Characteristics of Prognostic Statements During Family Conferences of Critically Ill Children

OBJECTIVES: Discussion of prognosis is an essential component of decision-making family conferences in critical care. We do not know how clinicians convey prognosis to families of critically ill children. We, therefore, aimed to evaluate the frequency of prognostic statements and the message and meaning conveyed through each statement during PICU family conferences. DESIGN: Retrospective, mixed-methods study. SETTING: PICU of a single quaternary medical center. PATIENTS: Critically ill children and their families participating in PICU family conferences of critical medical decision-making. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We analyzed 72 transcripts from audio-recorded PICU family conferences to identify prognostic statements. Descriptive, thematic content analysis was used to elucidate the message and meaning of each prognostic statement. Prognosis was not discussed in 26% (19/72) of family conferences. Of the other (53/72) conferences where prognostic statements were made, 60% (67/112) of statements conveyed a message (i.e., prognostic medical information) and a meaning (i.e., anticipated impact on patient/family). Messages of prognostic statements fell within eight themes: uncertain recovery, delayed recovery, progressive decline, escalation of support, attributable complications, no progress, irreversible, and probability of death. Meanings of prognostic statements fell within six themes: restoration of health, activities of daily living, additional equipment, prolonged care needs, brain dysfunction, and death. Broadly, clinicians discussed prognostic information in three categories: loss of Time (i.e., prolonged care needs), Function (i.e., additional medical equipment), or Cure (i.e., death). CONCLUSIONS: Nearly in half of discussions (32/72, 44%) where families were asked to make critical medical decisions, clinicians did not provide a prognostic statement including a message and meaning. When discussed, prognostic information was conveyed in three categories: loss of time, function, or cure. Providing families context in this framework, particularly in times of uncertainty, may improve the family\u27s ability to make informed, value-driven medical decisions for their child

Evaluating Palliative Care Resources Available to the Public Using the Internet and Social Media.

Background: Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. Aim: To identify resources on the Internet and social media regarding palliative care and evaluate the information conveyed. Design: A cross-sectional study of “palliative care” search results. Setting: Top 10 Google websites, top 10 most viewed YouTube videos, and social media platforms, Facebook and Twitter, were searched. Results: The most popular Google websites were mostly from national organizations promoting palliative care, whose definitions of palliative care consistently mention “quality of life” and “relief from symptoms and stress.” None of the websites mentioned children, and 77% cited palliative care as treatment for cancer with less focus on other diseases. No personal stories were included in Google websites, while 60% of YouTube videos included personal stories. Five main themes were generated from 266 YouTube video comments analyzed. The most common theme was emotionality, of which 91% were positive statements. Facebook and Twitter were mostly used by health-care professionals and not the public. Conclusions: Palliative care resources are mostly positive and consistent with the current definition of palliative care. Major Internet search engines such as Google and YouTube provide valuable insight into information the public receives about palliative care. Future development of Internet resources on palliative care should consider including children and emphasizing palliative care for all life-limiting illnesses. </jats:sec