Factors Affecting Patients' Preferences for and Actual Discussions About End-of-Life Care

Abstract

Context: Discussions about end-of-life care are often difficult for patients and clinicians, and inadequate communication poses a barrier to patients receiving the care they desire.

Objectives: To understand factors that facilitate end-of-life care discussions that guide interventions to improve care.

Methods: We examined baseline data from an ongoing randomized trial to evaluate associations between patients' self-reported desire for, and occurrence of, discussions about end-of-life care and factors influencing these discussions. Factors included emotional symptoms and barriers and facilitators to discussions. The sample included patients with serious illness (n = 473) and their primary or specialty care clinicians (n = 128). Regression analyses were adjusted for confounders and clustered patients under clinicians.

Results: Patients who endorsed each of three barriers to discussions were less likely to have had a discussion with their clinician (P-values ranging from <0.001 to 0.046). One facilitator (having had family/friends who died) was associated with past discussions (P = 0.037), and two facilitators were associated with wanting future discussion (P < 0.001): 1) concerns about future quality of life, 2) worries about being a burden on friends/family. Depression and anxiety were not associated with past discussions. However, patients with more anxiety were more likely to want future discussions (P = 0.001), as were patients with more depressive symptoms who had had discussions in the past (P < 0.001).

Conclusion: The occurrence of, and desire for, patient-clinician communication about end-of-life care is associated with patient factors including communication barriers and facilitators and symptoms of depression and anxiety. Understanding these factors may facilitate design of effective communication interventions.

Trial registration: ClinicalTrials.gov NCT01933789.

Keywords: Palliative care; barriers; communication; depression; end-of-life care; facilitators.

Conflict of interest statement

The authors declare no conflicts of interest.

Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Figures

Fig. 1

Proportion of patients who had already had a discussion and proportion desiring future (first or additional) discussion with their clinician about end-of-life care