They say when you lose a child, your life splits into “before” and “after.”
Before, my 15-year-old son Lewis was an extraordinarily promising boy. He was a brilliant student, a soccer player, an actor, a musician, a natural comedian. And he was healthy. His father and I thought that we were the luckiest parents in the world.But on Nov. 6, 2000, a Monday, the day my world stopped, my life turned into an “after.”
Lewis had gone to the hospital the previous Thursday for elective surgery to correct a chest defect. Over that weekend, he bled to death as various doctors and nurses missed the signs of serious complications and paid little heed to a mother’s warnings that her son was in trouble. He died because of the improper administration and monitoring of a medication.
Lewis’s death was made harder by knowing it could have been prevented. That’s why, since his death, I have been building a legacy for him, founding Mothers Against Medical Error and serving as the president of Consumers Advancing Patient Safety. CAPS is a nonprofit established to connect and empower individuals, families and health care providers who want to prevent harm in health care encounters. As patient safety advocates, we have helped pass laws, formulate policies, and organize patients all over the world.
Mothers Against Medical Error and CAPS both participated in the Partnership for Patients (PfP), a public-private collaborative led by the Centers for Medicare and Medicaid Services, made possible by the Affordable Care Act, to reduce harm in hospitals and increase meaningful patient and family engagement. I have also served as a national adviser for the Agency for Healthcare Research and Quality and I work with the National Quality Forum on quality measures for the Centers for Medicare and Medicaid Services, as well as with a number of other national, state and international organizations.
PfP ended last December, but CMS is launching a second round soon. We are eager to work with PfP 2.0 and are hopeful it will bring further success in reducing hospital-acquired infections and other harms. It is rewarding to see programs like this that improve health care delivery and make American health care safer. That is one of the aspects of the Affordable Care Act that many people may not know about.
There are other ways, too, that we can help families avoid the heartbreak we endured, like making information more accessible to patients and health care providers so they can make more informed decisions. Without accessible, high-quality information, everybody is simply operating in the dark.
I am doing what I can, in Lewis’s name, to make other patients safer. It’s not the legacy his father and I ever imagined for him, but it’s the one we have. Our obligation to Lewis and others like him keeps us focused on meaningful change.
There is neither health nor care unless it places priority on safety, quality, and the wishes of patients and families. The patient voice has been the most underutilized tool in health care.