The team at the Educate the Young patient safety blog has posted a video about the Telluride patient safety leadership training experience. It is a 12-minute documentary that explains the experience and rationale behind this camp for medical students and residents, which my mother and I had the wonderful experience of participating in last summer.
John Banja, from the Center for Ethics at Emory University, has written a book about the psychological reactions of physicians to causing harm to patients, and why disclosure of harmful errors to patients is so difficult. His book is called Medical Errors and Medical Narcissism, and I highly recommend reading this book to gain a perspective on why physicians have such a difficult time honestly talking with patients about errors. In this post I summarize Chapter 2, in which Dr. Banja describes two models for rationalizing the concealment of medical errors. These rationalizations provide a way for the physician to feel satisfied with giving a less-than-truthful explanation (or no explanation) to the patient. Continue reading
I am now back in Seattle, home from the Telluride Patient Safety Roundtable & Summer Camp. I am very thankful I had the opportunity to participate. It was emotionally exhausting (I cried the first three of the four days), but I have a sense of hope. I met leaders in patient safety—some of whom I had seen in online videos, others I had not heard of. But the message from all of them was clear: There is no compromise in patient safety. No compromise in disclosure. No compromise in informed consent. Safety and transparency must underlie all of healthcare. And that is a very different perspective than my family has encountered in Kansas, at both the local hospital we are dealing with and at the state level. So today I feel hope knowing that my family is not alone, but I also feel overwhelmed knowing that those of us who believe in safety and transparency—and are not willing to back down—face tremendous obstacles. We have to change systems that would rather employ short-term thinking (don’t tell the patient or family what happened; blame the nurse for the error the system set her up to make) rather than long-term thinking (let’s uphold the patient’s right to know what has happened to his or her body; let’s talk about harm incidents with everyone involved and hold ourselves accountable for delivering safe care—whether that means improvements in our system or our communication or our training).
I know I am not the only one who feels overwhelmed. I am sure that the residents feel this too. They came to Telluride with an interest in patient safety and knowing that improvements need to be made. And now they have heard the stories of several patients and families affected by medical harm. They have met a group of patient safety experts for whom compromising patient safety and transparency is not an option. They have seen that the healthcare system is even further away from patient-centered care than they realized. But they also learned a bit about what it takes to deliver better healthcare: they learned about teamwork, negotiations, and listening to patients. And now it is their responsibility to do something within their departments to begin to make change.
My mother and I are spending the next few days in Colorado participating in the Telluride Patient Safety Roundtable & Summer Camp. This event brings together leaders in patient safety, medical residents, and a few family members of people who were victims of medical errors. It is a small group, about forty-some people. The purpose is to promote safety and disclosure in the healthcare system, with an emphasis on training the next generation of healthcare leaders.
I have three thoughts to share from yesterday.
MITSS has shared a video of Peg Metzger talking about her experience with harm caused by a medical procedure.
Peg had an out-patient endoscopy procedure that involves inserting an endoscope down her esophagus to examine her bile duct. Instead of going home that afternoon, she was admitted for observation and told that the procedure would be repeated in a few days. No one told her or her husband that her small intestine had been perforated, even though this information was in her medical record. And this began her very long ordeal.
Here are a few quotes I have selected that explain what she experienced and what she felt.
During all this time and all these admissions, no one has anything to say about what happened to me or why I am in this mess. I wait for my ERCP doctor to come back, but she never reappears. And this torments me. I never asked, “Why me?”, but I pondered, “Why does she get to go on with her life with utter disregard for mine?” And mostly, “Why should an adverse event feel like a hit-and-run accident?” She is treating me the way I would treat roadkill. Feel bad, but keep moving and what ever you do, don’t look back.
Mostly though, I believe that I need to be a model patient. A good patient, because my physical care depends on the hospital staff, and I need them to like me. I am truly and completely trapped.
It took 18 months until a surgery finally “put her back together again”
I am braver than I used to be, but I am also cynical. I’m cynical about authority and prestige, and I’m leery of healthcare, probably in ways that are a little bit unhealthy. I guess I’ve come to see the world as divided into two camps. One camp is full of people who accept responsibility for their actions, maybe even for some other people’s actions, and the other camp [is] full of people who don’t accept responsibility for anything.
Peg’a descriptions of how she was treated and how this made her feel really resonate with me. Her roadkill analogy is right on target—and I think it should be incorporated into communication training for medical professionals.
I hope that anyone who has spent some time reading this blog comes away with an understanding that medical errors can create very deep and painful scars not just for the patient, but also for family members of the patient. In the months after my father’s death I remember spending hours and hours searching the web for any sign that other family members of medical error victims had experienced what I was experiencing: disgust that the medical system would close its eyes to the unnecessary suffering of my father, a sickening sense of betrayal by those with power over patients’s lives, and a deep frustration that my experience and expectations were deemed meaningless each time my words bounced off the fortress guarding the medical system.
I couldn’t believe that other people in this situation would just shrug their shoulders, say “Whatever!”, and go back to their lives.