Last months of life of people with ID: a UK population based study of death and dying in ID community services

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

Research output: Contribution to journalArticle

Abstract

Background
Population based data are presented on the nature of dying in ID services.
Methods
A retrospective survey was conducted over 18 months with a sample of UK based ID service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES-SF.
Results
The observed death was 12.2 deaths per 1000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life.
Conclusion
Death is not a common event in ID services. A major disadvantage experienced by people with ID was that their deaths were relatively unanticipated. People with ID living in supported living settings, even when their dying was anticipated, experienced poorer outcome
Original languageEnglish
JournalJournal of Applied Research in Intellectual Disabilities
Early online date31 May 2020
DOIs
Publication statusE-pub ahead of print - 31 May 2020

Cite this

Todd, S., Bernal, J., Shearn, J., Worth, R., Jones, E., Lowe, K., Madden, P., Barr, O., Forrester-Jones, R., Jarvis, P., Kroll, T., McCarron, M., Read, S., & Hunt, K. (2020). Last months of life of people with ID: a UK population based study of death and dying in ID community services. Journal of Applied Research in Intellectual Disabilities. https://doi.org/10.1111/jar.12744