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
- 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.
- 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
- 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.)
- 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
- 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.
- 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.
- 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.
- 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.