Completion of Advance Directives and Documented Care Preferences During the Coronavirus Disease 2019 (COVID-19) Pandemic

Fewer than one-third of US residents have completed an advance directive (AD) to guide care when seriously ill.¹ Clinician-focused efforts to increase AD completion, such as Medicare payments for advance care planning (ACP), have been ineffective.² In contrast, patient-facing interventions that enable independent completion of ADs show early promise.³ Self-service platforms also reveal changes in demand for ADs and preferences for future care. We sought to quantify changes in patient completion of ADs and expressed preferences during the coronavirus disease 2019 (COVID-19) pandemic by monitoring users of a web-based AD platform from January 2019 to April 2020.

We conducted a prospective cohort study of users of OurCareWishes.org, a free tool designed to guide patients and families through ACP. We evaluated monthly rates of AD completion, number of goal-setting modules completed, and distributions of preferences for care. We designated the pre–COVID-19 period as January 1, 2019, to January 31, 2020 (ie, the date the United States declared a public health emergency), and the COVID-19 period from February 1 to April 30, 2020. There were no special dissemination efforts of the OurCareWishes.org platform during the COVID-19 period. This study was approved by the University of Pennsylvania institutional review board. Informed consent was waived for this minimal risk study. This report follows Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) reporting guidelines for cohort studies.

We used t tests, χ² tests, and Kruskal-Wallis tests to compare patient age, rates of module completion, and ordered goals of care, respectively, before and during COVID-19. We used multivariable logistic regression to calculate estimated probabilities and odds of completing modules in each period, rating certain priorities near end of life as extremely important, and perceiving certain health states as similar to or worse than dying comfortably. All models were adjusted for age. Models assessing AD choices also included self-reported health (ie, good health, some health problems, at least 1 serious health condition, and terminal illness). Analyses were conducted using Stata version 15.1 (StataCorp). Statistical significance was set at P < .05, and all tests were 2-tailed.

During the pre–COVID-19 period, there were a total of 424 users, with a median (interquartile range) of 26 (22-30) monthly new users, 5 (3-6) monthly returning users, and 31 (28-34) monthly total users. During the COVID-19 period, corresponding medians (IQRs) were 133 (71-207), 21 (11-39), and 154 (82-246), respectively. These figures represent a 4.9-fold increase in monthly users in the COVID-19 period compared with the pre–COVID-19 period, with considerable increases from February to April (Figure). Total users in February, March, and April 2020 were 82, 154, and 246, respectively, for a total of 482 users. Individuals using the service in the COVID-19 period were slightly younger than those using it in the pre–COVID-19 period (mean age, 49.3 [95% CI, 47.8-50.9] years vs 51.8 [95% CI, 50.2-53.5] years; P = .03), with better self-reported health (Kruskal-Wallis H, 4.06; P = .04). Of 9 optional modules, completion rates increased during COVID-19 for 5 modules, ie, identifying goals of care (110 [25.9%] vs 201 [41.7%]; P < .001), important end-of-life priorities (101 [23.8%] vs 181 [37.6%]; P < .001), health state ratings (106 [25.0%] vs 198 [41.1%]; P < .001), organ donation (110 [25.9%] vs 186 [38.6%]; P < .001), and wishes for one’s final days (54 [12.7%] vs 109 [22.6%]; P < .001).

Patients’ goals of care and ratings of end-of-life priorities were similar between periods (Table). The odds of rating 4 of 10 health states (ie, constant confusion, requiring a feeding tube, incontinence, and needing full-time care) as similar to or worse than dying comfortably increased in the COVID-19 period compared with the pre–COVID-19 period (constant confusion: 93.4% [95% CI, 89.9%-97.0%] vs 81.9% (95% CI, 74.4%-89.4%]; P = .03; requiring a feeding tube: 88.7% [95% CI, 84.2%-93.1%] vs 75.6% [95% CI, 67.0%-84.2%]; P = .01; incontinence: 87.3% [95% CI, 82.6%-92.0%] vs 73.7% [64.9%-82.6%]); P = .01; needing full time care: 93.9% [95% CI, 90.6%-97.2%] vs 83.6% [76.2%-91.0%]; P = .01) (Table), whereas corresponding odds did not decrease for any health states.

This study reveals a 4.9-fold increase in online AD completion as well as more comprehensive completion since the onset of the COVID-19 pandemic in the absence of contemporaneous efforts to increase uptake of the ACP platform. Distributions of preferences were largely unchanged. Study limitations include unmeasured trends that may affect AD demand. Furthermore, while the platform is publicly available, it is largely used by patients within a single health system. The increased demand for AD documentation might be explained by an increased sense of AD importance owing to COVID-19–induced hospital visitation restrictions,⁴ calls for clinicians to promote ACP,⁵ or because COVID-19 has provided new motivation for patients who have long wanted to complete ADs but previously failed to do so.⁶

Accepted for Publication: June 11, 2020.

Published: July 20, 2020. doi:10.1001/jamanetworkopen.2020.15762

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2020 Auriemma CL et al. JAMA Network Open.

Corresponding Author: Catherine L. Auriemma, MD, Palliative and Advanced Illness Research (PAIR) Center, University of Pennsylvania, 300 Blockley Hall, 423 Guardian Drive, Philadelphia, PA 19103 (Catherine.auriemma@pennmedicine.upenn.edu).

Author Contributions: Dr Auriemma had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Halpern, J. M. Asch, Van Der Tuyn, D. A. Asch.

Acquisition, analysis, or interpretation of data: Auriemma, J. M. Asch, Van Der Tuyn.

Drafting of the manuscript: Auriemma, Halpern, Van Der Tuyn, D. A. Asch.

Critical revision of the manuscript for important intellectual content: Auriemma, Halpern, J. M. Asch, D. A. Asch.

Statistical analysis: Auriemma, Halpern, J. M. Asch.

Administrative, technical, or material support: Van Der Tuyn.

Supervision: Halpern.

Conflict of Interest Disclosures: None reported.

Funding/Support: Financial support for this study was provided by The Palliative and Advanced Illness Research (PAIR) Center and the Center for Health Care Innovation, both at the University of Pennsylvania. Dr Auriemma is supported by training grant 5T32HL098054-09 from the National Heart, Lung, and Blood Institute.

Role of the Funder/Sponsor: The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.