“Sorrel King took the tragic death of her daughter and used it to transform the culture of the nation’s top hospital—and ultimately the entire world of medicine. Her unique combination of selflessness, passion and stubborn refusal to accept the status quo was just what the doctor ordered in the face of tens of thousands of deaths from medical mistakes every year.” —Dr. Robert Wachter, Professor of Medicine, University of California, San Francisco and author of Understanding Patient Safety

“What started out as a small endeavor is now a nationally recognized organization dedicated to increasing patient safety and eliminating medical errors . . . King is an outspoken advocate.” —Ginger Adams Otis, New York Post

“The book is part indictment, part celebration and part catharsis’King carries a powerful message of an institutional failure that affects hospitals as much as any other institution: communication.” —Bill McKelway, Richmond Times-Dispatch

“Josie’s Story underscores a reality that we are too often encouraged to forget: doctors and nurses are just human and make mistakes . . . Parents, read Josie’s Story.” —Maria Andreu, The Star-Ledger (Newark)

“King is an extraordinary woman, who took a paralyzing event—the medical accident that killed her 18-month-old daughter, Josie—and turned it into a national crusade. . . . In this moving, never preachy or strident memoir, she recounts Josie’s experience, the evolution of the foundation, and the principles of the so-called Comprehensive Unit-Based Safety Program (CUSP) in practice today in hundreds of hospitals, thanks to Josie and her mom.” —Donna Chavez, Booklist (starred review)

“This painful but inspiring memoir is a compelling drama of family grief amid the dysfunctional U.S. health care system.” —Publishers Weekly

“King excels in capturing small moments freighted with poignancy: her older children refusing to kiss their unconscious sister goodbye before her life support was turned off, her memories of Josie spilling juice (I would lean over and wipe it up, never realizing how lucky I was’). Eschewing literary stylishness, King tells her story with a straightforward style that makes it all the more powerful.” —Kirkus Review

“Sorrel King is a heroic figure in the healthcare safety movement. Josie’s story and Sorrel’s determination are making care safer for millions of patients. At its core, this is a powerful and immensely moving love story.” —Charles Kenney, author of The Best Practice: How the New Quality Movement is Transforming Medicine and Quality and Safety Consultant to Blue Cross Blue Shield of Massachusetts

“Through her passion and her pain, Sorrell’s story has been successful in transmitting a message of urgency for improving safety. She teaches us that listening is as important as doing, reminding us that our learning is a journey, and that our true teachers sit in front of us in hospital beds and on exam tables each day.” —Dr. David Shulkin, President and CEO, Beth Israel Medical Center, and author of Questions Patients Need to Ask

“Sorrel King has single handedly turned a tragedy into a crusade to improve the quality of care delivered in hospitals throughout the country. I am confident that she has saved countless lives by sharing her story and challenging physicians and administrators to critically examine how they provide care. She made a difference for our children’s hospital and we are forever grateful.” —Craig Cordola, CEO, Children’s Memorial Hermann Hospital of Houston, TX

“Josie’s story has served as a beacon for me and thousands of other healthcare professionals. Fortunately, we were blessed that the love and commitment of her mother and larger family has focused on ensuring the safety of millions of other patients. Their understanding of the intrinsic vulnerabilities of the healthcare system have made us partners in this critical work.” —Dr. Louise Liang, former Senior Vice President, Quality and Clinical Systems Support, Kaiser Permanente and Former Chair, IHI Board of Directors

“A riveting and poignant account of the impact of preventable harm in our health care system. It should compel us to wait no longer to transform the places where medical care is provided.” —Rosemary Gibson, author of Wall of Silence and Senior Program Officer at the Robert Wood Johnson Foundation

“Jack, let Relly figure it out. She’s almost got it,” I said, as I pulled the dark blue Suburban up next to the Explorer.

“Big Rel! It says Big Rel. That’s Big Rel’s car. Big Rel is here!” he blurted out.

“Big Rel, that’s right!” Relly added excitedly, as she struggled to climb out of the car. She and Jack raced to the house as three year-old Eva trailed behind trying her best to keep her blue fleece blanket up off the ground with one hand, while sucking a finger on her other. I unbuckled seventeen month old Josie from her car seat and followed them into the house, carrying all of the backpacks, coats and snack wrappers that they had left me with. My mother, or Big Rel as the children had nick-named her, had surprised us with a visit.

My mother was, and still is, a beautiful woman. In her younger years people said she looked like Jackie O. Some said she was prettier. “I know I should have called,” she said, bending over to hug the children, “but Pop was out of town so I thought I’d drive up and see what you guys were up to,” she said, taking Josie from me. The children sat on the sofa with their grandmother and began telling her about their new school, their new bedrooms and how I had let them paint the old kitchen cabinets before the workmen took them out and put them in the Dumpster. “We don’t have a kitchen anymore,” Jack said.

“We get to go out to dinner all the time,” Relly added as Eva, still sucking her finger and holding her blanket, wedged herself onto Big Rel’s lap next to Josie who tried unsuccessfully to push her away.
She had not been to see us since we had started renovations on the old green-shingled farm house we had chosen as our new home. The house was in terrible shape, but we decided that with some work we could turn it into something a family of six could actually live in. I gave her a tour, pointing out where new walls would be going, where doors and windows would be placed and where the new kitchen would be. She carried Josie, stepping over two-by-fours and piles of plywood with Jack, Relly and Eva following behind. “This looks like more work than building a house from scratch,” she said. “How on earth are you going to live like this?”

“Let’s just finish the tour,” I said, leading her through the framing of the family room, mud room and bathroom.

We showed her the old, still-intact dining room, which was now serving as kitchen, family room, dining room and play room.

“Isn’t this nice and cozy,” I said, as I began laying kindling and logs in the fire place. “It’s like living in a cabin.” I struck a match and lit the fire.

“How long will this take?” she asked.

“I don’t know, six months or so.”

She looked suspiciously at the make-shift stove and the milk crates filled with flour, sugar and cereal boxes; I recognized this look, her head cocked, brows furrowed and mouth twisted, the same way she used to look at me when I was a teenager and wore feather earrings and holey jeans.

The children sat down to color and start their homework as Josie pushed the “ON” button to her little music cube and began her knee-buckle dance. She had gotten the toy for Christmas and loved dancing to the, I love you- you love me Barney song. After ten minutes of it being played over and over again it began to drive us all crazy. We searched for the volume control, but there was none.

Jack marched over, grabbed the toy from Josie and turned it off. Josie shrieked, grabbed a handful of his hair and burst into tears. Screaming, Jack tried to dislodge himself, but Josie pulled harder. I pried back her little fingers and released Jack from her iron grip. She cried until I picked her up and let her push the button back on.

“You’re spoiling her. You should put her in time-out,” Jack said. .

“You’re right, but she’s so little, and look how cute she is. You used to do the same thing when you were her age, and you turned out to be okay.”

Big Rel announced she was going to take a bubble bath, and whoever showed her where there was a tub that actually worked would get to pour the bubbles in. They all raced upstairs leaving me alone with the Barney song pulsing in my ears.

The children loved sitting on the floor and talking to Big Rel as she sat in the bath in her skirted bathing suit, covered up to her neck in bubbles. Eva and Relly brought in their Barbies—the ones that had not had all their hair cut off—for shampooing. Big Rel let them pour more bubbles in and told funny stories. This time it was even more of a treat because she was using a bathroom that had never been used before. It was across the hall from Josie’s room and had been closed for renovations. There wasn’t much in it that worked other than the old tub. Josie brought in all of her bath toys including her favorite, a little blue airplane.

Tony had arrived in the midst of it all with take-out Thai food and was opening up a bottle of wine when my mother reappeared with the children all in their pajamas. “Big Rel, it’s good to see you,” he said, handing her a glass of wine. “What do you think of the house?”

“I think you all have your work cut out for you,” she said taking a sip of the wine as they stood together in front of the fire place.

“I know, but when it’s all done it’ll be great,” he said. “Next year we’ll have a big Thanksgiving with you and Pop and all the cousins.”

Josie, who was sitting on my lap wiggled off and walked over to her music square and pushed the button. Jack and Relly, fed up with the song went upstairs to our bedroom to watch a cartoon.

My mother adored Tony and when the two were together I was often a fly on the wall. I listened to their conversation, sometimes interjecting, as I dished the Thai food onto paper plates.

“Where’d Josie go?” asked Tony.

We hadn’t noticed that the music had stopped. “I think she went upstairs to watch TV,” I replied.

I started walking up the steps to check when I heard Josie let out a piercing scream. I began running. My legs couldn’t carry me fast enough. She was standing next to the bath tub, screaming with her eyes squeezed shut and arms jutting out from her sides. She was soaking wet. I ripped off the pajamas. Her skin was bright red and peeling off. I grabbed a towel, wrapped her in it, and looked in the tub. I saw the water, and the airplane. I stuck my hand in the water. It was hot, scalding hot. I screamed for Tony to call 911.

I tried to piece together what had just occurred. Josie had followed her siblings upstairs, and instead of joining them for Rug Rats, she had taken a detour to the bathroom to find her blue airplane. She must have wanted to see it float again, so she turned the knob closest to her little arm. The one with the “H” on it. Then she must have climbed in with her airplane. I felt my throat tighten. I had taken my eyes off her.

The ambulance arrived, and the paramedics took Josie from me, laid her down and unwrapped her. The skin on her legs and arms was red and oozy. She lay crying as the paramedics wrapped her in gauze. They put her in the ambulance, and I jumped in screaming for Tony to get me a bottle of milk. It was her bedtime, and she always had a bottle before going to sleep. He shoved the bottle in my bag and handed it to me. “I’ll follow you down there,” he said. The ambulance doors slammed shut.

As the ambulance backed out of the driveway I could see the children and my mother through the window. They were sitting on the floor by the fireplace and she was handing Jack a board game. They were scared and confused, and their grandmother was trying to comfort and distract them.

“Everything is going to be just fine,” she was probably saying. “Josie’s going to a hospital and some nice doctors are going to fix her, and she’ll be home soon. Let’s play Chutes and Ladders, and I’ll make some hot chocolate. Eva, you can go first since you’re the youngest.”

They must have been relieved. Of course Josie was going to be fine. Big Rel said so. It was as if time had stopped in that room, as if nothing else existed beyond the windows in the cold dark.

***

When we arrived at Johns Hopkins Bayview Medical Center, we were met by two police officers, who walked alongside me as we headed towards the emergency room. They began asking me questions, but as I stopped to answer them I watched Josie and the paramedics disappear around a corner. I ran down the hall, chasing them yelling to the police officers that I had to be with my daughter.

I knew very little about hospitals, but one thing I did know was that Johns Hopkins was the best. I had never been in an emergency room before. It was a narrow room divided into sections by curtains. While we waited for the ER doctor, a nurse gave Josie a lollipop with pain medication. She quietly sucked on it while I stroked her head. I could hear the doctors, nurses and paramedics in the surrounding bays taking care of other patients, one with a gunshot wound, one with severe chest pains, and another who had been in an automobile accident. They spoke quickly with tension in their voices that seemed to rise and fall each time a paramedic brought in a new patient. Controlled chaos surrounded me as Josie and I waited our turn.

The doctor was unable to get an IV into her tiny veins and decided that Josie should be seen at the Johns Hopkins Children’s Center. When we arrived at Hopkins, we were taken to the PICU, the pediatric intensive care unit on the 7th floor. Whiel we waited for the doctor, I whispered “My Favorite Things,” the Sound of Music song that I always sang to her at bedtime.

The doors blasted open and instead of seeing white coats with stethoscopes, I found myself face-to-face with the same two police officers who had followed me at Bayview.

“Mrs. King, can you please tell me what happened?” one asked. “And what time approximately, did your husband come home? And where were you and your husband when Josie turned on the water? Mrs. King, why was your mother in town?”

I answered their questions, as they looked at me and scribbled notes. I wondered why they were asking me these things.

The police officers left as the doctor came in. She told me to sit in the waiting room while they looked at Josie. I sat alone on the turquoise vinyl bench and stared at the blaring lights of the vending machine. It was 11:00 pm when Tony ran in.

“How is she?”

“She’s okay,” I said. “They’re looking at her now. Where you’ve you been? What took so long?”

“I had to talk to the police and show a detective around the house.”

“That’s weird. There were two policemen here asking me questions, too.”

I was too confused and too worried about Josie to comprehend that a child abuse investigation was going on. The doctor came out and told us they were still trying to get the IV in. It was 12:15 am.

An hour later we were told we could come back and be with her. There she was wrapped in gauze. Her eyes were closed. The doctor explained to us that she had first and second degree burns covering 60% of her body. They said that we would need to watch for infection, keep her well hydrated, she may need a skin graft or two, but that she was stable. She would be okay.

I often think back to that night. I consider every detail, trying to figure out how things could have gone differently. If we hadn’t given Josie the music box, she wouldn’t have been listening to that song that night, Jack and Relly wouldn’t have gone upstairs and Josie wouldn’t have followed them. Most of all I wonder how I allowed myself to let her out of my sight.

How could I have let this happen?

***

After Josie’s death, Sorrel King was overcome with grief and anger. At first, she wanted only to make an example of Hopkins, to humiliate the hospital and take its money in exchange for its medical error. But in an epiphany, Sorrel and her husband, Tony, realized a different solution.

One day Sandra said something to me that transformed the way in which I grieved for Josie.

“This energy from your grief and anger is very powerful. It’s time for you to make a decision,” she told me. “You can let the grief and anger continue to destroy you. You can sit in your house all day, cry and be angry at Hopkins and the world. Or you can take that energy and use it to propel you forward.” She took a sip of her tea and looked at me. “Get out there and do something with your anger. Do something with your pain.”

I thought back to my childhood, to happier times and summers at Bruce Farm in Virginia, when my mother—wearing blue jeans, a bathing-suit top, and holding a riding crop—would stand in the middle of the lawn and give us riding lessons. “Heads up and heels down,” she’d command as we jumped over cross rails, galloped through fields, and sailed over stone walls. When one of us got bucked off she’d pick us up, wipe our tears away, check our bodies for broken bones, and then make us get back in the saddle. “If you fall off a horse, you get right back on,” she’d say as we pleaded to quit.

I came home that day thinking about what Sandra had said. I thought back to when the neurologists told me Josie was going to die: how I realized at that moment, in a flash, that something tremendous was happening. I knew from the very beginning that there had to be a reason that Josie was taken from me. I knew that reason was not for me to sit in my house all day and feel sorry for myself.

Sandra was right. I had to make a choice. Maybe the pain and sadness could materialize into a form other than tears, a form much more powerful and productive. It was time to stop looking for God and religion to rescue me. It was time to put away the paints and the guitar, hoping for the pain to go away. It was time to do something else-something for Josie. Maybe, just like Jack wanted, I should stop crying and maybe like Gloria had said, it was time to leave Josie’s room and step out of the house.

Tony and I began discussing what we would do with the money. Should we donate it to kids with cancer? Should we fund a playroom in the new Hopkins Children’s Center? We knew we wanted to do something with children and hospitals. While Tony spent his days at work, I sat at the computer looking for ideas on what to do with the money.

It had to be huge, nationwide, worldwide, earth shatteringly meaningful. As I thought of all of our options there was one question that lurked in the back of my mind and there was only one person who could answer it.

I picked up the phone and called Rick Kidwell.
He was shocked to hear my voice and proceeded to tell me that I should not be contacting him unless it was through our lawyer. I told him it was over. We had signed the papers.

He put me on hold for a minute.

I knew as I sat there waiting, that he was calling Paul Bekman to make sure Mrs. King hadn’t totally lost it.

When he came back to me it was as if I was talking to an entirely different person. He apologized for Josie’s death. He apologized for any pain that the legal proceedings may have caused us. He told me he was sorry.

I was caught off guard by his apology and so I just asked him straight, “Josie’s death was a fluke. It was a strike of lightning. Medical errors that kind of stuff doesn’t happen very often, do they?”

He told me that people die every day from medical errors. “It’s happening in hospitals everywhere. It’s one of the leading causes of death in our country,” he said.

I was shocked.

“No one really talks about it,” he told me. “Doctors and nurses are not publicizing the fact; the patients are either dead or in the middle of a nasty legal battle; and the families are just too grief-stricken to do anything about it.”

I hung up the phone that day and began searching the Internet for more information. The more I read, the more I was beginning to realize the magnitude of the problem.

A 2000 study by the Institute of Medicine, To Err Is Human found that between 44,000 and 98,000 people a year die from medical errors, the equivalent of a jumbo jet crashing every day. Deaths from medical errors, it concluded, was one of our country’s top killers along with cancer, aids, diabetes, and heart disease and many of these deaths were due to a breakdown in communication. The Joint Commission—the nation’s premier health care safety and quality accreditation organization—reported that over 70 percent of all sentinel events, unexpected medical events that results in death or serious injury, occur because of a breakdown in communication—just like what happened to Josie.

Every night when Tony came home from work, I told him everything I was learning about medical errors and patient safety.

We decided we’d start a foundation. Its mission would be to prevent patients from being harmed or killed by medical errors. We would name it after Josie, and we would begin with Johns Hopkins.

Q: Do Americans fully understand the pervasive problem of medical error? What more do they need to learn?

Sorrel King: It’s been ten years since the Institute of Medicine issued the landmark report, “To Err is Human,” documenting the prevalence of medical errors and estimating that upwards of 98,000 Americans die each year because of preventable medical errors. I’m not sure the numbers really hit home. When a plane crashes, it is all over the news and rightly so. The frequency of deaths from medical errors is like a jumbo jet crashing every day. But grasping the scope of medical errors is just the beginning. Patients should be aware that great strides to make health care safer are being made at hospitals all over the country. Patients should also trust their health care provider. No doctor or nurse means to harm a patient, but patients need to understand that it is a complex system that can sometimes break down. They need to pay attention and try to be involved in their care as much as they are able.

Q: Were you surprised to find that doctors, nurses, and other health care professionals also were suffering in silence when a medical error occurred? What work has the Josie King Foundation done to help health care workers?

Sorrel King: After Josie died, I was so consumed by my own grief and anger that I could not put myself in the shoes of the doctors and nurses who had cared for her. About a year or two later, I received a letter from one of her doctors. The letter was heartfelt, filled with emotion and made me see things from a different perspective. It made me realize that I was not the only one who was suffering from the loss of Josie. Through my conversations with nurses and doctors from around the country, I was learning that there was minimal support out there for health care workers who had been impacted by a medical error. The Josie King Foundation sponsored a research project to look into how expressive writing exercises might help health care providers affected by a medical error. Using that research, we developed the Nursing Journal, a therapeutic writing workbook for nurses that explains how writing can help people process the stress related to a medical error, or any work-related stress in general. We’re very excited about this new project.

Q: Please tell us about family-activated Rapid Response Teams and how you contributed to the formation of them around the country.

Sorrel King: A Rapid Response Team is like an in-hospital 911. It is called when a clinician, usually a nurse, is concerned about a decline in a patient’s condition that is not being sufficiently addressed. The response team can consist of nurses, doctors, or other health care workers who can provide a fresh assessment of the patient. After hearing about Rapid Response Teams for the first time at a patient safety conference, I realized that if I had been able to call such a team, they would have come; they would have evaluated Josie; they would have given her water and I believe with all of my heart that she would have lived. I asked the audience that day if a patient or a family member could ever call a Rapid Response Team, knowing that what I was suggesting might be unheard of to many. But Tami Minnier at the University of Pittsburgh Medical Center decided to try it. With some pilot funding from the Josie King Foundation, UPMC developed one of the country’s first patient-and-family-activated Rapid Response Team call lines. Hospitals around the country are contacting UPMC and the Josie King Foundation so that they, too, can offer this important resource to their patients and families. To me this is a sign of a culture changing for the better.

Q: In Josie’s Story, you write that your methods of trying to manage your grief differed from those of your husband, Tony. How deeply did this threaten your marriage?

Sorrel King: It was hard. I had to talk about Josie’s death over and over again. I cried all the time. I couldn’t sleep. I expected Tony to react the same way, but he kept it all in. The grief books say that men and women grieve differently. It took me a long time to understand that, but when I did, I realized that Tony was suffering as much as I was; he just dealt with it in his own way. I had to accept that. I think he was trying to stay strong for me. Many marriages don’t survive the death of a child. We knew that we were going to have to get through it together and we knew it was not going to be easy, but we stuck it out and survived. I think in the end perhaps our marriage is stronger for it.

Q: What would you tell other parents struggling to help their children who have lost a sibling? Did you find certain routines or words helped your children heal after Josie’s death?

Sorrel King: The thing that worked for us as a family was just staying close. We spent a lot of time together. Tony and I tried to talk about Josie as much as we could even though it was painful. We didn’t want the children to think she was no longer a part of our lives. We also tried to keep their routines of school, friends, and sports as normal as possible. I let them see my tears. I wanted them to know that it was okay to cry. I remember telling the children a few weeks after Josie died that she would always be in their hearts and that she would help them when things got hard.

Q: You have courageously taken a long journey from Josie’s bedside, through intense emotional pain, to create the Josie King Foundation and stand before convention halls filled with medical professionals to fight for a safer health care industry. What has been most rewarding to you personally?

Sorrel King: Most rewarding are the e-mails from nurses and doctors around the world telling me that Josie’s story is changing the way they care for their patients; that her story is making our health care system safer, and that her story is saving lives. That is why I keep going.

Q: What role do nurses play in patient safety?

Sorrel King: I believe that nurses are leading the charge to a safer, more compassionate health care system. From what I have seen, it is frequently nurses who first suggest or lead the implementation of safety improvements in their units. They are at the bedside; they are the frontline advocates for their patients; they see it all. I have so much respect for what nurses do and I appreciate all of the patient safety work they have done. To me, nurses are the unsung heroes of the health care industry.

Q: Is health care safer today than it was when Josie died?

Sorrel King: I am often asked that question, and I don’t think I can give an accurate answer simply because I am not at the bedside taking care of patients every day. But from where I stand, from what I see and hear from healthcare professionals around the country, I believe that yes, health care is safer today than it was when Josie died. People are more aware of medical errors and health care professionals are more open to the culture shift that needs to happen to continually improve patient safety. Good things are happening but there is still work that needs to be done.