Dying With Intellectual and Developmental Disability: A Bibliometric Review of End-of-Life and Palliative Care Literature, 1990–2025

How a scholarly community organizes knowledge about the deaths of marginalized populations is itself a question for death studies. This bibliometric review maps the global literature on end-of-life and palliative care for adults with intellectual and developmental disabilities, drawing on 919 English-language articles from 1990 to 2025. Only 5.5% of papers appeared in palliative care journals; the evidence base has accumulated in disability-specialist venues largely invisible to scholars and clinicians of dying. Topic modeling on 423 core documents shows staff training has dominated this scholarship for three decades, while the perspectives of dying people themselves remain peripheral, a pattern that speaks to long-running concerns about awareness contexts and the social organization of dying. Citation analysis reveals a field whose intellectual architecture rests on a single author. The literature mirrors the marginalization of the population it studies; this review offers death scholarship a structural map and an agenda for diversification.