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

doi:10.1111/jar.12744

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 journal › Article › peer-review

19 Citations (SciVal)

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 language	English
Pages (from-to)	1245-1258
Journal	Journal of Applied Research in Intellectual Disabilities
Volume	33
Issue number	6
Early online date	31 May 2020
DOIs	https://doi.org/10.1111/jar.12744
Publication status	Published - 30 Nov 2020

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Rachel Forrester-Jones
- Department of Social & Policy Sciences - Honorary Professor
- Centre for Development Studies
Person: Honorary / Visiting Staff

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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, 33(6), 1245-1258. https://doi.org/10.1111/jar.12744

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, vol. 33, no. 6, pp. 1245-1258. https://doi.org/10.1111/jar.12744

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abstract = "BackgroundPopulation based data are presented on the nature of dying in ID services.MethodsA 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.ResultsThe 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.ConclusionDeath 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",

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

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AU - Lowe, Kathy

AU - Madden, Phil

AU - Barr, Owen

AU - Forrester-Jones, Rachel

AU - Jarvis, Paul

AU - Kroll, Thilo

AU - McCarron, Mary

AU - Read, Sue

AU - Hunt, Katherine

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N2 - BackgroundPopulation based data are presented on the nature of dying in ID services.MethodsA 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.ResultsThe 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.ConclusionDeath 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

AB - BackgroundPopulation based data are presented on the nature of dying in ID services.MethodsA 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.ResultsThe 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.ConclusionDeath 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

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

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