AIDS service organizations face ethical challenges
Agencies must confront changing HIV environment
Charles Garfield, PhD, founder in 1978 of San Francisco’s Shanti Project, says many AIDS service organizations, including Shanti, are being forced to find a new direction in an era of antiviral treatments. "The difference with AIDS is its ambiguity. This whole disease is in flux," he says.
Shanti was founded as a volunteer counseling program for people with life-threatening illnesses, before specializing in AIDS services in the early 1980s.
"It’s obvious that the protease inhibitors work splendidly for some, not at all for others, and still others are in an ambiguous place," he tells Hospice Management Advisor. "Meanwhile, media sound bites suggest that AIDS is being conquered. It’s a nation grown weary of the epidemic. There is a large societal wave where regular folks, my friends and yours, have the feeling: Gosh, isn’t it great. OK, let’s move on to other concerns.’"
Not so fast, Garfield cautions. "We don’t know how long these drugs will hold, even for those [patients] in good shape."
Hospice has a crucial role to play, regardless of how it defines its place on the HIV continuum. "But it’s hard to get a fix on what one’s relationship is to the identified affected population, especially if you define yourselves as only care for the dying, when there’s such tremendous momentum for living," Garfield says. (See cover story, p. 17 in this issue of HMA.)
Hospices also need to confront the psychological impact for the individual who goes into hospice. "How does that individual cope when going into hospice is equivalent to the statement, You are dying’? People come to that conclusion, if at all, at very different rates," he says. This issue was brought into sharp relief by the younger population affected by the AIDS epidemic, but it existed from hospice’s earliest days, and is now cropping up with other diseases, Garfield says.
"I would like to see more work of a psychosocial nature with individuals to help them, not to face the reality of their dying that’s our agenda but to give voice to their own realization of what’s going on for them. Many people will broach the issue of their own dying if it is in a context of being with someone perceived as a kindred spirit," he observes. That kind of relationship requires real sensitivity and skill by the hospice caregiver. "Perhaps it’s time for hospice to refocus on the character of optimal helpers, and the creation of a safe space, even a sacred space," he says.
"I think the characteristics that best define that space apply to anybody going through this challenging experience. Look at people with AIDS, some of whom are challenged not by dying but by the need to travel from the land of the sick to the land of the well. I’d like to see hospice-like environments for people whose reality now is to redefine themselves," he relates. "What I would say to senior hospice people is: Please keep doing what you’ve done, historically, extraordinarily well. But now teach us how to create that space with all patients and, eventually, with all people. Why not go into other contexts and teach people the best that hospice has learned? And stay open to learning and growing."
Patricia Gibbons, BSN, CRNH, nurse manager for Beacon Place, a 12-bed AIDS-focused hospice residence in Greensboro, NC, recently returned from an HIV conference in Washington, DC, in December, sponsored by the American Academy of Hospice and Palliative Medicine. At that meeting, "the question was asked: Do we continue to try to reach out to the HIV population, with all our other struggles in hospice? Or is it better to sit back and say we’ll serve those patients who come to us and meet our criteria?" she relates. (The drop in AIDS census experienced by Gibbons’ parent agency, Hospice at Greensboro, between 1995-96 and 1996-97 is shown in the graph on p. 20.)
"Are people on antivirals appropriate for hospice? Individual hospices will have to make up their own minds, but I caution them to look at the founding precepts of hospice," Gibbons says. "It is about choice and about conversation. Sometimes hospice is the safest place to have the conversation about halting treatment." Despite fears that it may be questioned by the hospice’s fiscal intermediary, "Here we do admit people on protease inhibitors," paying for the treatments on the hospice benefit, but with a care plan in place at the time of admission specifying how and when treatment decisions will be re-evaluated, she says.
"I also think that the hospices with inpatient facilities will be the ones serving HIV patients. There aren’t even that many HIV patients in home care anymore. When people need hospice, they usually need the building," she adds. "I think anybody that has an inpatient environment has a responsibility to underserved populations. If you have an inpatient facility, you don’t ever expect to make money on it."
"There are still a whole bunch of people who are dying. What are we doing in hospice to make another adjustment?" asks Paul Brenner, MDiv, MMU, coordinator of Jacob Perlow Hospice in New York City. "The people with AIDS who are at the end stage of disease and need end-of-life care are even more marginalized than we have been looking at in the past," he explains. "Those who have access to and can benefit from protease inhibitors tend to be easier to take care of, so it’s easier for hospice programs to say, That problem is over. Let’s move on.’"
Brenner acknowledges that hospices today are hard-pressed financially. "It’s never been easy to take care of these difficult patients. But that’s not an excuse not to do it, unless we’re saying that hospice exists only to take care of the ones who have the best support, the best access to medical care the ones we can bring the happy endings to."
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