End-of-life care in intellectual disability: A retrospective cross-sectional study

Katherine Hunt, Jane Bernal, Rhian Worth, Julia Shearn, Paul Jarvis, Edwin Jones, Kathy Lowe, Phil Madden, Owen Barr, Rachel Forrester-Jones, Thilo Kroll, Mary McCarron, Sue Read, Stuart Todd

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Background: Adults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown. Aim: To describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population. Design: Nationwide population-based postbereavement survey. Participants: 38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths. Results: Decedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of was less well rated, particularly in comparison with the general population. Respondents reported low levels of involvement in care and awareness of approaching death among adults with ID, and lower than in the general population. Conclusions: Access to end-of-life care for adults with ID may be constrained by a failure to identify approaching the end of life. The high proportion of unexpected deaths in this population warrants further study. There is a need to increase and support the involvement of adults with ID to be active partners in planning care at the end of their lives.

Original languageEnglish
Pages (from-to)469-477
JournalBMJ Supportive and Palliative Care
Issue number4
Early online date16 Oct 2019
Publication statusPublished - 19 Nov 2020


  • end of life
  • intellectual disability
  • learning disability
  • palliative care
  • surveys and questionnaires
  • terminal care

ASJC Scopus subject areas

  • Medicine (miscellaneous)
  • Oncology(nursing)
  • Medical–Surgical


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