International review of national-level guidelines on end-of-life care with focus on the withholding and withdrawing of artificial nutrition and hydration

Abstract

Aim: The purpose of the present study was to collate examples of end-of-life care guidelines from various counties, examine their contents, and gain an overall picture of how end-of-life care guidance is offered to physicians and care providers internationally.

Methods: In this study, eight researchers worked independently to source and examine national-level end-of-life care guidelines from different countries and regions. Data collected by each researcher were gathered into a unified table. The items in the table included basic information (publisher, year, URL etc.) and more specific items, such as the presence/absence of legal information and family's role in decision-making. These data were then used to identify trends, and examine the mechanics and delivery of guidance on this topic.

Results: A total of 54 guidelines were included in the study. All the guidelines were published between 2000 and 2016, and 60% (n = 33) were published after 2012. The length of the guidelines varied from two to 487 pages (median 38 pages), and had different target audiences - both lay and professional. A total of 38 (70%) of the guidelines included information about the relevant laws and legal issues, 47 (87%) offered advice on withholding and withdrawing treatment, 46 (85%) discussed the family's role in decision-making and 46 (85%) emphasized the teamwork aspect of care.

Conclusions: The present findings show that end-of-life care guidelines are generally made reactively in response to the trend toward patient-centered care, and that to create effective guidelines and implement them requires multilevel cooperation between governmental bodies, healthcare teams, and patients and their families. Geriatr Gerontol Int 2019; 19: 847-853.

Keywords: artificial nutrition and hydration; decision-making; end-of-life care; guidelines; withholding and withdrawing treatment.