End-of-life care and dying: issues raised by staff supporting older people with intellectual disability in community living services

J Appl Res Intellect Disabil. 2012 Nov;25(6):571-83. doi: 10.1111/jar.12000. Epub 2012 Sep 21.

Abstract

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.

Materials and 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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Attitude of Health Personnel*
  • Attitude to Death
  • Australia
  • Bioethical Issues
  • Caregivers / ethics
  • Caregivers / psychology
  • Ethics, Medical
  • Female
  • Humans
  • Intellectual Disability / psychology
  • Intellectual Disability / rehabilitation*
  • Male
  • Professional Practice / standards*
  • Professional-Family Relations
  • Professional-Patient Relations
  • Qualitative Research
  • Research Report
  • Terminal Care / ethics
  • Terminal Care / methods
  • Terminal Care / standards*