Disability service providers need more training on end-of-life care

By Michele Wiese
The University of Sydney, Australia

People with intellectual disabilities (ID) are living longer, and are experiencing life-limiting illnesses like cancer, cardiovascular disease, and dementia. Some people with ID who live in supported living centers, like group homes, receive end-of-life care. However, we don't know what that care looks like, and what the experience is like for staff who offers these services.

What did you do in your research?
We wanted to understand experiences of staff that support people with ID who are dying. Focus groups and interviews were completed with 33 staff working in supported living centers caring for older people with ID. This group of staff had cared for people who died recently, or who were going to die in the not-too-distant future.

What did you find out?
Five key ‘issues’ regarding end-of-life care and dying were found: 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. Examples of key issues include:
  • Staff, and people with ID, sometimes didn't understand what dying really meant
  • Not everyone agreed on decisions about end of life care
  • The dying client couldn't always stay at home to die
  • Few of the staff were trained to give end-of-life care
  • After the person dies, post-death care to those left behind is important
What are the take-home messages?
The disability sector has a responsibility to make sure that people with ID experience quality care at the end of life. In order to do so, they need the training and support. There is an urgent need for further research; since there’s a continued growth in the numbers of ageing people with ID that will need extended periods of end-of-life care.

To learn more about these findings contact
Michele Wiese.

Full Journal Article
Wiese, M., Stancliffe, R., 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.