When Dr. Marty Makary was a medical student, staffers at the Boston hospital where he was training had a nickname for one of its most popular surgeons: Dr. Hodad.
"Hodad" is an acronym for "hands of death and destruction": Despite his Ivy League credentials and board certification, the surgeon had an unfortunate tendency to botch operations so badly that patients often suffered life-threatening complications. But he was also one of the surgeons most requested by patients, including celebrities, thanks to his charming bedside manner and their lack of understanding about what caused their post-op problems.
Makary, 42, aims to end the professional code of silence that allows colleagues like Dr. Hodad to thrive. Now a cancer surgeon at Johns Hopkins Hospital in Baltimore, Makary has just published the book Unaccountable: What Hospitals Won't Tell You and How Transparency Can Revolutionize Health Care.
It outlines the extent to which doctors and hospitals suppress objective data about how patients fare in their hands and argues for clear, publicly accessible statistics to help people make the best choices when it comes to treatment. Hospitals and physicians, he argues, should collect "outcomes data" on everything from how many knee-replacement patients walk without a limp to how many prostatectomy patients become incontinent.
Without that, "patients are walking in blind" every time they choose a hospital, Makary said in an interview. With rare exception they have no way of knowing whether they will receive appropriate care or be one of the 100,000 patients killed or 9 million harmed every year in the United States because of medical mistakes.
"There is terrible guilt about keeping quiet, but there are strong social forces against speaking up when you think something doesn't look right: It can get you fired," said Makary. (HealthGrades, a Denver company that develops and markets quality and safety ratings of healthcare providers, rates Makary a "recognized doctor" based on his training and record of no disciplinary actions or malpractice claims.) "You realize as a young doctor that you've walked into an industry with a very dark side."
CLEAR AS MUD
In no U.S. state can patients find out what a surgeon's rate of complications is, how many mistakes a hospital makes, how many avoidable deaths it has or almost anything else about a provider's record of care. Most ratings, from magazines to websites, reflect softer metrics. In the closely watched hospital rankings issued by U.S. News & World report, "reputation," or what specialists think of a hospital, counts 32.5 percent toward overall scores. Patient volume, number of nurses, use of advanced technologies and 30-day mortality rates also count.
The federal government collects and makes public some measures, such as hospitals' rates of complications and mortality after certain procedures, on the Hospital Compare website. About half the states require hospitals to make public what percentage of patients develop infections. While that's better than nothing, says Dr. John Santa of Consumers Union, publisher of Consumer Reports, providers have largely succeeded in hiding their records. "Despite the best efforts, if hospitals don't have to report something they don't," said Santa. For example, a regular survey by Johns Hopkins asks staffers at 60 hospitals about safety and teamwork. Studies show that hospitals scoring high on the surveys have fewer surgical complications and better patient outcomes. But hospitals participate "under the condition that the results remain top secret," said Makary.
Specialist groups also gather data, including the Society of Thoracic Surgeons, which tracks national heart-surgery outcomes. Only one-third of hospitals have agreed to post their results on the society's website.
Santa believes patients should have far more data on outcomes, such as what fraction of hip-replacement patients develop infections and what fraction of heart-bypass patients survive, not just currently available information on whether providers follow medical guidelines.
The reason? Good practices may not be a reliable proxy for good safety. A hospital's rate of providing antibiotics after surgery, for instance, does not always correlate with patients' infection rate, said Santa.
The Joint Commission, an independent non-profit that certifies and accredits hospitals and other providers, last week released its annual report summarizing how well 3,300 hospitals did on measures of quality and safety. Patients can see that a particular hospital was a "top performer" in pneumonia care, meeting criteria such as taking blood cultures in the intensive care unit. But unless a hospital was specifically cited for exceptional care, patients have no way of knowing how good or bad relative to others it is.
More outcomes measures – whether that knee replacement patient walks again, or even dies on the operating table – will be made public in coming years, said Nancy Foster, vice president for quality and patient safety policy at the American Hospital Association. Patients typically choose a hospital based on what their doctor or friends recommend, she notes, adding, "I think there is a lot of opportunity to enrich that process with hard data. The measures currently available are not as consumer-friendly as most of us would like."
Makary notes several models of transparency that have shown promise. New York, Oregon and California require hospitals to report death rates from heart bypass surgery, adjusted for how sick patients were and other factors to make the comparisons fair. Transparency has benefited patients. After New York made its data public in 1989, hospitals scrambled to improve, and death rates from heart surgery fell 41 percent in four years.
Vitals.com, a doctor-reviews site launched in 2008, recently began incorporating outcomes for cancer and orthopedic surgery from a number of large hospitals into its ratings, said chief executive and co-founder Mitch Rothschild. "Individual facilities recognize that if they don't weed out bad practitioners, they'll get creamed as Medicare starts penalizing hospitals for poor performance, so they collect these metrics and share them with us," he said.
For other outcome data that hospitals chose not to share, Vitals filed a Freedom of Information Act request to access the government's Medicare health program for the elderly. "After a year and a half, as legal fees mounted, we gave up," Rothschild said. The government maintains the data cannot be made public for reasons of privacy and others.
In the meantime, the pitfalls for patients are many. When Makary looked Dr. Hodad up years later, he was still thriving and had a five-star rating on a popular review website. Makary regrets keeping quiet during a residency at a university-affiliated community hospital that boasted of its "comprehensive breast cancer center" and "No. 1 ranking."
Both statements were inventions of the hospital's marketing department, which can make all sorts of claims as long as they are vague enough not to fall afoul of truth-in-advertising laws. The assertion that patients "may" or "often" do better at a particular hospital is allowed, for instance, as are subjective terms like "comprehensive."
Based on such claims, a young patient Makary calls "Gretchen" who needed breast-cancer surgery believed she would get superb care. In reality, the small hospital did only a few dozen such surgeries per year compared with hundreds at major hospitals. It did not have the expertise to do breast-conserving and -reconstruction surgery, nor were its surgeons adept at the latest procedures.
Makary said he was bothered at the time by the hospital's disingenuous claims and worried for Gretchen, though he did not warn her. He did ask if she'd considered other hospitals, but even that placed him "on thin ice with my own job." The operation was horribly botched, leaving Gretchen deformed. Not knowing any other outcome was possible, Makary said, she considered herself "very blessed" just for being alive.