Newsday (New York, NY)

Barbara Desiderio still remembers the 1 a.m. phone call from the hospital, the voice on the other end of the line saying her son’s condition had changed.

By the time she made it from Centerport to the hospital early Dec. 6, 1995, Desiderio’s 28-year-old son, Robert Jankowski, who had struggled with asthma since childhood, was dead. And all hospital officials could tell her was that he had suffered a sudden cardiac arrest.

Years later, when Desiderio scoured her son’s medical records, she discovered that hospital staff had given him Propulsid, a heartburn medication with a label warning it was not to be mixed with the antibiotics and antifungals Jankowski was on because it could trigger heart problems and sudden death.

As the story of 17-year-old Jesica Santillan’s botched heart and lung transplant has captured the public’s attention in recent weeks, there has been renewed scrutiny brought to what some call an epidemic of medical errors in U.S. hospitals. Shortly after Santillan’s first surgery, the Duke University Medical Center transplant team members made the stunning admission that they had

violated a basic rule of medicine – forgetting to do a simple check of patient and donor blood type compatibility. Santillan, who was from Mexico, died in Raleigh, N.C., on Feb. 22, two days after receiving a second set of organs.

Studies say medical errors are endemic. Between 44,000 and 98,000 Americans die in hospitals each year as a result of medical mistakes, more than those who die of car accidents, breast cancer or AIDS, according to a National Academy of Sciences‘ Institute of Medicine report. The figure includes 7,000 Americans who die of prescription drug errors alone.

Many who believe they were victims of medical mistakes may never know all the facts unless they file a malpractice lawsuit, a process that has come under fire by physicians who want strict limits set on monetary awards. Yet one in five Americans responding to a recent survey said they believed either they or a family member had experienced a medical error or prescription drug error, according to a survey by the Commonwealth Fund, a private nonpartisan foundation that supports research on health and social issues.

“Medical errors are not uncommon,” said Dr. Stephen Schoenbaum, senior vice president at The Commonwealth Fund and a physician. “They occur all of the time.”

At a gathering held in Freeport last month by PULSE, a support and advocacy group for injured patients, victims of poor medical care sat in a church meeting room, one by one relaying stories of bad or botched care, disfigured bodies and missing loved ones, and terrible things that shouldn’t have happened, didn’t need to happen.

Joanna Amato described how her mother Angela, a 52-year-old Smithtown homemaker, died of malnutrition while under the care of a physician. The doctor had been treating Amato aggressively for seven years with a variety of medications that produced debilitating side effects and food allergies. She eventually had to restrict her diet to turkey, bread and water, her daughter said.

During the entire time Angela Amato was seeing the physician, he was, unknown to the Amato family, under investigation by the state Health Department for medical incompetence and fraud. Last April, the state’s Office of Professional Medical Conduct announced it had found the doctor guilty of negligence on more than one occasion and said he had subjected patients to unwarranted treatment.

“If she even knew he had been under investigation at some point, she would have left him – I have no doubt,” Amato said of her mother. Joanna Amato, who was also being treated by the physician, has filed a medical malpractice lawsuit against him in Suffolk Supreme Court with regard to her own care.

The physician, who is on probation but is allowed to practice, declined to comment.

PULSE, the organization that sponsors the support group meetings on the second Sunday of each month, is an independent organization whose acronym stands for Persons United Limiting Substandards and Errors in health care. It was founded by a Wantagh mother who was motivated to make changes in the system 13 years ago, when her own 3-year-old son Michael died after surgery to remove his tonsils and adenoids.

In the week following his surgery, Michael Corina was bleeding from the mouth and vomiting large clots of blood, and his mother Ilene sought help from several physicians, including the surgeon, as well as an urgent-care center and a hospital emergency room. They all reassured her the boy was fine, but eight days after the operation, Michael died. Corina now believes that Michael continued to bleed from the wound and was swallowing the blood, which led to blood poisoning.

Each story shared at the support meeting was more devastating than the next. Michael Intelmann, who is from North Merrick, said he lost his wife of two years after an elective stomach stapling operation. The couple had selected the surgeon with great care, and the surgery itself went smoothly, but Intelmann said the hospital staff failed to prevent and then manage the serious complications she developed.

As Darlene Intelmann languished in the hospital, she became malnourished, because her new smaller stomach couldn’t take in enough nutrients, Intelmann said. Her kidneys failed, she had a stroke, and she died eight months after the surgery, Intelmann said. She was only 50.

“No amount of money is going to bring her back,” said Intelmann, who is considering legal action. “But I want to know what went wrong. I want to know why my wife died.

Leonard Joseph, a father of three from the Bronx, lost his wife Marlene in August 1999 from a botched epidural administered during labor by a brand new medical resident at Jack D. Weiler Hospital of Albert Einstein College of Medicine in the Bronx. Joseph said his wife had neither requested nor consented to an epidural.

In the confusion that followed, hospital personnel attended to the newborn baby, Joseph said, while his wife, who had two older children at home, slipped into a coma.

Joseph has sued the hospital, which declined to comment. “They act like my wife’s life wasn’t worth anything,” said Joseph, who cares for his three children, including the baby girl born that day in 1999, with help from extended family.

In many cases, relatives who lose a family member to a medical error don’t even know a mistake was made, and are wracked by guilt that they could have prevented the death if they had been watching more closely or known what to watch for.

“I felt such guilt that I had left him that night … that I wasn’t there when he died,” Desiderio said of her son’s death, even though she had been told earlier that evening that her son was stable and she should go home and get some rest. “I just wanted an acknowledgment, that there had been a mistake.”

A spokesperson for the hospital that treated Desiderio’s son declined to comment on the case, citing medical confidentiality. Desiderio is a plaintiff in a class-action suit against Janssen Pharmaceutica, the manufacturer of Propulsid, which has been linked by the U.S. Food and Drug Administration to 80 other deaths and was taken off the U.S. market in 2000.

A spokesman for the company said the drug’s label was updated several times to include information about possible side effects, but that it continued to be used inappropriately.

Several family members of injured patients said it is often the quest for answers that fuels their anger and motivates them to sue.

“It’s often not the idea of the money,” Corina said. “It’s the idea that no one is held accountable.”

Doctors in several states have begun an aggressive campaign, encouraged and some say orchestrated by the Bush administration, to push for laws that will severely limit financial compensation for patients injured by medical mistakes.

Physicians involved in the campaign, who complain they must pay steep insurance premiums in order to stay in business, say injured patients should be compensated for economic losses like lost wages or medical costs, but they argue that awards for pain and suffering and punitive damages should be limited to $250,000.

If that were the law of the land, it is possible the family of Jesica Santillan would not be able to find a lawyer, because the girl had no lost wages, according to the Foundation for Taxpayer and Consumer Rights, a consumer group in California, which already has laws capping non-economic damages at $250,000.

What is really needed, Long Island patient victims and family members say, is a comprehensive set of reforms aimed at systematically eliminating errors at every level of the health care system.

“We’re saying, ‘Let’s fix the system,'” said Corina, who is a member of the board of directors of the National Patient Safety Foundation, an independent nonprofit partnership of health practitioners, health product manufacturers, consumers and others. “Why are we even talking about tort reform? A lot of other things have got to come first.”

But physician leaders like Dr. Marc Greenwald, a surgeon who is president of the New York Medical Staff Leadership Council, a group of Long Island physicians pushing for caps on damages, said hospitals throughout the region have been aggressive in implementing quality management initiatives.

The North Shore-Long Island Jewish Health System, for example, has attempted to reduce the single largest source of medical errors – medication errors – through a series of simple steps such as identifying dangerous abbreviations and issuing strict rules about decimal points.

“Micrograms are often expressed with a Greek letter that can look similar to the abbreviation for milligram, even though the amounts differ by 1,000-fold. So we avoid the abbreviation for microgram,” said Dr. Michael Grasso, who chairs the system’s Committee for Safe Health Care Practices. The system is in the process of purchasing a computerized prescriber order entry system, he said.

Patient advocates praise reforms by the Veterans Administration, which has implemented a system aimed at eliminating errors by analyzing not only the mistakes that cause injuries but also the so-called “close calls” or “near-misses.”

“Usually there are 100 to 300 close calls before an actual event happens, just as with car crashes, if you reflect on your own experience,” said Dr. John Gosbee, a senior official with the VA’s National Center for Patient Safety. “So what we’re trying to do is get people to report close calls … and look at the root causes behind them.”

The VA has also created a national reporting system that gathers and analyzes information about medical errors committed at more than 160 of its hospitals nationwide.

The VA in Northport uses bar codes on medications, matching them with bar codes on patient wristbands to reduce medication errors, and has computerized its patient records, said Connie Manisero, the nurse manager who runs the bar code medication administration program.

“Once you have it, you don’t know how you ever lived without it,” said Florence Fallon, the hospital’s patient safety officer.

And the system actively encourages doctors and other care providers to be frank with patients and provide full disclosure about errors that contributed to poor outcomes. The system also provides an alternative to litigation by allowing patients to file tort claims for compensation with a regional VA council, that can settle with the patient and provide an award from the U.S. Treasury Judgment Fund, said Joe Sledge, spokesman for the VA in Northport.

“If the VA denies the claim, the veteran has one of two choices: he or she can file an appeal … or a lawsuit,” Sledge said.

Amato still doesn’t know everything she’d like to know about her mother’s death. Although she is grateful to the state Office of Professional Medical Conduct for monitoring physicians, she thinks patients have the right to be informed if their treating physician is under investigation for incompetence.

She echoed a line that almost all of the family members used during the support group meeting.

“There was no reason for this,” she said. “This didn’t have to happen.”