Expecting the unexpected: measures, outcomes and dying trajectories for expected and unexpected death in adults with intellectual disabilities in social care settings in the UK

Jane Bernal, Katherine Hunt, Eleri Worth, Julia Shearn, Edwin Jones, Kathy Lowe, Stuart Todd

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Considerable attention is rightly paid to preventable deaths in adults with intellectual disabilities. The pattern of these deaths and the implications for services have been less considered. Method: This paper forms part of a larger cross-sectional study of deaths in a defined population of adults with intellectual disabilities. Data from VOICES-SF were obtained from intellectual disability service providers for each death within their supported population over 18 months, 149 decedents in all. Results: Only 34.2% of deaths were anticipated, death was often sudden or followed a short illness. Four dying trajectories were identified, and categorized by length of illness, service use, care outcomes, symptom control and cause of death. Conclusions: Recognition that most deaths in this group were unanticipated implies a need for better preparation for less expected dying and better anticipation. A descriptive epidemiology of dying among people with intellectual disabilities is needed.

Original languageEnglish
Article number12827
Pages (from-to)594-605
Number of pages12
JournalJournal of Applied Research in Intellectual Disabilities
Volume34
Issue number2
Early online date30 Nov 2020
DOIs
Publication statusPublished - 1 Mar 2021

Keywords

  • End of life care
  • Mortality
  • Dying trajectories
  • Unexpected death
  • Death and dying
  • Intellectual disabilities

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