Use of a decision aid to help caregivers discuss terminal disease status with a family member with cancer: a randomized controlled trial

J Clin Oncol. 2011 Dec 20;29(36):4811-9. doi: 10.1200/JCO.2011.35.3870. Epub 2011 Nov 21.

Abstract

Purpose: We tested whether a decision aid explaining how to discuss the approach of death with a family member with cancer would help family caregivers decide to discuss a terminal prognosis.

Patients and methods: We randomly assigned caregivers of terminally ill patients with cancer to a group that received a video and a companion workbook that showed either how they can discuss the prognosis with their patient (experimental arm) or how cancer pain can be controlled (control arm). At baseline and 1 month, we evaluated the decision to discuss terminal prognosis as the primary outcome. At 0, 1, 3, and 6 months, we assessed the caregivers' decisional conflict and satisfaction as secondary outcomes using a Decision Conflict Scale (DCS).

Results: We found no difference in changes in the decision to discuss terminal prognosis between the two groups. Conflict (P = .003), uncertainty (P = .019), and value clarity (P = .007) subscale scores and total DCS score (P = .008) improved from baseline to 1 month significantly more in the experimental arm than in the control arm. Over 6 months, the significant between-group differences continued for the conflict (P = .031), uncertainty (P = .014), and value clarity (P = .039) subscale scores and total DCS score (P = .040).

Conclusion: Decision aids can help caregivers, with the aid of trained professionals, to communicate with patients about their terminal illness.

Publication types

  • Randomized Controlled Trial
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Affect
  • Aged
  • Awareness
  • Caregivers*
  • Decision Support Techniques*
  • Family
  • Female
  • Humans
  • Male
  • Middle Aged
  • Neoplasms / mortality
  • Neoplasms / psychology*
  • Prognosis
  • Quality of Life
  • Terminal Care*