Perceptions of Life Support and Advance Care Planning During the COVID-19 Pandemic

Abstract

Background The COVID-19 pandemic has presented new challenges surrounding end-of-life planning and has been associated with increased online discussion about life support. Research Question How has online communication about advance care planning (ACP) and specific life-sustaining interventions (LSIs) changed during the pandemic? Study Design and Methods Conversations on Twitter containing references to LSIs (e.g., ‘ECMO’) or ACP (e.g., ‘DNR/DNI’) were collected from January 2019 to May 2021. User account metadata was used to predict user demographic information and classify users as either organizations, individuals, clinicians, or influencers. We compared the number of impressions across these user categories and analyzed the content of tweets using natural language processing models to identify topics of discussion and associated emotional sentiment. Results There were 202,585 unique tweets about LSIs and 67,162 unique tweets about ACP. Users who were younger, men, or influencers were more likely to discuss LSIs online. Tweets about LSIs were associated with more positive emotional sentiment scores than tweets about ACP (LSIs: 0.3, ACP: -0.2; P < 0.001). Among tweets about ACP, most contained personal experiences related to the death of loved ones (27%) or discussed discrimination through DNR orders directed at the elderly and disabled (19%). Personal experiences had the greatest retweet-to-tweet-ratio (4.7), indicating high levels of user engagement. Tweets about discrimination contained the most negative net sentiment score (-0.5). Interpretation The observed increase in tweets regarding LSIs and ACP suggests that Twitter was consistently utilized to discuss treatment modalities and preferences related to intensive care during the pandemic. Future interventions to increase online engagement with ACP may consider leveraging influencers and personal stories. Finally, we identified DNR-related discrimination as a commonly held public fear, which should be further explored as a barrier to ACP completion and can be proactively addressed by clinicians during bedside goals-of-care discussions.

Standardized High-Quality Processes for End-of-Life-Decision Making in the Intensive Care Unit Remain Robust during an Unprecedented New Pandemic—A Single-Center Experience

“…The public awareness on the COVID-19-associated mortality, especially among the elder population, was substantial. As indicated by recent data from social media platforms, the COVID-19 pandemic led to a considerable increase of communication about ICU-specific life-sustaining treatments and advance care planning [ 15 ]. It is unclear whether the public awareness might have triggered potential early discussions of advance care planning.…”

Cutting Through the Noise

“…In CHEST (June 2022), Patel et al 7 use a novel big data approach to measure patient perceptions of ACP through machine learning (ML). By applying natural language processing (NLP) to Twitter metadata, they found that public discussion of ACP and life-sustaining interventions (LSIs) both increased during the early days of the pandemic in spring of 2020 but that ACP messages were viewed less frequently and more negatively than discussions of LSIs.…”

“…Patel et al 7 were able to exploit Twitter metadata to apply ML techniques to Twitter. Historic data on the social media platform retains information about the short-form 280-character messages (“tweets”), including who viewed them, whether the messages were “re-tweeted” by followers, and user demographic characteristics such as geolocation.…”

“…Patel et al 7 analyzed ACP and LSI messaging through a stepwise approach. First, tweets were categorized into the categories of ACP or LSIs based on the content of the tweet.…”

“…Using these techniques, Patel et al 7 identified 67,162 tweets about ACP and 202,585 tweets about LSIs. Tweets from both categories increased significantly after the beginning of the COVID-19 pandemic.…”