FAIRFAX, Va. — Sharon Van Putten's final months were spent in misery at a highly rated northern Virginia hospital.
During a family visit to northern Virginia, Van Putten's chronic back problems flared up and she ended up having spinal surgery at Inova Fairfax Hospital. She came out of surgery a paraplegic. She was held in restraints for weeks. She developed a bedsore so large you could see the titanium implanted in her spine. Medical records show she went nearly a week receiving only clear liquids and dropped 30 pounds. She spent her days moaning "Help me!" to nurses.
An Associated Press examination of her care highlights the dizzying array of federal, state and private agencies charged with regulating hospital care, and the differing standards they use when investigating the most serious cases of possible neglect.
In addition, an investigation report filed by Virginia regulators appears to have been altered to delete parts of the report that substantiated most of the family's complaints. That prompted a former top federal regulator to say the case warrants further investigation.
Van Putten's family contends there was a cascade of errors by the Inova system from when she was first turned away from an emergency room last summer to when she was discharged to an unaffiliated hospital in Florida and died at age 67 last November.
She had long suffered back problems and was treated at hospitals across the country while she and her husband traveled by RV for more than a decade.
They were visiting her daughters in northern Virginia last summer when her back problems flared up again. In late June 2011, she was turned away from the Inova Fair Oaks emergency room twice in three days, before another hospital sent her to the Inova Fairfax emergency room on July 1. By that time, she could barely walk.
When she finally got surgery, the chances of success had diminished and she came out a paraplegic. She spent three weeks there, was discharged to the National Rehabilitation Hospital in Washington but returned to Inova Fairfax in August and spent another 32 days there in August and September.
The family tried to get her out of Inova, but Medicare spending rules made it difficult to find a place that would accept her. The family finally arranged for her to be sent to a hospital in Naples, Fla. Doctors there diagnosed an aggressive lung cancer that had previously gone unnoticed, Debra van Putten said. She died Nov. 9.
The family faces a maze of bureaucracy responsible for investigating what happened at Inova.
"As upset as I am about the care Mom got, I am maybe even more upset about all of this," daughter Debra Van Putten of Gainesville said recently as she surveyed thousands of pages of medical records and letters from regulators.
The Centers for Medicare and Medicaid Services partners with state agencies and plays a lead role in investigating complaints about improper care and levying sanctions against hospitals.
Other groups that play a role in regulating hospitals include: state medical and nursing boards; private organizations called quality improvement organizations; and the nonprofit Joint Commission, which accredits the majority of U.S. hospitals. The Van Puttens have filed complaints with all of those agencies, and then some. In Virginia, the attorney general also operates a Medicare fraud control unit that can initiate criminal cases. That office declined to say if it's investigating Van Putten's case.
The differing copies of the report in her case show discrepancies in the standards and language used between state and federal regulators.
The text of a report by an investigator with the Virginia Department of Health who looked into Van Putten's care called the majority of the family's complaints "substantiated." But a version of the report given to the family five days later said those complaints were "unsubstantiated."
State regulators say a finding of "substantiated" indicates nothing improper on the hospital's part. For example, it could mean that the investigator confirmed a patient was held in restraints, but it was properly done. Federal regulators, though, maintain that a substantiated finding means the care was improper.
The report in question was prepared by the Virginia health department as part of its contract with the federal government and was obtained by the AP through the state's Freedom of Information Act. The two reports show additional differences, such as paragraphs that were deleted from the version provided to the family.
The state Health Department attributes the discrepancies in the Van Putten reports to "typos" and "clerical errors," according to Erik Bodin, acting director of the department's licensure division, and says the "unsubstantiated" findings are the correct ones.
But he said he can't explain why the investigator made certain findings, such as why they concluded that the family's accusation of starvation for seven days was unsubstantiated, even though the family has medical charts showing she received only clear liquids for seven days before she was eventually fed through a tube.
He is confident his department investigated thoroughly.
"I have supreme confidence in my staff," Bodin said, though he said portions of the report have left him "a little befuddled."
The discrepancies should "definitely" prompt further federal scrutiny, said Charlene Frizzera, a senior adviser at health care consulting firm Leavitt Partners, who spent 30 years at CMS, culminating in a stint as acting administrator. She said the type of complaint filed by the Van Puttens, called an "immediate jeopardy" complaint, is generally a top priority.
A recent audit by the inspector general for the U.S. Department of Health and Human Services found roughly 350 such complaints were filed nationally in a given year. A negative finding on an immediate jeopardy complaint can have immediate consequences for a hospital, from financial penalties to being shut down.
While Frizzera said the apparently altered reports raise red flags, the most crucial distinction is whether an investigator finds a "deficiency" to exist. None of the reports filed in van Putten's case cite a deficiency, a fact cited by the hospital in defending its care.
Inova spokesman Tony Raker said the complaints were "the subject of intense regulatory investigation, review and evaluation, resulting in confirmation of Inova's provision of appropriate care with respect to each and every consideration." He declined to discuss the case further.
The Van Puttens believe the patchwork quilt of overlapping regulation has made it easier for regulators to pass the buck. They suspect regulators fear punishing Inova, which has five hospitals with more than 1,700 licensed beds throughout northern Virginia and is one of the region's largest employers with roughly 16,000 employees. Former Vice President Dick Cheney received a successful heart transplant there.
Van Putten's widower, Allen, and their daughters have been battling the various medical bureaucracies for nearly a year. They considered suing, but said liability limits wouldn't make it worthwhile. After she died, they sought to protect future patients from what she endured. They say Sharon asked them to do so.
"I failed as her advocate," her widower, Allen Van Putten, said. "I'm not sure what I could have done differently. But even if there wasn't anything, the fact is, I was a failure, and I tell her how sorry I am for that multiple times every day."