Photo by Nik Shuliahin | Unsplash
Sigall K. Bell, MD, will never forget the image. The Director of Patient Safety and Discovery at OpenNotes, Beth Israel Deaconess Medical Center, and Director of Patient Safety and Quality Initiatives, Institute for Professionalism and Ethical Practice, co-led a conference a few years ago. The goal of the meeting was to define a research agenda on understanding and preventing emotional harm for patients and families following medical errors.
Patients and family members, clinicians, researchers, social scientists, policy experts, and foundation representatives were present. Some attendees had lost children or other loved ones because of medical errors. “I was struck by the courage of the remarkable patients and family members who showed up,” Bell recalls.
During one activity, attendees chose an image from a gallery to represent their experience of a medical error. One person selected a sea turtle and talked about feeling underwater in a silent world. The attendee described “profound isolation, feeling invisible and unheard, with nobody around to help navigate this new reality,” Bell recalls. “They felt the health system didn’t know about their suffering.”
“To this day,” Bell remarks, “the stories that came out of that conference still have my mind turning about how to develop a better system to more fully support patients and families after they’ve experienced medical harm.”
Emotional Harm After Medical Error
The safety movement has focused most of its efforts on preventing errors and adverse events while patients receive medical care. But when harm occurs, the extent of the emotional impact on patients and families — and how to support them in the immediate and long-term aftermath — is not well understood.
According to Bell, patients and families can be overwhelmed by the emotional toll of serious harmful medical events. Some describe post-traumatic distress related to the event, guilt about not being able to prevent it, fear of retribution if they raise concerns, fractured trust, and isolation. Bell notes that, although there is a growing emphasis on transparency, some health care organizations may withhold information, leaving patients and families struggling to piece together the truth about a harmful event. “This can lead patients to experience additional emotional or psychological harm, such as depression, self-blame, or trauma-related anxiety,” she says.
For example, Bell describes a study published by Southwick and colleagues in BMJ Quality & Safety in which they analyzed patient reports following medical harm. Many patients described a physical injury that was compounded by lack of communication and transparency. Bell asserts that lack of full disclosure is disrespectful to patients and family members. “Some try for years to make sense of what happened, battling uncertainty and grief,” she says. “They also worry that nothing was learned by the organization and, therefore, the error and their loss occurred in vain.”
Different Forms of Long-Term Impact
An IHI national survey in 2017 found that 73 percent of the patients who experienced harmful events reported some form of long-term impact. According to Bell, “These effects unfold in their homes, families, and communities, often long after they leave the hospital, and can have huge individual and societal costs.”
Bell describes a study of patients and families who experienced medical error led by Madelene Ottosen and Eric Thomas, her collaborators at the University of Texas Houston-Memorial Hermann Center for Healthcare Quality and Safety. Researchers found that patients and families described many kinds of long-term impacts lasting five to ten years — sometimes even longer — after the event.
After the qualitative analysis, the research team categorized the long-term impact into four different categories:
- Psychological impact — Examples of this include vivid memories of the harm event, anger, anxiety, disruption of trust, and a sense of abandonment. Some patients and families suffered severe depression, PTSD, and even suicidal ideation.
- Social and behavioral impact —This category had both positive and negative components. Some people became more proactive as patients, asking for their records or speaking up about concerns, for example. Some patients avoided any contact with health care following their experience.
- Prolonged physical impact — Patients described physical consequences long after the initial incident. For example, according to Bell, one patient became irreversibly blind in both eyes due to an error during surgery. A once avid tennis player was never able to return to the game after a delay in treating a serious infection led to multiple surgeries.
- Financial impact — Patients and families described not being compensated for years of ongoing surgeries, therapies, and medications. Others had difficulty maintaining regular employment or stopped working altogether.
How Communication and Resolution Can Prevent Secondary Harm
There’s a lack of longitudinal research that delves into the experiences of patients and families after an error. Based on the work done so far, however, Bell theorizes that Communication and Resolution Programs (CRPs) can play a role in preventing the long-term emotional impact of medical harm.
CRPs have been designed using data about what patients and families want after a medical error. These include open communication, acknowledgment of the error, and an apology. “Patients and families also want assurance that the organization has a plan to prevent what happened to them from happening to others,” Bell remarks. “Organizations should also discuss compensation when appropriate.”
These elements inform disclosure guidelines across the country. Bell suggests that recent and ongoing research also offers clues about what organizations may need to do to prevent emotional harm to patients:
- Extend the definition of harm — According to Bell, health care’s “understanding of harm needs to go beyond physical injury. Physical harm is easier to see and measure, but we must also track long-term impacts such as emotional, psychological, and socio-behavioral harms.”
- Commit to long-term research timelines — “The research is showing us that emotional harm may have a long duration,” Bell notes, “so this may also mean long-term communication strategies are needed to support patients and families who are healing over months or even years.”
- Strengthen prevention strategies — Longitudinal research can help identify signs or factors indicating who may be most likely to be vulnerable to longer term emotional impacts. “This may help us intervene earlier to better support patients and families,” says Bell.
- Cultivate emotional intelligence and strong communication — “We’ve learned from years of listening to patients and families that we need to provide clinicians with more communication and relational skills training, develop supportive practice environments, and provide strong leadership that values hearing from and caring for whole patients within a culture of respect,” Bell asserts. “Some clinicians may be uncomfortable with emotion, but patients and families often say they need us to make space for emotions to facilitate opportunities for healing.”
The Multiple Benefits of Communication
The primary reason to create CRPs, Bell asserts, is to “do what’s right for patients.” Patient safety can be enhanced, she says, “when organizations actively learn from safety events, and ideally include patients and families in that process.”
Clinicians and health care systems also benefit from CRPs. When Rick Boothman, JD, started the University of Michigan’s CRP system, Bell recalls him saying that it became “a clinician retention mechanism.” Michigan saw less turnover as its CRP supported clinicians working on disclosure, apology, and safety advocacy.
Medical error is one of the factors associated with clinician burnout and Bell has observed that the need for peer support is now driving CRP implementation in some organizations. “CRPs provide a structured system that enables health care to move away from secrecy, shame, and blame,” she explains.
In one study, clinicians involved in a medical error valued the opportunity to not only talk with colleagues, but also with patients and families. Some clinicians describe conversations with patients they’ve harmed as an opportunity to move toward forgiveness, personal growth, and self-compassion. “Not every relationship can be healed,” Bell acknowledges, “but open communication is a necessary precondition for the possibility of healing.”
Sigall K. Bell, MD, is Director of Patient Safety and Quality Initiatives, Institute for Professionalism and Ethical Practice and will be a presenter at the IHI Patient Safety Congress (May 15–17, 2019 in Houston, TX, USA).
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