title: End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives.
abstract: BACKGROUND
  Not much is known about the process of end-of-life decision-making for people with intellectual disabilities.
  
  
  OBJECTIVE
  To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives.
  
  
  METHODS
  A qualitative study based on semi-structured interviews, recorded digitally and transcribed verbatim. Data were analysed using Grounded Theory procedures.
  
  
  METHODS
  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.
authors.affiliation: Maasveld, Koraalgroep, Maastricht, the Netherlands. ama.wagemans@maastrichtuniversity.nl
authors.forename: Annemieke M A
authors.initials: AM
authors.lastname: Wagemans
authors.forename: Henny M J
authors.initials: HM
authors.lastname: Van Schrojenstein Lantman-de Valk
authors.forename: Ireen M
authors.initials: IM
authors.lastname: Proot
authors.forename: Job
authors.initials: J
authors.lastname: Metsemakers
authors.forename: Irene
authors.initials: I
authors.lastname: Tuffrey-Wijne
authors.forename: Leopold M G
authors.initials: LM
authors.lastname: Curfs
mesh_terms: D000328:Adult; D000368:Aged; D017281:Cost of Illness; D003657:Decision Making / Q000941:ethics*; D006801:Humans; D008607:Intellectual Disability; D008875:Middle Aged; D010166:Palliative Care; D010344:Patient Advocacy / Q000193:education / Q000523:psychology*; D036301:Qualitative Research; D011788:Quality of Life
keywords: Palliative care; end-of-life decisions; ethics; intellectual disability; patient representatives; quality of life; shared decision-making