Background: Despite major advances in therapy, acquired immune deficiency syndrome (AIDS) remains an important cause of morbidity and mortality in young adult populations. As AIDS has been converted into a chronic disease, it has resulted for some patients in a more protracted course of symptomatic illness. Comprehensive care for late-stage human immunodeficiency virus (HIV) disease now involves an increasingly complex mixture of disease-specific and palliative therapies, requiring coordination and collaboration between AIDS and palliative care services. We describe the experience of developing a palliative care consultation service for patients with AIDS at a large urban teaching hospital, funded by the Health Resources and Services Administration as one of six national demonstration projects for the integration of HIV and palliative care.
Setting: An 1100-bed medical center in the Bronx, New York. The multidisciplinary consultation team included a physician, nurse practitioner, social worker, chaplain, outreach worker, psychiatrist, and ethicist. Patients were referred from inpatient AIDS services and outpatient care sites.
Methods: Patients underwent standardized assessment with clinical case review, Memorial Symptom Assessment Scale (MSAS), Mini-Mental Status Examination (MMSE), Karnofsky score, and Rapid Disability Rating Scale (RDRS). Interventions and follow-up outcomes were recorded and categorized. All deaths were analyzed and predictors of mortality were determined by bivariate and logistic regression analysis.
Results: Program referrals have been steady, with 132 patients followed by the consultation service from July 2000 through October 2001; 73% were referred from inpatient services (representing 12% of all AIDS inpatients admitted to the hospital during the study period); 57% of patients were male, 36% African American, 55% Hispanic; 44% had a history of injection drug use. Median baseline values included: CD4+ T-lymphocyte count = 35/mm3, HIV viral load = 53,813 copies per milliliter, Karnofsky = 40, MMSE = 0 (with a median score of 24 for those able to complete the examination); number of severe symptoms reported by MSAS = 4; 71% had one or more serious impairments in activities of daily living (ADL) by RDRS. In addition to AIDS, 20% of patients had malignancies and 13% had end-stage liver disease. Presenting problems and priority issues identified at consultation included: care decisions/goals of care (68%), pain (40%), psychosocial issues (31%), depression (23%), anxiety (19%), nausea/vomiting (14%), insomnia (13%), and patient/family/team conflict (13%); these problems were fully or partially resolved in 68-91% of cases. 63 patients died (median days enrolled = 35); leading causes of death included AIDS (38%), sepsis (19%), cancer (19%), and liver failure/cirrhosis (17%). Death was predicted only by baseline functional status (Karnofsky, MMSE, ADL impairment), and not by CD4+ count, viral load, or any AIDS-specific variables.
Conclusion: Results suggest an important and ongoing need for palliative care services for patients with advanced HIV/AIDS, whose needs are likely to increase as AIDS evolves into more of a chronic disease. Patients were readily referred from predominantly inpatient settings, with very advanced disease; problems included a mix of medical and psychosocial issues, and were readily resolved by the consultation team in most cases. Death was predicted only by baseline functional status, not by traditional HIV disease markers. Mortality reflected both AIDS-related and non-AIDS-specific causes. Further studies are needed to identify more specific prognostic variables and to continue to improve palliative care treatment outcomes in late-stage patients with AIDS.