Sorrel King seemed small up on stage next to the two photographs of her daughter Josie, projected on a huge screen. In one shot, the brown-haired girl looked like she'd been caught in mid-giggle.
Most of the speakers at this Washington conference on patient safety last March were professionals, armed with statistics and Powerpoint presentations. Sorrel arrived with a few sheets of paper filled with words written in pain. She wasn't there to share research or discuss hospital policies. She was there to talk about the loss of her child.
"I am not a doctor or a nurse, and am by no means an expert in this field," she began. "I am a mother who has seen the darkest side of a hospital."
And with that, she told the story of Josie. While recovering from burns at the Johns Hopkins Children's Center, the 18-month-old died as a result of medical error. She had become so dehydrated that her heart stopped, but the staff had missed the warning signs.
At first, consumed with anger and grief after Josie's death nearly three years ago, Sorrel had wanted nothing more than to punish the hospital.
"What will we do with Hopkins," she wrote in her journal. "How can they get away with this. They must suffer. They must honor her memory. They must be responsible. They must feel the pain that we feel."
Then Sorrel King did something extraordinary. With her husband, Tony, she reached out to the very institution that had failed her family. The Kings offered their money, their time and a selfless commitment to help make Hopkins a safer place. They would never get what they most wanted - their daughter back - but they hoped to spare other families their tragedy.
Sorrel found an ideal partner in Peter J. Pronovost, a Hopkins physician and patient safety expert, whose father had been the victim of a medical mistake. Together, they worked to change the hospital, she from outside its walls and he from within. They began on the two floors where Josie had been a patient. But their goal became something grander, something that had never been done. They wanted to transform the culture of America's hospitals.
That day in Washington, with Pronovost on the stage beside her, Sorrel suggested to the audience a way to accomplish that.
"Each doctor and nurse must realize that they are fallible," she said. "That they must treat each other as equal partners when it comes to a patient's safety. That they must listen to each other, listen to the patient and listen to the parent. Only then will we have a solid foundation on which to build technologies and more perfect systems."
Though medical mistakes are a leading cause of death in the United States, most hospitals are only beginning to take measures to prevent them.
"The first reaction as a physician is to say, 'This would never happen at my hospital,' or, 'We can fix this with incremental change,'" said Dr. William R. Brody, president of the .
But protecting patients from harm will require much more. "We really need to redesign the whole system from the inside out," said Brody. "This is a revolution."
Since Josie's death, Hopkins has become a leader in improving patient safety and Sorrel one of the most visible advocates of the effort. Her story has reached thousands of people she has never met in places she has never been.
She has inspired changes that may save lives at an ICU in Connecticut, a critical care center in rural Georgia, a hospital halfway across the world in Singapore - and on the very floor where her daughter died.
"There's magic that's going to come out of this," said Dr. Charles N. Paidas, a pediatric surgeon at the Children's Center who directed Josie's care and became an integral part of the safety initiative named for her. "And I don't think anyone here would disagree: It's because of the family."
For Sorrel, campaigning for patient safety has been a calling she neither imagined nor wanted but whose responsibilities she fulfills with a dedication that at times surprises even her. A pharmacist at a 45-bed hospital in Nebraska recently thanked her and offered these words of advice: "Don't let the wind die down."
She doesn't intend to.
As she travels around the country, Sorrel says that families who have lost loved ones to medical mistakes want hospitals to do three things in the aftermath: Apologize. Tell the truth. And take steps to fix the problem.
In her case, Hopkins has done all three.
On March 4, 2001, the second Sunday after Josie's death, Dr. George J. Dover visited Sorrel and Tony at their Baltimore County home.
"This is my hospital. This happened on my watch. This is my responsibility. I'll get to the bottom of it," the head of the Children's Center told them.
It was a step that might make some hospital lawyers cringe, particularly in an era of mandatory "risk management" sessions - a common topic is how to avoid getting sued - and running debate over whether the words "I'm sorry" are tantamount to an admission of wrongdoing. But Dover wasn't there to deliver lines from the legal department. He believes that you can't be a good physician if you deliver only the good news. At least a dozen times after his hospital lost patients, Dover had made home visits to their families, including one whose child died of a missed infection while under his care.
Dover told the Kings that what had happened to Josie was a "sentinel event" - an unexpected occurrence resulting in serious injury or death. He said a committee would review, as required, what had happened and recommend ways to correct any problems. He assured them that the hospital would not try to cover anything up and offered to update them regularly on the status of the review. He even blocked out time between 9:30 and 10 every Friday morning to talk to Sorrel.
Sometimes the weekly conversations seemed to do more harm than good, Dover thought, compounding Sorrel's grief by making her relive the tragedy.
"There was nothing that I could say or do - nothing the hospital could do - that would compensate in any way for what had happened," said the 56-year-old specialist in pediatric oncology and hematology. "But somebody, I think, at least needed to listen."
Tony had gone back to work trading stocks at Wachovia Securities soon after his daughter's death; he dealt with his grief more privately, and resuming his daily routine helped. Sorrel's sorrow, by contrast, spilled out everywhere. She spent hours in her daughter's room, rocking in the chair, looking out the window and holding a plaster cast of Josie's hand that the hospital had given her. At night, she dreamed of Josie sitting in her car seat, drinking Gatorade and getting well.
She hoped that seeing a grief therapist would help her feel better. She thought the pain would lessen as time went by. She was wrong about both things.
At times, Sorrel wondered whether the family should have stayed in Richmond, Va., where their life had been so good. And she grappled with guilt over the accident that sent her daughter to the hospital. If she had only followed Josie upstairs that January night, Sorrel thought, she could have stopped her from drawing a scalding bath and climbing in.
The house seemed utterly quiet now, even with the noise from her other three children and the construction workers finishing an addition. Her mother, observing Sorrel's despair, felt that she hadn't just lost a granddaughter but her daughter, too.
"As each day goes by I seem to be sinking deeper and deeper into this place," Sorrel wrote in her journal. "Everything seems to be slowly fading. The sun is less bright. Food has less taste. What used to make me happy brings me no enjoyment. My body is a shell and someone who I don't know is in it and does the functioning part while I am going away."
Eventually, Sorrel moved the crib from Josie's bedroom and took her bookshelves down. She laid a new rug in preparation for 4-year-old Eva to move in, though she wasn't sure it was the right thing to do. The changes troubled her son, Jack, then 7. Rather than putting Josie's clothes away, he wanted to tape them to the walls of his room.
By June 2001, four months after Josie died, Hopkins had finished its review and told Sorrel and Tony what they had known all along: Josie's death had resulted from a total breakdown of the system. Three weeks into her recovery, the child had suffered devastating brain damage after her heart stopped because of severe dehydration. The medical staff hadn't responded appropriately to the warning signs - her precipitous weight loss, severe diarrhea, intense thirst and lethargy.
"The information was there, but no one really put it all together," said Richard P. Kidwell, Hopkins' managing attorney for claims and litigation, who handled the King case.
The committee that reviewed the death saw shortcomings in communication, including between the surgeons and pain team and between doctors and nurses, according to Kidwell. He said the caregivers should have listened more closely to Sorrel, who had repeatedly expressed worries about her daughter's decline, and investigated her concerns thoroughly.
"Nobody knows a child better than the parents," he said.
According to Kidwell, the committee concluded that the temporary agency nurse tending to Josie the day her heart stopped should have been more aggressive in alerting physicians to the child's symptoms. And after doctors removed Josie's central line - a tube in her chest used to administer drugs and fluids - they should have placed another intravenous line, the panel said. Resuscitation efforts after Josie's cardiac arrest were hindered without one.
"There was a breakdown of the system at multiple levels," said Paidas, Josie's lead physician, who still keeps a prayer card with her picture in his office. "I can't honestly put it together any more than that."
Indeed, what went wrong in Josie's case is at once simple and complex. In an age when doctors can perform near-miracles, transplanting hearts and performing surgery in utero, Josie's medical team seemed to have disregarded one of the most basic teachings of medicine: Study the patient.
Healing is not just a science involving mastery of anatomy or reliance on sophisticated machines. It is also a nuanced art, best practiced by making a physical connection with the person in the bed. William Osler, a Hopkins founding father revered as one of medicine's greatest physicians, was a master diagnostician able to pick up things that others missed - simply by observing, listening to and laying his hands on the sick.
"You need to examine the patient," said Paidas. "We get comfortable relying on machines and laboratory values."
What happened to Josie also demonstrates the difficulty of managing treatment in hospitals today. Caring for just a single patient involves dozens of people: doctors, doctors-in-training, nurses, respiratory therapists, pharmacists, lab and X-ray technicians and others. Multiply that complexity by 1,000: Hopkins has nearly that many beds. Medicine is an enterprise that can succeed only with collaboration. But few who spend their lives trying to heal others, Pronovost points out, are trained in teamwork.
Even after Hopkins acknowledged responsibility for Josie's death, Sorrel struggled with how to respond. One option was to file a lawsuit, which would have drawn national attention and tarnished Hopkins' reputation.
But the hospital had offered to settle the case out of court, and Sorrel's family believed that course would be easier on her than a protracted legal battle. The Kings' lawyer, Paul Bekman, began talks with Hopkins, even though the idea of accepting money for Josie's life disgusted Sorrel.
Some days, she couldn't contain her anger. On what would have been Josie's second birthday - July 1, 2001 - she phoned Dr. Amal Murarka, one of Josie's doctors, and told him that she should have been putting two candles in her little girl's cake. She told her lawyer she wanted to call a newspaper. She vented to her husband.
"She was so angry that she just wanted to do whatever she could to bring down Hopkins," Tony said.
Gradually, though, Sorrel and Tony reached a conclusion: Something good had to come from their family's suffering. Sorrel remembered a pledge she had made four days after her daughter's death.
"I will do something great for you, Josie," she had written in her journal. "Please help me find out what that is."
That something great, the Kings decided, would be to help make Hopkins a safer institution. Perhaps other hospitals, which view the Baltimore medical center as a model, would change too.
"I realized the huge reputation that Hopkins has: It's the best hospital in the world," Sorrel said. "I also realized they would listen to me."
They reached a settlement with the hospital in August 2001 for an amount neither party will disclose. The Kings planned to put some of the money back into the Children's Center. Signing the papers didn't mark an end; it marked a beginning.
"The kind of anguish and bitterness that they were entitled to can consume you," said Dr. David M. Cromwell, a Hopkins gastroenterologist and family friend. "And they worked through that, which was probably the first small miracle in this story."
In Josie's memory
Sorrel didn't want to memorialize her daughter with a garden or a statue or an annual lecture in Josie's name. She wanted nothing short of changing the hospital. And, as it turned out, Hopkins' point man on patient safety already was trying to do just that.
Sorrel met Pronovost a short time after the settlement. It was an obvious match, but no one had thought of it until Cromwell heard the physician speak at a mandatory risk management meeting. Often, Cromwell said, such sessions involved lawyers talking about what to do after something had gone wrong. Instead, here was a doctor talking about ways to prevent problems.
Pronovost called Sorrel and told her about his research. He met her and Tony at their house. When Sorrel showed him pictures of Josie, he cried. She looked a lot like his own daughter. "It could have been her," he thought.
The 38-year-old anesthesiologist and critical care specialist had an unusual passion about preventing medical mistakes. Sorrel soon found out why: When he was a fourth-year medical student at Hopkins, his father died as the result of an error made at a Connecticut hospital. His father's lymphoma had been misdiagnosed as another cancer and, for years, he did not receive proper treatment. He died at home, writhing in pain, weighing only 80 pounds.
"Sorrel and I both felt this very strong commitment that patients deserve more," said Pronovost. "I think that really kind of solidified our bond. We felt like kindred spirits, that we were on a mission together."
Sorrel realized she had found a partner.
"I was drawn to him because I had not met anyone - any doctor or anyone ever - that understood what we were going through," she said.
Pronovost was candid about the mistakes and near-misses he had seen in his own institution. He had once removed a breathing tube from a woman who, it turned out, couldn't breathe on her own, and suffered brain damage. She eventually recovered, but the experience shook him.
It would take almost a year to arrange the details of the Josie King Patient Safety Program. Funded in part by an initial $50,000 contribution from the Kings, the effort consisted of two teams at the Children's Center that would identify safety problems and devise ways to prevent them.
Launching the program in September 2002, Pronovost introduced Sorrel at a pediatric grand rounds in Hopkins' Hurd Hall. It was standing room only; the auditorium was packed with doctors, nurses, pharmacists, even the hospital president, Dr. Edward D. Miller. Tony was in front, while a few friends sat farther back with Sorrel's parents and sisters, Mary Earle and Margaret. Beside Margaret was Paidas, who had proudly said yes when Sorrel asked him to participate.
Just being in the hospital again was draining. But Sorrel knew that the people she was about to address were the very ones who could lead the way in making medical care safer.
"Hospital errors are a man-made epidemic," she told them. "Doctors and nurses make mistakes, and lives are being lost. These human errors need a human solution. You are the only ones that can solve this problem," she said.
"I have known I would one day find the strength to share this story with you," Sorrel continued. "My precious memories and everlasting love for Josie give me this strength, and I will not rest until we make something good come out of her senseless death. I am not asking for your pity. I am asking for your help."
Losing Josie had changed Sorrel's life, but her speech that day altered it once more. Over the next 15 months, in between carpools and spinning class and taking her new son, Sam, to music, she would tell her story over and over, often with Pronovost at her side.
She has traveled to medical conferences in Boston and New Orleans, Washington and Chicago, and been invited to speak in Mexico and the Netherlands. She has addressed medical students at Hopkins and launched a Web site, josieking.org. She has shipped more than 100 videotapes of her speech all over the world; a doctor in Jerusalem even translated her story into Hebrew.
The Kings have funneled more of the settlement money to Hopkins and raised an additional $200,000. Large and small, the contributions have come from family and friends, colleagues and strangers. Sorrel's brother ran a marathon in Josie's name in April, collecting more than $1,000 a mile in donations.
Sorrel has been working with Hopkins to make safety as much a part of the curriculum at the medical and nursing schools as basic science, and her brother-in-law, Jay King, has created a Web-based patient safety program with Pronovost. Hopkins plans to test the initiative soon, and Sorrel and Tony hope hospitals across the country will one day use it.
"We're just really getting started here," Tony said.
It has taken a long time, Sorrel says, to build relationships with people at Hopkins and convince them that her intentions are good. She says she doesn't blame anyone for Josie's death; she blames a flawed system.
"It's not about me hating hospitals or people like me hating hospitals," she says. "The bottom line is, the hospitals want help."
Those who know Sorrel credit her with spurring others to improve their institutions. "There are certain people in this world that are mentors, that spark enthusiasm, new energies in people," said Paidas. "And Sorrel's that kind of person."
Hopkins leaders say their hospital is different now because of Josie's death and her mother's campaign. "That was one of the most important catalysts to move us forward to try to change the culture of safety," said Dr. Beryl Rosenstein, vice president of medical affairs.
He and others at Hopkins acknowledge that change comes slowly and that their work is far from done. "My expectation is that no child should die from a preventable cause in the Children's Center or any hospital," said George Dover, the pediatric center chief. "I don't think we'll ever reach perfection, but that ought to be our goal."
When Hopkins launched its review of Josie's death, Dover wasn't looking for someone to blame. He was looking for deficiencies in the hospital's system that had allowed failures to align.
Though there are, of course, caregivers whose mistakes are theirs alone, the fundamental premise of the safety movement is that people don't fail - systems do. Patients are almost always injured not as a result of a single lapse, but when a series of them occur. The aim, then, is to anticipate mistakes and build in enough safeguards to insulate patients from harm.
"Fallibility is part of the human condition," said Pronovost. "Our goal is going to be to make care harm-free. It is not going to be to make care error-free."
Other industries in which mistakes can take lives, including aviation and chemical manufacturing, have taken leaps in improving safety, in part by adopting this principle: All injuries are preventable. Those industries enforce standards, require that accidents be reported and investigate why errors occur and how to prevent them.
Anesthesiologists pioneered those ideas in medicine by standardizing equipment and setting guidelines - including pre-anesthesia checklists much like those that pilots use before takeoff. As a result, the mortality rate from anesthesia use has plummeted over two decades.
But broader change has yet to take hold in U.S. hospitals, even after the Institute of Medicine, a government advisory group, estimated in 1999 that 44,000 to 98,000 people die from medical mistakes every year. Experts say errors - many of them unacknowledged to patients - continue to be tolerated in hospitals every day.
"We're constantly working in broken systems," Pronovost said.
Repairing those systems requires identifying the underlying problems - and that can't happen unless people speak up. Hospitals need to create a climate where fallibility isn't treated as an offense, Pronovost and others said. Until then, doctors and nurses may still hide mistakes for fear they'll be fired or sued.
"In our industry, the first questions are, 'Who did this?' and, 'Why did they do this wrong thing?'" said Dr. Donald M. Berwick, president of the Institute for Healthcare Improvement and a pediatrician at Boston Children's Hospital. "We have cultures of secrecy and hiding and blame."
Hospitals must also convince caregivers that there can be no hierarchy when it comes to safety. The patient or worried parent should be heard. And the voice of the nurse, the resident, the pharmacist and the technician must be as welcome as that of the most highly skilled surgeon.
"I want everybody in the hospital empowered to be able to pull a cord and stop the assembly line when they see something unsafe," Brody said.
However incrementally, the push for change has begun. With no federal agency regulating hospitals, nearly half the states now require that hospitals report "adverse events" - injuries, including those caused by errors, resulting from medical treatment. Maryland will do so beginning next month. The goal is that regulators investigate incidents, identify patterns of mistakes and require hospitals to take corrective action.
Hopkins, in a safety initiative launched before the Josie King program, is trying to change practices everywhere in the hospital, from the emergency room to the pharmacies to the president's office.
Medication errors are the most common type of mistakes in hospitals. Seven percent of patients are affected, and nearly all intensive-care patients, according to Pronovost. From the time a Hopkins doctor writes an order to the point where a patient takes the medicine are more than 100 steps - each an opportunity for error.
When Hopkins finishes phasing in a new computerized ordering system, physicians will be able to put prescriptions - 3,000 daily at Hopkins - directly into the computer, rather than have pharmacists decipher and enter them. If a doctor orders an incorrect dosage or a drug to which a patient is allergic, the system - loaded with key data about that patient - will reject it. In addition, Hopkins has required more stringent checking of medications. Before giving patients insulin and chemotherapy drugs, for example, two nurses must independently verify that the dosage, schedule and method of delivery are correct.
Hopkins is also trying to reduce hospital-acquired infections, which result in about 88,000 deaths a year nationwide. If staff members fail to wash their hands or affix a surgical drape properly, they can pass on bacteria to patients. Faced with what Pronovost called an "embarrassingly high" infection rate in patients getting catheters, Hopkins instituted a simple safety checklist for doctors; nurses are to call off the procedure if any steps are skipped. The infection rate has dropped as a result.
At the same time, Hopkins has revolutionized the age-old practice of rounds. Instead of including only attending physicians and residents, they now involve nurses, respiratory therapists, pharmacists and others in some units. The group uses a printed form that prompts them to discuss safety risks, among other issues. The sheet, which has been adopted in hundreds of hospital intensive-care units, hasn't just improved communications; it has reduced complications and helped cut in half the average length of stay.
To demonstrate the hospital's commitment to safety, Brody, medical school dean Edward Miller and other hospital executives each have adopted an ICU. They stop by the units each month, asking about potential hazards. On one visit, a staff member told Miller that the unit didn't have a needed pacemaker. One arrived the next day.
The Children's Center made several changes recommended by the panel that reviewed Josie's death. A pediatrician now joins the team of doctors caring for surgical patients. Staff members collaborate closely with the specialists at Johns Hopkins Bayview Medical Center in treating burn victims like Josie. Beds have been added to the pediatric ICU to accommodate more children.
The center has taken other steps to protect its young patients. The Josie King teams have addressed everything from missing identification bracelets to incomplete patient admission forms to outdated "drug cards." If a child's heart stops, the bedside cards help doctors know immediately what dosages of medicines to give. After 5 percent of cards in the pediatric ICU were found to contain errors, the unit began using a computer to generate them.
Experts believe it is possible to eliminate the vast majority of injuries to patients, which would save at least 100 lives a day in the United States. But fulfilling that central tenet of medicine - "Do no harm" - will take a radical shift.
"Cultural change does not occur by turning a switch," said Miller. "It's something you decide is going to be one of the top priorities of the institution, and that's what we have taken on."
With their youngest son, Sam, less than a month into his "terrible twos," the Kings are again a family of six. Life is filled with soccer games and science projects and spaghetti dinners. It is different for all of them without Josie, but Sorrel can be happy again, a feeling she once thought would never return.
For the first time since Josie's death, Sorrel had fun this fall trick-or-treating with the children, who dressed as a lacrosse player and a devil, Batman and a bumblebee. And rather than dreading Christmas, she is almost as eager as her children. Finally, the joys of the holidays - hanging stockings, making gingerbread houses, watching The Sound of Music - will not be forced.
There are days, of course, when the pain of missing Josie still makes Sorrel ache. For Eva's sixth birthday, in June, she asked for Josie to come back. When Sorrel told her that couldn't happen, Eva protested: "All birthday wishes come true."
Along the way, Sorrel has questioned whether her partnership with Hopkins has demanded too much.
"I want all of you to know it has been hard to do the right thing," she wrote to Dover and others last Christmas Eve. "I want you to know that every time I walk into your hospital I have to concentrate very hard so that I don't break down into a heap of sobbing tears.
"There are days when I ask myself: Should I walk away from this hospital and close the doors? ... Should I continue to work so hard when it is so painful? Why am I giving so much to the very hospital that took Josie from me?"
Now, as she sits at her computer in a nook where her children's pictures brighten the wall, she reads the messages that remind her of the need to continue her work. Doctors and nurses share details about their patient safety projects. They ask for guidance, offer help. One Friday night last winter, a nurse from Texas who had learned of Josie's story called just to hear Sorrel's voice.
She still dreads getting up before audiences. And she hates leaving her family to hop on a plane.
But that promise she made to her daughter - I will do something great for you, Josie - is one she means to keep.