Issues and needs in end-of-life decision making

An international modified Delphi study

Natasja J H Raijmakers, Lia Van Zuylen, Massimo Costantini, Augusto Caraceni, Jean B. Clark, Gustavo De Simone, Gunilla Lundquist, Raymond Voltz, John E. Ellershaw, Agnes Van Der Heide

Research output: Contribution to journalArticle

25 Citations (Scopus)

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. Aim: 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. Participants: 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.

Original languageEnglish
Pages (from-to)947-953
Number of pages7
JournalPalliative Medicine
Volume26
Issue number7
DOIs
Publication statusPublished - Oct 2012

Fingerprint

Delphi Technique
Decision Making
Palliative Care
Communication
Medical Futility
Terminal Care
Hypnotics and Sedatives

Keywords

  • decision making
  • expert opinion
  • palliative care
  • research priorities
  • terminal care

ASJC Scopus subject areas

  • Medicine(all)
  • Anesthesiology and Pain Medicine

Cite this

Issues and needs in end-of-life decision making : An international modified Delphi study. / Raijmakers, Natasja J H; Van Zuylen, Lia; Costantini, Massimo; Caraceni, Augusto; Clark, Jean B.; De Simone, Gustavo; Lundquist, Gunilla; Voltz, Raymond; Ellershaw, John E.; Van Der Heide, Agnes.

In: Palliative Medicine, Vol. 26, No. 7, 10.2012, p. 947-953.

Research output: Contribution to journalArticle

Raijmakers, NJH, Van Zuylen, L, Costantini, M, Caraceni, A, Clark, JB, De Simone, G, Lundquist, G, Voltz, R, Ellershaw, JE & Van Der Heide, A 2012, 'Issues and needs in end-of-life decision making: An international modified Delphi study', Palliative Medicine, vol. 26, no. 7, pp. 947-953. https://doi.org/10.1177/0269216311423794
Raijmakers, Natasja J H ; Van Zuylen, Lia ; Costantini, Massimo ; Caraceni, Augusto ; Clark, Jean B. ; De Simone, Gustavo ; Lundquist, Gunilla ; Voltz, Raymond ; Ellershaw, John E. ; Van Der Heide, Agnes. / Issues and needs in end-of-life decision making : An international modified Delphi study. In: Palliative Medicine. 2012 ; Vol. 26, No. 7. pp. 947-953.
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