End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives

Annemieke M. A. Wagemans*, Henny M. J. Van Schrojenstein Lantman-de Valk, Ireen M. Proot, Job Metsemakers, Irene Tuffrey-Wijne, Leopold M. G. Curfs

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


Background: Not much is known about the process of end-of-life decision-making for people with intellectual disabilities. Aim: To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives. Design: A qualitative study based on semi-structured interviews, recorded digitally and transcribed verbatim. Data were analysed using Grounded Theory procedures. Participants: We interviewed 16 patient representatives after the deaths of 10 people with intellectual disabilities in the Netherlands. Results: The core category Deciding for someone else' describes the context in which patient representatives took end-of-life decisions. The patient representatives felt highly responsible for the outcomes. They had not involved the patients in the end-of-life decision-making process, nor any professionals other than the doctor. The categories of Motives' and Support' were connected to the core category of Deciding for someone else'. Motives' refers to the patient representatives' ideas about quality of life, prevention from suffering, patients who cannot understand the burden of interventions and emotional reasons reported by patient representatives. Support' refers to the support that patient representatives wanted the doctors to give to them in the decision-making process. Conclusions: From the perspective of the patient representatives, the process of end-of-life decision-making can be improved by ensuring clear roles and an explicit description of the tasks and responsibilities of all participants. Regular discussion between everyone involved including people with intellectual disabilities themselves can improve knowledge about each other's motives for end-of-decisions and can clarify expectations towards each other.
Original languageEnglish
Pages (from-to)765-771
JournalPalliative Medicine
Issue number8
Publication statusPublished - Sept 2013


  • Palliative care
  • intellectual disability
  • end-of-life decisions
  • ethics
  • shared decision-making
  • patient representatives
  • quality of life

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