End-of-Life Decision-Making for People With Intellectual Disability From the Perspective of Nurses

A.M.A. Wagemans*, H.M.J. van Schrojenstein Lantman-de Valk, I.M. Proot, J. Metsemakers, I. Tuffrey-Wijne, L.M.G. Curfs

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


Little is known about the involvement of nurses in the process of making end-of-life decisions for people with intellectual disability (ID). The aim of this study was to clarify this process from the perspective of nurses. This qualitative study involved nine semistructured interviews with nurses working in chronic care, conducted after the deaths of patients with ID in the Netherlands. The interviews were transcribed verbatim and analyzed using Grounded Theory procedures. The core characteristic of the position of the nurses and of the way they supported the patient was Being at the center of communication. Related categories of topics emerging from the interviews were Having a complete picture of the patient, Balancing involvement and distance, Confidence in one's own opinion, and Knowledge about one's own responsibility, all of which were focused on the patient. This focus on the patient with ID might explain why the nurses could make valuable contributions to such an important subject as end-of-life decisions. People with ID themselves were not involved in the decisions. The nurses were not always aware who was ultimately responsible for the end-of-life decisions. Nurses are in a unique position to support the process of end-of-life decision-making. It is important to use their knowledge and give them a more prominent position in this decision-making process. It should be clear to all involved who is ultimately responsible for making the end-of-life decisions.

Original languageEnglish
Pages (from-to)294-302
Number of pages9
JournalJournal of Policy and Practice in Intellectual Disabilities
Issue number4
Publication statusPublished - Dec 2015


  • end-of-life care
  • end-of-life decisions
  • ethics
  • intellectual disability
  • palliative care
  • CARE


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