Ethical and Clinical Considerations in the Workup of HIV-Associated Neurocognitive Decline

Human immunodeficiency virus (HIV) can invade the central nervous system, leading to a spectrum of neurocognitive disorders known as HIV-associated neurocognitive disorder (HAND). Despite the widespread use of combination antiretroviral therapy (cART), patients remain at risk for HAND and other neurologic complications, including progressive multifocal leukoencephalopathy (PML) and HIV encephalitis (HIVE). Differentiating among these conditions is crucial, given their distinct etiologies, prognoses, and management strategies. We describe a 37-year-old man with a six-month history of untreated HIV who presented with a four-week history of progressive cognitive decline, confusion, incontinence, and loss of functional independence. T2/fluid-attenuated inversion recovery (FLAIR) MRI revealed bilateral cerebral white matter hyperintensity with patchy involvement of the cerebellar peduncles, excluding U-fibers and the corpus callosum, raising concern for PML, HIVE, or advanced HAND. His clinical course was complicated by inconsistent treatment adherence, medication refusal, and eventual determination of decision-making incapacity. Family conflict related to stigma rooted in his bisexual identity and HIV status contributed to delays in timely diagnostic testing and transition to hospice care. These delays were partly a result of his decision-making surrogate's difficulty in communicating prompt healthcare decisions due to family discord. This case highlights the dual challenges of clinical ambiguity and ethical conflict in the care of patients with advanced HIV. Diagnostic evaluation of HIV-associated cognitive decline requires integration of neuroimaging, cerebrospinal fluid studies, and neuropsychological testing. However, even when clinical pathways are evident, stigma, fractured family dynamics, and the absence of advance directives can obstruct timely and appropriate care. Optimal management of HIV-associated neurocognitive decline extends beyond biomedical treatment. A stigma-informed, ethically sensitive approach, including early counseling, advance care planning, surrogate support, and ethics consultation, is essential to protect patient autonomy and improve healthcare outcomes. This case emphasizes the need to address psychosocial and ethical barriers alongside clinical management in patients with severe HIV-related neurocognitive impairment.