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

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