AIDS Brings Urgency to Need for Hospice
Doctors have met their match in AIDS.
When patients with the disease first appeared, we were aggressive in providing them with treatment, using all possible high-tech interventions of modern medicine. AIDS patients with fevers were hospitalized and extensively evaluated; those with severe pneumonias were placed on respirators. Patients who developed Kaposi’s sarcoma, that telltale purplish skin cancer, received chemotherapy. We tried to reverse their weight loss with complicated and expensive methods of intravenous nutrition.
But the patients died. The “thin disease,” as it is called in Africa, prevailed.
This consistent failure has led to a pullback in the intensity of care directed toward AIDS patients. Today, physicians seldom place AIDS patients with pneumonia on respirators, fevers are evaluated in the office, hyper-alimentation is avoided, and chemotherapy for Kaposi’s sarcoma is given only when absolutely necessary.
Indeed, we have reached a situation in which physicians often don’t want to treat AIDS cases. I heard a dean at a large New York medical school complain that most top students in his recent graduating class no longer wanted to take training in internal medicine because they would be confronted with patients suffering from AIDS. The problem is not confined to new graduates, however. Physicians in my community have also expressed a reluctance to treat AIDS patients. These physicians are not insensitive to the needs of the patients. But they are overwhelmed by the enormous burden of the patients’ many problems, both physical and social.
The patients themselves have also become disillusioned by aggressive medical interventions. Their friends, who received such treatment, still died. Furthermore, they saw that the price of this therapy--the prolonged hospitalizations, the frequent bloodlettings, the nausea and the hair loss of chemotherapy--was not worth it.
Thus a new institution, the hospice, has emerged for the care of AIDS patients. The concept of the hospice arose in England, where certain hospitals would designate a section of the building as a place to house terminally ill patients--usually those with cancer. Gradually a philosophy of care emerged, with the palliation of symptoms and the provision of comfort becoming the primary goals of the hospice program. All that mattered was the quality of life, not its length.
In the United States, the hospice concept was translated into a home-care program in which visiting nurses help patients deal with the symptoms of their diseases. In addition, the hospice program provides social workers, clergy and lay volunteers to help the patient and his or her family cope with the process of dying. Here, too, the emphasis has been on patients with cancer, since they can be clearly identified as terminal and often need treatment to relieve their pain as well as other symptoms of their disease.
Now, the hospice is beginning to care for AIDS patients as well. About one-third of the patients in the hospice program of St. Mary’s Hospital in Long Beach have AIDS. Many other hospice programs in Southern California have a similar proportion of AIDS patients.
Although we in the hospice programs are willing to care for these patients, it is a hard job. One problem is financial. Many of these patients--most of them young, gay men--have lost their jobs and can’t afford housing. Consequently, so-called AIDS homes have sprung up in Long Beach. These converted rooming houses have become a kind of unregulated hospice, where our hospice team makes rounds to oversee the care of our patients living there. I think that the only reason these AIDS homes are permitted to exist is that the city has found no adequate substitute to house its dying AIDS patients, whom nursing homes do not accept.
New York has begun to address this problem, and today about 50 beds are available for the care of terminal AIDS patients. This in no way will meet New York City’s expected need, however. Experts have estimated that in 1991 between 2,000 and 7,500 AIDS patients will be hospitalized daily there. Although the number for the Los Angeles area will be lower, we need to begin to plan now what we will do when the full brunt of this epidemic strikes.
New York has also designated a local hospital to devote itself exclusively to caring for AIDS patients. Such a move is inappropriate. Hospitals are necessary to treat acute problems of AIDS patients, but are an expensive and socially inadequate way to care for these patients on a long-term basis.
We need a better approach in the Los Angeles area. Our local governments will need to develop free-standing hospices for the care of these patients or face the enormous expense of hospitalizing them. Allowing more unregulated rooming houses to usurp what should be a governmental function is not the answer.
Funds should be provided for supervisory home-hospice agencies and for care-givers to attend AIDS patients who can be kept at home. All this must start now. The alternative might be chaos reminiscent of the great plagues of the Middle Ages.
