Perceptions of Life Support and Advance Care Planning During the COVID-19 Pandemic: A Global Study of Twitter Users

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 (eg, “ECMO”) or ACP (eg, “DNR/DNI”) were collected between January 2019 and May 2021. User account metadata were used to predict user demographic information and to classify users as organizations, individuals, clinicians, or influencers. The number of impressions was compared across these user categories and the content of tweets analyzed by 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, male, 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 < .001). Among tweets about ACP, most contained personal experiences related to the death of loved ones (27%) or discussed discrimination through do-not-resuscitate 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 used 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 do-not-resuscitate-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.