we’re not about to pull the pegs out from under them. Not as long as we need them so desperately.”

Larger hospice projects, backed by well-funded organizations, are less able to slip through regulatory cracks. Archbishop Mahony’s hospice proposal was confronted by obstacles within weeks of his statement, on Feb. 2, 1986, that the facility would help poor AIDS victims, “particularly those needing shelter and unable to work.”

Nearing a Decision

Now, 14 months later, Catholic Church officials say they are near a decision on the kind of shelter they will open. Those familiar with the church’s efforts expect that it will be an adult care facility for terminal AIDS patients, staffed by attendants and other workers. Still, there are more details to work out, more options to consider.

“We want to be absolutely certain that whatever opens up stands the test of time,” said Michael Maloney, an attorney assisting the church in developing the facility.

Licensing is the most difficult hurdle. In California, there is no state certification of hospices. The hospice movement--which has until recently been aimed at terminal cancer patients--took root here in the mid-1970s, but state legislators remain unconvinced that hospices need specific regulations. As a result, California’s existing hospice programs must be linked to hospitals or home health groups, in which visiting attendants provide care in patients’ homes.

In San Francisco, scores of dying AIDS patients have been helped in their final months by just such a home-hospice program. Jeannie Martin, director of the city-funded Hospice of San Francisco, estimates that the program has saved millions of health-care dollars, with costs cut to as low as $94 a day--compared to daily hospital rates of $800 and up.

Many Not Reached

But as the home-hospice program became ingrained in San Francisco’s medical system, Martin and other health authorities discovered that sizable numbers of AIDS victims--at least 30% of the city’s terminal patients--were not being reached in their homes.

“At least 10% of our referrals are abandoned by their families or lovers, so they have no one at home left to care for them,” Martin said. “Another 10% were homeless, usually because of the financial costs of AIDS. And at least 10% more had a home situation that was no longer appropriate, with someone under too much strain to go on.”

Those figures are echoed by health care officials in other cities. A 1985 New York state study found that on any given day, as many as 650 AIDS patients in Manhattan and its surrounding boroughs were homeless or living in squalid quarters. Similar studies have yet to be made in Los Angeles, but the AIDS Hospice Committee estimates that as many as 200 AIDS patients in Los Angeles are homeless.

“Home care is fine as long as you have a home to put it in,” said Bob Cecchi, an ombudsman for the Gay Men’s Health Crisis group in New York. Cecchi and gay activists in other cities say that hospitals often become homes of last resort for indigent AIDS patients who have nowhere else to go.

Strain on Hospitals

Under the federal government’s medical reimbursement system, private and public hospitals are often forced to absorb the extra costs incurred by AIDS patients who take up acute-care beds while only requiring custodial care. “We’re seeing intense strain on acute-care hospitals,” said Dr. David Tilman, assistant administrator at St. Mary’s Medical Center in Long Beach. “They can’t afford to keep subsidizing these patients.”

Physicians who work with AIDS victims have differed over when and where hospice care becomes appropriate for those in terminal stages. But there appears to be growing agreement that aggressive treatment has its limits, especially with no AIDS cure in sight.

“The truth is that many AIDS patients aren’t getting any better care in hospitals than they could get in a good hospice or attendant-care home,” said Dr. David Cundiff, a cancer and pain specialist at Los Angeles’ County-USC Medical Center.

Most nursing homes--and even many existing hospices--have been unwilling to accept terminal AIDS patients. Their medical reimbursements are also uncertain, and there are added costs in training their staffs to contend with the unique needs of AIDS victims. “It’s a full-scale commitment that many programs are afraid to make,” said Lucille Brown, director of the Ritter-Scheuer Hospice at New York’s Beth Abraham Hospital, one of the few care facilities that takes in AIDS victims.

Licensing Problems

Reacting to these concerns, San Francisco’s health community moved in mid-1985 to create a hospice facility. That project, the Coming Home Hospice, ran straight into many of the same licensing difficulties that now confront Los Angeles’ Catholic Archdiocese.

Because California has no hospice licensing regulations, the Coming Home project applied for certification as a board and care facility. But when it opened last month, after almost two years of procedural roadblocks, it still had not won its license, remaining open only because it secured a temporary license as a single-room-occupancy hotel.

In Los Angeles, church officials decided early on that all licensing hurdles had to be cleared before their own hospice facility opened. “We were concerned about starting it up, only to have someone from the state or the city close it down,” said Rev. David Cousineau, director of Catholic Charities and head of the hospice effort.

The location of the archdiocese’s hospice facility also poses serious questions. “Before we determine a site, we have to be certain that the surrounding neighborhood can live with it and that it satisfies all local zoning laws,” Cousineau said.

New York Catholic leaders learned that lesson in 1985, when residents of a Manhattan neighborhood reacted with fury upon finding out that the archdiocese there planned to open an AIDS hospice in an old limestone convent on West 96th Street.

Fears for Children

Parents whose children attended the parish parochial school set up picket lines in front of the church. “We weren’t happy about it at all,” recalled Erenia Moret, whose granddaughter goes to the school. “We worried about the children picking up something in the bathroom or the schoolyard.”

(In fact, AIDS cannot be spread by casual contact.)

Retreating, the archdiocese selected a less controversial site in an abandoned Greenwich Village rectory. There, on Christmas Day, 1985, Mother Teresa’s Missionaries of Charity--famous for their work with the poor in India--opened the Gift of Love, a 14-bed residence that was the nation’s first attempt at an AIDS hospice.

Identified in its early days as a hospice, the facility was, in fact, something less. According to Sister Sabita, the sari-draped director of Gift of Love, Mother Teresa had wanted to take in poor AIDS patients and “let them die in dignity and in peace.”

But the nuns’ Spartan regimen, honed by years of ascetic life in India, alienated many of the Gift of Love’s first residents. Patients found that their curfew was 5 p.m., only two visiting hours were allowed and television was forbidden. Some patients complained of subtle attempts at religious conversion.

Applications to the facility dwindled until the nuns loosened some rules. But by then it had become apparent that the Gift of Love was more of a residence than a hospice. Ambulatory AIDS patients, rather than terminal disease victims, occupied most beds.

Yet, because the course of AIDS is so capricious, several ambulatory patients deteriorated to terminal stages. By this spring, seven had died in the Gift of Love’s upper dormitory. In its own fashion, the residence was providing a semblance of hospice care.

“In their final hours we check their breathing, take them water, talk to them,” Sister Sabita said. “We have been told that hearing is the last sense to go, so we tell the men that God loves them. It helps them to die in as dignified a manner as possible.”

At Beyond Rejection in Long Beach, Clay McMullen has settled into his hospital bed. He is there all day, covered with blankets, clutching a stuffed bear as he sleeps or vacantly watches hours of daytime television.

Periods of lucidity come, usually when his friend Glenn Carlson visits. When he is aware of his plight, Clay sometimes reacts with rage, as on a recent night when he tore furiously at the diaper he is forced to wear. But most of the time, his mind drifts, confused by the passage of days, seasons, time.

Adapting to Change

Jim Johnson and the other volunteers have learned how to adapt to these changes in condition and mood that seem to occur by the hour. “Each one of them has their own special needs,” Johnson said. “It’s our job to know the cues.”

When the needs prove too much for Beyond Rejection’s staff, they can call on a network of supporters. Local churches stock food for the home’s meals. Gay activists search for new sources of income for the residents. Glenn Carlson and a group of designer friends are planning to refurbish both houses.

Even without the designers’ help, the two houses have been outfitted to cope with AIDS. Pantries and closets are stocked with fruit, canned food and snacks to keep the residents’ weight up. Bedrooms have adjustable hospital beds. And in almost every corner of the house, Johnson and his staffers have strategically placed bottles of disinfectant.

Ten men now live in the two houses, paying $250 a month out of their Social Security or disability checks as rent. Otherwise, their care is free.

When a patient reaches his final days, hospice workers from nearby St. Mary’s Medical Center link up with the home’s volunteers. In those moments, the volunteers and hospital workers work as a team, taking turns by the patient’s bedside until there is no more to be done.

With time and the examples set by the workers from St. Mary’s, Johnson and his staff have learned to do their own hospice work. One recent morning, Johnson and Robert Rangel, another volunteer, took turns at the bedside of Ricardo, an 89-pound patient who had been slowly deteriorating for more than five months and then slipped into a coma.

‘It Happens . . . So Quickly’

Expecting death at any moment, Johnson called Ricardo’s sister and his ex-lover to the house. When they arrived, Johnson took them to Ricardo’s bedroom. They listened to his breaths become deeper and watched his head thrash softly--signs that the coma was deepening. Johnson left the house briefly to go to St. Mary’s--just two blocks away--to fetch Ricardo’s medical file. When he returned, Rangel met him at the top of the stairs to tell him that Ricardo had died.

“It happens like that--so quickly,” Johnson said hours later.

Beyond Rejection’s residents rarely discuss a death in the house in the days after it occurs. “It’s hard for them,” Rangel said. “They all know it’s going to happen to them, so they never talk about it. But you can see the fear in their eyes.”

Carlson, too, tries not to discuss the subject when he checks up on McMullen during weekly visits. He brings pleasant tidings from old friends, news about the design business and cheerful insults about McMullen’s shaggy appearance.

With McMullen in good hands, Carlson has been free to tend to both his and his friend’s affairs. He has even had time to make preparations for a memorial party he hopes to hold for McMullen in his back yard. “He preferred cremation, but I think his friends would want a final gathering,” Carlson said. “I haven’t told him about it. I don’t want him to feel he’ll miss a good party.”