It was a fourth of July weekend but Sharon O’ Brien, an intensive care physician, was not celebrating. A medical error earlier landed a patient in her ICU. The patient eventually died — and she had to decide what to tell the patient’s family.
Should she apologize? How much detail should she share about the mistake? Would a frank discussion put the hospital at risk of a lawsuit?
“I had never really been in that situation before,” said O’Brien, recalling the 2004 incident. She decided to tell the patient’s family about the error, bracing herself to face their anger. While the family was stricken by grief, they appreciated her honesty.
“I spent a lot of time with the patient’s family supporting them and explaining what had happened, and yet I felt so unsupported in that experience,” said O’Brien, a physician at MedStar Georgetown University Hospital.
Hospitals have traditionally been reticent to disclose to patients or their family members the specifics of how a medical procedure didn’t go as planned for fear of malpractice lawsuits. In recent years, though, many are beginning to consider a change. Instead of the usual “deny-and-defend” approach, they are revamping their policies to be more open.This KHN story also ran in USA Today. It can be republished for free (details).
To help them move in this direction, the federal Agency for Healthcare Research and Quality released in May an online toolkit designed to expand the use of the agency’s “Communication and Optimal Resolution” process, which establishes guidelines for adopting more transparency in communicating adverse events.
Hospitals’ interest in this approach has been fueled by studies showing that patients want to know when an adverse event has occurred and doctors suffer from anxiety when there are restrictions and concerns about what they are allowed to discuss. Some studies have found that patients are more likely to sue when they perceive that there is a lack of honesty.
MedStar Health, which is among the largest health providers in Maryland and the Washington, D.C. region, has been one of the pioneers in setting up such programs at all of its 10 hospitals. In 2012, it launched standardized program based on AHRQ’s guidelines across the system that drew on similar initiatives that were already in place at its various facilities. O’Brien was one of the first to sign up as a volunteer at Georgetown University Hospital.
The initiative established a standardized approach for physicians when they have to communicate with patients and family members about adverse events. A team of physicians — called the “Go Team” — complete a four-hour initial training program and then annual booster courses every six to eight months to prepare them for these conversations and also to help other staff physicians who confront the problem. After that, Go Team members are on call 24/7 to provide guidance. Another program, “Care for the Caregiver,” provides psychological support to other physicians as needed.
One of central elements of the training program for the Go Team involves role-playing exercises with professional actors who simulated patient scenarios. O’Brien remembers clearly one session when she had to confront actors portraying patient’s family almost hysterical with anger. The patient had suffered from severe burns due to a fire in the operating room.
“It’s scary to be in that room even though I knew it was a simulation,” she said. It was helpful, “in terms of preparing for the family’s emotions … and making sure they get the information that is needed while acknowledging that they needed to express their emotions.”
The exercises are uncomfortable and incredibly personal, O’ Brien said. Through the training sessions, she learned about the importance of being honest upfront, expressing empathy and apologizing.
MedStar is not the only hospital system implementing the system. Since 2012, second-year medical students at Johns Hopkins University are required to learn how to disclose adverse events in their patient safety classes by participating role-playing exercises. Several Harvard teaching hospitals also have coaching models similar to MedStar’s.
Part of the motivation for David Mayer, vice president of quality and safety for MedStar Health, to establish open communication programs came from his personal experience about a decade ago when he was the co-executive director at the University of Illinois Institute for Patient Safety Excellence. Back then, he and his colleagues were frustrated with the tension between doctors, patients and the amount of lawsuits the hospital had to field from patients who wanted to know more.
“We felt horrible that we couldn’t openly talk to patients and families … our attorneys would tell us we can’t do that because we’re going to give them all the information that will cause us to lose a lawsuit,” he said. “There were no winners.”
After a colleague brought the issue to the attention of that hospital’s board, they began working on a better system, said Mayer, who participated in the development of AHRQ’s guidelines. And when Mayer arrived at MedStar he continued working on this mission. The results he has seen reflect a hospital culture shift.
“Instead of shutting down conversations with patients, we want to respond to them immediately, we want to share everything we can with them,” Mayer said. “Many times when they get their questions answered in an open and honest way, they realize a lawsuit wasn’t really necessary.”
Mayer said by emphasizing transparency and creating an open environment, the doctors have been able to learn from past events and improve their performance. At MedStar Health, he has seen a 60 percent reduction in serious safety events in the past four years.
But the openness also has a cost. The hospital might have to pay for remedies, such as waiving medical bills, if a patient believes the hospital was at fault.
Mayer recognizes that there are still many hospitals who go by the “deny and defend” approach.
“There are programs that say they’re doing it when they’re not really doing it, they’re not waiving bills, they’re still charging the Centers for Medicare & Medicaid Services and third party payers for the mistakes,” he said. “There are a lot of people making money off denying what is technically right for the patient.”
MORENO VALLEY, Calif. — Alfredo David lay in bed, looking deflated under an Avengers blanket, as a doctor, two nurses, and medical interpreter Veronica Maldonado entered his hospital room. He wrapped up a call from his wife, then fiddled idly with his phone.
He had received distressing news from the team at the Riverside University Health System Medical Center: His sharp abdominal pains and difficulty eating, previously diagnosed at another hospital as gastritis, were actually caused by metastatic cancer. The tumor was growing. David, 45, was not going to recover.
Maldonado pulled up a chair for herself and another for palliative care specialist Dr. Faheem Jukaku, and the two sat at David’s eye level. Pointing to an MRI image of David’s abdomen, Jukaku explained in English how surgeons would attempt to ease his symptoms the next day. Maldonado translated Jukaku’s words into Spanish, modulating her tone of voice to match the doctor’s delivery.This story also ran in Stat. It can be republished for free (details).
David listened — seeming resigned, but grateful that some relief might be on the way. Occasionally he’d ask a question in Spanish about the procedure, which Maldonado translated back to Jukaku. Asked about his earlier misdiagnosis, he rolled his eyes.
David, a mechanic and father of three teenagers, understands some English. But he said Maldonado’s help had been crucial to deciding on his new course of treatment. Thanks to her, he said in Spanish as she translated, “I don’t have any misunderstandings. I’m more at peace.”
Interpreters routinely help people who speak limited English — close to 9 percent of the U.S. population, and growing — understand what’s happening in the hospital. They become even more indispensable during patients’ dying days. But specialists say interpreters need extra training to capture the nuances of language around death.
Many doctors and nurses need the assistance of interpreters not only to overcome language barriers but also to navigate cultural differences. Opportunities for miscommunication with patients abound. Words don’t always mean the same thing in every language.
Medical staff, already nervous about delivering bad news, may speak too quickly, saying too much or too little. They may not realize patients aren’t comprehending that the team can no longer save their lives.
“That’s when it gets interesting,” Maldonado said. “Does the doctor understand that the patient isn’t understanding?”
At Riverside and some other hospitals, interpreters have completed special training and work closely with palliative care teams to help patients and their families decide when the time has come to stop trying to cure a disease and start focusing on comfort and quality of life.
Palliative care is unusual among medical specialties, said Dr. Neil Wenger, an internist who is chair of the ethics committee at the UCLA Medical Center. Rather than curing or eliminating disease, its purpose is to manage symptoms for patients who are not expected to recover.
Physicians and nurses talk at length with dying patients and their families about their wishes, collaborating with social workers, chaplains and hospice workers. Under any circumstances, the clinical shift from curing disease to treating symptoms can be difficult for doctors and patients. Advance care planning — a process used to help patients understand their prognoses and explore preferences for future care — is more like psychotherapy than a routine medical consult, Wenger said.
“This is not a straightforward set of questions,” he said. “You ask a question, and the next question is dependent on the response. It’s very easy to use the wrong words and startle the person and put them off. It’s a dangerous conversation.”
When there’s a language or culture gap, Wenger added, the interaction becomes much more difficult. Both sides can fail to recognize important nuances, such as body language and variations in the meaning of words.
Wenger said that he finds it hard to speak with patients about palliative care through an interpreter because, in his experience, unexpected turns in the conversation and difficult emotions can literally get lost in translation.
Others say that interpreters are key for helping patients make sense of palliative care — that they just need extra training to be good at it.
Kate O’Malley, a senior program officer at the California Health Care Foundation, said she started thinking about interpreters when the Oakland, Calif.-based foundation funded new palliative care programs in safety net hospitals throughout the state. It found that vast numbers of patients did not speak English as their primary language.
At Los Angeles County-USC Medical Center, for instance, 68 percent of palliative care patients in 2011 spoke a first language other than English. At San Francisco General Hospital, that number was 45 percent; at Riverside County Medical Center, 33 percent.
“One of the key tenets of palliative care is to have goals-of-care discussions,” O’Malley said. So when patients speak a different language, “How do you do that?” Her team found that palliative care providers sometimes brought in interpreters to assist, but that many of them didn’t have the knowledge, training, or vocabulary to convey key concepts.
Take the idea of hospice, the comprehensive palliative care services available to patients in their last months, often at home. For people from Mexico, the Spanish equivalent hospicio “conjures up the image of the worst nursing home you could ever imagine, where people are disabled and left for dead,” said Dr. Anne Kinderman, who runs the palliative care service at Zuckerberg San Francisco General Hospital. “If I come into the room and say, ‘I’m here to tell you about this great thing called hospicio,’ there’s a cognitive disconnect,” she said.
Interpreters have to learn how to bridge that gap. “You have to know how to present [hospice] in Spanish,” said Viviana Marquez, supervisor of the department of language and cultural services at Riverside, and Maldonado’s boss. “It’s not a matter of finding an equivalent word, because there is none. You have to get into a deeper explanation.”
Without that kind of clear communication, many Latino families never understand that hospice isn’t a place but rather a suite of comfort-focused extra services, available at home, that relatives usually can’t provide on their own, said Beverly Treumann, a medical interpreter in Los Angeles who now works as head of quality assurance for the Health Care Interpreter Network, an Emeryville, Calif.-based cooperative that lets member hospitals share interpreters through videoconferencing.
Treumann said she once trained an interpreter who had refused hospice for her own mother because of such a misunderstanding. “This interpreter, she was heartbroken,” Treumann said. “The family took care of the mother — but without the extras that hospice could provide. The mother suffered because the concept wasn’t explained adequately.”
Cultural differences can breed other misunderstandings too, Kinderman said. Families from many parts of the world approach health care decisions as a group. That can make a palliative care concept like a health care proxy — a person who makes medical decisions when a patient becomes incapacitated — hard for them to grasp.
Hoping to bypass all these potential minefields, the California Health Care Foundation recruited Kinderman and other experts to help develop a palliative care curriculum for interpreters.
It introduces the palliative care concept, defining terms and providing vocabulary to help interpreters accurately convey key ideas. It encourages interpreters to alert physicians when they suspect a patient and his family don’t understand what they are told. It also includes materials to help interpreters deal with their own complicated emotions during palliative care encounters.
Marquez said that all 10 of the Riverside medical center’s interpreters have completed some version of the curriculum, which is taught in person or on the web.
For Maldonado, who has been interpreting for about five years, working with palliative care patients has become a passion.
She attends the palliative care team’s weekly meetings, working closely with staff and patients. If Maldonado is around when a difficult conversation arises, she’s the first person Marquez sends to interpret. If Maldonado or another interpreter who is comfortable with palliative care work is not available, Jukaku said, “we try to postpone the talk.”
Last year, Maldonado taught a palliative care training course for interpreters. The session, held at the Moreno Valley hospital, attracted around 50 participants from throughout Southern California.
The participants wanted to talk about terminology and “vicarious trauma” — the emotional toll that interpreting for palliative care patients can take. They shared self-protection techniques. Marquez recommended using the third-person voice instead of the customary first person: rather than directly translating the doctor’s words and saying “I recommend,” an interpreter might create emotional distance for herself in difficult moments by saying, “your doctor recommends.”
Maldonado said she, too, has trouble sometimes containing her feelings when families are distraught or have trouble accepting that a patient may soon die. “Later in the day I say, ‘Oh my God … can I vent?’ I have to vent.”
But Maldonado also noted that raw emotion from the families means she is doing her job well.
“When we get the tears and the reactions,” she said, “we know we’ve rendered the message.”
KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.
This week at CBPP we focused on family income support, state budgets and taxes, the federal budget, food assistance, housing, and health care.