Executive Summary: Society of Critical Care Medicine Guidelines on Family-Centered Care for Adult ICUs

Providing family-centered care in ICUs is essential for clinical excellence. Family support and engagement influence patients’ outcomes (1,2), and ICU experiences have lasting impacts on family members themselves (3). The Society of Critical Care Medicine (SCCM) has released two prior sets of guidelines for family support (4,5), the most recent in 2017. Subsequently, the global COVID-19 pandemic had profoundly negative effects on ICU family presence (6) and clinician burnout (7). In this post-pandemic era, this third iteration of the guidelines seeks to review an updated evidence base focused on family support and engagement, provide clear recommendations, and spotlight optimal family-centered care practices at a time when they have never been more important. Whereas the scope of the 2017 guidelines covered family-centered care in adult, pediatric, and neonatal ICUs and resulted in 24 statements, our process for development of these guidelines focused only on adult ICUs and was limited to 15 Population, Intervention, Comparison, and Outcome (PICO) questions per SCCM policy at the time when the proposal for a guideline update was submitted. Our process resulted in 17 statements: two recommendations with major changes from 2017 (Table 1), five new recommendations and one new best practice statement (Table 2), and eight recommendations and one best practice statement that are similar to recommendations from 2017. The accompanying full article describes our detailed methodology and rationale for each recommendation and statement. In this brief executive summary, we summarize the rationale for the two recommendations with major changes and discuss key points regarding the new recommendations and statement, as well as those that were essentially retained from 2017. Of note, four statements from the 2017 guidelines that pertained to adult ICUs were not readdressed directly in these current guidelines. Three of four of these (e.g., palliative care consultations, ethics consultations, and ventilator withdrawal protocols) will likely be updated in upcoming SCCM end-of-life care guidelines. The fourth statement was a recommendation for hospitals to implement formal policies to promote family-centered care across all types of ICUs. TABLE 1. - Recommendations With Major Changes Recommendation Change From 2017 Guidelines We recommend liberalized ICU family presence policies as the default practice in ICUs (strong recommendation, low certainty evidence). Upgraded from weak suggestion to strong recommendation We make no suggestion for or against any specific decision-making support tools for families of ICU patients (conditional recommendation, low certainty evidence). Downgraded to no suggestion from weak suggestion in favor of the intervention TABLE 2. - New Recommendations and Statements Recommendation Notes Regarding 2017 Guidelines We suggest offering family participation in bedside care (conditional recommendation, very low certainty evidence). Only addressed families of neonates We suggest identifying and supporting the mental health and psychologic needs of families of ICU patients (conditional recommendation, low certainty evidence). There are not sufficient data to formally recommend a specific intervention. Interventions described in the literature include meetings with clinicians, psychoeducation, and coping skills training. Only addressed mothers of preterm babies We suggest providing bereavement support to families of patients who have died in the ICU (conditional recommendation, low certainty evidence). There are not sufficient data to formally recommend a specific intervention. Interventions described in the literature include brochures or booklets; condolence letters; and meetings with specific care teams, such as palliative care, psychologists, or specially trained nurses. Only addressed in separate Population, Intervention, Comparison, and Outcome questions evaluating general written materials for families and palliative care consultation We make no suggestion for or against specific tools relevant to family-centered ICU care designed for clinical teams (conditional recommendation, low certainty evidence). Not addressed We suggest structured programs to support clinicians in promoting the delivery of family-centered ICU care (conditional recommendation, low certainty evidence). Programs described in the literature have typically been multifaceted quality-improvement programs focused on family outcomes. There are not sufficient data to formally recommend a specific program, particularly with regards to clinician burnout, stress, and psychologic outcomes. Not addressed We recommend that ICUs implement practices to systematically identify and reduce barriers so as to promote equitable critical care delivery for patients’ families (best practice statement). Barriers described in the literature include language, varied cultural understandings and beliefs, and varied expectations around health and critical care delivery. Not addressed RECOMMENDATIONS WITH MAJOR CHANGES FROM 2017 Changed Recommendation 1 We recommend liberalized ICU family presence policies as the default practice in ICUs (strong recommendation, low certainty evidence). Remark. Compared with the 2017 guidelines, we upgraded this recommendation from “conditional” (i.e., “weak”) to “strong.” Rationale. In addition to 17 observational and quasi-experimental studies, our panel identified eight randomized controlled trials (RCTs) (8–15), which varied greatly in terms of how “liberalized” vs. “restrictive” family presence were defined and operationalized. The largest RCT was the Brazilian ICU Visits Study (11), a cluster-RCT of over 1000 family members that found no difference between liberalized vs. restrictive groups with respect to a primary outcome of patient delirium, but which found better family anxiety and depression and family satisfaction in the liberalized group as secondary outcomes. In our meta-analyses, we found that liberalized policies demonstrated increased family satisfaction, possibly increased patient satisfaction, and reduced family and patient symptoms of anxiety and depression, measured using a variety of validated instruments. We did not identify any undesirable effects, although all included studies were conducted prior to the COVID-19 pandemic. The pandemic brought profound challenges; we acknowledge that policies to restrict ICU family presence may be justified if presence has a disproportionately negative impact upon patient care, staff workload, or burnout (16). However, our panel viewed this recommendation as one of particular importance, given the core impact of family presence on other aspects of family engagement; the humanistic importance of decreasing family anxiety and depression and improving family satisfaction; and the increased availability of RCT data compared with the last iteration of these guidelines (5). Despite the need for future study, particularly with regards to pandemic-era outcomes (17), our panel voted in favor of a recommendation that specifically stated liberalized family presence as the “default” option in ICUs, as opposed to the default being more restrictive. While the degree of “liberalized” family presence in policies may be in question, defaulting to more flexible family presence hours, whenever possible from a safety standpoint, promotes equity in allowing families more options for being in the ICU and additionally possibly promotes clinician-family trust in decision-making (18). Changed Recommendation 2 We make no suggestion for or against any specific decision-making support tools for families of ICU patients (conditional recommendation, low certainty evidence). Remarks. The term “decision support tools” refers to paper-based or multimedia decision aids that supplement family meetings, typically regarding goals-of-care discussions. These aids provide families with information regarding patient prognosis and treatment options, as well as elicit family values. The 2017 guidelines suggested that decision support tools be implemented when possible (5), primarily based on a single quasi-experimental study of a decision aid for surrogates of patients with prolonged mechanical ventilation (19). Rationale. Our recommendation is informed by seven RCTs (20–26) and several non-RCTs, nearly all of which examined aids focused on patient prognosis and goals-of-care decision-making. While a French RCT enrolling 90 family members making end-of-life decisions did demonstrate lower proportions of post-traumatic stress disorder (PTSD) and depression at 3 months among those participants randomized to an informational pamphlet about decision-making (24), there was no overall effect of decision support tools on standardized scores of anxiety, depression, and PTSD in our RCT meta-analysis. An RCT randomizing 416 surrogates of prolonged mechanical ventilation patients to a web-based decision aid about treatment options did demonstrate a reduction in decisional conflict in its intervention arm as a secondary outcome (20), but no overall effect of intervention on decisional conflict was seen in our meta-analysis. Our meta-analyses did not reveal any differences in effects regarding other family (anxiety, comprehension), patient (ICU length of stay, mortality, discharge disposition), clinician (quality of communication, nursing distress), and relational (family-clinician prognostic concordance) outcomes that current studies variably included. We thus judged the current evidence for both desirable and undesirable effects to be of trivial magnitude, with low certainty. In forming this recommendation, we noted that relevant studies found that family members and clinicians viewed decision aids as acceptable and feasible for use. However, selecting study outcomes that demonstrate a complete picture of a decision aid’s effects is challenging, since there is uncertainty about the importance of existing available outcomes measures and of potentially unmeasured outcomes. NEW RECOMMENDATIONS AND STATEMENTS Our five new recommendations (all conditional) and one new best practice statement are summarized in Table 2, with detailed rationales in the accompanying full article. These include conditional recommendations for offering family participation in bedside care and supporting the psychologic needs of families of adult ICU patients. For these two topics, the 2017 guidelines specifically focused on families of neonatal ICU patients. We also specifically suggest providing bereavement support to families of patients who have died in the ICU, a topic that the 2017 guidelines did not specifically include. However, we note that certain specific methods of bereavement support were evaluated in separate PICO questions in the 2017 guidelines, regarding written materials for families and palliative care involvement. For the current guidelines, we investigated specific tools relevant to family-centered ICU care designed for clinical teams, such as checklists and protocols designed to direct the clinical team’s attention toward family-centered communication (27,28), shared decision-making (29,30), or patient and family palliative care needs (31). Because our meta-analyses did not demonstrate intervention effects on family satisfaction, family psychologic symptoms, patient length of stay, or patient mortality, we made a conditional recommendation neither for or against such tools. We suggest the creation of structured programs to support “clinicians” in promoting the delivery of family-centered ICU care. In the wake of the COVID-19 pandemic, there is a critical need for developing programs that support ICU clinicians directly in their efforts to provide compassionate and empathetic care to patients’ families, focused on supporting clinicians’ resilience and mental health (32,33). Finally, we issued a new best practice statement that ICUs implement practices to systematically identify and reduce barriers so as to promote equitable critical care delivery for patients’ families, a statement that hearkens back to the first iteration of these guidelines (4). RECOMMENDATIONS AND STATEMENTS SIMILAR TO 2017 The eight conditional recommendations and one best practice statement similar in content to 2017 all have detailed rationales in the full article. These include offering families the option of being present on ICU rounds, offering family presence during resuscitation, providing family educational programs, providing ICU diaries, and providing communication skills training to clinicians. For this last point, we included a separate conditional recommendation that critical care trainees participate in communication training that uses simulation and/or standardized actors for a “high-fidelity” experience. The 2017 guidelines suggested offering spiritual support specifically from a spiritual advisor or chaplain. We also suggest supporting the spiritual needs of families of ICU patients but held off on formally recommending any specific intervention, based on low certainty evidence. The 2017 guidelines also issued specific suggestions with regards to implementing noise reduction, private rooms, and family sleep surfaces. Our best practice statement on this topic is a more general recommendation for use of family support zones and incorporation of supportive ICU design features for family needs, based on Grading of Recommendations Assessment, Development and Evaluation guidance for indirect evidence. Similar to 2017, we suggest using standardized approaches for interdisciplinary family conferences and facilitation of communication in ICUs, including clinicians’ use of the Value family statements, Acknowledge emotions, Listen, Understand the patient as a person, Elicit Questions mnemonic. We did not include separate statements as the 2017 guidelines did on nurses’ and social workers’ involvement in family conferences and communication facilitation. We emphasize that their leadership roles in ICU communication are clear and that this established clarity allowed us to use our strict PICO question limit elsewhere during our development process.

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