EXECUTIVE SUMMARY

Recent research indicates many parents are unwilling to speak up about safety concerns. Encouraging them to speak up will require a culture of safety.

  • 62% of parents in a pediatric care setting were confident about voicing concerns.
  • Many patients and parents think healthcare professionals will not consider their concerns.
  • Physicians and nurses must respond favorably to encourage more parent participation.

For decades, risk managers have tried to improve safety by encouraging patients and family members to speak up when they are concerned about care or suspect something might be wrong. Some progress has been made, but recent data suggest one group remains reluctant to speak up: the parents of pediatric patients.

The Leapfrog Group recently released its Patient Experience Report, featuring the results of surveys administered to patients by hospitals and ambulatory surgery centers (ASCs) across the country.1 Using results from the Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys, the Leapfrog Hospital Survey, Leapfrog ASC Survey, and the Centers for Medicare & Medicaid Services (CMS), the report focuses on the patient experience in adult inpatient hospitals, hospitals that treat pediatric patients, and facilities that provide same-day surgeries.

The data indicate that for children receiving hospital care, a significant portion of parents and guardians do not feel comfortable raising concerns about errors.

The pediatric survey “raises serious concerns about patient safety, with only an average of 62% giving the most favorable response on how well they felt equipped to prevent mistakes by reporting concerns,” the authors wrote. “Included within this area are parent perspectives on how well the hospital administers medication, an essential step to prevent serious potential harm from medication errors, and whether or not hospitals empower parents and guardians with a welcoming, open environment for patients to report concerns.”1

A parent “may be better equipped than a medical provider to notice when something is wrong. Feeling prepared to speak up immediately when they observe problems is a critical patient safety indicator, improving the odds of preventing or reducing harm from errors,” the authors noted. “Many adult inpatients may not fully understand what they need for the continuation of their care after being discharged from the hospital. Patients do not give high ratings to hospital communications about medications — a critical problem for patient safety, since medication errors are one of the most common dangers patients face in healthcare settings.”

ASCs received more positive ratings on this issue than hospital outpatient departments.

Parental Observations Useful

The Leapfrog Group and others in the healthcare community have encouraged people to ensure a relative or companion is present to be the patient’s advocate and voice concerns, notes Erica Mobley, vice president of administration with The Leapfrog Group. Fortunately for most pediatric patients, at least one parent fills that role.

“Many pediatric patients cannot speak up for themselves, so it is important that the parent or guardian do so, and they must feel as though they’re empowered to,” Mobley says. “When a child is in a healthcare environment, it can be very stressful and worrisome, but parents should never feel that they have to be careful walking around providers and feel that their opinions shouldn’t matter.”

Parents and guardians know the child better than any provider, so they often will be the first to pick up on subtle differences in the child’s behavior or appearance.

“Even a minor change can be the signal that something more serious could be happening, so parents should never feel that they should hesitate — or that if they do speak up, they won’t be listened to,” she says. “That really was an alarming finding that parents may not feel comfortable speaking up if they think something is wrong.”

Mobley encourages physicians and nurses to clearly state they want the parents to speak up if they have any concerns or questions, emphasizing they should relate even the smallest issue.

“But, of course, you have to not just tell them that. You have to actually be willing to hear them and respond appropriately when they do speak up,” she says. “That is the challenge for some organizations.”

Some Do Not Know They Can

It is important to tell patients and parents they can speak up because many do not realize they can, says Karen Curtiss, founder of The Care Partner Project in Chicago. When her organization holds presentations on the importance of voicing patient safety concerns and asks attendees for the most important thing they learned, Curtiss says a common response is “I didn’t know I could ask questions” during a medical visit or hospital stay.

Even those who feel more comfortable speaking up often do not know what to say or ask, Curtiss says. Disparities in education, fluency in English, and familiarity with the healthcare system all can discourage people from questioning what is happening or reporting concerns.

“There also is a sense of time pressure that inhibits conversation. The patient may want to ask what that vocabulary word means or why treatment is proceeding in this way and not that way, but they don’t want to take up more of the physician’s time when it is obvious they are pressed for time,” Curtiss says.

Patients and caregivers also report they fear they will be seen as a “pest” or “difficult” if they ask too many questions or report their concerns, and that such labeling will result in poor care quality. That is why the response of the physician or nurse is so important to ensuring parents feel comfortable speaking up.

“Our greatest fear is that when people do ask questions, they’ll get the eyeroll,” Curtiss says. “The eyeroll just shuts people down.”

The Care Partner Project offers checklists patients and caregivers can use to help them advocate for patient safety and quality.

Hospital Encourages Voicing Concerns

It is troubling that so many parents are reluctant to voice their concerns, says Michael Loftus, MD, chief medical officer at Jersey City (NJ) Medical Center.

In some cases, perceived communication barriers can arise from an expertise or knowledge differential, he says. This is not unique to medicine; it is true across many industries. People believe they will not be heard, or that trained professionals know better, so they do not speak up.

“However, patients, family, and caregivers are a crucial part of the healthcare team because they are often attuned to small changes in a patient that a healthcare provider may not see,” Loftus says. “For this reason, it’s vital that we create a culture where people feel confident about speaking up and asking questions. Indeed, the next generation of medicine — today’s residents and fellows — are focusing more than ever on the importance of team-based care. They are being trained to help patients and families feel more comfortable speaking up and communicating their concerns.”

Many hospitals — including Jersey City Medical Center and elsewhere in the RWJBarnabas Health system — are high reliability organizations. This involves creating a culture where everybody — not just patients and families — is encouraged to speak up and escalate their concerns.

“We have been focused on this for several years. The process involves daily safety briefings and training people to use common language both to express concerns and receive feedback. Once everyone embraces this culture, every piece of information is treated as valuable, and the dismissive mentality is minimized,” Loftus says. “No one is too low on the proverbial food chain to question someone else, and no one is too high on the food chain to be questioned.”

No Eyerolls, Please

But encouraging family members to speak up will not work if they are met with eyerolls and dismissive comments. How can clinicians become more accepting and responsive?

This requires proactive training and communication to clinicians so they understand the vital importance of hearing family member input and how to create an environment in which family members feel heard, Loftus says. This might be as simple as sitting down, asking the family about any concerns, and taking a meaningful pause to make it clear you are willing to hear these concerns.

Loftus and colleagues work closely with the entire clinical team to remind them of the importance of respect and meaningful patient engagement.

“Reassure the family that if they have concerns, you want to hear them. Maybe they won’t raise them right then and there, but by setting that tone, you have created an atmosphere in which, at the right moment, they may be willing to speak up,” he says. “It’s about creating a culture of respect. Every member of the care team deserves our respect, and eyerolls and dismissive comments are the antithesis of respect.”

Measuring progress in this area can be challenging. In addition to data from The Leapfrog Group, Loftus looks to Press Ganey patient experience metrics. Many of the same behaviors that tie into creating a culture of communication and respect are reflected in these surveys.

“Another way we measure success is through actual clinical outcomes. Do patients go home healed and in a better place than when they came through our doors? Was their hospital stay satisfactory, with no mishaps?” he asks. “Open communication leads to safer care and better performance. We review our outcomes and our patient surveys rigorously. We read each and every comment we get from our patients as a team. Our processes are focused on getting as much feedback as possible in real time so that issues can be addressed now, immediately — not later, after the patient is discharged, when it’s too late.”

Continuous quality improvement is key to addressing issues such as parental reluctance to voice concerns. Jersey City Medical Center has seen enormous improvements in recent years by focusing on safety, patient engagement, and giving patients, families, and caregivers the tools and comfort they need to communicate their concerns.

“It’s worth repeating that every patient, or their family members and caregivers, should consider themselves among the best advocates for that patient. They should feel comfortable raising any concern at any time. They should remember that there is always another layer — if they feel that their concern has not reached the right ears, that concern can and must be escalated,” Loftus says. “If a patient ever feels that their concern is not being accepted at face value by a clinician, they should know that they have the right to escalate that concern higher and higher in the organization until they feel heard.”

REFERENCE

  1. The Leapfrog Group. What patients think about their hospitals and ambulatory surgery centers: An analysis of patient experience surveys. 2021.

SOURCES

  • Karen Curtiss, Founder, The Care Partner Project, Chicago. Phone: (847) 208-6074. Email: karen.curtiss@carepartnerproject.org.
  • Michael Loftus, MD, Chief Medical Officer, Jersey City (NJ) Medical Center. Phone: (201) 915-2215.
  • Erica Mobley, Vice President, Administration, The Leapfrog Group, Washington, DC. Phone: (202) 292-6813.