The experiences of staff who support people with intellectual disability on issues about death, dying and bereavement: A metasynthesis

Abstract

A more open culture around issues of death, dying and bereavement in intellectual disability settings is essential and could be promoted through staff training and support.

Breaking bad news to people with learning disabilities: A literature review

“…Lord et al. () found support of this in their metasynthesis where discussions surrounding death and dying were often avoided. Staff frequently reported broaching and exploring these conversations as difficult and uncomfortable with an organisational and sometimes societal silence being encountered, which caused inconsistencies in death management approach (Lord et al., ).…”

“…Therefore, people with learning disabilities are more susceptible to age‐related illnesses and have a higher incidence of being diagnosed with a life‐threatening condition (Dunkley & Sales, ). For practice, this has led to ethical challenges, debate and dilemmas for those caring for people with learning disabilities about whether to disclose bad news or not (Lord, Field, & Smith, ).…”

“…In an interesting manner, Lord et al. () found that staff often avoided engaging people with learning disabilities in conversations about death due to feelings of uncertainty and lack of training. It is therefore essential that healthcare professionals and staff become comfortable discussing death and dying with people with learning disabilities in order to enable them to die with dignity and choice.…”

“…In a corresponding manner, trends of nondisclosure to people with learning disabilities of a relative or friend's bad news have also been identified (Tuffrey-Wijne, Giatras, Butler, & Cresswell, 2012). In an interesting manner, Lord et al (2017) found that staff often avoided engaging people with learning disabilities in conversations about death due to feelings of uncertainty and lack of training. It is therefore essential that healthcare professionals and staff become comfortable discussing death and dying with people with learning disabilities in order to enable them to die with dignity and choice.…”

End of life and people with intellectual disability

“…No doubt there are multiple reasons for the apparent underrepresentation of people with intellectual disability in end-of-life research, but we do wonder whether the widely recognized issue of avoidance and protection by families and disability staff (Lord, Field, & Smith, 2017;Wiese, Stancliffe, Read, Jeltes, & Clayton, 2015) also extends to researchers, ethics committees and those who gate-keep access to research by people with intellectual disability. Lord et al (2017) refer to this phenomenon as the "cautious silence". McKenzie et al's.…”