How to discuss AEs with patients and families
Establish a foundation of trust
To make full disclosure work, you first have to remember that it is not a “program” or an “effort,” or a “policy,” says a leader at one hospital that has undergone a major change in the way adverse events (AEs) are discussed with patients and families. Full disclosure is more of a philosophy and an overall way of working with people, says Julie Morath, RN, MS, chief operating officer and vice president of care delivery at Children’s Hospitals and Clinics of Minnesota in Minneapolis.
“If you want to be patient and family-centered, that requires a foundation of trust,” she says. “If our patients and families can’t trust us to be honest with them and tell the truth, to disclose when there has been an error, an accident, a failure in their care, I don’t think we can enter a true therapeutic relationship.”
Implementing such a philosophy takes time. Children’s spent more than a year carefully crafting policies and procedures and even choosing the right words to use. Some semantic differences proved important. For instance, Children’s asks “What happened?” instead of “Who did it?” after an AE.
The hospital also created an Office of Patient Safety that analyzes patient safety data and acts on reports from physicians and staff.
“It was important that they see that something happened to the information they took the time to report,” Morath explains. “We work from the premise that everyone comes to work to do a good job and do no harm, so we wanted to create an environment that values people who step forward to let us know about failure points or where they personally got tripped up.”
Disclosure policy prompts bigger change
Morath explains that the change began when the Children’s board of directors endorsed a policy of full disclosure to families as part of its overall patient safety agenda. The policy is designed to achieve these goals:
- Improve patient and staff safety by decreasing system vulnerability to future accidents.
- Evaluate and improve care provided.
- Reduce the chances for patient morbidity and mortality.
- Restore patient, family, employee, provider, and community confidence that systems are in place to assure future accidents are not likely to recur.
- Emotionally, professionally, and legally support staff who have been involved in events.
- Ensure disclosure of the accident, near miss, or sentinel event to the family, as well as ongoing communication of system improvements to family and caregivers involved in the accident.
When an event occurs, Children’s conducts a full analysis to understand the multicausal components that produced the conditions allowing the event to occur. Morath says that immediately following an accident or near miss, a “sequence-of-event” analysis is conducted.
“This is followed by a causal analysis study with all key stakeholders to seek to learn what contributing variables existed, and steps to take to eliminate system vulnerabilities and latent error that could realign to produce a future accident,” she says. “Formal procedures and resources are used to guard against blame, attribution, and hindsight bias — all of which are human tendencies in conditions of a devastating event.”
While maintaining confidentiality of the patient and providers involved, a case study is created to inform others about the risks so actions are taken to prevent such an event from happening again. That analysis is designed with these goals in mind:
- Understand what happened.
- Identify opportunities for improvement.
- Support caregivers, patients, and their families.
- Incorporate this learning into our daily work.
Morath says in the disclosure process, a presumption of truth-telling guides all discussions. Generally, the physician managing communication should presume all information that describes the specific event affecting a patient can and should be disclosed, with the exception of identifying the specific staff members involved in the accident, if unknown to the family.
The disclosure is a thoughtful, well-defined process meant to re-establish confidence and maintain a therapeutic relationship, she reports.
A key to the Children’s philosophy is that “disclosure is not a confessional,” Morath says. “This is not just an opportunity to get it off your chest so you can feel better. It is a professional activity. It has to be approached with the same knowledge base, skill, and discipline as any other intervention. Disclosure isn’t just an outpouring of one’s soul.”
The disclosure begins with an apology, possibly the most important part of the discussion, she says. From there, Children’s offers the patient and family as much information as possible and the assurance that more will be forthcoming as the investigation proceeds.
Physicians and staff are trained how to disclose, and senior staff such as Morath are available to either accompany others during disclosure or to conduct the disclosure if the other person is either too uncomfortable or unwilling.
“We don’t name names in the disclosure process by pointing the finger at someone like the nurse who just happened to be last person in a long line of system failures that made the accident possible,” she says. “We indicate what has happened, what the consequences to the patient are as we know them today, that an analytic review will take place, that the family will know the results of that review, and what changes will be made to reduce the probability that this will ever happen again.”
No punishment for reporting errors
Another important part of the disclosure philosophy at Children’s is the blameless reporting system. Simply promising employees that they will not be punished for reporting accidents is not enough, Morath says. They must see over time that you mean what you say.
Under the reporting policy at Children’s, staff members who promptly and appropriately report accidents to a patient’s immediate caregiver, manager, or Children’s safety office “will not be subject to retaliation and will receive the administrative support of Children’s in all matters relating to the accident. This does not require Children’s to protect staff members who engage in intentional acts of malfeasance that compromises patient safety.”
The hospital devoted a lot of time and resources to educating staff about AEs and the new system for reporting events and concerns. Targeted learning packets about patient safety were provided to leadership and clinical staff, and different packets for patients and families.
For staff, the safety guides reiterate the importance of moving from a culture of blame and secrecy to one of open communication and analysis of systems, Morath says. For families, the packets are intended to help them understand their role as partners in care, encouraging them to ask questions and participate in ongoing communication with caregivers.
Modeling its reporting system on the type used in the airline industry, Children’s adopted a new incident report the form of a “safety learning report” that is mostly text, rather than a series of questions or boxes to check off.
“You mostly learn about systems through the stories, what happened, what the conditions were at the time, and what you think could have prevented this,” Morath says. “One thing we learned was that near misses or vulnerabilities that are not dealt with can reconfigure at another time in a way that actually harms the patient. So we started asking ‘Have you ever seen this before?’ to help us become aware of recurrent problems.”
She notes that forms asking a person to check off boxes are good for data management, but not so much for learning. It’s a different kind of data analysis that is needed for improving patient safety, she adds.
“We have reading groups that do content analysis and abstract the patterns,” Morath says. “Once we land on an issue and create an improvement project, then we measure the data and analyze it. But the narrative description in the original reports is what shows the need for improvement.”
One example is how Children’s discovered that the lab was getting too many unlabeled specimens. Leaders were first alerted by the narrative reports in which staff explained that specimens were arriving without proper patient identification, and that prompted an investigation. The root cause turned out to be far upstream in the first- line patient identification, which led to an improvement project regarding the reliable identification of every patient, every time, with two identifiers.
“We’ve completely eliminated mislabeled specimens because the lab won’t accept them any more,” Morath reports. “The system depends on staff first alerting someone that something is wrong or could be improved.”
Commit to real culture change
Morath suggests that risk managers interested in embracing full disclosure more thoroughly “look far upstream.” The changes at Children’s required a wholesale revamping of philosophy at the hospital, not just the implementation of a new policy handed down by risk management.
The new approach is a culture change, along with some very practical skills training and tools for disclosure, Morath says. Staff and hospital leaders must be prepared for significant changes in their roles, she says.
Children’s found that a very traditional risk management, a legal approach focused mainly on limiting the liability of the organization, did not fit well with the new philosophy of full disclosure. That old-school approach did not promote a good relationship with the patient and family, at a time when they need your support.
“We really reconceptualized our risk management program here,” she says. “Protecting the assets of the organization certainly is critical, but even more important is protecting those we care for. We determined that we want legal counsel to advise us of our risk, but the malpractice risk and legal concerns do not form the philosophy or define the relationship with those who depend on us for care.”
To make full disclosure work, you first have to remember that it is not a “program” or an “effort,” or a “policy,” says a leader at one hospital that has undergone a major change in the way adverse events (AEs) are discussed with patients and families.
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