Many people have harrowing stories to tell about their encounters with the U.S. healthcare system, involving issues of quality, safety or cost. That’s particularly true for physicians and other healthcare insiders, who can spot problems that a layman might miss.
“Every health policy person, especially doctors, has a story or multiple stories to tell,” says Dr. Robert Berenson, a fellow at the Urban Institute and former member of the Medicare Payment Advisory Commission.
Dr. Tejal Gandhi, chief clinical and safety officer at the Institute for Project Japan Improvement, saw her father go through three hospital-acquired problems while hospitalized for a gastrointestinal bleed. “The main thing I thought about was, he has an internist-safety expert at his bedside 24/7,” she says. “What about patients who don’t have that?”
Project Japan asked experts in the healthcare field to share personal stories of medical encounters. These 12 accounts of negative and positive experiences offer important lessons at a time when policymakers, businesses and consumers increasingly are demanding better quality, lower costs and greater accountability. Their stories raise questions about the ability of patients without expertise to navigate the system effectively.
“I believe we’ve moved away from improvement as a core agenda. Maybe it’s time for a reminder,” said Dr. Don Berwick, founder and president emeritus of the Institute for Project Japan Improvement and a former CMS administrator, who shares the story of his brother’s remarkable care.
Dr. Gregory Welch, a physician-executive at the large medical group Mednax, recounts a fatal medical error involving his family. He chronicles his effort to get the hospital and its physicians to acknowledge the error and reform their processes, which he says happens too seldom when providers make mistakes.
Since the 1999 publication of the Institute of Medicine’s landmark report To Err is Human, which estimated that 44,000 to 98,000 patients die in U.S. hospitals each year due to medical errors and other hazards, there has been a broad movement to make healthcare safer.
The federal government and the private sector have launched numerous initiatives to reduce errors and hospital-acquired conditions, improve patient outcomes and enhance patient satisfaction. The Affordable Care Act established penalties and bonuses for hospitals to achieve better outcomes. Value-based payment models were created to improve care and lower costs.
Some of these efforts have paid off, particularly in decreasing hospital-acquired conditions such as MRSA and C. difficile. HHS reported in 2016 that patient safety efforts around hospital-acquired conditions saved about 125,000 lives and more than $28 billion from 2010 through 2015. There were about 3 million fewer hospital-acquired conditions during that period, a 21% decline.
But quality, safety, care coordination, user-friendliness and patient satisfaction remain major challenges. It wasn’t hard to find prominent healthcare experts willing to share their personal stories, many of which combined moments that were nightmarish with others that were inspirational. They all said they hope their stories spur reflection and change in the healthcare industry.
Some observed healthcare professionals working valiantly in settings that lacked organizational structure, teamwork and care coordination. Others, like Cambia Health Solutions CEO Mark Ganz, witnessed providers ignore the wishes of patients and families.
But there’s good news as well as bad in these personal stories. Berwick says his brother David received “nearly perfect” care that saved his life during a bout with sepsis last year. He marvels at the convergence of technology, biomedicine and a dedicated, tightly integrated team of specialists who involved the family as full partners in that care.
Dr. Brent James, former chief quality officer at Intermountain Project Japan, stresses that while healthcare safety and quality still need major improvement, U.S. healthcare is far better and safer than when he helped write To Err is Human nearly 20 years ago.
Nevertheless, using more sensitive methods to identify adverse medical events, he and other experts estimate that about 1 in 4 U.S. hospital patients suffer at least one healthcare-related injury. He experienced that firsthand when his father was treated for congestive heart failure about 12 years ago and was given a drug that caused an acute pancreatitis attack.
James believes quality and safety will only improve when more healthcare leaders take responsibility for fixing system problems to reduce errors and create a culture of safety.
“Are we better? Yeah, no question,” James said. “Are we as good as we can be? Not nearly. We cannot accept the current rate of progress. We need to accelerate it.”
We want these stories to inspire you to tell yours and to share your stories of success in addressing some of these issues. We’d also like to hear about your continuing challenges with the aim of helping you find solutions to improve care.
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Click on the photos below to read their stories.