San Francisco knows all too well the toll of acquired immune deficiency syndrome. The city has had more than 3,800 total cases and 2,100 deaths, the highest per capita incidence of the disease in the country.
Yet more than five years of battling the epidemic here has also brought the city a corollary distinction: a reputation for having developed one of the most humane systems of caring for AIDS patients in the nation. It is a system that depends on a cadre of volunteers and doctors, a commitment by the city to spend tax dollars on AIDS care, and an unusual network of low-cost alternatives to hospital treatment.
The Visiting Nurses and the Hospice of San Francisco have been on the front lines of the AIDS battle here since the beginning, applying principles first popularized in England in the 1960s and '70s to the care of hundreds of dying AIDS patients.
Hospice is more than a place for patients. It is a philosophy of care that emphasizes palliative and support services for terminally ill patients -- but without extraordinary measures, such as artificial respirators, to prolong life.
Through physical therapy, intensive emotional support and sophisticated "pain management" techniques such as the use of morphine, hospice care aims to make the last days of life as fulfilling as possible, often in the comfort of one's own home. "People are allowed to die," said Norma Satten, a representative of the San Francisco hospice group. "There are no heroic measures."
As San Francisco officials have found, hospice care is a form of treatment that makes extra sense for AIDS. Not only is it less expensive than hospital care -- a day of hospice care can go for roughly $150, compared to more than $800 for a day in San Francisco General Hospital -- it is often more compassionate.
"Early in the epidemic, patients tended to die in the intensive care unit on respirators. Doctors pulled out all the stops -- and people died pretty inhumane deaths," said Dr. Jerome Schofferman, a doctor who works with the hospice group. Now, he added, AIDS patients "feel they may as well die in their own beds with friends around. We can basically do that. We can do just about everything that happens in the hospital, except for the high-tech stuff."
While most of the hospice group's patients can be treated in their own homes, a residential facility known as Coming Home Hospice was recently opened to take care of AIDS patients who have lost their homes or have no place else to go. After a fund drive that netted more than $700,000, the group leased a former Catholic convent in the city's Castro area and transformed it into a homelike residence that can house 15 AIDS and other terminally ill patients.
Each private room comes with a bed, television, sink and closet. The convent's former chapel is now a living room, replete with piano and videocassette player. There is also a kitchen, dining room and meditation room. The house is regularly staffed by a registered nurse, social workers and other attendants. The group even provides bereavement services for the families of dying AIDS patients.
Since the home opened in March, more than 80 patients have come to live here, and 69 have died. Residents spend on average four weeks in Coming Home Hospice. Says Satten, "We try to make the last days of someone's life as comfortable as we can. We try to make it about living, not dying."