Nineteen years ago, my daughter Julia died as a consequence of diagnostic error. She was 15-years-old. Admitted to the hospital with a mistaken diagnosis of cholecystitis (gall bladder disease), she experienced a series of inconclusive tests and counterproductive care over six days, prior to her death four hours after an ill-advised surgery.
Nothing can dislodge the grief that we feel, still today, in the loss of our daughter. But we seek ways to channel this grief with our passion for patient safety — in particular, the avoidance of diagnostic error. With a passion for the cause, and the privilege of a platform to share our story, we believe we can make a difference.
This is Patient Safety Awareness Week, a campaign sponsored by the Institute of Healthcare Improvement, so it seems like a good time to review what we know — and where we need to go.
Twenty-three years ago, the Institute of Medicine (now the National Academy of Medicine, or NAM) challenged assumptions about medical care by publishing “To Err is Human: Building a Safer Health System.” The report dramatically exposed the issue of patient safety in health care and began a quiet revolution in the way in which health care organizations address the safety and quality of care. Much has changed for the better over 23 years, but the statistics are stubbornly consistent: studies estimate upwards of 400,000 preventable deaths annually, and 10-20 times that number in cases of serious harm, resulting from medical errors.
A significant percentage of these totals result from diagnostic error. Another NAM report published in 2015, “Improving Diagnosis in Health Care,” promoted changes in medical education to improve clinical reasoning. There are cognitive diversions, distractions and traps along the path to an accurate, timely and effectively communicated diagnosis.
In Julia’s case, the team locked in on the initial — and incorrect — diagnosis and never looked back. Imaging results and conflicting labs were rationalized to justify the assumed diagnosis. When doubt was expressed by one specialist, it was discounted, and Julia proceeded to surgery.
The facts are not in dispute. Leadership at the hospital where she died acknowledged its failure within days of her death. They said the right things. They made procedural changes immediately to minimize the risk to others, and they have continued to keep Julia’s story alive as a cautionary tale for current and succeeding generations of providers.
But this isn’t the case everywhere, even today. It takes courageous and consistent leadership at the very top of health care institutions to embrace and impose a culture of disclosure.
Fortunately, there are examples of successful reporting systems that rise above the shame-and-blame culture of the past. But the power dynamics in any institution — inter- and intra-professional — can be a stubborn reality.
The front lines of quality and safety will continue to be the thousands of providers in clinics, hospitals and other care facilities. At the point of care, providers need to remember that the patient is the expert on their own body and health. Reflexive certainty about “what’s wrong” is often, well, wrong. Confidence is a flawed predictor of diagnostic accuracy. By acknowledging uncertainty when it exists, the physician can engage the patient in additional history taking, leading to a better differential diagnosis.
I’ve had 19 years to think about it: what will make for safer diagnosis in health care? I believe it will require a world where providers consistently lead above all with humility and curiosity; where they value uncertainty as an invitation to slow down and dig deeper; where they acknowledge any uncertainty to their peers on the medical team, revisiting the initial diagnosis if needed; and where they communicate clearly and honestly with the patient and family. Expressing uncertainty with care and reassurance can be a trust-building practice.
Julia was, in most ways, a normal 15-year-old, alternately engaging and distant, delightful and maddening. She had a fairly normal childhood experience with medicine: a few stitches here, an infection there, a shard of plastic in her eye, and assorted athletic injuries. In adolescence, she experienced depression. She worked hard in therapy and became an outspoken mental health advocate at school and among her friends. She had much left to give.
Julia trusted her doctors and was a compliant patient throughout her week in the hospital. She wanted to come home, and surgery was seen as the ticket out. Tragically, the inflamed gall bladder was only a symptom of an overlooked Epstein Barre infection — mononucleosis — and internal bleeding post-surgery was fatal.
My wife and I do what we can to shine a light on diagnostic safety. There is movement, but there must be more — with patients, families, educators and professionals on the same page — to make health care safer for all.
Dan Berg, of Minneapolis, is an advocate for patient safety.
