After 5 years of this work to improve healthcare safety and quality, I have become very weary. From my perspective, things are not improving very quickly. It seems I have become a magnet to strangers who have had tragic healthcare harm experiences. Many of these tragedies involve death and disability. Here are a few of the recent stories that complete strangers have shared with me in an airport, a hairdressers shop and on the phone. I am privileged that they trust me with their stories and that they have confidence in me to make a difference.
1. A woman in her late 40s sat next to me at the DCA (Washington DC) airport. I offered her a Wet One wipe to clean her hands after she ate a Cinnabon roll, and so the conversation started. She had mesh implanted for a prolapsed bladder. She said “It has ruined my life”. She is unable to have sex because of the pain and her husband divorced her. She makes frequent trips to a GYN office (not the one who did her surgery) for exams and reconstructive surgeries. That doctor told her that she repairs the many messes that her original doctor makes, but “you didn’t hear that from me” follows her comments. One doctor will not rat out another. She knows at least 4 other women who had similar surgical mesh outcomes (done by the same doctor) in my region who would share their stories. I encouraged her to talk with a local news reporter and I connected her with the reporter and others who can help her and the other victims of this local doctor to share their horrible stories. They can help to prevent this from happening to other women.
2. A hairdresser in my usual salon approached me when I was getting my hair cut a few weeks ago. She told me about her 77 year old Aunt, who was still an employed nurse, and who fell and broke her femur recently. She had surgery in one of my local hospitals. Within a day or so, she was critically ill with MRSA and sepsis. That Hospital said they couldn’t give her the care she needed so they transferred her to the other Hospital in town. She died within one week because of infection/sepsis. She was infected during her surgery. Then she told me about her sister. She had the sling placement surgery for her sagging bladder. This was done by a GU surgeon. She had excruciating pain after the surgery and made repeated visits to the Medical center ER for treatment. She was readmitted several times, but her surgeon kept insisting that there was nothing wrong, and there was no infection and she was discharged each time to suffer more at home. Her regular family doctor later detected something wrong with her heart. She was referred to a cardiologist, who told her there was nothing wrong with her heart. Finally she was admitted to the hospital again, in sepsis. The infection from her sling surgery had become systemic and affected her heart and she died. This debacle happened over a 3 month period, more than sufficient time for this infection to be diagnosed and treated. She was 36 years old and left a 4 year old child behind. Heartbreaking.
3. A retired RN who was an OR nurse in a local hospital, called me after I was in a newspaper article recently. I had been quoted in the paper about the death of a new Mom who died of necrotizing faciitis within a week of giving birth to her first baby. This nurse felt a need to tell me about her observations of 2 surgical cases involving NF during her career as a nurse. She described the surgeries to me in detail and they were horrific. One was a nosocomial (contracted in the hospital) post operative infection and he died. The other patient was transferred to Boston and he survived. She also told me about how her hospital hired people from a paper mill layoff, who were immediately placed in her OR. They had no orientation, certification or experience. They might have been a floor sweeper in the mill before they landed in her OR. She was ordered to teach them to scrub in. WHAT??!! No training, no knowledge of sterile technique, no familiarity with anatomy, instruments etc. Mill worker to scrub tech with nothing in between. No wonder people are getting infected in that OR…and who knows what else is happening there.
The pain, grief and suffering at the hands of healthcare providers continues. In some cases it is repetitive, untethered and unpunished. It is horrible and unacceptable and although I am weary and disgusted that these things continue to happen, I know I can never give up. My heart breaks for these victims and their survivors. I extremely grateful to them for trusting me with their stories.
Things that I recognize in these three women’s stories are provider arrogance, dismissal of suffering and pain, lack of respect for patients, secrecy, protection of one doctor by another, lack of accountability, missed diagnosis and misdiagnosis, failure to rescue, failure to fund appropriate safety measures and training, cheap labor, license to continue doing the same harmful things over and over, no accountability, devalued life. Where else in society does ongoing harm to human beings, that sometimes causes death, go unreported, unpunished and uncontrolled. Repetitive harm is criminal. And those who continue to hide it are complicit in the crimes.
This has to stop.