There is nothing more powerful than a personal experience. Helen Haskell represented this at the Telluride Patient Safety Roundtable. Her son, Lewis, died of medical misdiagnosis which inhibited the team from providing appropriate life saving treatment, his story was recounted in a video produced by Drs. Mayer, McDonald and the team at Solid Line Media. The story and the courage Helen has to continually attend the conference and provide a first-hand experience of an unsafe medical system was by far the most memorable things about the week. There were lots of memorable things about the week, including the views from the gondola required to scale the mountains and the dedication of the faculty members, but Helen’s story will continue to stay with me. I am hoping that her son’s memory can act as a guiding force for all of us. A memory we can return to when we have lost our way along the road toward patient safety. A memory that will guide us back toward putting the patient and family as the center of our care if we go astray due to personal, family, financial or others factors. In the beginning of medical school, I was astounded by how many of the students were truly good people, they were caring people with big hearts and understanding minds. Research shows that our empathy decreases as our medical education progresses and reaches a nadir by year 4. I can only assume that it continues to fall as we take on the responsibilities of internship and balance this with the desire and responsibility of starting a family, being a good son/daughter, neighbor and colleague. I hope that Helen and Lewis’ story counteract this passivity and continue to call us toward our original goal of helping others, which, as the Hippocratic oath correctly details, first requires us to do no harm.
On neurology rotation I saw a case that exemplified a large number of the topics we discussed at the Telluride Roundtable this year. This was the case of a 71-year old woman that came in for an outpatient endoscopy with dilation for a post-surgical esophageal stricture. During the procedure she desaturated and was intubated within minutes. The procedure was suspended and physical exam at the time showed no apparent life threatening abnormalities. Within 2 hours the physical exam showed anisocoria with the right pupil dilated to 4 mm. A stat CT scan of the brain showed “bubbles” within the cerebral veins as well as extensive cerebral edema and evidence of an uncal herniation with compression of the left cerebral peduncle. Mannitol was run, the head of the bed elevated to 30 degrees, a central line was placed, the ventilator settings were changed to hyperventilation protocol and an FiO2 of 100%, and an extra ventricular drain was placed. Despite these measures the patient continued to develop cerebral edema and had intracranial pressures into the triple digits throughout the night, she was declared dead by brain criteria the following day by our team.
I went home and cried that night. I was shocked by the thought that someone can come into the hospital thinking they are getting a benign routine procedure and die from massive cerebral edema within hours. The patient’s husband was in the room the entire time; he was so strong to stand beside her during the interventions and stronger still for his open attitude toward the hospital staff. Luckily he was not angry or resentful of the staff, and believed that they did everything in their power to save his wife. This is lucky for him, but also for the hospital because I don’t think our staff is equipped to manage such events. I was waiting for the “safety officers” to come debrief the husband and explain the situation to him, I was counting the 15 minute deadline that they had and wondering how their involvement would have changed the course of events. I realized that these professionals could have a dramatic calming effect on the entire care team. During the intensive bedside interventions the team was perplexed by the etiology of the patient’s neurological deterioration. Many nurses were asking, “what happened” “what’s our story” “what should I tell the patient’s husband” and no one took the leadership role to answer these questions. In truth, no one knew the answer but no one stepped up to simply say, “we don’t know but let’s focus on stabilizing the patient and then we will investigate the cause.”
I call this a poor outcome rather than an error because our attending found a report of 20 such cases in which air embolic strokes occurred during or after procedures that require insufflations (endoscopy, laparoscopy, colonoscopy etc). This then becomes a rare but known complication of the procedure which made me think of the informed consent conversation we had during the roundtable and of Michael Skolnik. I was fairly sure that no one informed the patient of the risk of air emboli infarcting her brain. The pathogenic theory is that microscopic tears in the viscera allowed air to enter the esophageal veins, traveling to the IVC and through the lung vasculature to the systemic circulation (via pulmonary arterial-venous shunts). We believe that the patient’s desaturation was secondary to pulmonary emboli from the same mechanism. Does this a represent a reasonable risk that the patient deserved to be notified of? I don’t know. Twenty cases is not a large number, but the published case reports most likely underestimate the true incidence. Would I have wanted to be informed of this prior to the procedure? I don’t know. I would have had to weigh the risk against the potential benefit. This is the essence of shared decision making –giving the patient the facts and allowing them to ascribe their value assessment onto those facts and arrive at a logical decision. Without knowing this patients baseline I was left feeling only sad for the outcome and the loss of innocence that occurs when something so precious is lost- a life and a trust in the medical community.
I am glad that the patient’s husband did not see it this way, I am glad that he maintained respect for, and trust, in the doctors caring for his wife. When my grandmother died of hepatic failure after taking the antibiotic Trovan ®, and the drug was subsequently pulled from the market due to risk of liver toxicity, I started to question my faith in the medical community. I became committed toward the application of sound evidence to the relief of human suffering. My faith in the medical community was restored slowly over my first two years in medical school as I learned that most physicians operate with very good intentions but in a complex environment which is not readily transparent or controllable. The derogatory based jokes I heard during my third year (while I know not ill-intended) started to erode at that faith again. Attending the Telluride Patient Safety Roundtable completely renewed my faith in the medical community. I was inspired by the fact that such successful professionals take the time to teach medical students basic leadership and patient safety goals. In every conversation and action I could tell that they had the patient’s best interest as their primary goal. They renewed my faith in the medical community not only because they are true role models –individuals that I aspire to emulate, but also because they taught us how to lead the medical community into a more respectful patient driven culture, and I now know we can do it!