An important body of work released last week, surveying nearly 700 injured patients and families, paints a sad picture of “diagnostic and therapeutic errors, surgical or procedural complications, hospital-associated infections and medication errors” that led to “death, post-traumatic stress, financial hardship and permanent disability”.
The report, published in the prestigious British Medical Journal of Quality and Safety, is peppered with narrative examples:
“This parent watched her child clinically deteriorating in the hospital…and despite repeatedly expressing her concerns, rescue was delayed and her child died.”
“I was complaining about fever and pain ever since I was at the hospital, and no one paid attention to my symptoms.”…This patient suffered a severe postoperative infection that was not diagnosed for 5 days resulting in a large draining abdominal wall ulcer that persisted for over 2 months.”
The report acknowledges that “voluntary patient surveys are inherently biased because respondents represent a self-selected population, and their descriptions are self-reported.” Yes, better reporting systems are needed. It’s something patient advocates (PVI among them) want, and are building.
Julia, Kate and John Hallisy
To a harmed family, or to medical insiders, the results of this report may not be surprising. What is unusual is that this survey, reported with the scientific integrity required in a publication like BMJ, was patient-initiated. It was the brainchild of Julia Hallisy and Helen Haskell, who teamed up to form the Empowered Patient Coalition (EPC) after each had lost a child to medical error. Haskell’s healthy 15-year-old son Lewis Blackman died of sepsis and blood loss after a “routine” elective surgery. Hallisy’s daughter Kate, born with a rare cancer in both eyes, had been doing remarkably well for years until a “simple” biopsy of her leg led to infection that required her leg to be amputated, and her health to fail rapidly, leading to her death at the age of 10. Says Hallisy, a co-author of the BMJ article: “The goal was to give those who felt unheard and abandoned a voice, and we have done that. For years, I had always assumed that Kate’s surgical site infection was included in the Joint Commission sentinel event database because the commission had a scheduled survey shortly after her event, in which they confirmed the infection and the resulting permanent harm. Years later, I learned that the Joint Commission does not include patient reported data in its sentinel event database, and I could not live with that knowledge.” Hallisy further credits Fred Southwick, MD, himself a survivor of medical error, for championing and co-authoring the report. (The EPC website serves as a platform to gather the surveys.)
John James, whose son John Alexander James died at 19
This is the second time in a relatively short span that groundbreaking data on patient harm has been made available due to patient/family-led research. In 2013, John James PhD, a NASA toxicologist who lost his teenaged son after a heart condition was misdiagnosed, dropped a bombshell with his report published in the Journal of Patient Safety on how many people die each year in this country from preventable medical harm. (During the 14 years prior, the most widely cited data came from an IOM report “To Err is Human”, that estimated those deaths topped out at 98,000.) James used “Trigger Tools” (a means of mining published data to determine if adverse events have occurred) to conclude that there are as many as 440,000 deaths in the US each year from unintended medical harm. James’ data upped the widely accepted number more than 400 %, which makes medical error the nation’s third leading cause of death. (Was there pushback from Dr. Lucien Leape, the nationally-respected patient safety expert who conducted the 1999 study? Quite the contrary. Leape said that he has “full confidence” in the estimate by Dr. James, an endorsement shared by other prominent patient safety colleagues.)
Yes, to err is human. It’s hiding errors that’s inhumane. “Our narratives reveal that patients and families view the system and the providers as one,” reads the BMJ report, “and when the system is designed to hide fault, the providers are seen as untrustworthy, fueling the desire to take legal action.”
Looking Forward
In both the EPC’s and James’ report, the tone is of optimism, and the offer is made to leverage these findings to fix things, with the help of patients. Though the preponderance of care providers are well-meaning, compassionate human beings, the system in which they work is fraught with conflicting incentives. What would a culture focused on improving patient outcomes look like? Among other things, it requires systematically responding to mistakes with regret, taking ownership of responsibility, and viewing them as opportunities for improvement. “There is always some degree of fallibility in any human enterprise”, says PVI Advisor Christian John Lillis, who founded the Peggy Lillis Memorial Foundation after his mother died of C. diff infection following routine dental work. “Mistakes are and should be forgivable. Rather, what I think we’re all concerned with is a system that knowingly and willfully allows for epidemic rates of preventable infections, protects doctors who are clearly incompetent or worse, that allows dangerous drugs and devices to be sold, and at its root, does so to profit a very few at the expense of millions.”
Change begins with facing the truth about the harm patients endure. We owe a debt of thanks to Julia Hallisy and John James for the countless hours they spent, after work and on weekends, developing data that quantifies the consequences the current dysfunction visits on mothers, fathers, siblings and friends. We hope for a day when dollars and resources—both for the work they can make possible, and the respect and collaboration they convey—are made readily available to support patient-reported, and patient-led research.
Meantime, let’s work together toward a culture where preventable medical harm happens so rarely, it’s not worth studying.
