A brief intervention for preparing ICU families to be proxies: A phase I study

Abstract

BackgroundFamily members of critically ill patients report high levels of conflict with clinicians, have poor understanding of prognosis, struggle to make decisions, and experience substantial symptoms of anxiety, depression, and post-traumatic stress regardless of patient survival status. Efficient interventions are needed to prepare these families to act as patient proxies.ObjectivesTo assess a brief “patient activation” intervention designed to set expectations and prepare families of adult intensive care unit (ICU) patients to communicate effectively with the clinical team.DesignPhase I study of acceptability and immediate side effects.Setting and participants122 healthcare proxies of 111 consecutive patients with a stay of ≥24 hours in the Johns Hopkins Hospital Medical ICU (MICU), in Baltimore, Maryland.InterventionReading aloud to proxies from a booklet (Flesch-Kincard reading grade level 3.8) designed with multidisciplinary input including from former MICU proxies.ResultsEnrolled proxies had a median age of 51 years old with 83 (68%) female, and 55 (45%) African-American. MICU mortality was 18%, and 37 patients (33%) died in hospital or were discharged to hospice. Among proxies 98% (95% CI: 94% - 100%) agreed or strongly agreed that the intervention was appropriate, 98% (95% CI: 92% - 99%) agreed or strongly agreed that it is important for families to know the information in the booklet, and 54 (44%, 95% CI 35%– 54%) agreed or strongly agreed that parts of the booklet are upsetting. Upset vs. non-upset proxies were not statistically or substantially different in terms of age, sex, education level, race, relation to the patient, or perceived decision-making authority.ConclusionsThis patient activation intervention was acceptable and important to nearly all proxies. Frequently, the intervention was simultaneously rated as both acceptable/important and upsetting. Proxies who rated the intervention as upsetting were not identifiable based on readily available proxy or patient characteristics.

Family Outcomes and Perceptions of End-of-Life Care in the Intensive Care Unit: A Mixed-Methods Review

“…Quantitative evidence was retrieved and analyzed from 33 quantitative research papers and 2 mixed-methodology research papers. There were specific end-of-life interventions identified in 11 quantitative research papers 32 -34,52 -59 and 1 mixed-methodology research paper. 47 Of 12 studies with specific interventions, 50% of studies were prospective studies, 75% were conducted in a single center, and 66.6% occurred in United States.…”

“…32 Seven qualitative studies identified the family members’ distressing emotions during end of life in the ICU, but only 3 interventions helped in shifting care from curative to EOLC: (1) a needs-targeted smartphone App, (2) a brief “surrogate activation,” and (3) a multicomponent family support. 34,53,59…”

More than one in three proxies do not know their loved one’s current code status: An observational study in a Maryland ICU

“…We did not interview patients because this study was embedded within a larger study specifically interested in medical proxies. [40] However proxies for ICU patients are very frequently asked to make decisions [9] since most ICU patients lack decisional capacity at some point during their ICU stay, and the vast majority of end-of-life decisions are made by proxies. [8,41,42] Therefore, the patient’s current code status and preferences previously expressed to ICU clinicians should be disclosed to proxies unless the patient has specifically requested otherwise.…”

Inter-Rater Agreement of Intensivists Evaluating the Goal Concordance of Preference-Sensitive ICU Interventions

“…Instead, we used data on patient goals and preferences for the use of life-sustaining treatments collected as part of a study conducted in the JHH medical ICU. 17 In this previous study, ICU proxies were asked about the patient’s goals using a 7-item, multiple-choice question with previously validated response options. 18–20 Proxies were also asked a 5-item multiple choice question about limitations in the use of life support preferred by their loved ones avoiding medical terminology.…”