Wall of Silence
Janice M. Scully, MD reports running into a "stony wall of
when trying to learn what went wrong with her own care.
Mention to anyone in medicine that only 2% of adverse events are reported and derision and scoffing often are the response. But here is yet another example of why it is so.
Janice M. Scully, MD, discovered a hard mass the size of a fist in her own abdomen. They did a CT scan of it and a radiologist then explained that they were going to perform a diagnostic needle biopsy on it, something that is performed thousands of times per day across the country. He explained that he would place the needle through her skin while being guided by a CT scan. He would remove a small piece of tissue for analysis. He said complications were rare. She would receive no medications except for mild sedation. She could expect to be home in several hours.
Isn't that what they always say?
Afterwards he said that there had been some bleeding in her abdomen and so he had injected some D-Stat. The radiologist charted in his procedure note "d-Stat given", but then after that it wasn't charted in the progress note. Unless someone was very meticulous in their search, they would never find this technical procedure note.
Eventually Dr. Scully would learn that D-Stat is a powerful clotting agent. Instead of waiting for the bleeding to stop on its own, as most would have, he had used D-Stat. She began experiencing the worst pain of her life. Half an hour after the injection a radiology nurse noted, "Patient writhing in 5/5 pain."
It was only later that she determined (on her own through extensive investigation) that the radiologist had injected the clotting agent into an artery. Blood no longer was flowing to six feet of her small intestine. When asked about the problem, the radiologist created an explanation that had nothing to do with him or anything he had done. He attributed the post-op problem to simple peritoneal irritation. People in medicine do not report information that could indicate a fault with their practice, or the practice of anyone in medicine. Instead, routinely they create speculations that suggest it has nothing to do with them or anyone else in medicine (ask any patient who has tried to get iatrogenic injuries diagnosed).
Dr. Scully was given morphine and wheeled to recovery.
Since it wasn't in the record where anyone could find it, other doctors examining her didn't know about the D-Stat. Her husband informed them of it and they made no note of it either - not even a "husband says" note in case someone further down the line needed to know. The patient was a physician. If they didn't believe the husband they could have asked her for confirmation, or they could have asked the radiologist who used the D-Stat, but information gathering for accurate reporting and diagnosis is the opposite of what is done in medicine. Patients would be better off with it, but providers are better off without it and so that is what we get.
Where are the reliable narrators in medicine?
Her husband asked if the D-Stat could be the problem, but was told, "No. We use that all the time." Despite the morphine drip she had more pain and vomiting the next day and finally her husband wanted someone other than the radiologist to guide this case and he asked for a surgical consult. Would patients who weren't married to physicians have known enough to guide their own care this way?
Dr. Scully had six feet of her small intestine removed and spent a week in the hospital. The radiologist said he didn't understand what happened and took no responsibility. The surgeon wrote in the summary that she had a dead bowel, but never suggested why. The oncologist, who was the physician she had gone to see originally, refused to talk about it. Can these people be described as being unaware of negative information that should be reported?
There are physicians who say that the way to work on patient safety problems is by creating a board of experts to investigate errors. How are they going to know about them? According to all the healthcare professionals working on this matter, there was no error. According to the record, the patient merely had a peritoneal irritation unrelated to any actions taken by anyone in the hospital.
It's hard not to believe your own crap
Someone in the hospital quipped that bad things always happen to doctor-patients, which could be the perception of a community that has more difficulty remaining unaware of problems caused for members of their own community. Members of their own community are more knowledgeable and articulate than other patients. When bad things happen to patients with less of an ability to understand their situation and make themselves heard, healthcare has a greater ability to dismiss them as frivolous and cleanse the record.
When she got home she wrote letters and asked questions. No one was helpful. Not even the CEO of the hospital who had been one of her professors during her internship. He promised a formal explanation, but never gave one. All of the consulting radiologists at that hospital said that the use of D-Stat in this situation was within the acceptable standard of care. What is the definition of "acceptable standard of care?" With some investigating she learned that the use of D-Stat in this situation certainly was not a normal standard of care.
Dr. Scully wrote to the author of the review article on needle biopsies. "What," she asked, "are the guidelines for the use of D-Stat during abdominal needle biopsies?" There are none. He never had heard of anyone using it for that. She asked an interventional radiologist at an academic institution who said his hospital didn't use D-Stat for that either. The label on the drug warned that "Injecting D-Stat into a blood vessel can cause injury and death."
Normally competent doctors do not use D-Stat in this situation.
It wasn't until three and a half years after the incident that she finally had gathered enough information and understanding to write about it. In Medical Economics she wrote, "I'd sought this simple explanation from my caregivers and others. What I'd encountered, instead, was the wall of silence that victims of medical error too often run up against."
Imagine how long it would have taken for a patient who wasn't a physician to get the information and make sense of it. Many never would. For the ones who eventually manage to, the first response of medicine often is aspersions about why it took them so long to complain if it is not a just another frivolous invention. It is a pejorative question built on willful ignorance. She is a physician and it took her more than three years. It would be a rare patient who could get to the bottom of such a situation in less time. Medicine does more than just not report. It stifles and stymies the those who try to report, even when they are physicians.
Healthcare professionals believe and announce that their foremost concern is the well-being of patients. If it were so, they would report instead of maintaining this wall of silence.
JCAHO requires disclosure to patients of sentinel events. The AMA states that, "the physician is ethically required to inform the patient of all the facts necessary to ensure understanding of what has occurred" after an adverse event. It also states that liability concerns should not impede disclosure. On top of that there are federal mandatory reporting laws. Yet still the reporting rate is only 2%. Ever ask a healthcare professional about this? They believe they report everything. The gap between the truth and their self-serving beliefs is lethal for patients.