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Should hospices scale back AIDS programs?
Case management offers model approach
Nearly a decade ago, 50,000 people died of AIDS in one year alone. At the height of AIDS mortality, hospices built inpatient facilities and assembled the expertise to deal with an epidemic that seemed to have no end in sight. Since then, however, improved drugs and prevention education have lowered the number of annual deaths to fewer than 9,000 per year.
Hospices that once dedicated much of their resources to handling the growing number of patients dying from AIDS or AIDS-related illnesses have seen the number of AIDS patients steadily decline. AIDS is now characterized as a chronic illness marked by frequent and sometimes life-threatening exacerbations that can include infections, malignancies, and neurologic consequences.
As with Alzheimer’s disease, it is difficult to estimate how long an AIDS patient has to live. Further, drugs, including protease inhibitors, have helped patients improve their health even when death seemed imminent. This often leads to hospice admission when the patient is in the end stages of disease and is thus too weak — and perhaps too ravaged by dementia — to truly benefit from hospice care.
"Some of our clients live for long periods of time; others fail miserably on the medications and die very quickly," says Jeffrey L. Reynolds, MPA, vice president for public affairs for the Long Island Association for AIDS Care in New York. "In any event, hospice utilization is down considerably."
It seems hospices are at a crossroads in AIDS care. With fewer patients, it’s hard to justify spending money on AIDS programs or acquiring and maintaining expertise when there are more cost-effective ways to spend money. Still, there are compelling reasons for hospices to not only maintain their current AIDS programs, but also to plan for the near future so they will not be caught off guard. Those reasons include:
The all-disease approach
Hospice referral for AIDS usually occurs when patients have reached the end stages of the disease, but referral often is delayed until the patient is in late-stage AIDS. Late-stage AIDS is defined as CD4+ counts below 200, and end-stage AIDS is when CD4+ counts are below 50. Both stages of the disease are characterized by frequently occurring opportunistic infections, often with more than one pathogen. Symptoms of these advanced stages include pain, diarrhea, nausea and vomiting, fever, dyspnea, cough, congestive heart failure, anemia, skin disorders, dementia and delirium, wasting, depression, anxiety, fatigue, and fear. These patients’ need for palliative care is unquestionable. The challenge, however, is meeting the needs of AIDS patients without sacrificing the resources needed for the larger population of patients with more common illnesses.
While communities will differ in their response to this question, Hospice of Marin has adopted a case management approach that may serve as a model. The hospice’s approach is strikingly similar to case manager models advocated by hospice industry experts trying to introduce hospice and palliative care earlier in the process. Demonstrations of case management in hospice have been used to coordinate care among patients that have been recently diagnosed with cancer.
Hospice of Marin’s approach calls for a case manager who coordinates an AIDS patient’s care, including palliative care and medical care. Marin also involves community organizations to ensure patients have access to services provided by the hospice or other providers.
The program works like most case management models. Patients with AIDS meet with a case manager for an assessment of need. The patient is told what services are available currently and in the future as the illness progresses. Recognizing that AIDS patients have a unique set of medical and psychosocial needs, such as poverty, drug addiction, and housing, community groups — such as food banks, housing programs, and churches — are included in the care discussion, creating an expanded interdisciplinary team.
Case managers remain in touch with patients, both in times of frequent medical care and in periods when a patient’s health has improved. Without this consistent contact, medical workers lose touch with patients during periods of improved health, only to be reunited when the illness flares up and sends the patient to the emergency room.
"By staying in touch, we can decrease the intensity of these cycles,"says Gornett.
Case management cuts across diseases
The beauty of Marin’s case management approach is that it is adaptable to other diseases, says David Martin, MDiv, executive director of Marin AIDS Interfaith Network. "It’s important not to get pigeonholed by disease," he adds. "It’s critical that we see care across diseases.
Whatever the disease or setting, comprehensive case management includes at least five components:
In 2002, Promoting Excellence, a National Program Office of The Robert Wood Johnson Foundation that has provided $15 million in grants and technical support to innovative programs that promote improved care for the dying, conducted a study at three sites to measure the financial implications of combining palliative care with medical intervention. Following are the study’s findings:
• Hospice of Michigan and the University of Michigan Comprehensive Cancer Center.
This program, which provides hospice care to patients who receive cancer treatment, recorded fewer emergency room visits and lower hospitalization costs. Compared with patients receiving only cancer treatments, patients receiving both palliative care and cancer therapy had fewer emergency room visits per patient (0.8 vs. 1.07), fewer hospital admissions per patient (1.65 vs. 1.83), and shorter hospital stays per patient (7.7 vs. 9.9 days).
Average hospitalization costs for patients receiving only cancer care were $13,126 per patient, compared with $8,974 for those receiving both cancer care and hospice care. Average total costs for patients receiving only cancer treatments were $19,790 per patient, compared with $12,682 for those receiving both forms of care.
Program has higher satisfaction, lower cost
• Kaiser Hospice and Home Health.
The Downey, CA, hospice program provides hospice care along with curative and restorative care to patients with congestive heart failure, respiratory disease, and cancer. Most patients have as long as a year to live. A team of physicians, social workers, nurses, and aides make home visits to patients, develop treatment goals, and provide care. In addition, the team provides respite care and emotional and social support to the family. The goal of the program is to prevent unnecessary hospitalizations and to allow patients to die at home, if possible.
Based on a two-year comparative study involving 300 patients who died, patients who were in the program reported higher satisfaction with the care they received. More than 87% of the program patients died at home, compared with less than 57% of the control group patients. The average daily cost for a patient in the palliative care program was $62, compared with $133 for a patient receiving usual care. Total per-patient costs for those in the program were 45% lower than for those receiving usual care ($7,990 vs. $14,570).
• Lillian and Benjamin Hertzberg Palliative Care Institute at Mt. Sinai Medical Center.
By allowing palliative care nurses and physicians to consult hospital providers, this program netted more $750,000 in hospital length of stay costs.
The New York City-based program provides a team of nurses and physicians to advise hospital providers on pain management and to consult with family members regarding decisions over life-sustaining care. Aside from showing symptom improvement among patients experiencing severe, moderate, or mild levels of pain, nausea, and breathing problems, cost savings from palliative care were $757,555 for those patients who stayed in the hospital for longer than 14 days and $455,936 for those who stayed for longer than 28 days.
Another reason not to scale back on hospice AIDS programs is that, inevitably, people living with HIV infection or with AIDS are going to die. Many will die from AIDS or AIDS-related illness; others may come to hospice with a terminal illness unrelated to AIDS, but complicated by it. For example, many HIV/AIDS patients develop high blood pressure from the use of protease inhibitors. In addition, hepatitis C is expected to be a common co-infection among HIV/AIDS patients, says Martin.
With HIV-positive people living longer, a growing number of deaths from AIDS are occurring among older people. In 1994, one in four deaths from AIDS occurred among people ages 45 years and older, according to the Health Resources and Services Administration (HRSA), a branch of the federal Department of Health and Human Services. By 1998, that proportion had risen to one in three, underscoring the need for systems of care and support that respond to the needs of an aging HIV-positive population.
Treating HIV disease in concert with conditions often associated with the aging process is complex. According to HRSA, doctors may have difficulty distinguishing HIV-related illnesses from those related to aging. For example, pneumocystis pneumonia may be mistaken for congestive heart failure in individuals with chronic heart disease, and HIV-related dementia may look like Alzheimer’s disease.
Opportunity to reach African-Americans
AIDS has been particularly devastating to minorities. African-Americans represent about half of the HIV/AIDS cases in the United States, a disproportionate amount considering they represent a much smaller segment of the general population.
According to the CDC, the AIDS rate among African-Americans was nearly ten times the rate reported among whites. From 1996 to 1998, overall AIDS incidence (the number of people with HIV who progress to AIDS each year) declined rapidly, falling 38% among whites but only 24% among African-Americans.
AIDS deaths during those years showed a similar pattern, declining nearly 60% among whites and only 44% among African-Americans. Since 1998, the falling rates of AIDS cases and deaths have stalled among all races. In addition to historically higher rates of infection, a recent CDC study of 9,113 patients in 11 U.S. cities found that HIV-infected African-Americans were less likely than infected whites to receive the powerful new combination treatments for HIV.
"The end of life’ stage tends to go faster these days, and the populations most heavily impacted by HIV — racial/ethnic minorities and those who are poor — have never used hospice services to the extent that other groups have," says Reynolds. "In some instances, our clients who are chronic substance users — a population heavily represented among current HIV cases — have been actively turned away from hospice placements."
Reynolds observes that African-Americans with HIV/AIDS typically have the same misunderstanding of what hospice does that exists among the larger African-American population.
"Hospices still struggle with the popular misconception that they are merely focused on death," says Reynolds. "While hospices have changed that perception among some populations and folks with some illnesses, I think the misconceptions persist among some target groups."
While this article presents compelling reasons for hospices not to scale back their AIDS programs, there are factors that will affect hospices’ dedication to treating AIDS patients in era of HIV infection as a chronic illness.
The most significant factor is money. Many AIDS case management programs are supported by government funds. With other pressing problems in health care and diminishing federal and state budgets, funding is harder to come by.
"The challenge, as I see it, is keeping up our response to AIDS when federal and state funding is in rapid decline," says Gornett. "There is just as much money out there for a pure case management approach."