The DEMentia FACT boxes (DEMFACT) Study: Fact Box decision support tools for the use of antibiotics and artificial hydration in advanced dementia

Dementia is the third most frequent cause of death in Switzerland. At the end-of-life, patients with advanced dementia commonly experience clinical complications such as repeated pneumonia episodes or insufficient fluid intake. Consequently, patients frequently receive antibiotics or artificial hydration, but these interventions are burdensome and have limited benefits at the end-of-life.

Because of the impaired judgment that accompanies advanced dementia, and in the absence of a patient decree, medical decision-making is delegated to legally authorized representatives – mostly relatives or professional guardians. These legally authorized representatives may find themselves confronted with difficult decisions, in particular when information about patients’ treatment preferences or possible treatment effects is missing. This can result in decisional conflicts and subsequent over- or undertreatment. Research suggests that decision aids can help enhance the quality of decisions, leaving relatives more statisfied with and confident about their choice.

A candidate decision support tool, ‘Fact Box’, has originally been developed in the US and was recently introduced in Germany through the Harding Center for Risk Literarcy at the Max Planck Insitute for Human Development. Simply put, these fact boxes present balanced information on the benefits and harms of receiving versus not receiving a treatment in an easily understandable way. Despite their general success, there is no Fact Box specifically tailored to dementia. The DEMFACT project aimed address this gap by developing separate Fact Boxes on the use of antibiotics and artificial hydration in advanced dementia (you can download the Fact Boxes with the link provided on the top right of this page). DEMFACT was a randomized controlled trial conducted in the Swiss-German region of Switzerland and included 64 physicians, 100 relatives of dementia patients, and 68 professional guardians. The objectives were to test whether our newly developed Fact Box decision support tools impacted decisional conflict, knowledge, and preferences about the use of antibiotics and artificial hydration in advanced dementia. The study findings will be presented in a forthcoming publication.

 

Project responsibility:

Division of Psychiatry Research und Psychogeriatric Medicine, University of Zurich:

  • Dr. med. Florian Riese, Managing Principle Investigator

Center for Gerontology, University of Zurich:

  • Prof. Dr. phil. Mike Martin
  • Dr. Stefanie Eicher
  • Dr. Nathan Theill
  • MSc. Andrea Loizeau

Sponsored by (funding programme ‘Research in Palliative Care’):

  • Swiss Academy of Medical Sciences, SAMS
  • Stanley Thomas Johnson Foundation
  • Gottfried and Julia Bangerter-Rhyner-Foundation

Duration of the project:
3/2015 – 3/2018

Contact:
Andrea Loizeau  andrea.loizeau@zfg.uzh.ch