Patients suffer in a system without oversight

By ERIC M. WEISS and DAVE ALTIMARI
This story ran in The Courant on October 13, 1998

Had Gloria Huntley been able to move, had she not been bound to her bed with leather straps for days on end, perhaps she would have tried to draw the attention of the inspectors who were conducting a three-day tour of Central State Hospital.

Had she been able to move, had she not been pinned down by the wrists and ankles, she might have held up a sign, as she had done before when a visitor came through Ward 7. Her handwritten plea was simple: "Pray for me. I'm dying."

But the inspection team from the nation's leading accreditation agency never noticed Gloria Huntley before leaving the Petersburg, Va., psychiatric hospital.

The three inspectors from the Joint Commission on the Accreditation of Healthcare Organizations issued Central State a glowing report card -- 92 out of 100 points. They also bestowed the commission's highest ranking for patients' rights and care when they concluded their review on June 28, 1996.

The next day, Gloria Huntley died. She was 31.

Her heart, fatally weakened by the constant use of restraints, had inflamed to 1 1/2 times its normal size. In her last two months, she'd been restrained 558 hours -- the equivalent of 23 full days.

Nine months later, the Joint Commission gave Central State an even better score in a follow-up review -- even though Huntley's treatment would ultimately be labeled "inhumane" by the state of Virginia and condemned by the U.S. Justice Department.

"How could JCAHO give Central State the highest rating in human rights when they were killing people?" asked Val Marsh, director of the Virginia Alliance for the Mentally Ill.

The way the country's health care system works, how could it not?

The Courant's nationwide investigation of restraint-related deaths underscores just how faulty -- how rife with conflicts of interest, how self-protective, how ultimately ineffective -- the system of industry oversight and government regulation really is.

The health care industry is left to police itself, but often doesn't.

Time and again, The Courant found, when it comes to the quality and safety of patient care, the interests of the industry far outweigh the public interest.

"One reason you have overuse and misuse of restraints is because oversight is practically nonexistent," said Dr. E. Fuller Torrey, a nationally prominent psychiatrist and author of several books critical of the nation's mental health system. "And the health industry doesn't want oversight."

The chain of agencies, boards and advocates that is supposed to provide oversight -- the kind of oversight that might have prevented Huntley's death and hundreds like it -- often breaks down in multiple places.

But the heavy reliance on the Joint Commission -- an industry group that acts as the nation's de facto regulator -- lies at the core of the problem.

The federal government relies on the private nonprofit agency's seal of approval for a psychiatric hospital's acceptance into Medicare and Medicaid programs. And 43 states, including Connecticut, accept it as meeting most or all of its licensing requirements.

But the Joint Commission doesn't answer to Congress or the public. It answers to the health care industry.

The Joint Commission was founded in 1951 by hospital and medical organizations, whose members still dominate the commission's board of directors. The commission is funded by the same hospitals it inspects.

How tough are its inspections?

Of the more than 5,000 general and psychiatric hospitals that the Joint Commission inspected between 1995 and 1997, none lost its accreditation as a result of the agency's regular inspections.

None.

When extraordinary circumstances arise -- a questionable death, for instance -- the Joint Commission may conduct additional inspections. Even then, less than 1 percent of facilities overall lost accreditation.

Central State was not among them.

Joint Commission officials are the first to say they are not regulators. Participation is voluntary, and 83 percent of hospitals inspected were found to have shortcomings that needed to be addressed.

"Joint Commission accreditation is intended to say to the patient: This is a place that does things well and is constantly working to improve things," said Dr. Paul M. Schyve, a psychiatrist and senior vice president of the Joint Commission.

If the industry is not adequately watching itself, neither is the government. The nation's top mental health official says he has little latitude when it comes to tougher regulation and oversight.

"Most rules governing health care have been left to the states," said Dr. Bernard S. Arons, director of the U.S. Center for Mental Health Services.

When it comes to mental retardation facilities, in fact, inspection is left largely to the states.

But their record is not much better.

The General Accounting Office, the investigative arm of Congress, has found that state regulators are loath to punish state-run facilities.

In a study of state mental retardation centers, the GAO found "instances in which state surveyors were pressured by officials in their own and in other state agencies to overlook problems or downplay the seriousness of deficient care in large state institutions."

When state regulators do show up, their inspections are scheduled with such predictability that facilities can beef up staff, improve services and even apply fresh coats of paint. Often, only the new paint remains after the inspectors leave.

"These visits provide only a snapshot," said William J. Scanlon, director of health care studies for the GAO. "And it may be a doctored snapshot."

It is only when the system utterly collapses, as in the Gloria Huntley case, that the federal government intervenes to set rules for patient care.

Justice Department abuse investigators, who have authority to intercede when civil rights violations are suspected in publicly run facilities, often find these same facilities were recently given clean bills of health by licensing agencies or the Joint Commission.

"The use of restraints is clearly a very big problem and a very significant issue in nearly all of the institutions we investigate," said Robinsue Froehboese, the top abuse investigator at the Justice Department.

But with a staff of 22 attorneys, Froehboese's office can undertake only a handful of major investigations each year.

"Nineteenth-century England had a better oversight system than we have now," said Torrey, describing an English system that used full-time government inspectors to check every psychiatric facility without prior notice.

At Central State, the warning signs should have been apparent. But Joint Commission inspectors review just a sampling of patient records -- a sampling that may not include problem cases like Gloria Huntley's.

Anyone who did look at Huntley's records would have known her health was failing -- and that heavy use of restraints was a primary reason.

Two years before Huntley's death, a doctor warned officials at Central State that she would die if they didn't change her restraint plan.

"Staff members should watch their conscience, and those in charge must always remember that following physical struggle and emotional strain, the patient may die in restraints," stated the ominously titled "duty to warn" letter.

Even if the Joint Commission inspectors had missed Huntley in particular, there were other cases at Central State that should have raised red flags. One patient was restrained for 1,727 hours over an eight-month period, yet another for 720 hours over a four-month period, according to a U.S. Justice Department report.

So, in many respects, the investigation into Huntley's death is most remarkable in that it happened at all. When she died on June 29, 1996, the police were never called.

It took a hospital employee's anonymous call to a citizens watchdog group, days after Huntley's death, to tip off the outside world that she died while being restrained -- and not in her sleep as hospital officials told family members.

The Courant's investigation found at least six cases in which facilities, wary of lawsuits and negative publicity, tried to cover up or obscure the circumstances of a restraint-related death.

"It's sort of a secretive thing," said Dr. Rod Munoz, president of the American Psychiatric Association. "Every hospital tries to protect itself."

"The incentive is to settle with the family, fix it internally and move on," said Dr. Thomas Garthwaite, deputy undersecretary of health for the U.S. Department of Veterans Affairs.

Many states, including Connecticut, have laws that shield discussions among doctors that explore what went wrong. The laws are designed to promote candid discussions, but the solutions often don't leave the closed hospital conference room.

Garthwaite and other experts said hospitals need to share problems and solutions to prevent deadly errors from being repeated. Just a year ago, the VA began a comprehensive system to track all deaths and mistakes.

But a plan by the Joint Commission to do the same all across the nation has been stymied so far by the powerful American Hospital Association.

The AHA notified the Joint Commission in January that the proposal had created a "firestorm" among its members, who worried that they would have to turn over "self-incriminating" documents.

"We've tried to make the program workable, so people would not be afraid to report on a voluntary basis," said Dr. Donald M. Nielsen, a senior vice president of the American Hospital Association. He said the two groups agreed last month on some ground rules regarding the issue.

With the industry failing to monitor itself, with government regulators unwilling to challenge the industry, uncovering abuse is left to "protection and advocacy" agencies established by Congress in each state.

Despite $22 million in federal funding this year and broad authority to root out and litigate cases of abuse, even some advocates turn a blind eye to investigating deaths.

Desperate for help, Gloria Huntley turned to one of these organizations in her last months of life.

Not only was her complaint not investigated, but three weeks after her death Huntley was sent a letter saying the advocacy agency was dropping her case because it hadn't heard from her in 90 days.

The letter ends: "It was a pleasure working with you to resolve your complaint. I wish you the best of luck in your future endeavors."

Advocates say they have too little funding for their broad charge, and are fought every step of the way by hospitals and doctor groups. Scarce money and staffing are used just to secure basic information.

"It's a David and Goliath battle," said Curtis L. Decker, executive director of the group representing advocacy organizations nationwide. "And Goliath is winning."

Hospitals see no need for drastic change, let alone more government intervention.

"Given the speed of government, it is often better to allow the private market to work issues out," said Nielsen of the AHA. "Joint Commission standards have been revised recently and are continually being improved."

Huntley's family might take issue with that assessment. They have filed a civil rights lawsuit in federal court seeking $2 million, and a wrongful death lawsuit in state court seeking $450,000.

"We knew from the get-go things weren't right when they told us she died in her sleep," said Paige Griggs, Huntley's sister-in-law.

"We thought she was being taken care of."

Courant Staff Writers Kathleen Megan and Dwight F. Blint contributed to this story.

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