Hospitals and physicians are increasingly working together to be more forthcoming with patients about medical errors and other causes of bad outcomes.
After a procedure doctors said was extremely safe, something went terribly wrong. An otherwise alert and healthy patient isn't better and in fact, she's a lot worse. She's in a coma, or she may die, or at best, spend months in intensive care.
No one at the hospital explains to the patient's family what happened. Or why. Or how. It's a shock. The family thinks someone has screwed up.
Busy nurses won't answer questions, saying "you'll have to talk to a doctor." The doctors can't be found, or don't have much to say, or answer in vague, impenetrable jargon.
Enter frustration and anger. I know this because I've been in this situation with a loved one, getting crazier and angrier by the hour. And I know lots of others who have too.
"For a long time, organizations have really been in a 'deny and defend' mode," says Thomas Gallagher, MD, Director of the Hospital Medicine Program at the University of Washington Medical Center in Seattle. Gallagher, an internist who has had his share of these conversations, has spent the last 10 years working on the science and appropriateness of adverse event disclosure.
What should providers say and when should they say it? How much information is too much? What if no one is at fault?
And while healthcare organizations have written policies requiring disclosure, especially when a patient is harmed, how they implement those policies and what support they give to the communication process varies enormously, says Gallagher.
A few years ago, perhaps subsequent to language in the healthcare reform law and new emphasis on patient-centeredness and patient safety, acute care organizations "began to embrace the concept of being transparent, but were still struggling with its application. They had a commitment to being open, but the actual change we were seeing on the ground was, well, limited," he says.
Big Changes Coming
But the culture of disclosure is changing.
"We are really starting to see a transformation underway in terms of how healthcare institutions and malpractice insurers think about the response to a patient and their families after a medical injury," Gallagher says.
There are discussions in which providers now think it's right to use the word "apologize" or say "I'm sorry," and that evidence such words don't exacerbate litigation. On the contrary, if anger is what prompts litigation, then soothing that anger might thwart these issues going to the courts.
See Also: Doctors: 'I'm Sorry' Doesn't Mean 'I'm Liable'
Now the culture is shifting from silence and ignorance to conversation, dialogue, and discovery. And in talking with experts, I've discovered seven ways hospitals and doctors are working together to be more forthcoming about adverse outcomes, even before they know whether someone was at fault.
1. Disclosure Coaches
"Disclosure Coaches" are cropping up in hospitals across the country, from Brigham and Women's Hospital in Boston to Oregon's Patient Safety Commission.
These are nurses, lawyers, risk managers, or social workers or other physicians. They aren't the ones who have the conversations with the patient and family about the bad outcome.
Rather, "these are the people who have had special training to help healthcare workers get ready for the disclosure conversation," a kind of "just-in-time" support mechanism, Gallagher says.
For example, "if we have a surgeon in the operating room who experiences a significant complication with a patient, we would expect that, before they go talk with the family in the waiting room, they'd spend 10 minutes with a disclosure coach to talk a bit about what happened, [and] plan for that conversation with the family," Gallagher says.
Who trains the disclosure coaches? Training programs, like the one at the University of Virginia School of Medicine are popping up.
2. Peer-Reviewed Research
We're starting to see more scholarly articles exploring the topic...
In the New England Journal of Medicine, Gallagher and colleagues broached the topic of what obligations a physician has to disclose an error made by another practitioner, even if it means alienating a friend or network colleague. The paper concluded that clinicians should make efforts to involve the provider who made the error, even if that provider works at another institution.
Another article by Gallagher and colleagues in Health Affairs last year explored whether clinicians should offer compensation to affected patients and families at the point of disclosing the error, and whether that would impact the likelihood the patient would pursue litigation.
3. Standards and Guidelines
National organizations are developing prescriptive advice about how to disclose errors.
For example, last month the Agency for Healthcare Research and Quality awarded the American Hospital Association a contract to develop a comprehensive patient safety and medical liability communication and resolution toolkit [PDF] to "test a variety of efforts to improve patient safety and reduce medical liability costs through improved risk monitoring and communication with patients."
The National Quality Forum's "Safe Practice Disclosure" recommends that "following serious unanticipated outcomes, including those that are clearly caused by system failures, the patient and, as appropriate, the family, should receive timely, transparent, and clear communication concerning what is known about the event."
4. Institutional Responsibility
Gallagher says institutions are increasingly recognizing that it's not just the responsibility of the individual provider to have these conversations; it's the obligation of the institution.
"It really is the organization that has to have the policies, procedures, training, and support in place to make sure that disclosure conversations are happening when they should, and that they're going well," he said.
5. No- Fault Considerations
There's growing acknowledgement that disclosure and transparency should take place whenever something unexpectedly bad happens, regardless of whether anyone was at fault.
"A fair proportion of medical malpractice lawsuits originate from situations in which there has not been a problem in care, but [because] there was an unexpected outcome coupled with bad communication about it in the aftermath. The patient and family don't understand what happened. They can't get anyone to give them an explanation, and they feel like nobody cares."
6. Better Communication
"Organizations are realizing that what patients want from these situations is often much more than just words," Gallagher says. "We've made the mistake of putting too much focus on what we say to the patient, and not nearly enough on what are the actions that follow. What we are doing to keep this from happening again. And they want to see these changes implemented."
Some organizations are seeing bad outcome disclosure as a multi-step process of communication that evolves over many days or weeks, not just one conversation. First, few people remember details from the first conversation. Second, information about event may come in stages. Third, the family may have questions days or weeks after the initial conversation.
Gallagher says some hospitals will follow-up a verbal conversation with a written synopsis.
7. "I'm Sorry" Laws
This month Pennsylvania joined 30 other states with laws precluding a doctor's apology for a medical error or adverse event from being used to bolster a plaintiff's case in court. At least one study has shown that a policy of apologizing for medical errors leads to lower costs for healthcare organizations and does not invite malpractice suits.
Gallagher says there are still obstacles to appropriate adverse event disclosure. Frontline healthcare workers "generally don't have confidence that if they report an adverse event, it won't be held against them. That's a major impediment to getting people to report."
And, of course, that blocks any recognition that the outcome was related to an error that could have been prevented.
But overall, he says, change is well underway. "We're at the end of the beginning," he says, "just starting to see meaningful headway to assure that disclosure is the norm rather than the exception. And with the advent of some programs and national dissemination, I hope we'll see much faster progress over the next few years."