Hospices still seek clarity on their role in complex relationship with HIV care
AIDS census falls, but patients’ needs have not gone away
At a time when AIDS hospice caseloads nationwide are down, the new 15-bed Maitri residential AIDS facility, providing hospice and chronic care, has just opened in San Francisco. Meanwhile, other hospices and AIDS service providers in San Francisco, once the epidemic’s epicenter, are exploring creative approaches to survival and adjusting to an environment in which seemingly successful antiviral therapies are the biggest news.
Elsewhere, the increase in AIDS caseloads has flattened for hospices (for an illustration of this trend, see chart on p. 20), but experts warn that the epidemic is far from over. Despite recent dramatic advances in antiviral HIV treatments such as protease inhibitors, these therapies will fail for an unknown number of patients. More patients won’t even take them, for reasons including lack of access to expert medical care, lack of financial resources or insurance coverage, and inability to adhere to complex medical regimes.
The demand for hospice and end-of-life palliative care for those not helped by the antivirals will be greatest in the most marginalized patient populations, which historically have not been as well-served by the hospice industry. The latest twist in hospice’s long and complex relationship with HIV care may be its need to develop creative new outreach efforts, financing approaches, and collaborations, while addressing the administrative and ethical dilemmas that will accompany outreach to the populations in greatest need. (See accompanying story on p. 19.)
How to fill 15 HIV beds in San Francisco
Maitri started in 1987 as an AIDS residence located in the Hartford Street Zen Center, a Buddhist temple in San Francisco’s Castro District. Last December, Maitri began gradually bringing patients into its new, larger, 15-bed residence, housed in the former offices of the San Francisco VNA. The organization called Maitri has amicably separated from the Hartford Street temple, but it tries to retain some of its spiritual roots, says executive director Bill Musick. The office space has been decorated with Japanese and Buddhist art motifs.
Most of Maitri’s professional and paraprofessional staff for residents’ patient care needs will be provided by Visiting Nurses and Hospice (VNH) in San Francisco, including a nurse and social worker assigned full-time to the residence, Musick says. Maitri also employs its own program developers for intake, assessment decisions, and continuity of care.
Criteria for admission include disabling HIV, need for skilled nursing care (in most cases), residence in San Francisco, and low-income status. Some, but not all, of the residents will fit conventional hospice definitions. The facility also serves patients with dementia who can no longer stay at home, and chronically ill patients who are no longer eligible for higher-level medical facilities in town. "Dementia will be a major focus for us because it’s not recognized as a skilled need by itself," Musick notes. As a result, patients with dementia can fall through the cracks of other services, he relates.
Spiritual needs emphasized
"Maitri is first and foremost a home, not a medical facility. Our volunteers are a little more free in what they can do," with fewer definitive assignments than for a typical inpatient hospice volunteer, Musick says. "We also place a higher emphasis on spiritual care, including a whole group of spiritual volunteers, representing a rich multi-faith tradition, to meet any resident’s spiritual care needs." There may even be regularly scheduled visits from practitioners reflecting varied spiritual traditions, to offer the chance to participate in ongoing spiritual practices ranging from Tibetan Buddhism to Episcopal prayer chants.
"The other piece is more ephemeral: How do you manage a home with 15 residents? How do you create an environment that promotes healing? In addition to VNH’s professional services, there will be a Maitri presence for significant parts of every day." In some ways, Musick says, the relationship resembles a hospice-nursing home contract more than the usual residential approach where a community-based hospice is responsible for all of the health-related needs of the residents.
"We’ve been able to set up varied funding streams," which will allow the facility to fill its beds with AIDS patients who otherwise would fall through the cracks of the health care system, Musick says. Funding for VNH’s staff comes from Ryan White CARE Act funds for LVN and attendant care, Medicare hospice and intermittent home health coverage for nursing and other visits, and philanthropic support. For Maitri, most of the $3 million in renovation costs came from the federal program Housing Opportunities for People with AIDS (HOPWA).
Coping with financial challenges
Operating costs will come out of ongoing HOPWA grants, donations, rent from a pharmacy that will soon occupy the building’s lower floor, and a small amount of sliding scale-based self-pay income. Annual operating expenses could run as high as $700,000, Musick adds. "I think we can do it but it won’t be easy. Our challenge is take a good look at our costs and see if they can be reduced, but also to make the case that what we can do here is better than standard nursing home care," in terms of the quality of life of HIV patients nearing the end of life.
How will the residence overcome the trend of shrinking AIDS caseloads and keep its beds full? "Our varied funding streams give us more flexibility. If we were limited strictly to hospice care under the Medicare/Medicaid benefit, we wouldn’t have a hope of surviving," Musick replies. But San Francisco continues to have a large enough HIV population to justify a specialized AIDS facility.
"My hope is that we can develop affiliations with experts in the field of HIV. I also hope we can create a loose alliance of other organizations doing similar things," he adds. "What we’re really saying is that as the focus shifts from terminal to chronic illness, what we’ve learned from HIV and AIDS should be helpful in dealing with other chronic illnesses, as well. But that will require stepping outside of the boxes" of conventional thinking and conventional reimbursement categories. "We’re all trying to develop a seamless set of services for people with HIV, which bucks up against current reimbursement restrictions. We need to keep trying to find ways to bridge services and unique ways of partnering and responding to the needs of local populations."
Another creative response to changing HIV needs is the Oct. 1 affiliation between nonprofits Hospice by the Bay and Kairos, a counseling and supportive care program for caregivers of people with AIDS started in San Francisco in 1988 by Father John McGrann, a Catholic priest. Like other AIDS service organizations, Kairos has seen the demand for its support groups and counseling services wane, while philanthropy for AIDS services has started to dry up as funding sources have shifted to other priorities, such as prevention. To make matters worse, the public seems to have concluded that the AIDS crisis is over.
"All AIDS organizations have a responsibility to plan in light of this change, and we feel really good that Kairos has been proactive in positioning itself for the future," explains executive director Carol Kleinmaier. "We’ve also seen a parallel drop in our census of caregivers because these days people don’t want to come to workshops for anticipatory grief or preparation for death. They want so badly to believe that isn’t going to happen to them," she says. "I’d like to think Kairos is a little ahead of the game. We’ve learned so much through the AIDS epidemic about taking care of caregivers."
Kairos has now become a subsidiary of Hospice by the Bay, while retaining its name and tax status. Its mission has expanded to include family and professional caregivers of people with any life-threatening or chronic illness not just HIV as well as patients themselves. Kairos’ Center for Caregivers is a converted three-story home with offices and rooms for support groups, individual counseling, massage therapy, staff retreats, and meetings for other nonprofit groups.
Hospice by the Bay contributes its grief counseling expertise to this affiliation, and may provide a source of new client referrals for Kairos, while taking advantage of the home-like setting of Kairos’ care center as a refuge for caregivers, says hospice executive director Constance L. Borden, RN, MSN, ANP.
The hospice has also pursued new HIV outreach in other ways. It sponsors free "moving meditation classes" for people living with AIDS and their caregivers, offers a protease inhibitor support group, and participates with several AIDS organizations in a collaborative program called the Tenderloin Care Project. Nursing staff from the hospice provide street-based outreach, health evaluations, HIV testing, condoms and bleach, information and referrals, practical support, and vouchers for other services. This program targets the homeless and indigent, people recently released from prison, sex workers, drug users, and single-room-occupancy hotel dwellers in San Francisco’s inner-city Tenderloin neighborhood.
The hospice’s current census is down to 50, from a one-time high of 72, reflecting both a reduction in HIV cases and shorter stays, Borden says. Given the reduction in AIDS caseloads, "We need to ask: What are the needs of the community? We realized we were not serving them in hospice, but they still have needs, and we can still stay connected to the HIV community. Hospice is moving on to the question of what it is like to be a caregiver for the person with chronic disease. Kairos is looking at the question of what a grass-roots AIDS organization should do. Grass-roots AIDS organizations have so much to offer," Borden says.
"It’s going to be radically different in years to come," Kleinmaier adds. "How we handle the changes is a test for all of us; change is always hard."
[Editor’s note: For information on Maitri, contact Bill Musick at 401 Duboce, San Francisco, CA 94114. Telephone: (415) 863-8508. For information on the affiliation of Hospice by the Bay and Kairos, contact Constance Borden at 1540 Market St., #350, San Francisco, CA 94108. Telephone: (415) 626-5900. Fax: (415) 626-7800.]
You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
- Award-winning Medical Content
- Latest Advances & Development in Medicine
- Unbiased Content