Alicia Cole
Founder, Alliance for Safety Awareness fo Patients
info@AliciaCole.com
Actress Alicia Cole could never have imagined the plot twist her life would take when she entered Providence Saint Joseph Medical Center for elective fibroid removal surgery in August of 2006. She left the operating room with a fever, nausea, and chills – all classic signs of sepsis – which were dismissed as “a bad response to the anesthesia.” Suddenly what should have been a two-day hospital stay rapidly descended into a two-month battle to save her life from the ravages of severe sepsis, Pseudomonas, MRSA, VRE and necrotizing fasciitis. Little did the patient know that the highly regarded Burbank hospital had just that month embarked on a study to reduce their post-surgical infections.
Thankfully, Alicia’s parents Ron and Betty Cole had come from Ohio to be there for her operation and care for her during recovery. Without them she would have died. It was her vigilant mother who during a dressing change, noticed the tiny black dot which appeared out of nowhere above the C-section incision. Within an hour the black dot was a quarter-sized pustule signaling the first signs of flesh-eating disease. Before she knew it, Mrs. Cole found herself assisting the doctor in a bedside procedure. She held her daughter steady while the doctor reopened the incision and then cut open the two rows of sutures he’d placed deep within her abdomen. No anesthesia. No betadine to clean the area. No sterile drape. No returning to the OR. Just immeasurable, excruciating pain!
After surviving six additional surgeries, nine blood transfusions and almost having her leg amputated, Alicia left the hospital with a cavernous open abdominal wound that took three years to close. The hospital meanwhile was cited by the local health department and CMS inspectors for being in violation of five state rules and ten federal laws for unsanitary conditions in their operating rooms, failures of infection prevention and control, and failure to report infections as mandated. The operating rooms were cited to the highest level of deficiency possible. Alicia also learned that while his medical board record was clear, there were six medical malpractice lawsuits against her doctor on file at the local Burbank courthouse. “How could all of this be?” she wondered and resolved to make sure this kind of nightmare would never happen to anyone else.
For the next ten years, Alicia’s life revolved around the multitude of weekly follow-up medical care – everything from daily hyperbaric oxygen chamber treatments, to silver nitrate burning of her wound bed, to pelvic floor rehabilitation. While still bedridden, using a ‘talk-to- type’ program and social media, Alicia began sharing her difficult road to recovery with others. Through video and blogs she documented the struggle of harmed patients to get complete copies of medical records or to correct inaccuracies. She shared examples of the deceptive behaviors and legal tricks employed by the healthcare system during nasty legal battles. In just a few months, the MySpace group Alicia created for Survivors and families touched by hospital infections and medical errors grew to over 2,500 people and she became one of the nation’s leading voices in patient safety. As soon as she was well enough, she also began going in person to medical schools and nursing programs to share her story and speak on infection prevention. Now she is sought after national speaker presenting at conferences, associations, universities and hospitals everywhere.
Alicia helped co-sponsor two California laws for public reporting of hospital infection rates and mandatory infection prevention education for all health care workers with patient contact (SB158 and SB1058, together known as “Nile’s Law” after 15 year old Nile Calvin Moss, the son of fellow advocates Ty and Carole Moss whom she met when they joined her MySpace group.) For nine years she fought for system-wide improvement by serving on the CA Department of Public Health’s Hospital-Associated Infection Prevention Advisory Committee. She still maintains her status as an advisor and subject matter expert for the committee’s Public Reporting & Education, and Environmental Cleaning sub-committees. She has worked with and served on advisory councils for CMS, the CDC, IHI, National Quality Forum, the Partnership for Patients and many more. The Caregiver Action Network aptly listed Alicia among its “25 of the Nation’s Best Practices in Patient and Family Engagement”. In 2015, Alicia was appointed by President Obama to serve a four-year Voting Member term on the inaugural Presidential Advisory Council for Combating Antibiotic Resistant Bacteria (PACCARB). The President also honored Alicia’s journey and prolific advocacy work in a national public address.
They say lightning doesn’t strike twice, but you couldn’t prove that by Alicia Cole. Unimaginably, in November 2016, the tireless advocate again suffered preventable medical harm. Hours after being admitted to the hospital for a sinus infection and early signs of sepsis, she found herself about to be immediately discharged when her 103 degree temperature broke. When she began to ask the infectious disease doctor about the specifics of her lab results and cultures, she was told there was no need for those since she had “simple sinusitis which could resolve itself at home.” When she asked for a second opinion Dr. Nazarian replied that he was the, “best infectious disease doctor in the Valley, probably the state. No one is going to tell you anything differently” and she did not see him again for two days. Following calls from fellow patient advocates and intervention from colleagues at the Los Angeles County Dept. of Health, the State Dept. of Public Health, the CDC and the Co-Chair of the Presidential Advisory Council, Alicia received a visit from the CEO of the hospital. He wanted to assure her that things would start to get done…. But it was too late. The sinus infection had already spread through her bloodstream to the weakest part of her body, the site of her original 2006 infection. Her hip was now hot, red and swollen from the abscess below and the four tunnels traveling along her femur. Within hours her family flew in to be by her side and she was once again in a fight to save her life and leg. ~ In a moment of casual reflection the doctor acknowledged that he had not read the history in her chart but never apologized for the life-threatening harm his decisions and arrogance caused.
Alicia had to put her life and advocacy on hold and spent all of 2017 recovering from two more surgeries, two more blood transfusions, central-line infections, another chronic open wound, weekly debridements and wound center treatments, anxiety, depression, and DVT blood clots in both arms. Her incredible healthcare odyssey is an 11-year case study in the state of healthcare, hospital-acquired infections, patient safety, and healthcare culture.
Battered, but not defeated, Alicia remains more committed than ever to improving healthcare quality, delivery of care, sharing her story, and protecting patients.
To see Alicia’s Patient Story, Click Here