Previous studies have shown that when all members of the
clinical care team feel comfortable speaking up, team performance improves.
With intimate knowledge of patients’ wishes, medical histories and clinical
conditions, patients and their families are increasingly considered crucial
members of the optimal patient-centered care team. However, to have an impact
on patient safety, patients and families must feel comfortable voicing concerns
about care to the medical team. Currently, little is known about patients’ and
their families’ level of comfort with speaking up in real time in the ICU

In a new study, a team led by clinician-researchers at Beth
Israel Deaconess Medical Center (BIDMC) surveyed family members and patients
with recent ICU experiences about their willingness to speak up about care
concerns to medical providers. Their findings, published in BMJ Quality
and Safety, revealed that 50 to 70% of family member respondents with a loved
one in the ICU at the time of the survey expressed hesitancy about voicing
their concerns about common care situations with safety implications.

“Speaking up is a key component of safety culture, yet
our study – the first to our knowledge to address this issue – revealed
substantial challenges for patients and families speaking up during an ICU
stay,” said co-lead author Sigall K. Bell, the Director of Patient Safety
and Discovery at OpenNotes, BIDMC and an Associate Professor of Medicine at
Harvard Medical School. “In the ICU setting in particular, families – who
are also among the most vigilant stakeholders – may hold key information
clinicians may have overlooked and may be the first to detect a change in
clinical status. Our findings are important because true partnerships with
patients and families may be limited if they don’t feel supported to voice
their concerns.”

Using a questionnaire collaboratively designed by a
multidisciplinary group including experts from the Patient and Family Advisory
Council at BIDMC, BIDMC’s Center for Healthcare Delivery Science, Department of
Social Work and Department of Health Quality Care, and collaborators at
Intermountain Medical Center at the University of Utah, Bell and colleagues
surveyed 105 families of patients admitted to an urban academic hospital’s ICUs
from July 2014 to February 2015. The team also surveyed a panel of 1050
participants with recent ICU experience via the internet. (Given the
demographic differences between the two groups, they were not compared
statistically, but the findings showed consistent trends across both groups.)

The data revealed that while nearly two-thirds of current
ICU patients and families reported feeling very comfortable discussing
medications, only about one-third of respondents said they felt the same way
about discussing hand hygiene or disagreements about aggressiveness of care
desired by patients/families versus that proposed by clinicians. Only half of
those surveyed reported feeling very comfortable asking for clarification about
confusing or conflicting information or raising concerns about a possible
error. Fear of being labeled a “troublemaker,” not knowing whom to
talk to, and the medical team’s busyness were the most often cited reason for
that hesitancy.

“We were surprised not knowing who to talk to about
concerns — a readily actionable issue — was among the most highly cited
barriers,” said Bell. “Our results highlight the need to explicitly
support patients and families to speak up in real time about perceived errors.
Hesitancy to do so represents a real safety gap.”

When Bell and colleagues looked at demographic
characteristics affecting comfort with raising concerns, they saw that younger
people, men and those without personal experience in health care were less
likely speak up. The scientists noted that because the group surveyed at the
urban academic hospital spoke only English and were disproportionately college
educated and connected to the healthcare industry, their study likely
underestimated the average patient and family member’s hesitancy to speak up
during an ICU admission.

The team’s findings represent relatively low-cost
opportunities to improve patient and family outcomes. Clear and systematic
instructions about whom to contact with concerns are a critical first step.
Culturally reframing speaking up more positively from ‘causing trouble’ to
being an ‘engaged team member,’ and ensuring that clinicians listen to patients
and families when they do speak up may also help, the researchers suggest.

“The results highlight new areas for emphasis and
improvement,” said co-lead author Stephanie Dawn Roche, MPH, Quality
Research Analyst at BIDMC’s Center for Healthcare Delivery Science.
“Empowering patients and families to speak up – especially given their
unique knowledge of the patient and the potential to prevent catastrophic outcomes
such as serious medication errors – has been identified as a critical next step
in improving safety culture. BIDMC has been a longtime leader in patient
engagement and we are excited about innovating ways to empower patients and
families even more. We hope this research will open the door to new
opportunities in patient-and-family-centered care and safety

Source: Beth
Israel Deaconess Medical Center

Reference: Bell
SK, et al.  Speaking up about care
concerns in the ICU: patient and family experiences, attitudes and perceived
barriers. BMJ Quality and Safety. 2018. Published online 12 July 2018.