End-of-life care and dying: issues raised by staff supporting older people with intellectual disability in community living services.
BACKGROUND
The aim of this study was to explore the current status of end-of-life care and dying of people with intellectual disability based on the experiences of staff in community living services.


METHODS
Focus groups and individual interviews were conducted, guided by grounded theory methodology.


RESULTS
The current status of end-of-life care and dying comprised five key 'issues': knowledge of dying, ethical values, the where of caring, the how of caring and post-death caring. These issues occurred in relationship with 'partners', including the dying person, other clients, fellow staff, family, external health services and the coroner.


CONCLUSIONS
End-of-life care represents a complex interaction between the care issues and the partners involved in care. Despite this complexity, staff were committed to the provision of end-of-life care.
University of Sydney, Lidcombe, NSW, Australia. michele.wiese@sydney.edu.au
Michele
M
Wiese
Roger J
RJ
Stancliffe
Susan
S
Balandin
Glennys
G
Howarth
Angela
A
Dew
D000328:Adult; D001291:Attitude of Health Personnel; D001293:Attitude to Death; D001315:Australia; D026688:Bioethical Issues; D017028:Caregivers / Q000941:ethics / Q000523:psychology; D004992:Ethics, Medical; D005260:Female; D006801:Humans; D008607:Intellectual Disability / Q000523:psychology / Q000534:rehabilitation*; D008297:Male; D011364:Professional Practice / Q000592:standards*; D011368:Professional-Family Relations; D011369:Professional-Patient Relations; D036301:Qualitative Research; D058028:Research Report; D013727:Terminal Care / Q000941:ethics / Q000379:methods / Q000592:standards*