The Role of the Patient in Improving Patient Safety

Rosemary Gibson, MSc | March 1, 2007

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Perspective

Patients have three roles in improving patient safety: helping to ensure their own safety, working with health care organizations to improve safety at the organization and unit level, and advocating as citizens for public reporting and accountability of hospital and health system performance. The following case illustrates how patients can help ensure their own safety.

A physician who works at an academic teaching hospital was admitted to that hospital for an allergic reaction to a bee sting. A nurse administered epinephrine intravenously (rather than the appropriate routeintramuscularly), and the patient became ill immediately. The telemetry monitor showed ventricular tachycardia, a potentially life-threatening arrhythmia. The patient shouted for help. A supervising physician responded, asking the nurse to administer epinephrine. The patient reported that epinephrine had already been administered intravenously, and the supervising physician stated that it should have been given intramuscularly. The patient's oxygen saturations dropped. She was intubated and moved to the medical intensive care unit, where she vomited and choked on her secretions. The patient was unable to call for help. Terrified and in restraints, she ultimately managed to self-extubate and clear her breathing passage. The patient recovered from this series of events and was eventually discharged home.

Amazingly, less than a year later, she returned to her hospital for emergency treatment. She suffered a medication error in the emergency room, which resulted in cardiac arrest. Luckily, her husband was able to alert the staff about his wife's deterioration, and she was resuscitated.

Although this physician had the advantage of medical knowledge, nonphysician patients and family members have also alerted physicians and nurses to many potential sentinel events.(1) A 5-year-old girl hospitalized for cancer treatment was about to receive a medication through an intravenous line. An alert mother read the order, checked the drug, and informed the nurse that the drug and dose were correct but meant for another patient. Other examples have been reported, such as a wife who informed a nurse that her husband was being placed in his roommate's hospital bed rather than his own.(2)

Despite the potential for patients and family members to advocate for their own safety, they may have varying ability to do so. Their medical condition and treatment, knowledge, and language barriers may prevent them from being an effective advocate for their own safety. But even the most knowledgeable and assertive patients and families may be unsuccessful in alerting the care team to potential sentinel events.

A key determinant of patients' and family members' ability to advocate for safety is the culture of the health care organization. If patients are considered part of the clinical microsystem and integral to the work of improvement, their safety concerns will be welcomed and acted upon. When patients are not considered part of the care team, they may be reluctant to report such concerns. This reluctance is not specific to patientswhen the safety culture is poor, even doctors, nurses, pharmacists, and others working in the organization are reluctant to point out safety concerns to their colleagues.(3) If patients do report safety concerns, they may be unsuccessful in having the care team respond to prevent potential sentinel events.

A second role for patients and family members is in working to improve safety and quality in health care organizations. Early adopter hospitals are demonstrating promising practices in engaging patients and families in this work. For example, at Cincinnati Children's Hospital, patients and families are an integral part of quality-improvement teams, hospital-wide teams, and unit-based committees and task forces. During rounds in which families are encouraged to participate, physician orders are written on a laptop in the patient's room. Residents review them aloud so all members of the care team (including the patients and family members) can verify their accuracy, which reduces opportunities for miscommunication and error.

The Medical College of Georgia has also been engaging patients and families in the physical redesign of its hospitals and operations. A reduction in medical errors and an increase in patient satisfaction in its neuro-rehabilitation unit have been attributed to the engagement of patients and families.(4) These and other promising practices merit further demonstration and study.

The internationally renowned statistician who taught leaders of industry how to improve quality, W. Edwards Deming, said in his book, Out of the Crisis, "Customers would be eager to work...to reduce mistakes."(5) Yet most hospitals do not appear to be ready to embrace patients and families in the work of improvement and safety. For example, the physician-patient mentioned above tried to engage senior leadership in focusing the institution on patient safety after the first sentinel event but found that these efforts were unsuccessful. In addition, her report of the event in a hospital patient satisfaction survey yielded no response from the hospital. But other hospitals are taking steps to engage patients and family members in discussions with senior leadership (Karen McKinley, Geisinger Health System, oral communication, August 9, 2006). The hope is that, as more hospitals have positive experiences with these conversations, reluctance may gradually diminish.

A third role for patients is collective action as citizens to improve safety. The Consumers Union campaign to prevent hospital infections is an example of citizen action to improve outcomes for patients.(6) The campaign is grounded in the assumption that public reporting of measures of system performance is essential to accelerate improvement. In 16 states, citizens have been instrumental in securing passage of legislation on reporting of hospital infections.(6) They are also mobilizing to encourage hospitals to report infections once laws are enacted. With two million hospital infections and 90,000 deaths annually because of hospital infections (7), a large base of support exists to accelerate public reporting.

The success so far in promoting transparency in hospital performance on infections can be attributed in part to the public's intuitive understanding that every effort should be made to prevent people from acquiring an infection in the hospital. Many other performance measures (such as hemoglobin A1c in the treatment of people with diabetes or whether patients with heart attacks received beta blockers) are not as readily understood. As Dr. Deming said, "The ultimate customer (e.g., owner of an automobile) does not care about the specification of the eight hundred parts on the transmission. He only cares whether the transmission works, and if it is quiet."(5) The more that performance measures are understood by the public and perceived as important indicators of quality, the more that patients will be motivated to advocate for transparency, safety, and quality.

In the 17th century, Sir Isaac Newton (English mathematician and physicist) observed that an object remains at rest until it is compelled to change by forces imposed on it. In their role as citizens, patients and their families are demonstrating that they are an essential and constructive external force to encourage health care organizations to make care better and safer for us all. This approach may be the salvo that finally creates the political will for widespread and sustainable improvement in patient safety.

References

1. Roberg K. Kelsey's story. Am J Health Syst Pharm. 2001;58:985-987. [go to PubMed]

2. Gibson R, Singh JP. Wall of Silence. Washington, DC: LifeLine Press; 2003.

3. Maxfield D, Grenny J, McMillan R, Patterson K, Switzler A. Silence Kills: The Seven Crucial Conversations in Healthcare. Aliso Viejo, CA: American Association of Critical-Care Nurses; 2005.

4. Profiles of Change. The Institute for Family-Centered Care Web site. Available at: https://ipfcc.org/profiles/. Accessed February 5, 2007.

5. Deming EW. Out of the Crisis. Cambridge, MA: MIT Press; 2000:141, 376.

6. StopHospitalInfections.org Web site. Available at: www.stophospitalinfections.org. Accessed February 5, 2007.

7. Healthcare-associated infections (HAIs). Centers for Disease Control and Prevention Web site. Available at: https://www.cdc.gov/hai/index.html. Accessed February 5, 2007.

In Conversation with...Sorrel King

March 1, 2007

Editor's Note: Sorrel King is the mother of Josie King, who died tragically in 2001 at age 18 months because of medical errors during a hospitalization at Johns Hopkins Hospital. She has subsequently become one of the nation's foremost patient advocates for safety, forming an influential foundation (the Josie King Foundation) and partnering with Johns Hopkins to promote the field of patient safety around the world.

Dr. Robert Wachter, Editor, AHRQ WebM&M: What led to your partnership with Hopkins? Was it your idea, their idea, or did it come to both of you at the same time?

Sorrel King: It definitely wasn't their idea. When Josie died, we were angry and sad and struggling with those two emotions. Before that time, I had no idea that people died from medical errors. And we hired a lawyer; we wanted answers. You know, there were moments in time where I wanted a blood bath, I wanted to destroy Hopkins. There was an investigation, and they came to us with a settlement deal, but it wasn't money we wanted. Then someone said something that made some sense. They said, "Don't be an idiot, take the money and do something good with it." So we did. We were going to give the money to cancer research for children, build a playground for kids with cancer, or do something for kids in the health care setting. After we signed the legal papers, I called Rick Kidwell, the lawyer at Hopkins, and said, "What happened to Josie, that little strike of lightning, that doesn't happen very often." And I'll never forget his answer. His answer was, "Sorrel, it is happening everywhere, every day, every hospital, all over the country, all over the world98,000 people are dying from medical errors." Then I began reading about it and talking to people. And it became apparent to us that we needed to do something about preventing medical errors.

RW: What have you come to understand about the way hospitals work and the way doctors work that you didn't know when you started this journey?

SK: I didn't understand that there were these silos of care. You had your nursing team, the surgical team, the pain management team, and all these teams, yet there was never really one person who was leading people or communicating with everyone. I did not know that there was this dysfunctional culture between patients and doctors, or families and nurses, or nurses and doctors. I always thought people communicated better and they paid attention. When Josie was in the hospital, I learned that's not the case; I saw it happening before my very eyes.

RW: Do you think things are getting better?

SK: Yes, I think they are. But I think there's still a long way to go. I think we need to focus on this next generation of nursing students and medical students. That's exciting to get into these fresh minds.

RW: In trying to figure out how to fix it, you have to try to understand why the students evolve in the way that they do. Do you have a sense of what goes on over time that makes things the way they have been?

SK: Well, I think the way my foundation can change things and the way we all can change things is to talk to these medical students and nursing students. If we can get into their hearts and into their souls and into their minds, share these stories and make them understand. They have to slow down, to listen to a mother or a father when that parent is afraid. You've got to look at the patient. Not all the answers are on your computer screen or on your clipboard. You have to communicate, you have to listen to the nurse, and you have to listen to each other. You must slow down. I've found that sharing my story has made a huge difference to these people. I didn't go to medical school and I didn't go to nursing school, so I'm just saying what I've heard from people who have, and that is, we weren't taught this stuff in school.

RW: Are you sympathetic to the plight of the individual doctor or nurse who hears you and says, I need to slow down, and then goes back into the machine and the machine is operating at 98 miles an hour and you have x amount of work to be done in y amount of timeit's very difficult to slow down in that environment.

SK: I'm totally sympathetic to that. Especially with the nursing shortage, these nurses are just pulled in a million directions. You know, I can't solve the problem, but it's sad that they have to go back into this environment where there are faulty systems. These systems are eventually going to break down and something is going to happen that wasn't that doctor's fault or that nurse's fault. It was a system thing. But something bad is going to happen and it's going to look like it's that person's fault or that person is going to feel like it was their fault that they hurt this patient.

RW: In your mind, have you reconciled this balance between the system needs to be better but at times there are "bad apples"?

SK: I've never heard a story where the doctor or nurse did something on purpose. I come across stories all the time in which the doctor or nurse didn't listen or didn't pay attention. From what I see and hear, it's constantly a communication thing.

RW: What do you think the role of transparency is? In some ways, you look at the steps that Hopkins has taken and it shows a lot of good people getting together and it shows your leadership. But it's also because there were bad errors that were embarrassing and ended up in the media. That tension comes up a lot, where hospitals will often say leave us alone because if it's too public people will just hide everything, and on the other hand, the publicness sometimes catalyzes the changes.

SK: When the media reports about some hospital that screwed up, it's really, "here's the story." Then the next day, everyone's forgotten about it, and then what was the point of it? The media came to us a year or two after Josie died, and it was a story about a hospital that really screwed up. But the more important thing about that story was that the hospital and the family came together and they're making changes. They're making a difference and they're affecting hospitals all over the country. The hospitals have to offer full disclosure. When something goes wrong, they have to go to the family. They've got to apologize, they've got to tell the truth, and they've got to fix the problem. As far as the media is concerned, I don't know, hopefully families would figure out not to go to the media until they have created some solutions at these hospitals. Then the hospital and the family can share the story together, and hopefully people can learn from their mistakes.

RW: What have you come to believe about the role of patients in protecting themselves?

SK: I think patients need to trust the hospital they're in. They need to trust the doctors and the nurses and they cannot put up this wall of animosity in front of themselves. They need to trust where they are, trust the people who are caring for them. But they need to be on their toes. They need to never be afraid to raise their hand and ask questions. They need to keep notes, they need to keep track of medications, who's doing this and what's happening here, and what the child is eating and not eating. I hope patients have a better understanding that they need to pay attention and that hospitals can be dangerous places.

RW: What are you proudest of in terms of what you've accomplished?

SK: Well, it's good to know that Josie's short life and her death are making a difference in the way that doctors and nurses are taking care of their patients. That's why we keep going on with what we're doing. The second thing I'm most proud of is all the good stuff that we've done since she's died. All the programs the foundation is funding, all the traveling and talking to people. They're great things that happened. That makes me really happy.

This project was funded under contract number 75Q80119C00004 from the Agency for Healthcare Research and Quality (AHRQ), U.S. Department of Health and Human Services. The authors are solely responsible for this report’s contents, findings, and conclusions, which do not necessarily represent the views of AHRQ. Readers should not interpret any statement in this report as an official position of AHRQ or of the U.S. Department of Health and Human Services. None of the authors has any affiliation or financial involvement that conflicts with the material presented in this report. View AHRQ Disclaimers