NY hospices draft new AIDS standards

Epidemic is not over, insiders warn

New standards of hospice and supportive care for persons with advanced HIV may bring greater clarity to hospice’s role in the epidemic. Developed by the New York City Hospice and Supportive Care AIDS Initiative, the draft standards were presented to other hospices at a conference of the New York State Hospice Association in October. The authors would like to see the standards published and distributed to hospices nationwide.

The nine-member AIDS Initiative, administered by the San Francisco-based Tides Center, was created three years ago at a meeting of the Downstate Hospice Alliance in New York City when area hospice directors compared statistics on hospice utilization for AIDS patients, relates John A. Chermack, the project’s director. At that time 35% of those who died from AIDS nationally were served in hospice; but the rate varied from a high of 68% in San Francisco to a dismal 2.7% in New York City.

The new standards are based on the National Hospice Organization’s Standards of a Hospice Program of Care, but were adapted with the aim of removing barriers, including the perception of barriers, to hospice and supportive care for people with AIDS, Chermack says. Another major focus is on palliation. including the palliative use of anti-retroviral therapies in a hospice or supportive care context.

Anti-retrovirals, such as the new class of protease inhibitors, have sparked a revolution in HIV treatment in recent years, but many hospices believe they are both too expensive and too medically aggressive for hospice use.

"There are plenty of reasons why a patient might not want to give up these medications, and hospice has to be willing to consider what might otherwise be viewed as aggressive treatments because of their palliative uses," Chermack counters.

"Our standards of care commit programs to provide pharmaceuticals consistent with the current medical standard of practice which includes the availability of anti-retrovirals. The decision of whether to continue or discontinue anti-retrovirals is about whether the long-term benefit to the patient outweighs the side effects — not whether they’re considered aggressive.’"

Chermack says that palliative benefits of anti-retrovirals include the potential to reduce the incidence or severity of:

• painful cellulitis;

• edema;

• dyspnea related to pneumonia;

• Kaposi’s sarcoma;

• lymphoma;

• wasting syndrome;

• other opportunistic infections.

"There are also patients with AIDS-related dementia, for whom, if you discontinue protease inhibitors, they will experience increases in depression, delirium, anxiety, or psychosis. To dismiss the treatments out of hand will cause hospice to miss out on serving a lot of people who are in need."

Of course, barriers to hospice utilization may also come from the other direction, which is the unwillingness by many to consider hospice as an appropriate referral for patients with advanced AIDS.

"I’ve been to a hundred AIDS agencies in the last 18 months. Many of them have such skewed ideas about hospice that they’d never consider making a referral: Hospice is a warehouse for the dying . . . or for when you’ve given up all hope of helping the patient,’" Chermack relates.

"I try to present hospice as the hope of improved quality of life or of dignity and independence when the disease is advanced. We don’t want to take away hope of improvement, but we also are very realistic that we are dealing with a life-threatening illness," he explains.

"Part of the problem is the hospice requirement for a six-month life expectancy. Our guidelines focus instead on clinical criteria," says Chermack.

Physicians are unwilling to talk about six months or less, but they are willing to talk about lab results or other clinical criteria. "We want to emphasize that hospice is not giving up. It is providing additional, high-quality help at a time when that is needed."

The New York panel’s recommendations indicate that hospice referral is appropriate for HIV patients who have CD-4 counts of less than 25; viral loads of more than 100,000 ml; and one or more life-threatening opportunistic infections or symptoms. However, they state that hospice admission should not be dependent on the presence of a do-not-resuscitate order or a live-in caregiver, nor on a requirement that the patient is imminently dying, bed-ridden, or homebound.

The challenge of anti-retrovirals

Paul A. Volberding, MD, of the University of California-San Francisco AIDS Program at San Francisco General Hospital, echoes Chermack’s insistence on trying to make room for anti-viral therapies in hospice. Patients who fail the treatments or have high viral loads immune systems can still benefit from the treatments, Volberding tells Hospice Management Advisor.

He urges hospices to be flexible in their admission policies and drug coverage. He also contrasts patients just starting the anti-retrovirals — for whom the hospice might take a wait-and-see approach — with those on a third or fourth course of treatment. The latter may be unlikely to see dramatic turnarounds, but the treatment still could offer them enhanced quality of life.

Volberding also says that pain is an under-recognized and under-treated symptom in AIDS, which could provide an opening for hospices to share their pain management expertise on a consulting basis.

The situation hospice faces with the changing AIDS epidemic is not unlike other AIDS service organizations. "We face it in our clinics. You need to re-look at your mission statement and who you are as a provider," Volberding says. "The dangerous thing is for an organization to dig its feet in the dirt. Not many people are dying of AIDS today, so you don’t need as many beds. Do you shut them down, or do you say, Gee, we have these dedicated professionals, where’s the real need?’" he relates. "Off the top of my head, maybe what’s needed is respite care."

Despite recent gains, however, the epidemic will become worse again, Volberding predicts. "It’s pretty naive to think we’re not going to have progression from the disease. We’re still in the honeymoon period with the therapies, and it’s very predictable that things will get worse. Therefore, let’s encourage programs to be flexible, to try to broaden themselves, with the thought in the back of your mind that you’ll need some capacity in the future to re-include AIDS."

If hospice is willing to go down the anti-retroviral treatment path, he adds, it also needs to be knowledgeable about new drug therapies, their toxicities, drug interactions, and patient compliance issues. As new anti-retroviral drugs and combination therapies come on the market, these questions will become more complicated.

"In the world of AIDS, we need to keep learning. The web is a very useful tool, especially as a resource for agencies that see AIDS patients only sporadically." UCSF’s HIV Insite is a good place to start, he says. (See resource list on p. 146.)

Finding new roles for hospice

"We, too, have seen a decrease in the number of AIDS patients in hospice," says Claire Tehan, MA, hospice vice president for Hospital Home Health Care Agency, Torrance, CA, an affiliate of Little Company of Mary Health Services. "We’ve spent time talking to our own agency’s AIDS case management team. What we hear is, with the protease inhibitors, with all of the hope, people just don’t want to hear about hospice. Patients are still dying, . . . either because the patient has clearly said no to hospice, or else the staff has some reticence. No referral is made to hospice. We’re not content to let it be like that," Tehan says.

The hospice has obtained grant funding to explore alternatives. "Recognizing that to a very significant extent, AIDS patients don’t want to hear about hospice, and (are) recognizing we have some skills to offer in areas such as pain management. We’d like to find new ways to work with other HIV providers including our own agency’s AIDS case management team. How can we go in and do pain consultation, using a teaching approach, and still make it clear that this is a hospice nurse who’s an expert in pain? Then if the patient asks about hospice, it’s a natural," Tehan relates.

Sense of urgency is waning

"We expect to find patients where the case managers feel they need some help, and possibly work with those providers on delivering bad news. That’s a comment we have heard: bringing up a topic like hospice, even when it’s very appropriate, is not easy," she says.

"I’m not sure we’re always going to get HIV patients on hospice, but we need to try to work with HIV providers. If hospices don’t do something, we won’t ever be involved." Tehan adds that her hospice has rarely confronted the question of whether to cover anti-retrovirals. "Usually when they reach us, the anti-retrovirals have been stopped. I’m not aware of any situation where anybody is receiving hospice and still on the anti-retrovirals. If people are on them, even if they’re doing miserably, they don’t want to hear about hospice."

Kevin Mallinson, MSN, ACRN, a doctoral student at Johns Hopkins School of Nursing in Baltimore, says the real danger for both hospice and the nursing profession, "is that we have not seen the end of the AIDS epidemic; people have lost their sense of urgency about it. I’m afraid nurses will lose their expertise. When the treatments inevitably fail, I’m afraid we’ll get back to where nurses — and hospices — don’t know what they’re doing," he explains.

"It has become almost politically incorrect to even talk about dying (from HIV). Well, call me a cynic, but I’ve been doing this work too long," he observes. "And the next population group in the evolution of the epidemic is the poorest of the poor. I don’t think there will be as much motivation to learn again for them."

The grief of multiple losses is another area where hospice could play a key role, Mallinson says. "If all the deaths from AIDS stopped today, we’d still have to deal with the fact that so many in our community have died. If anything, people now have the time to sit back and say: Oh my God, so many are gone!’ In effect, it’s a kind of post-traumatic stress response."


Kevin Mallinson was scheduled to present a pre-conference workshop on multiple loss issues at the National Hospice Organization’s annual meeting in Dallas in November. For information, contact NHO at (703) 243-5900. Access UCSF’s HIV Insite page at: http://www.hivinsite.ucsf.edu. For information on the New York City Hospice and Supportive Care AIDS Initiative, contact John Chermack at Madison Square Station, P.O. Box 9, New York, NY 10159. Telephone: (212) 420-2838. Fax: (212) 844-1802. E-mail: diazchermack@earthlink.net.