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Family Members' Silence Has Devastating Effects for Patients

Analysis  |  By Megan Headley  
   October 12, 2018

Nurses must create a culture that encourages family caregivers to speak up about patient safety issues.

Editor's note: This article originally appeared on PSQH.

During her early research on patient safety over a decade ago, focusing on medical error disclosure and ways to improve communication with patients and families after harmful events, Sigall K. Bell, MD, director of patient safety and quality initiatives for the Raskin Fellow in Medical Education at Beth Israel Deaconess Medical Center, began to notice a pattern.

"I started noticing that some of the stories of harmed patients and families shared a common narrative: 'I knew something was wrong, but I couldn't say anything' or, 'I didn't know how or who to tell' or, 'I tried to say something, but it didn't work.' This resonated with themes we heard from interviewed patients and families who experienced medical error, which included a sense of guilt: 'If only I had been there,' or, 'If only I had said something,'" Bell recalls.

As it turns out, clinicians may be overlooking, if not actively discouraging, input from a significant patient safety resource: patient caregivers.

In an article published July 2018 in BMJ Quality and Safety, Bell and her colleagues present numbers to back up these anecdotes. The team found that in a survey of family members of ICU patients, significantly more than half were hesitant to speak up about possible mistakes, mismatched care goals, confusing or conflicting information, or even inadequate hand hygiene.

Families admit there's a communication problem

In their article "Speaking up about care concerns in the ICU: Patient and family experiences, attitudes and perceived barriers," Bell and her fellow researchers surveyed 125 ICU families at the Beth Israel Deaconess Medical Center, and supplemented that information with a national internet sample of 1,050 individuals with prior ICU experience.

Among the ICU families, 50%–70% expressed hesitancy to voice concerns around surveyed areas. Results among prior ICU participants were similar. Half of all respondents reported at least one barrier to voicing concerns. Most commonly, they did not want to be seen as a "troublemaker." In other cases, they felt the team was too busy or they simply didn't know how to express these concerns.

The researchers concluded in the paper, "Patient/family education about how to speak up and assurance that raising concerns will not create 'trouble' may help promote open discussions about care concerns and possible errors in the ICU."

Hesitation from family members is a real problem for clinicians, who could be losing a valuable partner when caregivers are reluctant to speak up.

"Engaging caregivers in conversations what's going on with the patient and their treatment options, and answering their questions about the treatment plan is really important because it can help guide you as a provider," says Hanan J. Aboumatar, MD, MPH, director of the Johns Hopkins Armstrong Institute Center for Engagement and Patient-Centered Innovations and Core Faculty.

For starters, those conversations provide clinicians an opportunity to prepare a caregiver on providing necessary treatment to the patient and emphasizing the importance of sticking with the treatment plan.

"Caregivers need to buy in to a treatment regimen just as much as the patients do," says Caitlin Donovan, director of outreach and public affairs for the National Patient Advocate Foundation. "Often much of a treatment regimen relies on the family as a caregiver, who have to monitor medicine, drive to appointments, and stay on top of a diet. If they have any concerns, or don't let a provider know of their inability to adhere to the treatment, the patient may not get the best possible care."

In addition, caregivers who are present across multiple hospital stays may become familiar with treatment routines and notice changes that could signify an error. "Potentially the caregiver could recognize certain problems in care that others might not," Aboumatar says. "That may be a very good way to identify problems early on and prevent any harm from occurring to their loved one."

Barriers to better interaction with caregivers

In her research on communication, Bell has also explored the "speaking up climate," or the degree to which the environment enables clinicians to speak up about patient safety threats. "Here we found that the medical hierarchy can be problematic and that residents, nurses, and even faculty physicians can have trouble raising concerns with other clinicians."

This research set forth the idea that in an era of emphasizing patients as part of the safety team, safety culture should include a focus on creating an environment that allows patients and families to speak up about care concerns. "Anyone should be able to 'stop the line' when they see a possible safety problem—including patients and families. While we haven't yet developed a 'speaking up climate' scale for patients and families, this study was a first step in that direction," Bell says.

Programs that encourage physicians to speak up when something is wrong are becoming more common for healthcare organizations, particularly related to the problems that physicians and nurses face as a result of traumatic second victim situations. But this encouragement to speak up doesn't always extend to families.

"We rely on caregivers to take care of patients in the outpatient setting as soon. But as the patient comes into the hospital, we take over all care activities for the patient," Aboumatar notes.

And it's easy to see why. For starters, Aboumatar points out, not all patients have caregivers, so the system is set up to handle all patient needs regardless of the presence or absence of a caregiver.

That's just the beginning of the barriers that must be overcome. In the ICU in particular, there's a risk of a caregiver inadvertently harming the patient unless he or she is properly trained in how to provide care. That training demands time and resources that may not be available.

"You have to answer their questions, there may be some tasks you need to supervise, so if you don't have systems in place and tools available that will make it easier for you to engage the caregivers, then time and concern for how the caregivers may perform may be barriers to engaging them, particularly in the hospital," Aboumatar adds.

Aboumatar points to one more barrier that is within the power of today's doctors to change. "Healthcare professionals learn by example," she says. "If you don't have enough role models around you where you're seeing healthcare professionals engaging in behaviors that will support caregiver engagement, you may not do that."

Awareness of this oversight—and the benefits patients are losing by not engaging caregivers—is likely to be the most powerful trigger to change.

"Healthcare professionals are used to not relying on caregivers for any patient care services in the acute care setting," Aboumatar says. "So, for us to start engaging patients more and more in their own care while in the hospital, and for caregivers to become more engaged as well, you really need to become very aware of that and do this more as part of your practice. It doesn't happen naturally. You have to think about how this can be integrated into your own practice as a provider and how the practice approaches engaging caregivers in the hospital."

Resources to encourage caregiver engagement

More healthcare organizations are looking to encourage patients and families to speak up.

The MedStar Institute for Quality and Safety has a "We Want to Know" program to improve two-way communication capabilities. It aims to help patients report problems and concerns as they happen or after discharge.

Through its Roadmap project, the National Patient Advocate Foundation is working to encourage communication between patients and providers, particularly on care conversations. "We suggest that in the very first appointment with a provider, both the patient and their caregiver have the opportunity to evaluate the process and outcomes of the appointment, including treatment options," Donovan says.

And The Joint Commission relaunched its Speak Up program in May 2018 to help patients and their advocates become more active in their care. The program includes videos to engage the general public.

"Recognizing that patients can potentially play a role in preventing catastrophic medication overdoses, cancer centers also encourage patients to speak up, and state the importance of doing so on patient-related materials," Bell adds. "Organizations across the country are interested in patient engagement and strong safety partnerships with patients and families—speaking up will be an important component."

Skills for starting the conversation

While these programs offer plenty of value to healthcare organizations looking for resources to make caregivers more comfortable in voicing patient safety concerns, there may be some simpler strategies clinicians can try first.

"We know that it can be intimidating for patients to speak up to doctors, authority figures, or other experts," Donovan says.

She finds assessments to be an important tool for encouraging open communication. "Not only is the first appointment critical in establishing the treatment and protocol, but there should be assessments at every key decision point to ensure that goals are still being met and to evaluate if those goals have changed," she says.

While Bell notes that it will take further research to guide the next steps, she suggests, "Patient education programs should help patients to develop the language of speaking up in healthcare. But organizational support systems need to lead the way."

Based on the paper's findings, Bell offers six steps that organizations can begin to consider:

  1. Underscore as part of ICU orientation or other patient participation programs that families hold unique information about the patient. Develop patient education programs that enable interested patients and family members to identify patient safety hazards.
  2. Reinforce that the clinical team wants to know about caregivers' concerns. This may help offset concerns about being viewed as "troublemakers."
  3. Provide at the outset (before they are needed) clear instructions about how to raise concerns, such as who to speak to and how to notify clinicians about urgent issues.
  4. Identify language for how patients and families can most effectively raise their concerns, through research and pilot programs. Patient education about speaking up should ensure a clear way to describe the concern and to make a clear "ask" statement—what do patients and families need that clinicians can act upon? This might include adaptation of the SBAR approach for communication, AHRQ's TeamSTEPPS, or the CUS model:
    • I am Concerned
    • I am Uncomfortable
    • I am worried this is a Safety issue
  5. Prepare clinicians to respond effectively when patients speak up. This will require faculty development and strengthening of transparency culture, ensuring that patients feel heard and respected.
  6. Recognize patients and families that speak up, and celebrate their role as part of the healthcare team and safety culture. This can help reinforce organizational commitment to partnering with patients, increase the visibility of this leadership and frontline commitment, and encourage other patients and families to voice their own concerns.

Aboumatar offers several additional strategies to help clinicians gain support and feedback from caregivers:

  1. Encourage all providers to communicate verbally and nonverbally in a way that allows caregivers and patients to feel comfortable and able to approach them with questions, she says. This may include basic things, such as introducing yourself with a smile and explaining your role, both of which acknowledge the caregiver in the room.
  2. Try sitting next to caregivers, rather than talking with them from the hallway, so they feel you are giving them the time and attention that they need.
  3. Ask questions and give caregivers the time, without interruption, to speak up with any concerns.
  4. Put yourself in their shoes. That means "thinking about yourself in that position and how you would want to be treated," Aboumatar says.

But making these changes depends on leadership willing to drive this organizational focus. For clinicians to change, leadership needs to emphasize the value of caregiver input.

"Bottom line, it has to do with creating that organizational culture that provides permission and encourages basic engagement for caregivers and allows them the support and education they may need to become more active participants in the care of their loved one," Aboumatar says.

Megan Headley is a freelance writer and owner of ClearStory Publications.


Patients' family members often don't speak up about safety issues for fear of being seen as "troublemakers."

Leaders must create an organizational culture that values caregiver input.

Patient education programs can help patients to develop the language of speaking up in healthcare.

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