How can patient portals support caregivers providing end-of-life care?: a mixed-methods study

Abstract Patient portal design is rarely centered around patient caregivers—family members, friends and other designated persons who may access these digital tools for the patient’s health needs. This study examines: (a) portal features used by caregivers during their loved-one’s end-of-life; and (b) caregiver perceptions regarding the use of patient portals for caregiving near the end-of-life.Using sequential mixed-methods, we conducted a retrospective cohort analysis of caregiver proxy (N=137) use from 2016-2019 during their loved-ones’ (N=5,284) last 12 months of life and interviews with (N=31) 16-former and 15-current caregiver proxies. Caregiver proxy portal use in this population was lower than expected; however, caregivers who used the portal as proxies found value in tools for caregiving near the end-of-life. To leverage the patient portal to better support caregivers, future strategies should target caregiver portal adoption, awareness of beneficial portal tools, and the addition of caregiver specific resources and education.