“Doctors love to patronize and dominate. Their arrogance and indifference to the philosophy of informed consent is widely known. Surprisingly, most residents and doctors in teaching public hospitals tacitly endorse such reservations against information sharing. To most of them getting informed consent is a needless nuisance, to be delegated to a raw resident whose sole responsibility is to get the patient’s signature on the dotted line.”
Issues in Medical Ethics Volume 8, Number 4, October-December 2000…and Chapter One, Page 1 of Dan Walter’s book titled Collateral Damage
It has only been a few weeks since reading Dan’s book – yet I felt compelled to go back this weekend and read sections of it again. Since medical school, I rarely read something–even the Sunday paper–without a yellow highlighter in my hand, a side effect of the competitive paranoia instilled in me during medical school. I went back this weekend to the sections I had highlighted in Dan’s book, and found the quote above, right up front – Chapter One, Page One. I understand and appreciate why Dan purposely chose that quote to open his book. I also knew why I had highlighted it a few weeks ago…long before I had finished reading Pam’s story and all the research Dan so eloquently presents on the “cardiac ablation business”.
I had highlighted this section because that opening paragraph took me back to last summer, and our Telluride Patient Safety Roundtable and Resident Physician Summer Camp. Resident physician leaders from across the country spend one week immersed in patient safety with a major focus on open and honest communication. Over a three-week period during the summer, almost 100 residents and health science students join us in Telluride, CO to learn about important concepts related to patient safety and transparency. Here is a short video clip about the student summer camp, which has organically grown from a roundtable discussion of patient safety diehards and patient advocates over the last nine years into what is now an Educate the Young patient safety summer school. Patients help teach all sessions at the summer camp.
A three-hour session on informed consent/shared decision-making is part of the week-long curriculum in Telluride. At the end of this session last year, Paul Levy (@PaulFLevy, Not Running a Hospital) asked the residents how much informed consent training they had received during medical school and residency. With a show of hands, every resident acknowledged the three-hour session on informed consent/shared decision-making at the Telluride Summer Camp was more training than they received during their entire medical school and residency combined. We all agreed this was a sad commentary on the current state of medical education as it relates to patient centered care. One of our Telluride residents went even further when he posted this reflection on the day’s educational session:
I don’t think that I’ve ever thought so much about informed consent as I did today. A discussion about informed consent to the level of detail that we had today needs to be part of all residency training in the first days of orientation and as refresher training later on in training. All physicians can, and should, do much better in providing informed consent.
Over the years, I have come to know many patients and families who have been harmed from care. It seems almost every story that was shared had a serious breakdown in informed consent, or more appropriately, shared decision-making. The families of Lewis Blackman and Michael Skolnik, and many others, might have chosen much different treatment courses if all the risks and procedural outcomes were shared with them.
We need to get this right. It is fundamental to ever achieving high quality, safe care. If we don’t, we will continue to see unnecessary harm, more books like Collateral Damage and more films like The Faces of Medical Error…From Tears to Transparency. As Pogo says “We have met the Enemy…and he is us.”
I once heard Don Berwick say, shortly after taking over as Director for CMS, that he originally thought quality and safety where the biggest challenges facing healthcare today. But after spending time in the district, he quickly came to realize he was wrong. It was fraud that was the biggest challenge.
His message came to mind after recently reading a book given to me by Rosemary Gibson, entitled “Collateral Damage”, written by Dan Walter. I can honestly say that after reading the book, I felt embarrassed to be working in healthcare.
In the book, Mr. Walter shares the story of his wife, Pam, who underwent a cardiac catheter ablation procedure for an abnormal heart rhythm known as atrial fibrillation. He describes what went wrong during Pam’s procedure, and then details the pain, suffering, lack of transparency and denial of accountability that followed for both he and his wife. The procedure was performed at what is considered to be one of the best hospitals in the country, which makes the reader wonder what is going on at the “not so great” hospitals across the country, as well as who is defining what makes a hospital “great”. His aim in writing the book was to, “accurately portray what happened to my wife…without detracting from the skill, kindness and compassion of the majority of the people who work there…and to prove to Pam that she does matter, and to tell her that despite what the leadership of that hospital says, her life is important – and her story is important – and it deserves to be honestly told”.
The book is Mr. Walter’s account of the facts related to his wife’s care, so it is only his side of the story. However, it is remarkably well written, and gives a deeply researched account of the cardiac catheter ablation “business”. He includes information:
- Taken from numerous publicly available FDA transcripts and testimonies on how unsafe these catheters were thought to be.
- Promotional materials from companies making these catheters who were trying to get them through the FDA approval process hyping the wonderful results being seen in patients who were the first to be “experimented” on.
- Transcripts from advisory panels and cardiology meetings where leading experts acknowledged the lack of evidence that these catheters even worked.
- Conclusions from peer-reviewed journals showing complication rates much higher than what was being shared with patients.
- Medical records highlighting a lack of real informed consent related to the risks and benefits of these procedures.
Mr. Walter also shares numerous other patient stories and holds nothing back. Not only does he name names, but he includes pictures of physicians and others who he and Pam encountered along their journey.
In one section of the book, the author shares thoughts on the difference between a “witness” and an “accomplice”, a witness being one who sees wrong and reports it. He raises the question that if we as caregivers witness something wrong and don’t report it, aren’t we really accomplices to the wrong when we turn our back and walk away? His statement caused me to reflect back on my career. As an anesthesiologist, I remember days when I was assigned to provide anesthesia for a catheter ablation case. Although I spoke with the patient about anesthesia related risks and benefits – I never thought of questioning the merits of the procedure I was to be a witness to. It was challenging enough keeping up with all the new findings in my specialty let alone comprehend everything being published in the numerous specialties anesthesiologists support. But after reading Pam’s story, I felt that I too may have been an “accomplice” to possible wrong doing.
I applaud Mr. Walter for sharing Pam’s story. I also struggle to understand why this book has not received similar attention, or the same hype experienced by authors of recent books published on medical error. Collateral Damage goes much deeper in highlighting problems facing healthcare today…a reason why I believe this book should be required reading for all resident physicians and health science students entering the field.
As quality and safety leaders and educators, our daily efforts are built around things like standard work processes, shared best practices, care bundles, checklists and universal protocols–“things” we do in the best interest of our patients. The bigger picture, as Don Berwick alluded to, requires that we overcome the personal, political, legal and financial agendas inherent within many high-level stakeholders. Otherwise, I sometimes feel we are just moving chairs around the deck of the Titanic.
For those interested, Dan’s book is available free on Amazon Kindle as of June 12th http://amzn.to/15TQmkU