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Danielle Demiantschuk, MA; H. Tom Stelfox, MD, PhD, FRCPC
Patient- and family-centered care is a central focus of healthcare delivery. Alberta Health Services, a fully integrated health system responsible for delivering health services to over four million residents of Alberta, Canada, has a “Patient First Strategy.” As part of this strategy, Alberta Health Services created 13 strategic clinical networks, including one for critical care, which focuses on research and innovation through the collaboration of patients and their families, providers, and researchers. The health system’s patient- and familycentered care mandate and a mature patient- and family-centered care infrastructure provide a unique context to trial the newly published Society of Critical Care Medicine’s (SCCM) “Guidelines for Family-Centered Care in the Neonatal, Pediatric, and Adult ICU”1 and the corresponding gap analysis tool.2
In order to paint a complete picture of patient- and family-centered care in Alberta, our team shared the guidelines and gap analysis tool with a representative from each of the 14 adult medical-surgical intensive care units (ICUs) in the health system and solicited their experiences in using the tool. The tool was also presented to 178 network members at an in-person summit in May 2017. Three key lessons emerged from this engagement that we conceptualized using Graham et al’s knowledge-to-action framework: 1) linking decisions-makers and researchers to work on recommendations that are felt to need more research, 2) identifying opportunities for improvement, and 3) highlighting existing patient- and family-centered care practices that warrant reevaluation.3
Learning Step 1: Need for further research.
Despite the evidence summarized in the guidelines, providers reported that some of the recommendations warranted further study before being implemented into routine patient care. This provided a natural mechanism for linking decision-makers with researchers. For example, the gap analysis tool asks users to rank how often “family members of critically ill neonates are offered the option to learn how to assist with the care of their loved ones.” Decision-makers wondered if this was applicable to adult patients. We linked the decision-makers with Kirsten Fiest, PhD (firstname.lastname@example.org), who is leading a study funded by the Canadian Institutes of Health Research to determine whether families of adult patients have a role in screening for delirium. Another section of the gap analysis tool inquires how frequently “spiritual support with a spiritual advisor or chaplain is offered to families.” Decision-makers reported varying involvement of spiritual advisors and were uncertain about the benefit. We linked with Amanda L. Roze des Ordons, MD (Amanda. RozedesOrdons@albertahealthservices.ca), who is developing an approach to identifying spiritual distress among family members of critically ill patients so that support and resources can be offered earlier in the ICU trajectory.
Learning Step 2: Opportunities for improving patient- and family-centered care.
While highlighting many practices that are done well in Alberta ICUs, such as family presence, the gap analysis tool identified opportunities for improvement. There were several broadly similar priorities identified across organizations. Many ICUs face barriers such as cost; for instance, hiring family navigators is not practical in a fiscally constrained environment. These constraints require innovation such as recruiting former ICU patients and family members as volunteers. Other priorities varied across centers, highlighting the different needs of different ICUs. For instance, a recent local quality improvement initiative demonstrated highly variable perspectives on family participation in rounds, which was confirmed by the gap analysis tool.4 In response, work is being done to develop a standardized approach for how to best incorporate patients’ families in rounds while addressing provider concerns regarding potential impact on the quality of rounds, including duration and teaching of trainees.
Learning Step 3: Opportunities for evaluating effectiveness of existing patient- and family centered care initiatives.
The gap analysis tool identified many preexisting patient- and family-centered care initiatives and highlighted the need to periodically revisit these initiatives, evaluate their effectiveness, and determine whether any modifications are needed. The gap analysis tool indirectly provides a reminder to consider sustainability. For example, “environmental hygiene practices have been implemented” in many ICUs as part of ICU Liberation initiatives employing SCCM’s ABCDEF bundle. Christopher “Chip” Doig, MD, MSc, FRCPC (email@example.com), Tove Le Blanc, RN, BScN (tove. firstname.lastname@example.org), and Melissa Redlich, RN, BN (melissa. email@example.com) from the Critical Care Strategic Clinical Network are leading an evaluation of the current practices to prevent, screen, and manage delirium to determine what, if any, modifications are needed. Other opportunities exist to evaluate protocols for end-of-life care.
Outside of the lessons learned from our health system’s experience, the gap analysis tool was reviewed as well. The tool is easy to use. It comes with an instructional video and detailed resources. It serves to identify the areas in which each unit may have cause to both celebrate and improve. We did identify opportunities to refine the gap analysis tool. For example, the clinical significance of the item scores assigned by the tool to identify priorities for improvement was not always clear. This meant that at times ICU representatives were uncertain about the potential magnitude of benefit of focusing on one recommendation over another when the costs and challenges of implementing the two recommendations might be quite different (e.g., What is the clinical significance of a fivepoint difference between two recommendations on the 50-point scale used?). This is further complicated by the fact that we had a single representative complete the gap analysis tool on behalf of each ICU. Small changes in how often recommendations were reported to be used in an ICU translated into big differences in priorities, leaving it unclear whether the results would have been similar if additional perspectives had been solicited, even if the participants had broadly similar views.
These constraints aside, the gap analysis tool allowed us to have a rich conversation about patient- and familycentered care in Alberta in the context of SCCM’s recently published guidelines. In the context of a health system with mature patient- and family-centered care initiatives, we identified benefits from using the tool. It provides a mechanism to: 1) identify decision-maker uncertainty about the science underpinning a recommendation and facilitate partnerships with researchers; 2) identify opportunities for new interventions as well as coalitions to pursue; 3) remind decision-makers of existing initiatives and the importance of reevaluating them, to determine both whether modifications are required and whether they have been sustained. As experience with the gap analysis tool grows, additional learning is to be expected.
1. Davison JE, Aslakson RA, Long AC, et al. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med. 2017 Jan; 45 (1): 103-128.
2. Society of Critical Care Medicine. Guidelines. Mt. Prospect, IL: Society of Critical Care Medicine.
3. Graham ID, Logan J, Harrison MB, et al. Lost in knowledge translation: time for a map? J Contin Educ Health Prof. 2006 Winter; 26 (1): 13-24.
4. Au SS, Roze des Ordons A, Soo A, Guienguere S, Stelfox HT. Family participation in intensive care unit rounds: comparing family and provider perspectives. J Crit Care. 2017 Apr; 38: 132-136.