title: Issues and needs in end-of-life decision making: an international modified Delphi study.
abstract: BACKGROUND
  end-of-life decision making is an important aspect of end-of-life care that can have a significant impact on the process of dying and patients' comfort in the last days of life.
  
  
  OBJECTIVE
  the aim of our study was to identify issues and considerations in end-of-life decision making, and needs for more evidence among palliative care experts, across countries and professions.
  
  
  METHODS
  90 palliative care experts from nine countries participated in a modified Delphi study. Participants were asked to identify important issues and considerations in end-of-life decision making and to rate the need for more evidence.
  
  
  RESULTS
  experts mentioned 219 issues in end-of-life decision making related to the medical domain, 122 issues related to the patient wishes and 92 related to relatives' wishes, regardless of profession or country (p > 0.05). In accordance, more than 90% of the experts rated the comfort and wishes of the patient and the potential futility of treatment as important considerations in end-of-life decision making, although some variation was present. When asked about issues that are in need of more evidence, 87% mentioned appropriate indications for using sedatives and effects of artificial hydration at the end of life. A total of 83% mentioned adequate communication approaches.
  
  
  CONCLUSIONS
  palliative care experts from different professions in different countries encounter similar issues in end-of-life decision making. Adequate communication about these issues is universally experienced as a challenge, which might benefit from increased knowledge. This shared experience enables and emphasizes the need for more international research.
authors.affiliation: Department of Public Health, Erasmus MC, Rotterdam, the Netherlands. n.raijmakers@erasmusmc.nl
authors.forename: Natasja J H
authors.initials: NJ
authors.lastname: Raijmakers
authors.forename: Lia
authors.initials: L
authors.lastname: van Zuylen
authors.forename: Massimo
authors.initials: M
authors.lastname: Costantini
authors.forename: Augusto
authors.initials: A
authors.lastname: Caraceni
authors.forename: Jean B
authors.initials: JB
authors.lastname: Clark
authors.forename: Gustavo
authors.initials: G
authors.lastname: De Simone
authors.forename: Gunilla
authors.initials: G
authors.lastname: Lundquist
authors.forename: Raymond
authors.initials: R
authors.lastname: Voltz
authors.forename: John E
authors.initials: JE
authors.lastname: Ellershaw
authors.forename: Agnes
authors.initials: A
authors.lastname: van der Heide
mesh_terms: D000328:Adult; D000704:Analysis of Variance; D001291:Attitude of Health Personnel; D003657:Decision Making; D019317:Evidence-Based Medicine; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D017410:Practice Guidelines as Topic; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000379:methods