Not Enough Oversight
To a certain extent, errors are inevitable. After all, health-care professionals are only human and everyone makes mistakes. "No system as complicated as health care can operate without the potential for something going wrong," says Eric Knox, M.D., director of patient safety at Children's Hospitals and Clinics in Minneapolis and St. Paul. But compounding the problem is the fact that medical mistakes are often swept under the rug. "Our health-care system does a terrible job of acknowledging errors, compared with industries like aviation or nuclear power," says Martin Hatlie, president of the Partnership for Patient Safety, a Chicago organization that advocates for improved safety procedures in health-care facilities.
This culture of silence can discourage caregivers from speaking openly when they mess up. "In the medical field, errors are accompanied by shame and blame. Nobody wants to talk about what happened, and this limits the discussion about what could be done to correct the situation," says Julie Morath, R.N., a board member at the National Patient Safety Foundation, an industry group founded by the American Medical Association.
Advocates say that the health-care industry is slowly becoming more candid about its flaws and faults. But in the meantime, parents of kids who see doctors or are hospitalized need to stay closely involved in every step of the process. Here's how to play a greater role in promoting your child's safety and well-being.
Trust your gut. Patient advocates say parents should question and even challenge doctors if something about a child's care seems wrong. "A medical degree doesn't automatically make a doctor the best person to decide what's right for your child," says Melissa VanPopering, an attorney with Women's Legal Referral Service, in Chicago. "As a parent, sometimes you can be the real expert."
Ilene Corina, of Nassau County, Long Island, has followed that advice ever since her 3-year-old son, Michael, died in 1990 when poor follow-up care after a routine tonsillectomy led to a fatal blood infection. Several years ago, when another son, then 6, developed a severe rash and a high fever, she didn't accept her pediatrician's diagnosis of eczema. "I'd never seen anything like it, and I knew something else was going on," she says. She went through two dermatologists and an allergist before getting the correct diagnosis of impetigo, a bacterial skin infection that requires antibiotics. "You need to have a certain amount of trust, but you also have to question," says Corina, who runs a support group for victims of medical errors.
Be selective about doctors. If your pediatrician or specialist isn't receptive to your questions or concerns, find someone else. "I often hear people say, 'I have a great doctor, but he has a lousy bedside manner,' " Corina says. "But if you're not comfortable talking with your doctor, you should think about switching practices."
Bear in mind that if your doctor is autocratic with you, he's likely to be that way with other people on your child's medical team. Some hospitals are actively working to change the doctor-as-God culture. In the Twin Cities, Children's Hospitals and Clinics has a policy that anyone in the chain of command can at any point challenge decisions about a child's care if she feels the patient's safety is at risk-and parents are pointedly made a link in the chain.
Stay vigilant at times of transition. Whenever care is being transferred from one place to another (say, from the E.R. to an operating room, or from there to the recovery room), watch for mix-ups. Ask that a nurse from the first department accompany your child to the next-to confirm his identity, brief the new caregivers on his condition and history, and review plans for his care. It's also worth getting your own copy of your child's medical records and carrying them with you so you don't have to rely on memory while providing your child's history.
Always get a second opinion. Even doctors can find medical advice baffling. When anesthesiologist Tammy Euliano, M.D., of Gainesville, Florida, learned that ventricles in her 18-month-old daughter's brain were abnormally large, a neurosurgeon initially advised putting the child through a dangerous operation that had potential for ongoing complications. But other doctors suggested that she wait, and the surgery proved unnecessary. "You should get as many opinions as possible," Dr. Euliano advises.
While most doctors are doing the best they can in a rapidly changing field, the better part of vigilance is assuming that a mistake can occur. "Miracles are performed every day with new technologies, knowledge, and drugs, but each new advance in medicine also carries new risks," says Morath. "Safety issues are changing all the time, and the task of dealing with them is never done."