Informal caregivers and the intention to hasten AIDS-related death.

OBJECTIVES: To determine the extent to which homosexual men dying of the acquired immunodeficiency syndrome (AIDS) receive medication intended to hasten death. To assess the impact on caregivers of administering medications intended to hasten death. METHODS: In a prospective study of caregiving partners of men with AIDS (n = 140), characteristics of the ill partner, the caregiver, and the relationship were assessed at baseline and 1 month before the ill partner's death. Three months after the death, caregivers were asked if they had increased their partner's narcotic and/or sedative-hypnotic medication dose and if so, what had been the objective of the increase, and their comfort with their medication decisions. RESULTS: Of 140 ill partners who died of AIDS, 17 (12.1%) received an increase in the use of medications immediately before death intended to hasten death. Diagnoses and care needs of ill partners who received increases in the use of medications to hasten death did not differ from those of ill partners receiving medication for symptoms. Fourteen increases (10%) in use of medications were administered by caregivers. These caregivers did not differ from those administering medication for symptom control in level of distress, caregiving burden, relationship characteristics, or comfort with the medication decision, but they reported more social support and positive meaning in caregiving. CONCLUSION: The decision to hasten death is not a rare event in this group of men. There is no evidence that it is the result of caregiver distress, poor relationship quality, or intolerable caregiving burden; and it does not cause excessive discomfort in the surviving partner. This study, although small, has implications for the policy debate on assisted suicide.

Relationship of CD4 counts to neurophysiological function in HIV-1--infected homosexual men.

OBJECTIVE: To explore the relationship of immune dysfunction to neurophysiological measures of brain-stem conduction time. DESIGN: Three-year longitudinal prospective cohort study; results of time 1 analyses reported. SETTING: San Francisco (California) General Hospital, Departments of Psychiatry and Epidemiology. PATIENTS: Volunteer sample of 55 human immunodeficiency virus (HIV)-positive and 37 HIV-negative homosexual men recruited from a larger cohort of homosexual men followed up since 1983 at San Francisco General Hospital as part of an ongoing study of the natural history and course of HIV type 1 infection. INTERVENTION: None. MAIN OUTCOME MEASURES: Auditory brain-stem responses and somatosensory evoked potentials for subjects stratified separately on HIV serostatus, Centers for Disease Control and Prevention symptom groupings, and absolute CD4 counts. RESULTS: The HIV-positive subjects had an increased wave III-V interpeak latency of the right ear auditory brain-stem response compared with the HIV-negative subjects (t test, P < .05). There were no significant differences among the three Centers for Disease Control and Prevention groupings on any evoked potential measure. When HIV-positive subjects were stratified on a measure of immune functioning, ie, CD4 counts, individuals with greater immune suppression were more impaired on speed of auditory brain-stem conduction time (Mann-Whitney U test, P < .05). Furthermore, 85% of subjects impaired on this evoked potential measure had CD4 counts of less than 0.40 x 10(9)/L (400/microL), whereas only 15% of those impaired on this measure had CD4 counts of greater than 0.40 x 10(9)/L. CONCLUSIONS: Asymptomatic HIV-positive subjects who do not have evidence of immune suppression do not appear to be at greater risk for neurophysiological impairment than HIV-negative subjects. The HIV-positive individuals who are immune suppressed (even while asymptomatic) appear to have an increased likelihood of central conduction time slowing as measured by evoked potential procedures.

Immune function and neuropsychological performance in HIV-1-infected homosexual men.

This study explores the relationship of immune dysfunction to the neuropsychological performance of individuals infected with HIV-1. Fifty-five HIV-positive homosexual men and 37 negative homosexual controls were evaluated using neuropsychological measures, physical exams, and measures of immune functioning. There were no significant differences favoring HIV-negative subjects over HIV-positive subjects. HIV-positive subjects, in fact, performed slightly better on attention and memory procedures. The HIV-positive subjects were then stratified according to the Centers for Disease Control symptom groupings (Group II, asymptomatic, n = 19; Group III, lymphadenopathy, n = 17; and Group IVA or C-2, symptomatic, non-AIDS, (n = 19). There were no significant neuropsychological differences among the three CDC groups. The HIV-positive subjects were also stratified on two measures of immune functioning: absolute CD4 counts (< 200, 201-400, > 400) and beta 2-microglobulin (beta 2M) (> or = 5.0, 3.0-5.0, < 3.0). Individuals with greater immune compromise, as measured by beta 2M, were more impaired on measures of attention and memory and had greater overall neuropsychological impairment (p < 0.05). Furthermore, 57% of the subjects who were abnormal on beta 2M were also impaired on measures of attention and memory, whereas only 14% of those with normal beta 2M were impaired on these same measures (p < 0.05). These results suggest that HIV-positive asymptomatics without evidence of immune compromise do not appear to be at greater risk of cognitive impairment than HIV-negative controls. However, for those HIV-positive individuals who are immune-compromised (even while asymptomatic), there is increased risk of neuropsychological impairment. These results also suggest that knowledge of serostatus and the use of the CDC classification system alone are insufficient in exploring the development of neuropsychiatric changes in HIV-1 infection.

Relationship of beta 2 microglobulin and CD4 counts to neuropsychological performance in HIV-1-infected intravenous drug users.

This study explores the relationship of immune dysfunction to the neuropsychological performance of i.v. drug users (IVDUs) infected with HIV-1. Ninety-seven HIV-positive and 45 HIV-negative former IVDUs on methadone maintenance were evaluated using neuropsychological measures, physical examinations, and measures of immune function, including absolute CD4 counts and beta 2 microglobulin (beta 2-M). There were no significant differences between the HIV-positive and HIV-negative subjects on any single neuropsychological domain. There was, however, a significant group difference on a composite indicator of neuropsychological impairment, with 32% of HIV-positive subjects demonstrating some degree of overall impairment compared with only 13% of HIV-negative subjects. HIV-positive subjects were then stratified according to the Centers for Disease Control (CDC) symptom groupings: group II, asymptomatic, n = 29; group III, lymphadenopathy, n = 30; and group IV A or C-2, symptomatic, non-AIDS, n = 38. There were no significant neuropsychological differences among the three CDC groups. The HIV-positive subjects were also stratified on absolute CD4 counts (< or = 200, 201-400, and > 400) and beta 2-M (> or = 5, 3-5, and < 3). Individuals with greater immune compromise (CD4, < 200, beta 2-M, > or = 5) were more impaired on measures of motor functioning. beta 2-M was found to be a better predictor than CD4 count of impaired neuropsychological performance. Furthermore, individuals with beta 2-M values > or = 5 have more than a threefold increase in the incidence of neuropsychological impairment than those with beta 2-M values < 3.0. These results suggest that beta 2-M may serve as a useful clinical marker for the development of neuropsychological impairment and that the risk of such impairment increases as the immune system weakens.

Caregiver burden in HIV-positive and HIV-negative partners of men with AIDS.

This study examines factors associated with caregiver burden in 82 HIV-positive (HIV+) and 162 HIV-negative (HIV-) partners of men with AIDS. We expected HIV+ caregivers to report more burden than HIV- caregivers because of the toll of their disease on their resources. HIV+ caregivers did report more burden and, compared with the HIV- caregivers, they were more religious or spiritual, had less income, and coped by using more positive reappraisal and cognitive escape-avoidance and by seeking social support. Comparisons of HIV+ caregivers with 61 HIV+ partners of healthy men indicated that most differences between HIV+ and HIV- caregivers were associated with HIV seropositivity rather than caregiving. However, of the variables associated with HIV seropositivity, only religiosity or spirituality contributed independently to burden in HIV+ caregivers, suggesting a relatively weak link between HIV seropositivity and caregiver burden. The model explained 62% of the variance in burden in HIV+ caregivers and 36% of the variance in HIV- caregivers.

Management of neurobehavioral impairment in HIV-1 infection.

HIV dementing illness recently has been delineated into two categories, HIV-associated minor cognitive/motor disorder that may or may not progress to an actual dementia, and HIV-associated dementia complex. At this time, these disorders are distinguished by severity of impairment. As such, each disorder presents with different management problems and thus requires different types of interventions. A model of patient management has been presented herein for each disorder, enumerating possible management problems and practical strategies to address them. Health care providers, in their role as consultants, can educate patients and caregivers about patient management, thus improving quality of life for all involved. The presented paradigm for patient management is based on current knowledge of HIV dementing illness and thus is clearly lacking. Critical issues still exist, in regards to the characterization of the behavioral and cognitive changes associated with HIV infection. The course of this neuropsychiatric illness remains poorly defined, and the progressivity of this illness, while at times is quite certain, is not always so certain. What differentiates those who progress to an end-stage dementia versus those who stop short is unclear. Additional neuropsychiatric research obviously needs to be done, but for individuals with HIV-related neurologic disorders, practical issues are pressing. Specialized residential programs need to be implemented and additional medical and financial services need to be more readily available. Health care providers can serve a crucial role here in making these needs known and actively promoting change in the current health care system.

Neuropsychiatric aspects of AIDS dementia complex: a report on a clinical series.

The AIDS Dementia Complex (ADC) frequently occurs in individuals with Acquired Immunodeficiency Syndrome (AIDS). We report on a clinical series of 33 patients with either AIDS or AIDS-Related Complex (ARC), who were referred for neuropsychological evaluation. This clinical series supports the developing understanding that AIDS spectrum patients often demonstrate impairment on tasks involving abstract reasoning, memory, speeded mental processing and motoric slowing. This series helps to draw attention to a small subgroup of patients, with no previous psychiatric history, who after infection with the human immunodeficiency virus (HIV), present with hyperactivity, euphoria and grandiose delusions. ADC would appear to bear with it the increased possibility of the development of secondary mania.

Postbereavement depressive mood and its prebereavement predictors in HIV+ and HIV- gay men.

Prebereavement predictors of the course of postbereavement depressive mood were examined in 110 gay men who were their partner's caregiver until the partner's death of AIDS. In all, 37 HIV+ and 73 HIV- bereaved caregiving partners were assessed bimonthly throughout a 10-month period beginning 3 months before and ending 7 months after the partner's death. Throughout the 10 months, mean Centers for Epidemiology Scale-Depression (CES-D) scores on depressive mood were above the cutoff for being at risk for major depression. CES-D scores decreased for 63% bereaved caregivers over the 7 postbereavement months, and 37% showed little change from high CES-D scores or increasing CES-D scores. High prebereavement CES-D scores and finding positive meaning in caregiving predicted diminishing depressive mood; HIV+ serostatus, longer relationships, hassles, and use of distancing and self-blame to cope predicted unrelieved depressive mood.

Treatment of cognitive impairment.

AIDS: HIV-related cognitive impairment symptoms can include altered thoughts, emotions, and behaviors. Some aspects of cognitive impairment are treatable if addressed quickly, others are untreatable and progress rapidly. The fourfold response to cognitive impairment requires accurate diagnosis, treatment and education coordination, aggressive treatment of accute symptoms, and management through psychotherapy and psychopharmacology of untreatable symptoms. Mild impairment often occurs with minor motor impairment. Individuals with mild impairment have some slowness in thinking, memory, and problem-solving abilities, but usually live independently and continue to interact meaningfully with others. Psychotherapists should encourage individuals with mild HIV-related cognitive impairment to capitalize on strengths and compensate for limitations. Patients with moderate to severe cognitive impairment may have complete memory loss and impaired manipulation and information retrieval. The key intervention principle is to provide support.^ieng

Diagnosis of cognitive impairment.

AIDS: The complexity of diagnosing cognitive impairment may be overwhelming. The diagnostic tools necessary to differentiate the causes of cognitive impairment are delineated. Most HIV-related cognitive impairment is caused by infection of the brain. Four HIV-related opportunistic conditions commonly cause cognitive impairment: toxoplasmosis, cryptococcal meningitis, progressive multifocal leukoencephalopathy, and lymphoma. Other causes are organic affective disorders, mood disturbances that result from specific biological causes. Some cognitive impairments are transient. Five procedures used to diagnose cognitive impairments are: mental status examination, neuropsychiatric interview, neurologic examination, laboratory and radiologic testing, and neuropsychological testing. These procedures may be conducted by a psychotherapist or a primary health care provider. Psychiatrists, neurologists, and neuropsychologists can be useful resources in negotiating the diagnostic process.^ieng

Management and residential placement problems of patients with HIV-related cognitive impairment.

The Neuropsychiatric AIDS Rating Scale, which classifies HIV-related cognitive impairment along a six-stage continuum, was used to explore the relationship between the severity of impairment and management and residential problems among 318 persons in San Francisco with suspected HIV-related cognitive impairment. Nearly half of the sample were in the moderate, severe, or end stage of impairment. One-third of the 318 persons, most of whom were in the moderate and severe stages, were reported to present residential placement problems. The management problems most associated with placement difficulties were home safety, wandering, confusion, and memory difficulties. More than a fourth of the moderately to severely impaired patients were living alone with no outside help or were homeless and living on the streets. Results of this study support the development of specialized residential programs for patients with HIV-related cognitive impairment.

The effects of clinical case management on hospital service use among ED frequent users.

This study examined the impact of case management on hospital service use, hospital costs, homelessness, substance abuse, and psychosocial problems in frequent users of a public urban emergency department (ED). Subjects were 53 patients who used the ED five times or more in 12 months. Utilization, cost, and psychosocial variables were compared 12 months before and after the intervention. The median number of ED visits decreased from 15 to 9 (P < .01), median ED costs decreased from $4,124 to $2,195 (P < .01) and median medical inpatient costs decreased from $8,330 to $2,786 (P < .01). Homelessness decreased by -57% (P < .01), alcohol use by -22% (P = .05) and drug use by -26% (P = .05). Linkage to primary care increased 74% (P < .01). Fifty-four percent of medically indigent subjects obtained Medicaid (P < .01). There was a net cost savings, with each dollar invested in the program yielding a $1.44 reduction in hospital costs. Thus, case management appears to be a cost-effective means of decreasing acute hospital service use and psychosocial problems among frequent ED users.