Martha Deed, PhD
Retired Psychologist; Consumers Union Safe Patient Project Advocate;
National Quality Forum Patient Safety Committee (former member - 3 years); Technical Expert Panel (TEP) member for several patient safety measure developers
When her only child, Millie Niss, developed a rare autoimmune disease (Behcet's) at age 19, Martha Deed became her daughter's caretaker during episodes of acute disability. Behcet's is not considered life-threatening unless treatment errors occur. For the next 17 years, Millie and Martha advocated for Millie's medical care. They launched a successful collaboration of multi-genre literary projects, most of which were published. Millie died of multiple medical errors and a critical misdiagnosis in 2009 despite Millie's and Martha's best efforts. After Millie's death in a WNY community hospital, Martha followed Millie's wishes: an autopsy, complaint to the NYS Dept of Health (2 citations issued to hospital). She reconstructed Millie's hospital course through medical records, Millie's emails, logs and notes (Millie was on a respirator and thus a record exists of all of her contacts with hospital personnel) in a multi-genre fatality review, The Last Collaboration, which has been used by several medical schools. In 2017, Martha published Culture Shock (Friends of Spork) a book of women's childbirth stories documenting deterioration in maternity care since the 1970s. She hopes the experiences of women decades ago in Europe and North and South America will help contemporary women arrange for safer pregnancies and births.