The Role of the Patient in Improving Patient Safety

By Rosemary Gibson, MSc

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 route—intramuscularly), 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 patients—when 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: http://www.familycenteredcare.org/profiles/prof-mcg.html. 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: http://www.cdc.gov/ncidod/dhqp/healthDis.html. Accessed February 5, 2007.