At the age of 15, my son, Lewis, died due to treatable surgical complications. Following a routine elective surgery, he developed signs of sepsis, a life-threatening response to infection. Like most patients in postsurgical distress, Lewis deteriorated slowly. As he became weaker and weaker over the course of many hours, his bedside caregivers downplayed the significance of his mounting pain and unstable vital signs. Finally, his blood pressure became undetectable and he went into cardiac arrest, from which he could not be saved. My son's death, like thousands of others, was preventable.
Lewis was a brilliant child, bursting with promise. And like most bereaved parents, his father and I were desperate to bring some good from his drastically shortened time on earth. We talked to other families and realized we were far from alone in losing someone we loved to what is known as "failure to rescue" from treatable postsurgical complications. We felt we could only find meaning in these deaths if healthcare providers learned from the mistakes that caused them. And we quickly understood that the first step toward learning was knowing the extent of the problem.
Over the years, we felt secure in the knowledge that CMS was publicly reporting critical patient safety information for hospitals, including the rates of deaths due to treatable surgical complications. CMS publishes this information on their consumer facing website, Care Compare. Businesses and rating organizations like The Leapfrog Group (and in its heyday, Consumer Reports) use CMS safety data to determine overall hospital safety for patients. Having this information publicly available allows families like ours to vote with their feet, and it gives employers and health plans a basis for decision-making for insurance coverage. It is an incentive to hospitals to maintain vigilance about safety.
Recently, however, we have seen an erosion of patient safety reporting at CMS. Each year, CMS proposes changes to quality reporting programs. Longstanding evidence-based patient safety measures, especially those used to detect harm to patients, are gradually being removed. These measures are largely extrapolated from hospital records and do not add to the workload of hospital staff. But they are embarrassing to hospitals, and hospital representatives lobby against them.
In the most recent round of updates, the measure that matters so much to families like ours, "Death Rate Among Surgical Inpatients with Serious Treatable Complications," was proposed for removal. After public protest from patient safety advocates, we were gratified that CMS reversed course and decided to keep the measure as part of their public reporting program. This was a win -- a rare one -- for patients and advocates. But in spite of this change, the trend of downgrading patient safety remains concerning.
As an example, CMS exempted hospitals from reporting hospital-acquired infections from early 2020 and may suppress hospital infection reporting from the second half of 2020, citing the stress hospitals have encountered during the pandemic. While this may seem like a reasonable compromise to free up the time of overtaxed hospital workers, the focus of the exemption is not on data collection; instead, the results are simply not made available to the public as they normally are.
We are all deeply grateful for hospital workers' sacrifices during the pandemic. But these sorts of concessions do not do anyone any favors. There are concerning indications that hospital safety performance has declined during the pandemic. In the most worrisome example, the CDC has noted a broad increase in healthcare-associated infections in hospitals, including invasive fungal infections like the deadly candida auris. During an epidemic of a highly infectious disease like COVID-19, more attention, not less, should be paid to tracking safety and infection. Operating in the dark creates fertile ground for safety lapses that risk the well-being of both healthcare workers and patients.
Even before the pandemic, patient safety lapses were a significant cause of death in hospitals. COVID-19 has only increased the risk. Had my scientifically minded son Lewis lived to adulthood, he could well have been one of the young doctors on the front lines fighting to save people from the ravages of this disease. I would like to think that we could be assured that he was doing so in an atmosphere of safety and transparency. This is the least we owe to our brave healthcare workers, to their vulnerable patients, and to the ghosts of those like Lewis who have already paid the price.
Helen Haskell, MA, is president of the nonprofit patient organization Mothers Against Medical Error.