End-of-life care in intellectual disability: a retrospective cross-sectional study.
end of life
intellectual disability
learning disability
palliative care
surveys and questionnaires
terminal care
Journal
BMJ supportive & palliative care
ISSN: 2045-4368
Titre abrégé: BMJ Support Palliat Care
Pays: England
ID NLM: 101565123
Informations de publication
Date de publication:
Dec 2020
Dec 2020
Historique:
received:
25
07
2019
revised:
10
09
2019
accepted:
19
09
2019
pubmed:
18
10
2019
medline:
6
3
2021
entrez:
18
10
2019
Statut:
ppublish
Résumé
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. 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. Nationwide population-based postbereavement survey. 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. 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. 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.
Sections du résumé
BACKGROUND
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
OBJECTIVE
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
METHODS
Nationwide population-based postbereavement survey.
PARTICIPANTS
METHODS
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
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
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.
Identifiants
pubmed: 31619439
pii: bmjspcare-2019-001985
doi: 10.1136/bmjspcare-2019-001985
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
469-477Informations de copyright
© Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.
Déclaration de conflit d'intérêts
Competing interests: None declared.