Monica Enderlin’s father was a healthy and active 74 year-old cabinetmaker who enjoyed sailing and spending time with his four children and wife of 47 years. In March of 2009, he was admitted to hospital in Edmonton with a non-resolving pneumonia. Soon after admission, his condition took a serious turn for the worse.

“He was healthy and driving—he walked in and within a week was barely able to speak,” remembers Enderlin. “During the next two weeks my dad endured extreme pain and intolerable thirst, by the third week all of his organs had shut down.”

As the family watched in despair as the medical team struggled to determine the cause of his deterioration, a vague mention was made of a medical error. Not long after, and just three weeks after walking into hospital he passed away with his family by his side.

To err is human…

In 1999 the Institute of Medicine issued a landmark report entitled To Err is Human: Building a Safer Health System which estimated that up to 100,000 Americans die each year as a result of preventable medical errors.

Here at home, the 2004 Canadian Adverse Events Study reported that medical errors occur during 185,000 or 7.5% of hospitalizations across the country, and almost 37% of these errors are preventable.

A more recent estimate, published earlier this year in the Journal of Patient Safety is that as many as 440,000 Americans die each year from preventable medical errors. This would make medical error the third leading cause of death in the United States.

This groundbreaking research has raised global awareness about patient safety, leading to the launch of several initiatives aimed at reducing medical error including the Institute for Health Improvement’s 100,000 Lives Campaign and the Canadian Patient Safety Institute’s flagship Safer Healthcare Now! program.

…To disclose is not

Despite this focus on error prevention, much less attention has been paid to the process of medical error disclosure.

“Twelve years ago there was nothing in the literature,” reflects Dr. Wendy Levinson, the Sir John and Lady Eaton Professor and Chair of the Department of Medicine at the University of Toronto.

“The Institute of Medicine had done To Err is Human, but no one was talking about physicians disclosing errors; 10 years ago nobody talked about this topic,” Levinson notes. “There was a lot of the counter messaging and a culture of secrecy because people were worried about getting sued—I don’t think there was disclosure of errors to patients.”

In 2003, Levinson published a seminal study exploring patients’ and physicians’ attitudes about medical error disclosure. Levinson’s work revealed a disconnect between patients’ wishes and physicians’ actions.

Patients wanted disclosure of all harmful errors as well as an apology and detailed information about what happened, why the error occurred, how the error’s consequences will be mitigated, and how recurrences will be prevented. By contrast, physicians often avoided stating that an error occurred, why the error happened, or how recurrences would be prevented.

Levinsons’ 2003 study also reported that physicians’ reluctance to fully disclose medical error and apologize was often driven by a fear of litigation and concern about fracturing trust in the doctor-patient relationship. However, patients wanted an explanation, not to assign blame, but to understand what happened and to ensure that actions were being taking to prevent future events. In fact, earlier research reported that patients commonly filed malpractice suits as a result of insensitive handling and poor communication following medical error, because they wanted to ensure that similar errors were not repeated.

An international focus on openness

Ten years later after the publication of her study, Dr. Wendy Levinson says things have changed.

Levinson points to numerous guidelines on medical error disclosure that have burgeoned all across the world. These include the National Quality Forum’s Safe Practices for Better Healthcare and Harvard’s When Things Go Wrong in the United States, the National Patient Safety Agency’s Being Open policy in the United Kingdom, and the Canadian Patient Safety Institute’s Canadian Disclosure Guidelines.

The latter guideline was updated in 2011 and highlights that “disclosure must occur if there has been any harm related to a patient safety incident, or if there is a risk of potential future harm.” Central to the guideline are the principles of openness, honesty and patient-centeredness. In fact, the guideline encourages health care providers to explicitly apologize for their errors.

Hugh MacLeod, the Chief Executive Officer of the Canadian Patient Safety Institute, also acknowledges how critical medical error disclosure is to the prevention of future medical errors. “We have to be as proactive at error disclosure as we are in the front end at preventing errors,” he says. MacLeod points to the Canadian Patient Safety Institute’s Canadian Incident Analysis Framework, which provides methods and tools to assist in analyzing patient safety incidents.

A dearth of data

Despite these gains, patient safety experts still don’t know much about physicians’ disclosure practices.

“How much has it percolated into practicing physicians?” questions Dr. Wendy Levinson, “I don’t know.” “How often do practicing physicians make a mistake and disclose?” she asks, “I don’t know.”

The truth is no one really knows. Of the limited research on the topic, most is qualitative or survey-based. A 2006 survey of 2637 medical and surgical physicians in the United States and Canada reported that 98% of physicians endorsed disclosing serious errors to patients; however, 22% of respondents disagreed with the need to disclose minor errors that were not permanent or life threatening. When physicians were asked how they would disclose errors to patients, only 42% would explicitly state that an error occurred, and the majority would not provide specific information about preventing future errors.

Estimating the level of physician engagement in error disclosure is challenging considering that most health care systems, including Canada’s, lack a medical error reporting system. Where these systems exist, most rely on voluntary reporting of medical errors, which only captures a tiny fraction of medical error. Indeed a 2012 report released by the United States Department of Health and Human Services found that hospital staff reported 14% of medical errors to incident reporting systems. Most importantly, these data cannot capture whether individual physicians actually disclosed errors to patients, or simply documented events anonymously to local reporting systems.

Disclosure in an evolving health care system

Engaging health care practitioners in error disclosure is made more complicated by the current clinical environment where care is often delivered by multiple providers across multiple settings. Because of this, when a medical error occurs, responsibility may not actually reside with one individual.

This phenomenon, combined with the rapid turnover of providers, especially in the inpatient setting, means that physicians may be required to talk with patients about other clinicians’ errors. However, existing guidelines on medical error disclosure fail to address this complex and increasingly common situation.

These trends have health care leaders calling for more institutional support and responsibility for medical error disclosure. Recently, Dr. Levinson participated in a working group of experts in patient safety who published recommendations for communicating with patients about other clinicians’ errors. The recommendations highlight the need for a “collective approach to accountability,” and stress the importance of “institutional leadership.”

“I don’t think this is just about the individual,” say Levinson. “Errors are a systems problem and disclosure requires institutional support.”

Part of this support will need to focus on educating clinicians how to disclose medical errors in a patient-centric and respectful manner, especially when the error involves other clinicians. Levinson says educational efforts should be intensified for medical trainees, since research shows they may not be prepared to meet patients’ expectations for the open disclosure of harmful medical errors.

“I would call this a sophisticated communication skill,” notes Levinson. “One could think of this as a higher level communication skill like breaking bad news, and we need to teach physicians these skills.”

Levinson also notes that while the physician may ultimately disclose an error to a patient and their family, it really is a team effort, especially when multiple providers are involved in an error. “It’s a team effort, this is not a solo endeavour,” she comments. “It’s how the institution handles mistakes and how they learn from their mistakes.”

“A redefined medical culture”

Monica Enderlin and her family never really learned what caused her father’s death. Although mention of a medical error was made, the family had many unanswered questions, and closure has not been reached on her fathers’ death.

“We really lost faith in the system,” reflects Enderlin.” When medical errors happen, you need to find out what happened not to assign blame, but because it becomes an avenue for healing the continued trust in the medical system.”

Despite a heightened focus on patient safety and an explosion of guidelines on medical error disclosure, real change may require a cultural shift. Dr. Brian Goldman, an emergency room physician at Mount Sinai Hospital in Toronto and host of CBC’s White Coat, Black Art, has been a vocal advocate for such a change.

In a 2011 TED Talk that has received nearly one million views, Goldman implores physicians to talk about their mistakes. At the conclusion of his talk, Goldman describes “a redefined medical culture” that embraces medical error disclosure:

“The redefined physician is human, knows she’s human, accepts it, isn’t proud of making mistakes, but strives to learn one thing from what happened that she can teach to somebody else. She shares her experience with others. She’s supportive when other people talk about their mistakes. And she points out other people’s mistakes, not in a gotcha way, but in a loving, supportive way so that everybody can benefit. And she works in a culture of medicine that acknowledges that human beings run the system, and when human beings run the system, they will make mistakes from time to time. So the system is evolving to create backups that make it easier to detect those mistakes that humans inevitably make and also fosters in a loving, supportive way places where everybody who is observing in the health care system can actually point out things that could be potential mistakes and is rewarded for doing so, and especially people like me, when we do make mistakes, we’re rewarded for coming clean.”