7/3/08 - Change one thing, change everything

One family. Three hospital stays in three states. Three bacterial infections. One death. That was the Nahum family’s experience in just ten months in 2006.

Josh Nahum, a 27-year old skydiving instructor in Loveland, Colorado, hit the ground hard and fast on a Labor Day jump, fracturing both his femur and skull. After surgery on his leg, he fought off one bacterial infection in the intensive care unit. A few weeks after his accident, he was ready to begin rehabilitation. His parents, Victoria and Armando, who had been by his side throughout his ordeal, then felt confident enough to return home to Georgia. They phoned Josh every day and spoke to his physicians and nurses often. Doctors gave the Nahums an encouraging prognosis, expecting a long tough road ahead for their son, but an eventual near-complete recovery.

Josh made good progress as he began rehab, until his sixth day. Then, a fever developed, and a second, more serious bacterial infection was found in his brain and spinal fluid. Pressure on his central nervous system turned Josh into a ventilator-dependent quadriplegic. He died two weeks later on October 22, 2006.

A week after Josh’s death, it occurred to Victoria that this was not the first of the family’s experiences with hospital-acquired infection, but the third in less than a year. She’d had a staph infection in her chest wall after surgery. Her husband’s father had also experienced a healthcare acquired infection in upstate New York. She began to realize the magnitude of the problem, and resolved to do something about it. She could not allow the death of her stepson to be in vain.

First, Victoria set out to learn all she could about healthcare-related infection. The Nahums were not medical people, and had no connection to healthcare. To these residents of greater Atlanta, the CDC seemed an obvious first place to turn. Their first calls brought them in touch with Denise Cardo, head of the Division of Healthcare Quality Promotion. Dr. Cardo and her staff agreed to a one-hour meeting with the Nahums. Instead, in an unhurried atmosphere, the CDC staff openly shared information for three hours. They encouraged Victoria and her husband to associate their story, and Josh’s name and face, with the issue. That, they explained, would help the public realize that the problem isn’t about statistics, but real people. The Nahums thought about the best way to get that message out.

The couple were experienced in website design. Victoria had run an ad agency and Armando worked in media. Though others urged them to pursue avenues such as political action, this is what they knew. A website, or portal, could help others learn about infections. The website www.safecarecampaign.org debuted between Christmas and New Year’s Day—just short of ten weeks after Josh’s death. On it, they linked to information from the CDC.

Meanwhile, Victoria continued to educate herself on healthcare–acquired infection. Searching the Internet had been difficult during Josh’s illness. The more Victoria learned about infection from others, the more she was able to uncover on her own. She found peer-reviewed articles, as well as professional organizations and their materials for both practitioners and patients. Speaking to more experts in the field was also on her agenda.

The possibility of encountering resistance to her work was in the back of Victoria’s mind. Those she called might expect her to be angry and blaming, and therefore raise barriers to communication. To avoid this, she created a rather disarming introduction which briefly but accurately distilled her family’s experience and set the tone. So, resistance never materialized—the healthcare community, Victoria reports, has been very gracious to her and Armando. Each contact suggested others. She asked Donald Berwick of the Institute for Healthcare Improvement the one best piece of advice he could give. Stay socially networked, as much as you possibly can, he replied. Soon, Victoria was on the phone 10 hours a day, interviewing recognized authorities in infection control.

The safecarecampaign website soon grew beyond its original bounds, to incorporate the articles and brochures Victoria had found from sources other than the CDC. Videos of television interviews, newsclips and Victoria’s address to the National Press Club were added as they became available. The site had 500,000 hits in 2007, and 750,000 in the first 4 months of 2008.

Victoria spoke to a group of 400 in Las Vegas, an experience she described as cathartic. On her flight back, she watched the airline safety video. Where, she wondered, is the safety video in healthcare? She produced one, with the help of CDC and the Association for Professionals in Infection Control (APIC), sponsored by Kimberly-Clark. Intended as a video to be shown to patients or families upon admission to a hospital, it was released in June 2008 at the annual APIC conference. http://www.cdc.gov/Handhygiene/Patient_Admission_Video.html

Speaking before the National Press Club in 2007, Victoria explained the “theory of sensitive dependence on initial conditions.” It is sometimes called the butterfly effect, recalling the question of whether the movement of a butterfly’s wings on one part of the globe can trigger a tornado thousands of miles away. Actions and choices, both large and small, have the potential to change circumstances. Everything in the equation has a big effect on the outcome. In Victoria’s words, “Change one thing, change everything.”

In infection control, the small but crucial action may be the washing of hands before touching a patient. It may be attention to proper catheter care, or simply asking the right questions. Caregivers can make all the difference, when they fully realize the importance of their actions to the person in their care. Victoria considers this issue of individual responsibility to be among the most pressing matters in healthcare.

Her best advice, besides that given to her by Donald Berwick, is often echoed by others interviewed for CAPS feature stories: stick with what you know. Build on talents already possessed for the benefit of the patient safety community.

There are many separate groups at work today on different aspects of patient safety. Each is devoted to a specific issue, usually one that has affected members personally. Some may criticize the lack of centralization of these efforts. However, it means many minds focusing intently on many pieces of the problem, developing many approaches. It may be our best hope: multiplying the power of “Change one thing, change everything.”