6) Ground rules to pre-empt and manage challenging scenarios
Participants suggested ground rules include an expectation of respectful conduct, a designated time during rounds for family input, and opportunities for more in-depth conversations after rounds. Healthcare provider education could teach approaches to addressing disruptions and diffusing conflict. Participants suggested a social worker participate in rounds when disruptions or conflict is anticipated.
IDEA, acronym for introductions, definition, encouragement, and alternatives, is one tool we described to encompass important discussion points within an orientation. (Supplemental material)

Active Engagement

  1. Identifying how family members can contribute to patient careIn addition to supplementing medical information, family members were considered as valuable resources for types of patient information often not available in charts, including: baseline routine, function, and values.
  2. Identifying roles or active tasks that family can perform as members of the care teamParticipants identified potential family roles as: providing health information, directed information gathering, patient advocacy, patient support/comfort, physical care (e.g., delirium identification, mobilization assistance), and communication liaison (e.g., updating other family members, continuity of care between providers). Participants emphasized that family members will differ in which roles and tasks, if any, they wish to participate in; case-by-case assessment of family preferences will be needed. Family members could then be coached within their preferred roles and the roles adapted as needed.
Table 2 describes a written template developed as a framework for family member use during rounds as a mechanism of guided participation and note-taking. This framework increases role clarity by giving family members an idea of how they can offer patient-related information.

Summary of Rounds

Determining the most important information to summarize for family
Family members and providers described important components of a patient- and family-oriented summary: big picture issues, progress of patient status, plan (daily and long-term), prognosis, priorities and potential problems, with the first three being most critical (5 P’s mnemonic tool in Supplemental material).
Determining when to provide the summary (e.g., at end of rounds, before or after family questions)Participants indicated that a single summary at the end of rounds is more efficient than summarizing each issue as it is discussed. They suggested the summary be provided before eliciting family questions, as common questions may be answered in the summary. When family is not available during rounds, the summary can be provided when they next arrive or can be communicated by telephone.

Opportunity for Questions

  1. Encouraging different types of family inputParticipants suggested encouraging family to think of questions, comments, and concerns ahead of time and write them down. Participants indicated it was particularly important that the rounding team invite questions and concerns, acknowledge and validate family input, and listen attentively when family is speaking. Formulating questions into open-ended format can increase the sense of welcome and promote dialogue (Examples within Supplemental material.)
  2. Crafting optimal responses to family questions and inputFamilies emphasized that questions are best answered with straightforward language, and in a respectful and empathetic manner. Body language and tone were highlighted as essential for building trust and establishing rapport. When there are many questions, or it is not the right time or place for discussion (e.g., a private setting is needed), participants suggested validating the question/concern and setting a time to address the issue after rounds (e.g., in a formal meeting).

Communication Follow-Up

  1. Best ways to communicate with families outside of roundsParticipants highlighted that communication can occur informally throughout the day. Any healthcare provider was considered appropriate to communicate with family, as long as information is consistent across providers. Phone calls were identified as an alternative way to communicate with family. Whiteboards were recommended, although participants emphasized that information on a whiteboard must respect patient confidentiality.
  2. Family follow-up after rounds
Participants suggested that a designated member of the healthcare team check in with family and ensure their questions have been addressed after rounds has concluded. A large number of questions may suggest the need for a separate family meeting. Family could also be encouraged to write down questions that occur to them before the next rounds.
  1. Accommodating families unable to physically attend roundsParticipants felt family should be asked their preferences for alternate communication early in the patient’s stay. Options suggested included telephone or videoconferencing. However, family access to computers and internet cannot be assumed. For families who visit outside of rounds, verbal summaries by a healthcare provider who was present during rounds was suggested as an alternative.
  2. Supporting vulnerable families Participants recognized that family characteristics and circumstances (e.g., language barrier, minority groups, elderly/frail, complex family relations, social stigma) may result in vulnerability. Participants emphasized that all family members are vulnerable in some way and recommended asking all families how they are coping and what support and resources would be of benefit to them.DiscussionProfessional organizations have advocated for family member participation during ICU bedside rounds for nearly 20 years1,11-13. Recent North American data indicates increases in family presence with the adoption of open visitation policies, however this speaks little to the nature of family participation 14-16. By partnering with both family members and providers, we have developed an evidence-informed approach to patient and family centered rounds that highlights the importance of six key elements foundational to patient and family centered rounds: Invitation, Orientation, Active Engagement, Summary, Opportunity for Questions, and Communication Follow-Up, and we describe strategies to optimize these elements and interactions so that communication is more meaningful.
Rationale for toolkit approach: There is broad support for the notion of involving patients (and by extension, family members who serve as patient representatives when the patient lacks capacity) in ICU rounds, as a daily opportunity for shared decision-making with a multidisciplinary team 1. Defining the elements of this participation has remained much more elusive. Family engagement can be anywhere in a passive–active spectrum (e.g., presence versus making suggestions) while decision-making approaches vary from paternalistic to patient-informed 2,17,18. Given the dynamic and complex nature of ICU care and rounds, family members may adopt variable types of engagement and decision-making throughout the course of rounds. This anticipated variability in the nature of family participation does not preclude defining crucial elements central to PFCC rounds and robust communication practice however. Considering rounds is a discrete clinical encounter, similar to insertion of a central line or surgery, it should be amenable to a simple tool like a checklist to standardize processes 19,20. Recognizing that checklists cannot replace clinical judgment or appropriate responses to emotion, our research has identified six key structures and processes for PFCC rounds along with tools to support fluidity and responsiveness to the needs of patients, families, and team members. Previous studies involving family participation in adult ICU rounds share the common processes of invitation, summary, and opportunity for questions; however, adopting these elements alone risks constraining family members to more passive roles; elements that promote active engagement are notably absent from these prior recommendations 5,7,8,21. To our knowledge, our tool for active engagement is the first approach described for coaching family members on participating in rounds in a way that recognizes them as active members of the care team.
Adoption of tools: Within a range of possible family roles in rounds, our family member participants have stressed that they adopt the various potential roles in different ways, and that the care team must be flexible and explore how families prefer to be engaged. Our toolkit was developed by family members and providers from a myriad of practice settings, and all emphasized that components will need to be tailored to local needs and context, ideally within a quality improvement paradigm. Furthermore, the toolkit elements may be difficult to introduce all at once; individual units can determine both the sequence and number of elements to implement within a given timeframe. For some centers, implementation of these structures and processes may also require a cultural shift. Education about the rationale for toolkit elements and addressing concerns will be essential for provider engagement.
Strengths of this study include a multi-method approach involving a provincial network of stakeholders from varied practice settings, and a rich description of practical tools and how they can be implemented. Limitations include situating the study within a provincial practice network in Western Canada that largely functions with open family visitation hours, potentially limiting transferability to other contexts. We have also focused mostly on practices to support family as opposed to patients. This does not understate the importance we place on patient involvement whenever possible. Finally, we present suggestions for patient and family centered rounds and acknowledge that further research to determine the impact of implementation is needed.