In-advance end-of-life discussions and the quality of inpatient end-of-life care: a pilot study in bereaved primary caregivers of advanced cancer patients

Abstract

Advanced cancer care planning is encouraged to achieve individualized care. We hypothesized that in-advance end-of-life (EOL) discussions and establishment of do-not-resuscitate (DNR) status prior to the terminal admission would be associated with better quality of inpatient EOL care. We conducted a post-mortality survey, utilizing the validated Toolkit of Instruments to Measure End-of-Life Care. Primary caregivers (PCGs) of the advanced cancer patients who died at our institution between January 2009 and December 2010 were contacted more than 3 months after the patients' death. The endpoints included overall score for EOL care (0-10; 10 = best care), problem scores of six domains (0-1; 1 = worst problem), and score for supporting family's self-efficacy (knowing what to expect/do during the dying process) (1-3; 3 = greatest support). Of 115 PCGs contacted, 50 agreed to participate (43.5 %). Patients with EOL discussions (n = 20), as compared to those without (n = 29), had higher rating of overall EOL care (9.7 vs. 8.7; p = 0.001): lower problem scores in "informing and promoting shared decision-making" (0.121 vs. 0.239; p = 0.007), "encouraging advanced care planning" (0.033 vs. 0.167; p = 0.010), "focusing on individual" (0.051 vs. 0.186; p = 0.014), "attending to emotional/spiritual needs of family" (0.117 vs. 0.333; p = 0.010), and "providing care coordination" (0.100 vs. 0.198; p = 0.032), and greater support for family's self-efficacy (2.734 vs. 2.310; p < 0.001). No significant differences were found in these outcomes between patients with DNR (n = 19) and those with full code (n = 31) on admission. Advanced cancer patients may receive higher quality of inpatient EOL care if they had in-advance EOL discussions.