The Chicago Tribune - Sunday, February 21, 1999
Cindy Richards, Tribune Staff Writer

When Rodriguez, who also is HIV-positive, reaches that same point, she will not have that option.

"When I heard it was closing, I had an ache in the pit of my stomach," a relatively healthy Rodriguez said last week. "What's going to be there for me?"

Chicago House, the AIDS service organization that operates the homey 24-hour care facility on the Far North Side where David Rodriguez went to die, will close its hospice operation at the end of March. The need, officials say, simply is no longer there.

AIDS activists hail the closing of what they believe is the country's last hospice set up to deal solely with dying AIDS patients. They see it as a recognition of the new realities of AIDS: Powerful drug combinations mean AIDS patients need to prepare for longer lives rather than imminent deaths.

They are praising Chicago House officials for recognizing the new reality and making the difficult decision to close the hospice and use the money to meet the new needs of the HIV population.

Hospice providers, however, fear the move is premature. At the very least, they say, it may prove to be an overly optimistic reaction to drug therapies that have yet to reveal their long-term potential.

Like Rodriguez, providers wonder: Where will AIDS patients go to die if those drug therapies suddenly fail? While the current number of deaths can be absorbed by other hospice providers, the concern is the system could face another overwhelming wave of deaths.

The decision to shut down the hospice was made only reluctantly at Chicago House, said program director Kathy Doherty. The agency spent 18 months reviewing its services and assessing the needs of people afflicted with HIV.

Officials came away convinced that helping AIDS patients die was no longer the best use of limited resources.

The board voted this month to close the hospice, which operates at a cost of $250 per patient per day--money that could provide housing and social services to three times as many AIDS patients who do not require such intensive care.

The closing comes three years after the agency expanded its Edgewater hospice to serve nine patients, up from seven. In the hope of keeping the operation viable, Chicago House changed the rules a year ago and began accepting patients who were not terminal but who needed a place to recover from a bout of AIDS-related illness.

Even with the short-term patients, the converted single-family home has operated well below capacity for more than a year. There are only two patients there now, one hospice patient and Charles Borin, 76, who was diagnosed with HIV seven years ago.

He may be living in a hospice, but Borin said he "has a couple of years to go yet and I intend to go them."

Borin, who takes 17 pills a day to ward off the onset of AIDS, is taking a philosophical approach to the pending closing.

"Everything happens for a reason," said the long-time hairstylest.

In this case, the reason is the advent of the drug therapy called protease inhibitors. No longer is an HIV diagnosis akin to a death sentence.

Deaths from AIDS in Chicago hit an all-time high of 968 in 1995 before beginning to decline. There were 783 deaths in 1996 and 377 in 1997. Nationally, the peak also was in 1995, with more than 43,000 deaths. By 1997, AIDS claimed 16,685 people nationwide.

Although the statistics are encouraging, people continue to die of AIDS. With AIDS hospice facilities across the country closing or reinventing themselves, AIDS patients in the future will have only two choices: dying in their own homes or in the institutional setting of a nursing home.

That has hospice providers concerned.

"I think we have to acknowledge that people will die from this disease," said Pat Gibbons, nurse-manager of Beacon Place, a hospice in Greensboro, N.C., that is geared toward AIDS patients but serves people dying from other causes as well.

"We cannot keep empty facilities open and waiting for the other shoe to fall, but we should be thinking and strategizing to make sure there are available options should people need them or choose them," she said.

Dr. Robert Murphy, head of AIDS treatment at Northwestern Memorial Hospital and a member of the Chicago House board who supported the decision to close the hospice, believes there are enough options, now that the death rate is falling and the disease is better understood.

"Back in the early '80s, we overwhelmed the system. We're not overwhelming the system anymore," he said.

A decade ago, when AIDS patients often were seen as outcasts, the Chicago House hospice operated with a waiting list. Over the six years Chicago House has operated out of the comfortable white stucco house, 356 patients have died there.

Again, mirroring national trends in the disease, the first clients were gay men. In the final year, one in four AIDS patients was a woman and a growing percentage of the patients contracted the disease through intravenous drug use.

In the early years, most of the Chicago House clients arrived intending to spend their last six months in the hospice, getting the counseling, support and services a hospice is set up to deliver to dying patients. In the wake of protease inhibitors, patients are unwilling to give up and admit they are going to die, waiting until their final week or two to check in to the hospice.

"Before, they had time to think about dying, they got medication for the pain, they could set everything in motion," Doherty said. "It's hard to see somebody comatose and they die. It misses the entire point of the service."

In effect, it is an indication that AIDS has gone mainstream as a fatal disease in America, said Dr. Michael Preodor, president of Horizon Hospice, the organization that provided the hospice services for Chicago House.

"Our medical culture as well as our general culture support a cure-all, treat-through-most-anything philosophy. Even in a patient with lung cancer who has very little chance of meaningful recovery, they will choose therapies that may not be proven effective rather than accept it and go to a hospice," Preodor said.

Murphy agreed.

"This is not unique to HIV," he said. "The hospice program in the United States is very underutilized because people don't want to accept their fate. They're uncomfortable with it. A lot of it is the doctors are uncomfortable with it."

Chicago House board members will meet March 22 to determine what to do with the stately Edgewater house. Doherty said they want to find a way to meet the new needs of HIV-positive people, many of whom exhausted their resources preparing to die and now must figure out how to live. Their needs include low-cost housing, drug treatment and job training, she said.

The agency is considering three options to serve HIV patients: a communal living facility that would include social services and some nursing care; a drug-treatment facility for HIV-infected users; or as an old-fashioned low-cost boarding house.
990221
CT990202

Always watch for outdated information. This article first appeared in 1999. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 1999. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .