Background: In children with profound intellectual and multiple disabilities (PIMD), discussions about end-of-life decisions (EoLDs) are comparatively common. Nurses play a crucial role in the care for these children, yet their involvement in EoLD discussions is largely unknown. The objective of this research was to investigate the involvement in the hospital of nurses in discussions with parents and physicians about EoLDs for children with PIMD.
Method: In a retrospective, qualitative study, we conducted semi-structured interviews with the nurses of 12 children with PIMD for whom an EoLD was made within the past 2 years.
Results: Parents primarily discuss EoLDs with nurses before and after the meeting with the physician. Nurses who were involved in EoL discussions with parents and physicians assisted them by giving factual information about the child and by providing emotional support. Some nurses, especially nurses from ID-care services, were not involved in EoL discussions, even if they had cared for the child for a long period of time. Some of the nurses had moral or religious objections to carrying out the decisions.
Conclusion: Most nurses were not involved in EoL discussions with parents and physicians in the hospital. Excluding nurses from EoL discussions can cause them moral distress. The involvement of nurses in EoL discussions for children with PIMD should be improved, especially by involving nurses from ID-care services. Because these nurses are usually familiar with the child, they can be valuable sources of information about the child's quality of life.

Additional Metadata
Keywords Carers, End-of-life discussion, Intellectual disability, Moral distress, Qualitative research
Persistent URL dx.doi.org/10.1111/jir.12473, hdl.handle.net/1765/104414
Journal Journal of Intellectual Disability Research
Citation
Zaal-Schuller, I.H, Willems, D.L, Ewals, F.V.P.M, van Goudoever, J.B, & de Vos, M.A. (2018). Involvement of nurses in end-of-life discussions for severely disabled children. Journal of Intellectual Disability Research. doi:10.1111/jir.12473