Alternative for AIDS Patients : Nursing Home Gives Care That Hospitals Can’t
David Anderson was too sick to go home.
He needed intravenous feedings and morphine around the clock. He had to be turned over every 2 hours. And toward the end, as he battled the severe pneumonia that often comes with acquired immune deficiency syndrome, the only way he could breathe was with an oxygen mask over his face.
But the 39-year-old real estate broker did not die in the antiseptic environment of a hospital.
Instead, he spent his last 3 days in a small Laguna Beach nursing home that emphasizes homelike care for the terminally ill.
Anderson’s simply furnished room had its own private patio. His mother, who flew in from Oregon, was able to stay in guest quarters one floor above his sickbed. And Ruby Anderson praised the “very caring, very gentle” way aides and nurses in the 47-bed facility handled her son.
“They would always say to David, ‘And how are you today, my dear?’ . . . I really felt they were equipped to give him more personal care than a hospital would have.”
Anderson died Dec. 2 at Ahimsa Care Center, the first nursing home in Southern California and one of only a handful in the state to admit AIDS patients. He was the facility’s first AIDS patient and the first to die there.
Most of Ahimsa’s clients are typical nursing home patients--white-haired men and women whose average age is 80. But Ahimsa administrators have also reserved an 18-bed wing for those with terminal illnesses, including AIDS.
Until late November, when Ahimsa’s program for AIDS patients began, Orange County residents with the disease could be cared for at home or they could try to find space in one of Los Angeles County’s seven residential hospices. Or, said Orange County AIDS coordinator Penny Weismuller, they could remain “inappropriately long” in the hospital where a bed can cost $1,000 a day.
By contrast, Ahimsa charges about $350 a day.
Ahimsa is also one of the few nursing homes in the state to note in a promotional brochure that it welcomes people with AIDS. “New times demand new alternatives,” the brochure proclaims, explaining that the center specializes in caring for those with life-threatening illnesses, “including cancer and AIDS.”
Industry observers called such an announcement striking.
“No one ever advertises it, to be very honest with you,” said Jacqueline A. Lincer, a licensing administrator for the California Department of Health, “because, I think, the public and the (nursing home) staff don’t understand the disease process and the fact that you are not going to get the disease if you’ve been in the building” with an AIDS patient. Nursing home executives maintain that they do not discriminate against AIDS victims. But, they noted, state regulations require them to accept only those patients that they have the ability--for instance, the isolation rooms and trained staff--to handle.
“We haven’t intentionally closed the door on these patients by any means,” said David Helmsin, program director for the California Assn. of Health Facilities, which represents more than 900 California nursing homes. “Our concern is our ability to care for them.”
One other major barrier, Helmsin said, has been the Medi-Cal reimbursement rate--only $52 a day, when care for a seriously ill AIDS patient can easily run several hundred dollars a day.
Last year, Ellipse, a Redwood City nursing home that took only AIDS patients, went bankrupt after most of its beds filled with Medi-Cal patients.
Also, AIDS patients who may need respirators and intravenous drugs are more costly to care for than a nursing home’s traditional clients--elderly patients who usually need only custodial care, noted researcher Anne Scitofsky, chief of health economics for the Palo Alto Medical Foundation. “With the higher costs, you can understand why nursing homes are not going out of their way to admit them,” she said.
The name Ahimsa is a Sanskrit word meaning reverence for life.
Nursing home administrator Sharon Lucas said she chose it because “it represents an attitude we wanted to maintain here--a respect and appreciation for the quality of each day.”
Lucas, a 34-year-old former social worker, said she watched her brother die a painful death from cancer and wanted a facility that would offer psychological support to dying patients as well as medical care. “I think the social worker in me was the motivating force,” she said.
Also from the start, Lucas and two partners who bought the nursing home last June planned to accept AIDS patients.
Seminars for Staff
Still, they waited several months before admitting their first AIDS patient. In the interim, Lucas sent her staff to seminars on AIDS and infection control. Also, as she met with families of her geriatric patients, she told them that the facility had a new emphasis.
Other nursing home administrators have been concerned that if they ever took an AIDS patient, “their staff and patients would leave,” Lucas said. “But that didn’t happen at all.”
Not only did families leave their relatives at Ahimsa, but the facility’s census has increased slightly since June, she said.
Still, some of Ahimsa’s workers were initially nervous about the idea of working with AIDS patients. “When they first told me, I said, ‘Oh boy, I got to get out of here!’ ” recalled nurse’s aide Victor Gonzales.
Registered nurse Crissynda Buss had decided some time earlier that she would like to care for AIDS patients, but she watched other employees recoil at the idea. “They were saying, ‘Will I get it from touching their clothes? Will I get it from touching their food trays?’ ”
But after classes at Ahimsa, the fears dissolved, workers said. Employees were instructed to wear gloves when they handle blood and other bodily fluids. They learned that they should sometimes wear masks if there is a chance that fluid might splatter. But they also learned that AIDS is not transmitted by casual contact.
“I just got to be careful what I am doing,” said Gonzales, who was reassured that “AIDS is not easy to get.”
Around the country only a few nursing homes have accepted AIDS patients. The American Health Care Assn. in Washington, which represents nursing homes, has published a booklet, “AIDS and the Nursing Home,” and offered seminars on caring for these patients. Still, although “many facilities are ready and willing to take AIDS patients, there hasn’t been a tremendous demand,” association spokeswoman Linda DeRuvo-Keegan said.
In 1985, reacting to the plight of an AIDS patient dying in a sleazy motel, a facility in Baltimore, Seton Hill Manor, became the nation’s first nursing home to accept AIDS patients. Initially, it reserved four of its 360 beds for AIDS patients, and last April it opened a special 22-bed AIDS unit.
However, owner Lorraine Raffel said the new ward is rarely full and the move has been a costly one. Seton Hill loses $20 a day on each AIDS patient, Raffel estimated.
“Going into AIDS care, we really made an emotional decision. We didn’t make a business decision,” she said.
AIDS patients require more counseling, more intensive nursing and more costly infection control procedures than Seton Hill’s traditional geriatric patients, Raffel explained.
And though Seton Hill’s AIDS unit is geared to younger clients--its staff dresses informally and the unit offers coffee and popcorn around the clock--"many young people do not want to go to a nursing home,” Raffel said.
Agreed Helmsin: “The typical AIDS patient, a young or middle-aged male, does not look at the nursing home as the vehicle to provide his chronic care.”
64% Die in Hospitals
National and state statistics on where AIDS patients go to die were not available. In Orange County last year, 64% died in hospitals and 25% died at home, according to the Orange County Health Care Agency.
But counselors and advocates for AIDS victims said most prefer to die at home. “Most people want to die with the people they love around them,” said Steve Beck, executive director of the People with AIDS Coalition in Washington.
But AIDS patients often need more care than visiting nurses or helpful friends can provide, AIDS experts said, and until recently the only alternative to home care has been hospitalization.
“We try to maintain patients in their homes, but we can’t deal with a really sick client who needs IVs,” said Binnie Callender, chief of AIDS coordination for San Diego County.
Dr. Charles Robertson, a Newport Beach physician who treats many of Orange County’s AIDS patients, agreed. “Families get overburdened easily, and the patient ends up in a hospital. But a hospital is not always the right environment. . . . So Ahimsa gives families the option of helping as much as they would like--and at the same time having some competent nursing staff to pitch in.”
Some AIDS activists complained that Ahimsa’s usefulness is limited because the nursing home is not certified to take either Medi-Cal or Medicare patients. (About 30% of California’s AIDS patients are on Medi-Cal.)
The facility does take private insurance, and the initial reaction from most insurers has been positive.
“We’ve not been able to evaluate the relative costs, but common sense says it’s less expensive to be taken care of in a nursing home than a hospital,” said Pat Schoenli, a spokesman for the Health Insurance Assn. of America, the national lobbying group for insurance companies.
Dr. Brian Gould, medical director of Blue Cross of Southern California, said he would like to see more “community-based, subacute treatment” facilities for AIDS patients because “the aggregate costs have been proved to have been lower.”
Laguna Beach Mayor Robert F. Gentry, as chairman of a county AIDS advisory committee, inspected the nursing home in December and was impressed. “The setting is more pleasant than a full-on hospital,” Gentry said. “And it’s going to save insurance people a lot of money.”
Since David Anderson died, Ahimsa has had only six AIDS patients, but Lucas emphasizes that social workers at Los Angeles and Orange County hospitals are still learning about the facility.
A 32-year-old Los Angeles man is one of the latest AIDS victims to stay there.
Because his company did not know he had AIDS, the patient, a bank training officer, declined to give his name. He called Ahimsa a much more pleasant place than the Sherman Oaks hospital that transferred him there.
At the hospital, nurses were rude, he said, and they treated him roughly when they turned him in bed. He said he thought they treated him badly because he has AIDS.
By contrast, the staff at Ahimsa “has been very accommodating.” And rather than feeling awkward and out of place, he said, he has found it interesting to be among elderly people.
“It’s sort of like being around my grandmother,” he said.
He said he likes Ahimsa’s informal style and enjoys attending exercise classes with the geriatric patients and sitting on a small porch near his room in the sun.
Also at Ahimsa was a 50-year-old truck driver from Corona. Ill for the past 2 years with pneumocystis pneumonia, which often comes with AIDS, the once-burly 6-footer has “wasting syndrome”; in recent months his weight has dropped to 99 pounds.
His gaunt legs were dotted with the oblong pale marks of Kaposi’s sarcoma, a form of skin cancer common to AIDS patients. And because he was having difficulty eating, a feeding tube ran down his nose.
He lay quietly near a window one day last week as a technician and nurse Buss gently moved him for a chest X-ray, then adjusted his covers.
Decorating a bulletin board beside his bed were paper cutouts of a blue flower and a yellow smiling face--both made, the patient said, by his 6-year-old grandson.
He wasn’t saying much, though, just answering questions with a nod or, when he could manage the effort, a sentence. “At the other hospital, they were fighting all the time, arguing with me because I was confused,” he said. At Ahimsa, he is still confused, he said, but at least “they’re real nice over here.”