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.
death and dying
dying trajectories
end-of-life care
intellectual disabilities
mortality
unexpected death
Journal
Journal of applied research in intellectual disabilities : JARID
ISSN: 1468-3148
Titre abrégé: J Appl Res Intellect Disabil
Pays: England
ID NLM: 9613616
Informations de publication
Date de publication:
Mar 2021
Mar 2021
Historique:
received:
30
04
2020
revised:
09
09
2020
accepted:
12
10
2020
pubmed:
2
12
2020
medline:
19
8
2021
entrez:
1
12
2020
Statut:
ppublish
Résumé
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. 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. 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. 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.
Sections du résumé
BACKGROUND
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
METHODS
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
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
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.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
594-605Subventions
Organisme : Baily Thomas Charitable Fund
ID : 2781/5354
Informations de copyright
© 2020 John Wiley & Sons Ltd.
Références
Ali, A., Scior, K., Ratti, V., Strydom, A., King, M., & Hassiotis, A. (2013). Discrimination and other barriers to accessing health care: perspectives of patients with mild and moderate intellectual disability and their carers. PLoS ONE [electronic Resource], 8(8), e70855.
Bardsley, M., Georghiou, T., Spence, R., & Billings, J. (2019). Factors associated with variation in hospital use at the end of life in England. BMJ Supportive & Palliative Care, 9(2), 167-174. https://doi.org/10.1136/bmjspcare-2015-000936
Blackmore, S., Pring, A., & Verne, J. (2011). Predicting Death: Estimating the proportion of deaths that are ‘unexpected’. (N. E. o. L. C. I. Network Ed.). Southwest Health Observatory.
Colvin, H. R. (2015). National Survey of Bereaved People (VOICES): 2014 The quality of care delivered in the last 3 months of life for adults who died in England, including variations between different parts of the country and for different groups of patients. Statistical Bulletin Retrieved from https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthcaresystem/bulletins/nationalsurveyofbereavedpeoplevoices/2015-07-09
Colvin, H. R. (2016). National Survey of Bereaved People (VOICES): England, 2015: Quality of care delivered in the last 3 months of life for adults who died in England. Statistical. Bulletin. Retrieved from https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthcaresystem/bulletins/nationalsurveyofbereavedpeoplevoices/england2015
Directorate, N. M. (2012). First national VOICES survey of bereaved people (Gateway Reference 17865). Retrieved fromhttps://www.gov.uk/government/uploads/system/uploads/attachment_data/file/216894/First-national-VOICES-survey-of-bereaved-people-key-findings-report-final.pdf
Dixon Josie, King Derek, Knapp Martin (2019). Advance care planning in England: Is there an association with place of death? Secondary analysis of data from the National Survey of Bereaved People. BMJ Supportive & Palliative Care, 9, (3), 316-325. http://dx.doi.org/10.1136/bmjspcare-2015-000971
Downar, J., Goldman, R., Pinto, R., & Englesakis, M. (2017). The “surprise question” for predicting death in seriously ill patients: a systematic review and meta-analysis. Canadian Medical Association Journal, 189(13), E484-E493. https://doi.org/10.1503/cmaj.160775
Emerson, E., Hatton, C., Baines, S., & Robertson, J. (2016). The physical health of British adults with intellectual disability: cross sectional study. International Journal for Equity in Health, 15, 11.
Glover, G., Williams, R., Heslop, P., Oyinlola, J., & Grey, J. (2017). Mortality in people with intellectual disabilities in England. Journal of Intellectual Disability Research, 61(1), 62-74. https://doi.org/10.1111/jir.12314
Green, B., Bruce, M., Finn, P., Wright, A., Daniel, D., Povey, J., & Repper, D. (2015). Independent review of deaths of people with a Learning Disability or Mental Health problem in contact with Southern Health NHS Foundation Trust April 2011 to March 2015. Retrieved from Londonhttps://www.england.nhs.uk/south/wp-content/uploads/sites/6/2015/12/mazars-rep.pdf
Hatton, C., Glover, G., Emerson, E., & Brown, I. (2015). People with learning disabilities in England 2015: Main report (PHE publications gateway number: 2016404). Retrieved from https://www.improvinghealthandlives.org.uk/securefiles/161129_2317//PWLDIE%202015%20final.pdf
Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A., & Russ, L. (2013a). Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD). Final Report. Retrieved from Bristol http://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf
Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A., & Russ, L. (2013b). The deaths of people with learning disabilities Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD). Final Report. (pp. 34-35). : Nora Fry Centre, University of Bristol.
Heslop, P., Blair, P. S., Fleming, P., Hoghton, M., Marriott, A., & Russ, L. (2014). The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. Lancet, 383(9920), 889-895.
Heslop, P., Calkin, R., & Huxor, A. (2019). The Learning Disability Mortality Review (LeDeR) Programme Annual Report 2018. Retrieved from Bristolhttps://www.hqip.org.uk/resource/the-learning-disabilities-mortality-review-annual-report-2018/
Heslop, P., Calkin, R., Huxor, A., Allen, C., Allen, A., Avis, M., & Wistow, A. (2019). The Learning Disability Mortality Review (LeDeR) Programme, Third Annual Report. Norah Fry Centre.
Heslop, P., & Glover, G. (2015). Mortality of people with intellectual disabilities in England: A comparison of data from existing sources. Journal of Applied Research in Intellectual Disabilities, 28(5), 414-422.
Heslop, P., Read, S., & Dunwoodie, S. (2018). The hospital provision of reasonable adjustments for people with learning disabilities: Findings from Freedom of Information requests. British Journal of Learning Disabilities, https://doi.org/10.1111/bld.12244
Hunt Katherine, Bernal Jane, Worth Rhian, Shearn Julia, Jarvis Paul, Jones Edwin, Lowe Kathy, Madden Phil, Barr Owen, Forrester-Jones Rachel, Kroll Thilo, McCarron Mary, Read Sue, Todd Stuart (2019). End-of-life care in intellectual disability: a retrospective cross-sectional study. BMJ Supportive & Palliative Care, bmjspcare-2019. http://dx.doi.org/10.1136/bmjspcare-2019-001985
Hunt Katherine J, Richardson Alison, Darlington Anne-Sophie E, Addington-Hall Julia M (2019). Developing the methods and questionnaire (VOICES-SF) for a national retrospective mortality follow-back survey of palliative and end-of-life care in England. BMJ Supportive & Palliative Care, 9, (1), e5-e5. http://dx.doi.org/10.1136/bmjspcare-2016-001288
James, R., & O'Hara, J. (2019). Learning Disability Mortality Review (LeDeR) Programme: Action from Learning. (Publishing Approval Reference: 000373). Retrieved from https://www.england.nhs.uk/wp-content/uploads/2019/05/action-from-learning.pdf
Krahn, G. L., & Fox, M. H. (2014). Health disparities of adults with intellectual disabilities: What do we know? What do we do? Journal of Applied Research in Intellectual Disabilities, 27(5), 431-446.
Launer, J. (2018). How are you hoping to die? Postgraduate Medical Journal, 94, 671-672. https://doi.org/10.1136/postgradmedj-2018-136260
Michael Jonathan, Richardson Anne (2008). Healthcare for All: The Independent Inquiry into Access to Healthcare for People with Learning Disabilities. Tizard Learning Disability Review, 13, (4), 28-34. http://dx.doi.org/10.1108/13595474200800036
Northway Ruth, Todd Stuart, Hunt Katherine, Hopes Paula, Morgan Rachel, Shearn Julia, Worth Rhian, Bernal Jane (2019). Nursing care at end of life: a UK-based survey of the deaths of people living in care settings for people with intellectual disability. Journal of Research in Nursing, 24, (6), 366-382. http://dx.doi.org/10.1177/1744987118780919
Ouellette-Kuntz, H., Martin, L., Burke, E., McCallion, P., McCarron, M., McGlinchey, E., & Temple, B. (2019). How best to support individuals with IDD as they become frail: Development of a consensus statement. Journal of Applied Research in Intellectual Disabilities, 32(1), 35-42.
Scott Sharon, Denton Lilette, Conway Frances, Kinley Julie (2019). Managing health changes for people with a learning disability in a residential care home setting. International Journal of Palliative Nursing, 25, (11), 531-540. http://dx.doi.org/10.12968/ijpn.2019.25.11.531
Thomas, K., Armstrong Wilson, J., Team, G. (2016). Gold Standards Framework, Prognostic Indicator G, 6th ed. for more details see GSF PIG. Retrieved from London: www.goldstandardsframework.org.uk/PIG
Thornton, P. (2016). Report of the Chief Coroner to the Lord Chancellor, Third Annual Report: 2015-2016. Retrieved from London: https://www.judiciary.gov.uk/wp-content/uploads/2016/09/chief_coroner_report_2016_web2.pdf
Todd Stuart, Bernal Jane, Forrester-Jones Rachel (2013). Death, Dying and Intellectual Disability Research. Journal of Applied Research in Intellectual Disabilities, 26, (3), 183-185. http://dx.doi.org/10.1111/jar.12027
Todd Stuart, Bernal Jane, Shearn Julia, Worth Rhian, Jones Edwin, Lowe Kathy, Madden Phil, Barr Owen, Forrester Jones Rachel, Jarvis Paul, Kroll Thilo, McCarron Mary, Read Sue, Hunt Katherine (2020). Last months of life of people with intellectual disabilities: A UK population-based study of death and dying in intellectual disability community services. Journal of Applied Research in Intellectual Disabilities, 33, (6), 1245-1258. http://dx.doi.org/10.1111/jar.12744
Tuffrey-Wijne, I., & Hollins, S. (2014). Preventing ‘deaths by indifference’: identification of reasonable adjustments is key. British Journal of Psychiatry, 205(2), 86-87.
Tuffrey-Wijne, I., McLaughlin, D., Curfs, L., Dusart, A., Hoenger, C., McEnhill, L., & Oliver, D. (2016). Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care. Palliative Medicine, 30(5), 446-455.
Tuffrey-Wijne Irene, Bernal Jane, Hollins Sheila (2010). Disclosure and understanding of cancer diagnosis and prognosis for people with intellectual disabilities: Findings from an ethnographic study. European Journal of Oncology Nursing, 14, (3), 224-230. http://dx.doi.org/10.1016/j.ejon.2010.01.021
Tuffrey-Wijne Irene, Finlayson Janet, Bernal Jane, Taggart Laurence, Lam Claire Kar Kei, Todd Stuart (2020). Communicating about death and dying with adults with intellectual disabilities who are terminally ill or bereaved: A UK-wide survey of intellectual disability support staff. Journal of Applied Research in Intellectual Disabilities, 33, (5), 927-938. http://dx.doi.org/10.1111/jar.12714
Vrijmoeth, C., Echteld, M. A., Assendelft, P., Christians, M., Festen, D., van Schrojenstein Lantman-de Valk, H., Vissers, K., & Groot, M. (2018). Development and applicability of a tool for identification of people with intellectual disabilities in need of palliative care (PALLI). Journal of Applied Research in Intellectual Disabilities, 31(6), 1122-1132.
Wiese, M., Stancliffe, R. J., Balandin, S., Howarth, G., & Dew, A. (2012). End-of-life care and dying: issues raised by staff supporting older people with intellectual disability in community living services. Journal of Applied Research in Intellectual Disabilities, 25(6), 571-583.