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Family-Centered Care in the ICU: Strength in Numbers*

Mount, Cristin A. MD, FACP; Colombo, Christopher J. MD, MA, FCCM

doi: 10.1097/CCM.0000000000004051
Editor's Choice

Pulmonary, Critical Care and Sleep Medicine Service, Department of Medicine, Madigan Army Medical Center, Tacoma, WA

*See also p. 1692.

The views expressed are those of the authors and do not reflect the official policy of the Department of the Army, the Department of Defense, or the U.S. Government.

The authors have disclosed that they do not have any potential conflicts of interest.

In the ICU, it is easy to allow our focus to narrow to a very specific set of inputs; pumps, ventilators, machines, monitors, the patient lying in an ICU bed. In recent years, it has become increasingly obvious that we need to broaden our vision beyond our traditional multi-professional team members, various waveforms and data points, and include family input into a shared decision-making model. Family-centered care comprises the “F” in the ABCDEF bundle, which calls for family members and surrogate decision-makers to serve as active participants in care planning and decision-making (1). Not only are contributions to patient care of concern, but the impact of critical illness on family members with respect to post-ICU stress, depression and anxiety are also well described (2). Most experts agree that several domains of family-centered care are important: family presence in the ICU, team communication with family members, allowing family members to participate in direct care, support systems outside of the primary ICU team and attention to the ICU environment (3–8). Although most of us agree that family-centered care is important, literature supporting specific outcomes tends to be limited to observational studies, individual unit performance improvement initiatives and meta-analysis or reviews focused on specific domains (8,9). In fact, in the Society of Critical Care Medicine’s (SCCM) 2017 Guidelines for Family-Centered Care, the authors clearly state that the recommendations are weak given the lack of strong, supporting evidenced-based literature (10). Other areas of ICU practice fit nicely into algorithms and bundles. There are start times, stop times, check-backs, verification and validation of data and outcomes using objective measures. Everyone can get behind objective measures, which is why we have consensus definitions for sepsis or acute respiratory distress syndrome, and also management algorithms for the same that we, as a clinical community, generally agree upon. Not so for family-centered care which, by nature, delves heavily into subjective gray zones. This discomfort with “soft” endpoints and interventions impedes not only implementation but research into these vital areas of critical care practice.

In this issue of Critical Care Medicine, Kleinpell et al (11) report on a collaborative effort to bring structure and framework to family-centered care initiatives across ICUs in the United States. Supported by Patient-Centered Outcome Research Institute funds Managed by the SCCM, the authors established a collaborative for 63 adult and PICU teams from academic and community hospitals in 34 of 50 states across the United States. Their goal was to provide coaching, support, and networking opportunities while allowing each team to determine what project to implement based on their own unit’s or hospital’s needs. The collaborative used standard measurements to survey family and clinician satisfaction before and after project implementation. Projects were grouped by domain and partnerships among teams promoting the same type of improvement work were created. The three most common domains chosen were Family Care Conferences, Patient and Family Diaries, and Family-Centered Rounds (Table 1 in [11]). Echoing an important design in SCCM’s 2017 Guidelines, the collaborative also sought planning and implementation insight from a nine member patient and family advisory group. Teams were gathered for an initial “kick-off” and training event and were required to participate in scheduled calls, list-serve communication and reporting assignments for the duration of the project. Overall, 2,530 and 3,999 family member and clinician surveys were completed, demonstrating statistically significant increases in overall family satisfaction, perceptions of quality of care, and perceptions of coordination of care. Families were also statistically significantly satisfied with decision-making and feelings of having control over their loved one. Clinicians reported increased opportunities for families to participate on rounds and participate in interdisciplinary meetings to plan care, increased perceptions of families as integral members of the healthcare team, increased perception that families are not viewed as visitors but are welcome to be with the patient. Teams also found the collaborative experience to be exceedingly beneficial. Most of these results were not surprising, as the available literature on family-centered care generally reflects the same satisfaction on the part of families and clinicians (5,8,12), although not with the same number of participants.

The authors also collected information about successful facilitating strategies and barriers to implementation and success. Success required a highly motivated “champion” who was able to secure buy-in from ICU staff, a dyad of physician and nurse team sponsors, senior leadership support, and good timing. Despite the significant amount of support, training, framework, and structure the collaborative provided, when each team set out to implement their project in their own ICU, they ran into the same barriers that many of us experience when trying to introduce a new program to our ICUs. Common barriers included conflicting initiatives, lack of physician buy-in, perception that the improvement represented an increased workload burden, lack of staff awareness and inability to promote the culture change needed to sustain the project after study completion.

The study was limited by an inability to include all teams who applied to be part of the collaborative and difference in project start times due to variation in institutional review board approval at each participating site. Usually, variability of the protocol or study participants from location to location is seen as a limitation in multi-centered studies; in the study by Kleinpell et al (11) naturally occurring variability is actually a strength. Given the weak literature supporting Family-Centered Care in the ICU, mostly secondary to very small projects done at individual unit levels, the authors brilliantly addressed these two central issues: as the intervention deals solely with nonobjective improvements, it was critical for each site to select and design their own project, and as individual unit projects are generally not applicable outside of a very small cohort of like institutions, providing a framework and structure for each team, and using standardized measurement tools ensured the data could be pooled and generalized across the collaborative.

Perhaps more importantly than demonstrating that Family-Centered Care initiatives improve satisfaction for families and clinicians, is that the design of the study by Kleinpell et al (11) demonstrates that in many cases, just doing something to incorporate families into your ICU practice can be impactful. As Gerritsen et al (3) note in their review of family-centered care in the ICU, it is impossible for any ICU to implement all 23 recommendations supported in the 2017 Guidelines (10). Too often, we feel the pressure to “make everything perfect forever.” In order to move from the theoretical benefits gleaned from reviewing bundles and investigational literature to actual positive impacts in a real ICU, we must recognize that often “perfect” is the enemy of “good.” The ideas put into practice in the article by Kleinpell et al (11) were only uniform in two ways: they affected the domain of family engagement, and they were encouraged and held accountable by a national coordinating organization. The positive impact on a single endpoint (family satisfaction scores) with such varied and individualized projects presciently emphasizes the utility of the investigator’s approach: Do something, even if you cannot do everything. The something you do to improve your ICU is superior to the nothing currently being done. Perhaps more importantly, the staff feedback among the ICUs makes a salient point at a meta-level view: There must be a coordinating body for encouragement of the ICU community to develop ideas, hold programs accountable, disseminate successes and serve as a clearinghouse for new participants to get started. Without this coordinating network, all of these impactful interventions are one “champion” away from extinction.

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collaborative; family; Post Intensive Care Syndrome - Family

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