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Memo to Congress: Listen to the Patients on National Patient Safety Day

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As Congress tinkers with health care reform, lawmakers should listen to what a special group of advocates is trying to tell them. There is no better day to listen than Saturday, July 25, the ninth annual Patient Safety Day.

These patient safety advocates are laypeople who have turned their own tragic losses -- of husbands, wives, sons and daughters -- into personal crusades to make our hospitals and clinics cleaner, safer places so that others won't have to go through the pain they have experienced. And one demand that many of them express is that the medical industry become more open and honest in dealing with its tragic mistakes -- so that errors can become learning experiences.

Candlelight vigils are taking place across the country on Saturday to mark this date. The advocates who started this quiet annual commemoration do not have, for the most part, medical or nursing degrees, but they know patients and their families can make valuable contributions to improving the quality and safety of the health care system. I learned many of their stories while researching my book on how patients can protect themselves and get the best medical care by becoming active participants in their own care. These heroes of patient safety include people like:

• Sorrel King, a former fashion designer who lost her daughter Josie at age 18 months from neglect and an overdose of drugs at Johns Hopkins Hospital. Ms. King and her husband Tony set up a foundation in Josie's name that promotes a family-activated "rapid response team," a formal mechanism in hospitals that lets families call in a team when the patient seems to be deteriorating but hasn't yet hit a full Code Blue crisis.

• Nancy Conrad, whose husband Pete rocketed to the moon and back safely in 1969 but died thirty years later of an emergency room error after a motorcycle accident when he broke some ribs. Nancy's group, the Community Emergency Healthcare Initiative, gives annual awards to leaders in the patient safety movement.

Cathy Lake, whose mother Catherine Reuter died after being burned in an operating room fire because a flammable alcohol-based solution had been used to clean her skin and then the fumes were ignited by an electro-cautery device used to seal blood vessels. Ms. Lake persuaded the Joint Commission, which accredits hospitals, to issue a "sentinel alert" about the risks of surgical fires and ways to prevent them.

• Sue Sheridan, the founder of two safety organizations, one called Parents of Infants and Children with Kernicterus, a brain-poisoning jaundice that happens just after birth when children with mild jaundice don't get proper treatment with photo lamps, and the other called Consumers Advocating Patient Safety, which has a variety of safety promotion programs.

A common theme of many of the grass-roots patient safety advocacy groups is the need for honesty in the health care system. Nancy Conrad teaches doctors and hospitals that when they stonewall and hide after a patient injury, they make new victims out of not only family members but the care providers themselves, because they fail to learn from their mistakes. Sue Sheridan, who lost a husband to one error and saw a son suffer a brain injury from another, says: "The nondisclosure of medical error is the most destructive phenomenon in health care. Trust and confidence disappear in a heartbeat." And the dissembling, she found, made it hard for her to heal from the losses she suffered, because it became harder to forgive those who pretended nothing had happened.

Some progress is being made to break the code of silence surrounding medical errors. Helen Haskell, who lost her 15-year-old son Lewis Blackman to a post-surgical complication in Columbia, S.C., has worked for the last five years with the University of Illinois-Chicago Medical Center to establish a model program. The university dropped its old "deny and defend" program in favor of one that tries to investigate all "adverse events" in the hospital within 72 hours and disclose the results to families shortly afterward. The tangible response includes waiving bills, apologizing and writing checks in compensation. In one report, the university had experienced only one legal claim after 40 such disclosures.

Stopping the medical billing is especially important to families who have just lost a loved one in suspicious circumstances, says Ms. Haskell, who had to fend off multiple bill collection efforts from the hospital that killed her son.

Still, the culture of silence is far more common in the medical industry, which claims it does its best safety work behind closed doors, despite numerous reports that show how counter-productive and corrosive secrecy is in an industry that is supposed to be devoted to healing.

The patients and their families who are rallying Saturday will give quiet testament to a fundamental truth: They want to be treated with respect and dignity and honesty, so that lessons can be learned and then, what has happened to them will happen to no one else.