More signs that hospices must clarify role in HIV
Mission Hill closes as protease inhibitors’ impact felt
The January closure of Hospice at Mission Hill, Boston’s model inpatient facility for people dying of AIDS, offers more evidence that hospice’s role in HIV care needs to be reevaluated.
New AIDS treatments such as protease inhibitors and combination antiviral therapies are producing dramatic results in stopping the growth of an infection once thought to be a death sentence. As a result, some hospices are seeing reduced demand for AIDS care, affecting them both financially and philosophically.
Agencies with inpatient or residential hospice beds set aside for patients with aids (PWAs), in particular, may need to find alternate uses for those beds. But after a decade of preaching flexibility in how hospice admission policies and care philosophies were applied to AIDS patients, some hospice leaders now suggest that the new treatment and diagnostic advances may make it possible to more clearly delineate when hospice care is appropriate, and for whom.
Hospice at Mission Hill, opened in 1989 with 18 beds and the final home for more than 1,200 dying AIDS patients, had closed half of its beds two years ago. In recent months, occupancy dropped from nine to two beds, although the facility was still required to staff for nine beds, explains Patrick Roll, public relations spokesman for HealthCare Dimensions, the Waltham, MA, agency that operated the facility. The facility’s last two patients were transferred in January to a hospital-based palliative care unit also operated by HealthCare Dimensions at Beth Israel Deaconess Medical Center in Boston.
Need for hospices remains
"I wish Mission Hill could have been preserved," says Patricia Gibbons, BSN, CRNH, nursing manager of Beacon Place, a 12-bed, AIDS-focused hospice residence operated by Hospice of Greensboro, NC, and one-time director of the Boston facility. "There still are people who can’t tolerate or will fail to take protease inhibitors. We still have to be there for these people. It’s wonderful what’s happening with protease inhibitors, but let’s not jump the gun and say AIDS is cured." With the closure of Mission Hill and several other AIDS hospice facilities around the country, Gibbons fears that when the need for inpatient hospice care re-emerges, the facilities won’t be there.
AIDS deaths in New York City last year were down significantly from the year before, while hospital occupancy for HIV patients in the city was 42% lower in October than at its peak in January 1993. Hospices are also reporting lower AIDS caseloads, although home care based programs may find it easier to redeploy staff than those with dedicated inpatient or residential beds. "Where we might have had 10% of our caseload AIDS patients, now it’s less than 5%," reports Claire Tehan, MA, hospice coordinator for Hospital Home Health Care Agency of California in Torrance. "Meanwhile, the number of clients on our agency’s AIDS case management program is growing."
"I think we’re in a new era for the care of people with AIDS: fewer patients but more complications," says David Brennan, MSW, LICSW, a social worker with Hospice, Inc. in Boston. "It’s time for us to rethink and redefine what we in hospice can do for PWAs. What is our role? What is an appropriate time for referral? I still feel strongly that PWAs should still get good hospice care t hat hasn’t changed. But the numbers are dramatically reduced." Brennan also coordinates his agency’s AIDS hospice program, but with reduced referrals that program is being phased out.
More treatment evaluations needed
"I can tell you what’s going on here," adds Paul Brenner, MDiv, MMU, coordinator of Jacob Perlow Hospice at Beth Israel Medical Center in New York City. "We have had a number of patients referred to us right after they were put on protease inhibitors. So it seems like there’s not a lot of evaluation going on as to whether patients can be in compliance for the treatments to benefit them. Most likely these people are being given a set of expectations that are not consistent with what hospice is here to do."
There may also be an economic motivation for referral sources seeking to get the drugs covered under the hospice benefit, Brenner says, adding that hospice could be used as a dumping ground. "That is a very powerful message [to patients]."
Jacob Perlow Hospice generally does not admit patients who are pursuing the new antiviral therapies, because of the wide gap between hospice philosophy and the patients’ expectations from those treatments. "We say, Let us know in four to six weeks how the patient is responding to the treatment. If it’s not having a significant impact, then we’ll admit.’" The hospice also reviewed all of its active AIDS patients to see if any would be appropriate for protease inhibitors; none were, Brenner said.
New clarity for hospice eligibility?
"The exciting thing with the protease inhibitors and with the new viral load tests is that we have the opportunity to measure a response to treatment that is diagnostically significant," in terms of the level of the virus still in the bloodstream, says Tom Grothe, RN, MFCC, AIDS hospice nurse with Visiting Nurses and Hospice of San Francisco. "We will soon approach the ability to say you are hospice-benefit appropriate, because you failed the antivirals,’ or you are not, because you haven’t tried them,’" he explains. "I have tried to approach [hospice] treatment decisions not on the basis of cost. These new combination therapies are valid and important attempts to fight AIDS and extend life," but they do not belong in hospice.
The Arlington, Va-based National Hospice Organization’s (NHO) recently updated Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases (see Hospital Management Advisor, January 1997, pp. 5-6) include estimates of survival time for various AIDS-related conditions and provide a good starting point for developing an agency’s admission policies. Grothe has drafted a letter for NHO members, now being reviewed by medical experts, which aims to further clarify a realistic hospice response to the challenge of protease inhibitors.
"We have done AIDS care for 16 years. We’ve bent over backwards to be more responsive to AIDS patients" through flexible admissions policies, specialized AIDS programs, and even different names aimed at sidestepping hospice’s association with death, Grothe says. "Now it’s time to be more specific about what hospice can and cannot do for these patients. I think the distinctions are possible to understand and learn, based on the laboratory measures. But I don’t think physicians or referral sources are aware of this yet."
Other implications for hospices
Other issues are also emerging to complicate how hospices should respond to protease inhibitors. One is the ethical challenge of AIDS patients without insurance or access to adequate medical management, who are referred to hospice without having been offered antiviral therapies. Will hospice become a dumping ground for such disenfranchised patients especially those with a history of IV drug use?
Hospice experts also fear that patients on these treatments may suddenly "crash and burn," when treatments cease to be effective, and the disease comes roaring back with a vengeance. Will those patients spend their final days in the hospital on life support or referred to hospice at the very end for crisis management? Gibbons predicts that such patients will require more costly medical management for out-of-control symptoms. And for those patients who fail protease inhibitors, despite the new treatment’s promise and hype, their disappointment and anger will be that much greaterchallenging hospice’s psychosocial skills.
"Our expectations are that protease inhibitors are not going to be widely effective in the patient population we serve. The highest number of our AIDS patients are IV drug users, not known for their ability to be consistent," Brenner says. Anti-viral treatment may require taking dozens of pills every day, some on an empty stomach and others with food. Serious side effects are reported, some requiring additional medications to manage, and others proving intolerable for some patients.
Palliative use may emerge
Could there be a palliative use for protease inhibitors?
"It’s too early to tell. We think it will be six months before treatment practice solidifies," Brenner adds. "Until we get a better history of what these drugs will do, and until AIDS doctors learn how to use them, expectations may be unrealistic. We have a lot of work to do, educating people about these issues."
Grothe says that hospices with underutilized AIDS beds may need to partner with other community agencies to provide other needed services, such as housing for disabled PWAs who are not dying. Gibbons suggests other new roles, such as working with other AIDS agencies to share hospice’s expertise in pain and symptom management or grief and bereavement management for patients not directly managed by the hospice. "I also believe hospice has a critical role in helping people identify their options including continuing or discontinuing treatment but we can’t play that role unless we remain at the table and are perceived as part of the continuum of HIV services."
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