Patrick Cawley, executive medical director of the 656-bed medical center in Charleston, S.C., tells Lewis’ story at each new employee orientation. How the 15-year-old boy experienced belly pain after his elective surgery, how doctors saw him, and how his mother, Helen Haskell, tried to have his care escalated and how she believed that it didn’t happen. How he died from a perforated ulcer that caused internal bleeding. Lewis’ death started his mother on a patient-advocacy crusade to foster more transparency in hospitals, a journey she shares with other families who have undergone similar experiences.
It also led to changes at the medical center, which dedicated its medical-simulation training center in Lewis’ name, and ensures that all staff and medical personnel understand and foster communication. Creating a safety culture has become part of the hospital’s strategic plan. MUSC also more clearly identifies attending doctors, residents and medical students on name badges, a state requirement borne out of a patient-safety law also named in honor of Lewis.
“Any death like this is devastating not only to families, but to staff,” said Cawley, who wasn’t working at the medical center at the time of Lewis’ death. Cawley heard Lewis’ story from the former chief medical officer when he started on the job.
But for families and staff, a devastating experience lingers, unless all members involved take steps to talk about what happened and ensure something like that doesn’t happen again, Cawley said. It’s that step that seems to be difficult for some providers to take, however. The “urgency has to be there. I worry about the hospitals that don’t take advantage of it,” he said.
A constant concern
MUSC, affiliated with the Medical University of South Carolina, is one of a handful of hospitals that were involved in medical errors that have since become high-profile cases. Like Haskell, the family members have taken to telling their stories widely, hoping to influence policy and drive changes in quality and safety initiatives (Sept. 7, p. 6). While each settled their respective cases, the hospitals say the experiences represent lessons for the industry.
The experiences also represent how far the industry still has to go to achieve the level of openness that safety advocates call for. Three of four hospitals involved in well-known errors agreed to talk about safety at their facilities, although each declined to talk specifically about the cases that led families, including Haskell, to become advocates.
The fourth hospital, 442-bed St. Peter’s Hospital, Albany, N.Y., did not return several messages asking for an interview regarding the case of Justin Micalizzi. The 11-year-old died after a procedure to drain a septic ankle, and his mother, Dale, has become immersed in patient-safety initiatives nationally. She founded Justin’s HOPE and awards scholarships to medical students to learn more about compassionate care, and she works on safety initiatives with hospitals that have heard her speak about her experiences.
It is a bittersweet endeavor for all involved. Patient advocates are satisfied when they know their efforts are helping to ensure that medical errors do not happen to others, even while the pain of having lost a loved one never fades. And for providers that have had 10 years to focus on quality since the landmark To Err is Human report by the Institute of Medicine was released, errors and family accusations of neglect are painful reminders of how far there is still to go in improving care. Safety never goes away, MUSC’s Cawley said. “You’ve got to live it and practice it every day.”
Yet errors persist. The IOM report puts the number of medical error-related deaths at 98,000 a year. Recently, hospitals in California reported administering overdoses of radiation to patients receiving CT scans: Cedars-Sinai Medical Center in Los Angeles said in some cases patients received up to eight times the normal dose because of a computer error. That announcement prompted the Food and Drug Administration to issue an alert, which said some of the patients at 909-bed Cedars-Sinai experienced hair loss and skin rashes and reminded hospitals to monitor CT scan protocols and check dose readouts on machine control panels.
At Mad River Community Hospital, Arcata, Calif., a technician lost her license after conducting a CT scan last year on a toddler for more than an hour, in what should have been a procedure that lasted a few minutes. The state, which fined Mad River $25,000 for the incident, said in its investigation report that the 68-bed hospital did not follow its radiation policies and procedures.
And late last month, 635-bed Rhode Island Hospital, Providence, reported its fifth wrong surgery in the past two years when a doctor operated incorrectly on a patient’s finger. The procedure was corrected on the right site and the patient was discharged without other complications, according to a letter by hospital President and CEO Timothy Babineau, a physician.
“I fully endorse a culture that encourages open communication, personal accountability and responsibility in order for us to learn and provide the safest possible care for our patients,” Babineau wrote in the letter distributed to employees. “While these are difficult situations, and we all take them to heart, we know the only way we can improve is to continue to promote a culture of transparency and honesty.”
Research supports the idea of improved communication actually reducing lawsuits.
There’s no doubt that the persistence of errors is frustrating for providers. “No one wants to have a bad event occur in their facility,” said Jackie Aragon, senior director of quality in the risk and regulatory division of St. Joseph’s Hospital and Medical Center, Phoenix.
St. Joseph’s is acutely aware of what happens in the aftermath of an event. Several years ago a malignant tumor diagnosis from the hospital was not communicated to Sue Sheridan’s husband, Pat, who later died. Sheridan responded by helping to establish Consumers Advancing Patient Safety, or CAPS, which aims to help hospitals create specific plans of action for tackling diagnostic errors and miscommunication.
St. Joseph’s would not talk specifically about Pat Sheridan’s case, citing regulations under the Health Insurance Portability and Accountability Act of 1996, but the hospital has begun this year working with Sheridan to discuss how to improve communications between doctors and patients.
The patient voice “is the most important” in safety efforts, Aragon said. She recently delivered a joint presentation with Sue Sheridan, with both giving their perspectives of what had happened in Pat Sheridan’s case and how all sides could come together in the aftermath of an event.
Immediate, ongoing communication is key, Aragon said. Not answering a patient’s questions upfront “puts up a wall. You need everyone at the table.”
The 738-bed hospital involves patients in various procedures, including having them serve on advisory boards and committees. Clinicians also conduct safety rounds in which they ask patients and families how their hospital stay is going. Feedback from patients and employees through a safety culture survey are used to ensure the hospital is taking steps to prevent miscommunication and errors.
“You always have to say: Can this happen in our facility?” Aragon said.
And the answer is yes. While hospitals might be sharing more information, the part where providers listen to patients and families still isn’t happening, said Martin Hatlie, co-founder of CAPS and CEO of the Coalition for Quality and Patient Safety of Chicagoland.
He described a recent incident when a family called him asking for help in dealing with a hospital. A patient had fallen in a facility, but the hospital refused to listen to the family or accept any responsibility for the fall, Hatlie said. “I think they robbed themselves of an opportunity” to learn about their processes.
Listening to the families
When hospitals conduct investigations of errors without listening to patients, they aren’t building the whole picture, Hatlie said. Families can provide information that isn’t going to come from any other source in the hospital. “People are honest and sincere, and really want to make a difference.”
Indeed, making a difference has become Sue Sheridan’s longtime goal, and hospitals notice her efforts. Prior to her husband’s diagnosis, Sheridan and her family were involved in another event at St. Luke’s Boise (Idaho) Medical Center, where her son suffered brain damage known as kernicterus when his neonatal jaundice symptoms were unrecognized. Sheridan went on to establish the group Parents of Infants and Children with Kernicterus and help pass kernicterus-specific quality measures endorsed by the National Quality Forum. St. Luke’s has embarked on quality and disclosure initiatives.
A number of factors have culminated since that incident, which has led the hospital to develop a jaundice monitoring program that screens all newborns before discharge to determine whether there is an elevated level of jaundice and what the next step in the baby’s care will be, said Barton Hill, a physician who is CMO and vice president of medical affairs at the 566-bed hospital.
Hill, an emergency-room physician for 13 years before becoming vice president, acknowledged that sharing a personal connection with patients and families is not something that comes with the training. “When you’re changing culture, it’s overcoming history.”
But when something goes wrong, doctors do want to communicate that they are sorry for what happened. It’s not about connecting that feeling to culpability, but that’s what providers learn might happen if they apologize, he said. Now, as safety cultures are promoted in hospitals, it is getting easier to make a connection with families, but “it is certainly not at a point that it’s second nature.”
In the past five years, St. Luke’s has formalized a disclosure policy that calls for attending physicians to talk with families after care that resulted in unanticipated outcomes. It’s not an admission of guilt, and it’s not just about medical errors, but deals with any results that were unexpected, Hill said. That brings the human element back into patient care. “To do nothing about it is unconscionable.”
Hill pointed to an event last year. A patient died, and his family raised concerns that the hospital had not been responsive enough to prevent the death. One of the family members joined a hospital committee and helped to create a program dubbed Code H, in which families are allowed to summon rapid responders to the bedside. Despite concerns that the system would be abused, the hospital has not found an overuse of calls, and while the majority of calls are related to nonclinical issues, “it has also resulted in good catches,” Hill said.
One of the biggest barriers to communication is a fear of malpractice suits, Hill added. When an event occurs and hospital lawyers order providers to cut off contact with a family, “it’s extremely gut-wrenching.”