For two decades, Helen Haskell has fought to help prevent medical mistakes. For her, the crusade is personal.
A tragic outcome
“My son Lewis was born with a condition called pectus excavatum. It’s a cosmetic condition, in which the chest has a sunken appearance that’s especially noticeable in young boys,” Haskell said. “My husband and I saw an article promoting what was then a new, minimally invasive, supposedly very safe surgical procedure to correct pectus excavatum, called the Nuss procedure. We got a referral to a surgeon and about a year later we took Lewis to a large teaching hospital to have the operation.”
Haskell said after four days in the hospital, her healthy 15-year-old was gone, the result of a medication error that led to a perforated ulcer, a very dangerous condition that must be treated immediately. Weekend residents didn’t understand the gravity of the situation, and, according to Haskell, nothing was done.
Their lives upended, the Haskells began doing research. “We quickly identified the NSAID medication that had started our brilliant, vibrant boy on his deadly path, but what was more shocking was realizing the chaos we’d observed in the hospital was not unusual,” Haskell said. “Much of it was business as usual. So, I became a patient safety advocate, as a way of giving meaning to his life and death.”
Haskell explained that the first step in the family’s advocacy was in identifying others who’d gone through similar tragedies. “When a devastating medical error occurs, you think you are the only ones, but in fact it is far from uncommon. We quickly learned there were other families like us,” she said. “I formed the non-profit Mothers Against Medical Error with several other parents about two years after Lewis’s death. We worked initially on legislation, and quickly passed two patient safety bills in our state of South Carolina.”
Elevating the patient voice
In the early years of patient safety, Haskell and her coalition thought it would be an easy fix. “But the challenge in the long run is to maintain gains and prevent encroachment by those who fear that safety may threaten their financial interests,” she said.
Haskell, co-chair of the World Health Organization’s Patients for Patient Safety group, believes that as patient care becomes more high-volume and business-driven, the solution lies with patient-oriented, transparent use of technology and data analysis.
“We have a number of software programs that can monitor patients and allow timely rescue of patients who are declining precipitously. This never needs to happen, but it does. It’s a question of raising our national standards, so that providers have to make the needed investments in safety. This is where the patient voice comes in. If patients know what the risks are, they demand safety.”