The COVID-19 pandemic has claimed over half a million lives worldwide. In the U.S., it is estimated that one in five adults who develops symptomatic COVID-19 will wind up in a hospital, and one in 20 may develop respiratory failure requiring a mechanical ventilator. For these critically ill patients, death rates range from 20-50% and increasingly, we are learning that survivors may face lasting symptoms and functional deficits.

Faced with this frightening prognosis, some patients might choose to forgo aggressive medical care. Advance care planning (ACP) and advance directives allow patients to make these preferences known to their families and care teams. In a study published today in JAMA Network Open, we examined changes in demand for ACP before and during the COVID-19 pandemic.

Our Care Wishes (OCW) is a free, online ACP platform developed by the Penn Center for Health Care Innovation. Designed with input from patients and caregivers, OCW removes many barriers to completing conventional advance directives. There’s no need to wait for an appointment with a physician or pay expensive fees to an attorney. The site guides patients and families, on their own time, through ACP and allows them to complete, share, and access their care preferences efficiently and from anywhere in the world.

The self-service nature of platforms like OCW also creates novel opportunities for researchers to examine changes in demand for advance directives and in the preferences expressed for future care. Harnessing data from the OCW platform, we found that when the pandemic struck, people filled out advance directives at five times the rate they had before (Figure). Advance directives in the COVID-19 period were also completed in more depth compared to the pre-COVID-19 period, with users completing a greater number of optional goal-setting modules on the website. The content of expressed wishes for goals of care and important priorities near the end of life were largely unchanged across time periods.

Figure. Online advance directive completion, by month.  Source: Auriemma et al., JAMA Network Open, 2020.

While our study cannot say why there was such a large increase in ACP demand, the rise in completion of online advance directives during the COVID-19 period was observed without any concerted effort to increase uptake of the platform on the part of the health system or the website. We hypothesize that strict hospital visitation restrictions may have increased the perceived importance of advance directives to communicate wishes. Alternatively, patients could be responding to clinicians’ calls to promote ACP, or perhaps, COVID-19 might have provided the final nudge for individuals who had long wanted to completed advance directives.

The observed 5-fold increase in completion of online advance directives seen during the COVID-19 pandemic is far greater than any increase seen with previous clinician-focused efforts to encourage advance directive completion, such as Medicare payments for ACP. For clinicians, health systems, and policymakers that may wish to increase patient participation in ACP, these findings demonstrate the power of providing access to a free, online ACP platform.

The study, “Completion of Advance Directives and Documented Care Preferences During the Coronavirus Disease 2019 (COVID-19) Pandemic” was published in JAMA Network Open on July 20, 2020. Authors include Catherine L. Auriemma, Scott D. Halpern, Jeremy M. Asch, Matthew Van Der Tuyn, and David A. Asch.