Issues and needs in end-of-life decision making: an international modified Delphi study

Palliat Med. 2012 Oct;26(7):947-53. doi: 10.1177/0269216311423794. Epub 2011 Oct 3.

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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Analysis of Variance
  • Attitude of Health Personnel
  • Decision Making*
  • Evidence-Based Medicine
  • Female
  • Health Services Needs and Demand
  • Humans
  • Male
  • Middle Aged
  • Practice Guidelines as Topic
  • Surveys and Questionnaires
  • Terminal Care* / methods