Advance care planning impact on caregivers and end-of-life care in advanced cancer

Abstract Background Advance care planning (ACP) may improve outcomes for patients with advanced cancer and their family caregivers, but the optimal approach is not known. This study compared the impact of facilitated vs patient-directed ACP on caregiver psychological symptoms and perceptions of goal-concordant EOL care. Methods Adult patients with advanced solid tumors and their caregivers were recruited from 8 oncology clinics in western Pennsylvania. Participants were randomly assigned to complete facilitated ACP with a trained nurse facilitator or patient-directed ACP using written and web-based tools. Caregivers were followed through bereavement and completed surveys assessing depression and anxiety symptoms (HADS, range 0-21, scores >7 indicative of significant symptoms), PTSD symptoms (IES-R, range 0-88, scores > 24 considered clinically significant), and validated measures of goal-concordant EOL care. Results Among 400 enrolled patients, 272 (68%) had an enrolled caregiver. Caregivers were predominantly female (73%), Caucasian (95%), and were spouses/partners (64%) of the patient with cancer. Among bereaved caregivers (n = 98), those in the facilitated ACP arm reported significantly fewer post-traumatic stress symptoms compared to the patient-directed arm (mean IES-R scores 23.9 vs 31.5, p = 0.01). Both depression and anxiety symptoms remained similar between arms (depression: 5.34 vs 5.87, p = 0.50; anxiety: 6.56 vs 6.72, p = 0.84) and low overall. Caregiver-reported goal-concordant care was higher in the facilitated ACP arm compared to the patient-directed arm (95.8% vs 75.5%, p = 0.01). Conclusion In this randomized trial comparing facilitated vs patient-directed ACP, a facilitated approach was associated with lower post-traumatic stress symptoms among bereaved caregivers and higher rates of goal-concordant EOL care.