RT Journal Article
SR Electronic
T1 End-of-life care in intellectual disability: a retrospective cross-sectional study
JF BMJ Supportive & Palliative Care
JO BMJ Support Palliat Care
FD British Medical Journal Publishing Group
SP 469
OP 477
DO 10.1136/bmjspcare-2019-001985
VO 10
IS 4
A1 Katherine Hunt
A1 Jane Bernal
A1 Rhian Worth
A1 Julia Shearn
A1 Paul Jarvis
A1 Edwin Jones
A1 Kathy Lowe
A1 Phil Madden
A1 Owen Barr
A1 Rachel Forrester-Jones
A1 Thilo Kroll
A1 Mary McCarron
A1 Sue Read
A1 Stuart Todd
YR 2020
UL http://spcare.bmj.com/content/10/4/469.abstract
AB 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.