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Patients and Families Hesitant to Speak Up About Safety in ICU

Analysis  |  By Kenneth Michek  
   July 18, 2018

More than half of patients and families expressed discomfort about raising patient safety concerns to the healthcare team.

Prior studies that when all clinical care team members are empowered to speak-up their performance improves. With the growing importance of patient- and family-centered care, patients and their families are a crucial component of the modern care team, as they can provide unique insight and knowledge into the discussion.

Unfortunately, patients and families are often hesitant to voice their concerns to the healthcare team, finds a new study published in BMJ Quality and Safety. When researchers at Beth Israel Deaconess Medical Center surveyed family members and patients that had a recent ICU experience about their ability to speak up about care concerns to their care team they found between 50 to 70% of family member respondents with a loved one in the ICU expressed hesitancy about voicing their concerns about common care situations with safety implications.

Methodology and Findings

The researchers used a questionnaire the was collaboratively designed by a multidisciplinary group of healthcare experts to survey 105 families of patients admitted to an urban academic hospital’s ICU over a period from July 2014 to February 2015. They also extended their research by surveying a panel of over 1,000 participants with recent ICU experience over the internet. The two groups were not compared statistically, but there were consistent trends across both groups.

Here are some of the key findings of the surveys:

  • About two-thirds of ICU patients and families felt very comfortable discussing medication.
  • About two-thirds of respondents said they did not feel comfortable about discussing disagreements about aggressiveness of care desired patients and families versus that proposed by clinicians.
  • Only half of the participants reported feeling very comfortable about asking for clarification about confusing or conflicting information, or raising concerns about possible errors.
  • The most common rationales for their discomfort were fear of being labeled a “troublemaker,” not knowing whom to talk to, and the busyness of the medical team.
  • Demographically, young people, men, and those without healthcare experience were less likely to speak up.

The researchers also noted that because the group surveyed at the urban academic hospital spoke only English and were disproportionately college educated, their study might actually underestimate the average patient and family member’s hesitancy to speak up during an ICU visit.

Patient Safety Concerns

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 expressed concerns about the patient 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,” Bell says. “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.”

Despite the troubling results, there might be a bright side to the problem. According to the authors, the findings represent relatively low-cost opportunities to improve patient outcomes. Clear instructions about whom to contact with concerns is a crucial first step, and creating an atmosphere of positive cooperation that reframes “being a troublemaker” to “being an engaged team member” is another essential component of reversing this issue.

Often considered the patient advocate among the care team, bedside nurses typically spend the most time with patients and families, so they could be the key to improving patient-clinician communication. Nurse leaders should encourage their nurses to listen to patients and families more, ask questions, and make sure they feel comfortable speaking up. Additionally, clinicians must make sure that bedside nurses play a role in decision-making, as nurses can act as a liaison between family members and other caretakers.

“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... We hope this research will open the door to new opportunities in patient-and-family-centered care and safety partnerships.”

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