Michael began bleeding a few days after surgery. I rushed him to the ED, where a surgeon cauterized a leaking blood vessel. I was told not to worry. This was the first of five visits in less than one week to four different physicians, all of whom gave me the same message: “Don’t worry.”
Michael died from blood loss eight days after what should have been a routine tonsillectomy and adenoidectomy. He was four months shy of his third birthday.
Grief-stricken, I sought solace and support in attending a support group for people whose children had died. Although this helped, it didn’t give me exactly what I needed. I was a parent who had experienced a medical error that caused the death of my child. I began speaking to people about patient safety. I found so many people who wanted to share their stories that I asked a church if we could meet once a month, and the support groups began. The doors were open to everyone; many who attended the meetings were health care professionals.
Then I heard of a group in Colorado called Persons United Limiting Substandards and Errors in Health Care (PULSE). Founded by Jennifer Dingman, PULSE is a support group for victims of medical errors. I realized there were others doing the same work I was, and I adopted the PULSE name and began holding monthly meetings on Long Island, New York. I am now the president of PULSE of New York.
After experiencing a medical error, some people have an initial need to talk about it with others and give voice to their anger and pain. PULSE meetings provide support for patients and families who need to share their stories. Survivors may also consider legal action because they’re searching for someone to blame for their misfortune, but no amount of money can ever bring back a loved one. PULSE can help families find alternatives to legal action, such as looking for ways to prevent medical errors.
PULSE attempts to reduce the number of errors by educating consumers about health care safety, through sharing the experiences of both health care professionals and consumers. Stories are told without naming hospitals or physicians: our policy is “no name, no blame.” Even the best hospital or most reputable physician can make a mistake, and there is an awareness that the stories are often one-sided.
I also run many community education programs. These 45-minute workshops help people become better health care consumers and teach patients how to partner with their physicians, nurses, and pharmacists to ensure that they receive the best possible care. The participants often learn from each others’ experiences. Safe medication administration is one important focus of the workshops (see “Welcome to Our Local Family Hospital,” above).
The workshops reach people of all ages, from teenagers to senior citizens. In particular, it’s through talking with teenagers, who are just starting to take responsibility for their health care, that I learn more about how confusion and fear can cause people to neglect personal health care. PULSE teen health advocates distribute educational brochures on topics such as what to expect on a well visit, what to do if one feels uncomfortable with a physician, and safe practices concerning medication.
Jennifer Dingman and I have gone on to cofound PULSE of America, a national organization (www.pulseamerica.org). Like its state counterparts, it provides support for survivors of medical errors and educates consumers about how to prevent medical errors and how to be proactive in their health care.© 2005 Lippincott Williams & Wilkins, Inc.