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Keywords:

  • decision aid;
  • end-of-life;
  • palliative care;
  • randomized trial

Abstract

Background  Patients nearing the end of their lives face an array of difficult decisions.

Objective  This study was designed to assess the feasibility and acceptability of a decision aid (DA) designed for patients facing advanced or terminal illness.

Design  We conducted a pilot randomized clinical trial of Health Dialog’s Looking Ahead: choices for medical care when you’re seriously ill DA (booklet and DVD) applied to patients on a hospital-based palliative care (PC) service.

Setting  University of Colorado Hospital – December 2009 and May 2010.

Participants  All adult, English-speaking patients or their decision makers were potentially eligible. Patients were not approached if they were in isolation, did not speak English or if any provider felt that they were not appropriate because of issues such as family conflict or actively dying.

Intervention  All participants received a standard PC consultation. Participants in the intervention arm also received a copy of the DA.

Measurements  Primary outcomes included decision conflict and knowledge. Participants in the intervention arm also completed an acceptability questionnaire and qualitative exit interviews.

Results  Of the 239 patients or decision makers, 51(21%) enrolled in the trial. The DA had no significant effect on decision conflict or knowledge. Exit interviews indicated it was acceptable and empowering, although they wished they had access to the DA earlier.

Conclusions  While the DA was acceptable, feasibility was limited by late-life illness challenges. Future trials of this DA should be performed on patients earlier in their illness trajectory and should include additional outcome measures such as self-efficacy and confidence.