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, OPCARE9

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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)947-53
Number of pages7
JournalPalliative Medicine
Issue number7
Publication statusPublished - Oct 2012
Externally publishedYes

Cite this

Raijmakers, N. J. H., van Zuylen, L., Costantini, M., Caraceni, A., Clark, J. B., De Simone, G., ... OPCARE9 (2012). Issues and needs in end-of-life decision making: an international modified Delphi study. Palliative Medicine, 26(7), 947-53.