Question: If two jumbo jets fell from the sky every day, would you fly?

That’s the question Betty Tonsing set out to address in her book “Stand in the Way: Patient Advocates Speak Out.”

“Every year 100,000 people die as the result of infections contracted while in the hospital,” she says. “Another 300,000 die from unintentional medical harm. . . That is the equivalent of about two jumbo jets crashing every day.”

Betty, a member of an atom Alliance care coordination community in Indiana, is an accomplished researcher, writer, professor and business woman. She met her husband of 28 years, George, while they were both working overseas for the United Nations and U.S. Department of State. They adopted two children and spent years of dedicated service to others.

In May 2011, everything changed.

In Part One of this three-part series, A Patient Advocate Speaks Out, we share Betty and George’s story, beginning with the introduction to her book:

“On 10 May 2011, my husband had a routine knee operation. We anticipated that, following a few weeks’ physical therapy and recovery in a therapeutic setting, he would return to his normal routine. That included daily drives to Starbucks in his truck for coffee and company. As a retired history professor, that also included consulting as a field editor for a scholarly press, and, as a Fulbright scholar, being a grant reviewer of incoming proposals. As an avid outdoorsman, it included hunting and fishing. All that dramatically changed two weeks later when a blood clot landed him back in the hospital where he contracted pneumonia and a virulent bacterial cellulitis infection.”

According to the CDC, there are 719,000 knee replacement surgeries each year, making it a common inpatient surgery. But on May 23, after his surgery and while they were in what they thought would be a short-term rehab facility, George complained of a terrible pain.

By May 27, he was in the emergency room with a blood clot. The clot was removed on a Saturday, but the next day, Betty knew that something had gone terribly wrong. George was shaking uncontrollably and was incoherent.

First, the hospital thought it was an adverse drug event (ADE) due to a medication error, which was very probable. ADEs are a leading cause of patient harm, according to the Centers for Medicare & Medicaid Services (CMS) and George was on several medications.

Betty detailed, “When I saw George’s primary care physician at the nurses station, he was going over George’s electronic medical chart, looking for what he thought might be the culprit causing his incoherent state and uncontrollable shaking. He was not linking it to the blood clot, which had already been removed. George was on a lot of drugs, and had been for quite some time. Such an overlap of medications leading to a gross adverse reaction would not be surprising. Because he had congestive heart failure, he was already on blood thinners. So how could he have gotten a clot?”

Betty suspected it was the lack of care he received at the short-term rehab facility after his surgery.

“I chose this facility because of its five-star rating. They assured me he would be on a unit reserved for rehab patients, not the regular nursing home patients. And this was not the case. He was surrounded by the nursing home patients, many in various stages of dementia, and he was really annoyed. Everyone was in a wheelchair, which I found odd. How was it possible that no one in this facility could walk? No one?”

“During all the times I visited him, his leg was never up. He was either in a wheelchair or in a regular chair in his room and his legs were always down, with both feet on the floor. Shortly before the blood clot incident, I was visiting George at the same time a nurse was in his room. I asked her why his leg wasn’t elevated. Without saying a word or looking at me, she looked around the room. In an instant, she took a cheap, mid-size waste paper basket, turned it upside down, plopped his leg on top of this wobbly contraption and walked out. I stared at her, stunned, and told George not to sneeze. Given his weight of 220, one good sneeze and his leg would go flying off the basket and likely cause damage to the knee.”

George’s healthcare team determined that his reaction after his clot removal was actually a healthcare-associated infection (HAI)—a bacterial skin infection. They put him on the strongest antibiotic he could take and he was in the hospital for week. He was then transferred to a specialty hospital, but from that point on things were never the same for him or Betty again.

“When George was being hospitalized for the infection,” she said, “I called the facility’s administrator to ask her why his leg was never elevated. I told her about the wastebasket, adding that surely a facility with a five-star rating could do better. She agreed.

“Later, after George was already dismissed from the hospital and taken to a long-term acute care facility, I returned to George’s room for his personal items. There, on his wheelchair was an attachment that he would have used to rest his leg on so it could have been elevated—elevated to avoid a clot. But now, it was too late.”

For the next eleven months, they rotated through a series of hospitals, acute care facilities, rehabilitation centers and long-term care nursing homes. George, meanwhile, fell into a depression, declining mentally as quickly as he was physically.

The complete timeline of events is detailed in Betty’s book, which she began as a journal to help her track events and express her feelings. It includes George’s multiple infections, diagnoses and care setting transfers—his physical pain and cognitive decline. It includes Betty’s relationships with healthcare doctors and staff and her anguish, limitations and hope as his caregiver and wife. It chronicles her positive and negative experiences in the healthcare system—from medication and communication errors to the people who provided much needed support and advice along the way.

When they were living overseas, there was a joke between them that if they ever had to go to a third-world hospital, they would die there. She couldn’t believe what was happening to them at home in the U.S.

“What century are we in?” she asked. “This is the thing you equate with the U.S. Civil War. The soldiers didn’t die from being shot; they died from infections from their wounds.”

Betty and her husband, George

On April 4, 2012, George, at age 76 nearly one year after entering the hospital for a knee replacement surgery, died in a hospital.

“The number of people dying each year due to medical errors and HAIs is equal to two jumbo jets every day,” Betty said. “If that really happened, would you fly? If that was really happening in the airline industry, it would be shut down.”

Betty doesn’t want to shut down the healthcare system, but she does want to help others improve and navigate it so this tragedy doesn’t happen again. The reality for now is, that it will. Fortunately, Betty and others are working on it, led by an unwavering conviction that caregivers must speak up for their loved ones.

In her book, she says, “I want all patient advocates to not be afraid of their lack of professional training. I want them to stand up, speak out and push back . . . I want them to know when to get out of the way and when to get in the way and, most importantly, to know the difference.”

The second part of our series will detail how Betty is using her personal and professional experience to follow through on this commitment.

Betty K. Tonsing, Ph.D., CFRE

Tonsing is an accomplished researcher, writer, senior executive manager and visionary change agent. She is a front-line advocate for patient safety, wellness and prevention. As an educator and international development specialist, she worked in Africa, Central Asia and the Middle East for 13 years. She is a passionate advocate for healthcare reform and regards access to dignified, affordable and medically-sound hospitalization and long-term care as a matter of economic and social justice and good business sense. Learn more about her work at www.patientadvocatesspeakout.com

Contracted by the Centers for Medicare & Medicaid Services (CMS), atom Alliance works with healthcare providers to reduce hospital readmissions, prevent HAIs and eliminate ADEs. Learn more at www.atomAlliance.org.

Krista Creel, Marketing Specialist

Krista’s 14-year marketing experience covers the scope of retail, service, distribution and non-profit. She currently serves as atom Alliance Marketing Specialist dedicated to the nursing home and care coordination tasks, focused on quality improvement initiatives aimed at improving the health and care of Medicare beneficiaries.