Portuguese-born António Prates was a young father seeking a better life when he and wife Maria moved from the Azores to greater Boston, Massachusetts. "He made the American dream come true," says his firstborn, Lucília. He purchased a home in the suburban town of Arlington and supported the family, putting three children through school by working as a drain layer and plumber.
António kept working well past retirement age, Lucília says, until he was diagnosed with kidney stones and followed the advice of a urologist to have them removed, in what he was told was a commonly-performed procedure. But while in the hospital for the outpatient surgical procedure, António contracted a staph infection and that, says Lucília, "marked the beginning of the most horrific six months of his life."
When outside bacteria and organisms are spread to patients through medical instruments, hospital surfaces and health care workers, the resulting staph infection can invade the body, pervasively causing disease. To battle the infection, doctors repeatedly readmitted António to the hospital and, finally, advised that his diseased left kidney be removed. "I knew enough to ask, 'Isn’t this dangerous?'" Lucília says now. "But when we questioned the urologist about the dangers of removing a highly-infected kidney by performing laparoscopic surgery, he confidently dismissed all of our concerns."
António returned home hoping the worst was behind him. But day after day, Lucília recalls, he would tell his family, "I feel terrible. I feel like I’m going to die." António’s doctors dismissed his complaints for weeks, Lucília says — until António was rushed to the emergency room with such severe rectal bleeding that he lost more than eight units of blood in a matter of minutes.
"He was admitted to the medical ICU where it was determined that the infected kidney stump had not been removed" and the spreading infection had caused bleeding of his aorta and colon, Lucília says. "In other words, our father was not only the victim of a hospital-acquired infection, but also of what hospitals call 'a medical adverse event.'"
Less than two weeks after emergency surgery to repair his colon and aortic artery, António was discharged from the hospital. "He tried to resume life, but life was never the same," Lucília says. "Our father continued to feel sick and would often tell his doctors, 'You guys did this to me.' He felt he was at the mercy of the doctors and a disconnected health care system that had failed him."
During a follow-up visit with António’s vascular surgeon, Lucília says, "our worst fears were realized. The emergency surgery had not been effective, and the infection continued to ravage his body." Because infection-damaged blood vessels weren’t adequately supplying his heart and remaining kidney, doctors told António that his only chance would be to undergo two additional bypass operations, three days apart.
Doctors described the second bypass as a rare and complex "non-textbook case," Lucília recalls. She approached it with dread, "feeling in my heart that this would be it." When she accompanied her father to the pre-op area, she says, "he was greeted by the crème de la crème of the anesthesiology and cardiology teams, and what still rings in my mind was the greeting: 'Hello, Mr. Prates. You know, this is as big as it gets.' I thought to myself, 'As big as it gets' — is this a football game we’re at? This is my father’s life!"
After the second operation, Lucília never again saw her father’s eyes open. He died two days later, a few weeks shy of what would have been his 73rd birthday.
More than five years after they lost the man they called "Pai" (the Portuguese equivalent of "dad"), Lucília, her sister Amy and brother Joe miss their father every day. So does his widow Maria, who, Lucília says, "is still in denial that this could happen in the country she calls home, her beloved United States."
António’s children have channeled their grief into outrage and advocacy. "Our father became a victim of a fragmented health care system," says Joe. "We need to have a groundswelling interest from consumers in order to change the health care structure that exists today. Perhaps we need public outrage. Enough is enough... We need not only to expect but also to demand quality health care for our loved ones and ourselves."
Throughout António’s ordeal, Lucília says, "I silently vowed to my father that his suffering would not be in vain." She has made it her mission to educate consumers, especially senior citizens, about how to advocate for their own health care needs. She is the statewide Director for the Massachusetts Senior Medicare Patrol Program, one of 54 programs throughout the country and U.S. territories funded by the federal Administration on Aging, to educate seniors and family members about preventing health care errors, fraud and abuse. "Elderly Americans, and all health care consumers, must understand the need to be vigilant about their health care and the health care of their loved ones," she says.
"The majority of physicians really want to do right by their patients," Lucília says. "But mistakes are made routinely. They not only cost billions of dollars, but they cost lives. It’s not right, it’s not fair, and we need to demand that this very flawed system is fixed. Does it have to totally implode before we do something?"