Caring for Patients With AIDS

Dr. Brechtl: The AIDS Discrete Program was initiated in 1989 as the first long-term treatment site for patients with advanced AIDS and subsequently grew into a 156-bed unit. It has admitted and treated approximately 1,500 patients, or about 10% of the New York City AIDS population since the beginning of the epidemic. All patients are admitted from area hospitals and have advanced disease and/or are disabled severely from HIV infection and related conditions. The mean age is 48 years and 18% of patients are female. Approximately two-thirds have intravenous illicit drug use as their primary HIV risk factor. Nearly all patients are African-American or Hispanic. Our facility demographics are typical of AIDS patients in nursing homes.

Prior to the availability of protease inhibitors and highly aggressive antiretroviral treatment (HAART) regimens in 1996, a patient’s experience was like a “death march” because of ineffective treatments. Since then, the mortality rate has decreased, although there is still a mortality rate of 15% within three months of admission to the program. Another 25% do not tolerate or develop resistance to HAART regimens. This results in a total treatment failure rate of 40%. There have been, on average, 180 new admissions per annum since 1996, when protease inhibitors became available.

Edwards: What types of AIDS-related illnesses affect your population?

Dr. Brechtl: Most of the Centers for Disease Control AIDS-defining diagnoses are seen and treated. These include opportunistic infections and malignancies. The prevalence of some of these diagnoses has changed since the advent of HAART regimens. Conditions like wasting syndrome are frequent in the more advanced cases. Nearly half the patients have neuropsychiatric conditions as a direct result of HIV infection and/or opportunistic infections or malignancy. AIDS dementia, central nervous system toxoplasmosis, progressive multifocal leukoencephalopathy, and non-Hodgkin’s lymphoma are common causes for the disorders. Incontinence is an issue for many patients because of neurologic abnormalities. The acuity level of patients’ illness and need for care has remained high and more complex than that of traditional nursing home residents, although their acuity level is rising.

Edwards: In the long-term care setting, how do you modify the approach to care for these patients?

Dr. Brechtl: Modifications to the approach to care are numerous. The unit is staffed by full-time salaried physicians and nurse practitioners or physician assistants (four AIDS-experienced physicians and three clinical extenders, i.e., nurse practitioners and physician assistants). The complexity and case-mix of the patients’ conditions warrant that a higher level of care delivery be provided at TCCHCC, as opposed to frequent transfers to hospitals. Thus, treatment modalities such as IV fluids and/or antibiotics, blood transfusions, etc., are administered frequently at TCCHCC. The full-time medical presence also results in timely clinical assessments and interventions when conditions change. There is also on-site or on-call medical presence during nights and weekends.

A higher sensitivity to the palliative and end-of-life needs of patients with advanced AIDS has evolved at the Center. We have a policy and procedure to identify patients who are unlikely to survive six months. They receive daily monitoring of pain and other symptoms and more frequent interventions by members of the multidisciplinary team. Likewise, there is an active bioethics program that addresses issues of withholding or withdrawing burdensome treatments during the end-of-life process.

Edwards: How do you modify activity and rehabilitation programs to meet your patients’ needs?

Dr. Brechtl: Many patients participate in rehabilitation therapy depending on their condition and restorative potential. Because of the high prevalence of a history of substance abuse, the psychology and social service departments actively involve patients in support groups and counseling. Recreation therapy provides programs and activities that are more appropriate for this younger and special population, such as educational courses, day trips, and hobby clubs. The therapists working with AIDS patients are not the same as those working with the long-term care elderly residents.

Edwards: Considering the high cost of anti-AIDS drugs, does care for this population cost more than for traditional senior residents?

Dr. Brechtl: The cost of caring for these advanced AIDS patients is much higher than the cost of caring for traditional geriatric nursing home residents. However, there is a significantly enhanced daily reimbursement rate for these patients. In addition, essential AIDS-related medications are covered by a “pass through” method (covered by the state above and beyond daily reimbursement). Nearly all the patients are covered by Medicaid.

Edwards: What are the reactions of residents without AIDS to those with the syndrome? How do you handle any problems?

Dr. Brechtl: There really have been minimal problems at TCCHCC regarding non-AIDS residents’ reaction to the presence of AIDS patients. The AIDS unit is geographically separated, but even in common areas there have been minimal incidents related to the stigma of AIDS.

Edwards: Considering the stigma surrounding HIV/AIDS, and the industry’s already high turnover, have you had difficulty retaining staff?

Dr. Brechtl: Staff retention has been good. Only one medical staff person has left during the past seven years and, despite a nursing shortage, the retention of nurses has likewise been successful. These nurses are usually quite dedicated to the AIDS program and its patients. There has also been little turnover in other, non-clinical disciplines. Staff are aware of the risk of HIV exposure during the course of their work and adhere to universal precaution guidelines for barrier control. There are regularly scheduled staff development sessions that address infection control issues. Also, nursing staff and other supporting staff work on the units voluntarily. They even function as AIDS patient advocates when necessary.

Edwards: Families often rally around senior residents in nursing homes as death nears; is this the case with your AIDS patients, who often face significant prejudice from their families and communities?

Dr. Brechtl: Many patients over time become more trusting of the staff and the environment. They, likewise, often reconcile with family members and significant others who previously may have been estranged. Some patients, though, do not have anyone close or lack family or social support. The staff, including pastoral care, attempt to fill this void, especially when patients require palliative or end-of-life care.

Edwards: Considering your facility’s experience with patients who have HIV/AIDS, what caregiving tips can you offer facilities that might not routinely care for this population?

Dr. Brechtl: There must be a programmatic approach at long-term care facilities when caring for AIDS patients. The medical staff needs to be familiar and comfortable with the guidelines for treating them. The nursing and support staff should want to care for such patients, and not be required to do so; the facility and its caregivers cannot create another layer of stigma to an already stigmatized population. NH