By David Matz
In my self-image I seek to control my life as much as my limits and luck will allow, and perhaps a bit beyond. This blog (lifted from a longer essay) is about how that self-image fared when it engaged with two hospitals, and how those hospitals responded. I will describe a couple of the many decisions I made which left me uneasy. I finish with some thoughts about how the hospitals and I might do these things differently.
Routine colonoscopy failed to remove one particularly stubborn polyp. My gastroenterologist referred me to a colleague down the hall who used a different procedure. I was troubled. Why did I need two colonoscopies? How come the first doctor didn’t know the procedure used by the second doctor? Why didn’t my PCP send me to the second doctor in the first place? I had doubts, said nothing, and made the appointment for a second colonoscopy in June.
The second procedure couldn’t get the polyp out either; I needed surgery. This time my questions about alternate approaches were met with hesitancy and apparent reluctance.
I met with a colorectal surgeon at Hospital A who described the surgery as straightforward. “Take about an inch on each side of the polyp.” The surgeon answered all my questions, though she, and the staff supporting her, were clearly in a hurry.
I sought a second surgical opinion at Hospital B. This took a month to set up. The second surgeon said the same thing as the first except that he wanted to take out another polyp that was “nearby.” (Better to get it now rather than wait for the next colonoscopy.) This surgeon had a very engaging manner: humorous, open, patient, even chatty. No rushing. I decided to go with him even though he didn’t have an opening for five weeks.
The hospital sent me a thick folder of forms, and a brochure selling the service, book, and DVD of a woman who was not identified as part of the hospital, though the brochure had the hospital’s logo on it. The DVD and book were on sale in the hospital gift shop.
I had read a number of articles that described the pressure on doctors and other hospital staff to increase the number of patients, procedures, tests, and meds. I have seen doctors running down the hall to their next patient. I have seen billboards and websites zealously selling hospital services. Competition among hospitals is common knowledge.
Four days before the scheduled surgery I visited Hospital B for a preparatory session. The surgeon explained that in order to take out the second polyp he would have to take out about 30% of the colon. I was taken aback hearing about this for the first time. ” He reassured me of the wisdom of his approach: More of the cancer-prone polyps tend to grow on the left side, so taking it out will cut down on the number of polyps in your future “And, the re-connection if I do a left colectomy is more reliable.” In the next ten minutes he mentioned the “reconnect reliability” of his preferred approach three times. I asked if all surgeons at his level of experience would do the surgery this way. He said yes. Although I knew of at least one surgeon at Hospital A who had told me that she would take out only 4” inches, I reluctantly decided to go forward with the affable surgeon sitting in front of me.
The surgery took place in September of 2015. In recovery the surgeon explained that all had gone very well, though the offending polyp turned out to be somewhat further to the right than expected. (Puzzling: the colonoscopy had marked the polyp with dye, and I assumed it would have measured exactly where in my large intestine it sat.) So, instead of doing a left colectomy, he did a right colectomy. Again, I now have 30% less colon than before, though a different 30%. And that other polyp which he had identified initially as the reason to do a more expansive surgery is still in there.
In my various hospital visits more than one doctor was moved to say: ‘I have already explained to you that….”
My body recovered very well from the surgery.
Six weeks after the surgery, while teaching class, I had a violent stomach attack. This was later identified as a blocked small intestine caused by adhesions. I was in big trouble. At Hospital B they performed surgery at midnight. They took out the strangled part of my small intestine and another chunk of my colon, and fitted me with a colostomy bag.
I was told that the colostomy was temporary. Once some healing had gone on in my gut, I could have a third surgery to remove it and be restored back to normal functioning.
I should also mention something that did not happen. In the course of getting my “consent” signature, the doctor in surgery #1 (and the surgeon in #3) were very explicit about three risks: bleeding, infection, and the re-attachment of my innards coming loose. No one mentioned adhesions. According to several websites, I learned later, these occur 93% of the time.
The first colonoscopy led to the second, which led to the first surgery, which required the second that led to the third. Not a bad business plan. Not one doctor along that way suggested that I had a choice.
Why did I make decisions as I did? When my second gastroenterologist mentioned surgery, I tried to push open the door a crack. I asked about other options, and although he acknowledged a Chinese alternative, I didn’t pursue it. I didn’t ask to meet the Chinese guest surgeon, or who in the department invited that guest. I didn’t ask if there was data about the success of the work of the guest. Why? In retrospect I am embarrassed to admit that it was the certainty of the gastroenterologist and his dismissive manner about the Chinese alternative. I felt rude and presumptuous going beyond his judgment. Nothing in my self-image nor in my sense of a patient’s role in health care is consistent with that attitude. But it felt simpler and smoother to go with the voice of authority.
I had a second opportunity to make a choice: I could have challenged the proposed surgery as too wide. I already had the opinion of another reputable surgeon who said she would do it more narrowly. Whether by his intent or just his effect, I felt that refusing Hospital B surgeon’s recommendation to go with the much larger surgery would be costly. I felt the pressure of being told of the full scale of the surgery so late in the decision-making process (four days before scheduled surgery). If I canceled the scheduled appointment, what could I do to make my decision a better one? I now had two views about the right way to do this surgery. What could I do with that? It had taken two months to get this all set up. Under that polyp might be cancer looking for a way into the rest of me. Should I tell the surgeon who in four days was going to put a knife in my belly that he was wrong, that another reputable surgeon disagreed with him? (A doctor-friend had advised me: “Not smart to piss off your surgeon.”) Should I halt the process and seek another opinion, or go back to that first surgeon? Again, the easiest path was to go with the surgeon sitting amiably in front of me.
Since the third surgery friends have sent me some web-based research suggesting that a number of the decisions made by the doctors were professionally responsible. And I have also done some reading that describes the factors that work against a doctor making medical decisions that are in the best interest of the patient. Here is an incomplete list, unrelated to doctor personality or integrity, of the pressures weighing on doctor decision-making.
- The social-psychological errors of decision-making to which we are all prone.
- The financial incentives, individual and institutional, built into (buried in) the medical decision-making process.
- The pressures of pharmaceutical and other product-purveying companies.
- The time pressures imposed on doctors by money and bureaucracy.
- The training (and self selection) of doctors that emphasizes the power of expertise to fix what is broken.
- Liking individual patients too much; liking them not enough.
- The psychological impact of scientific/medical uncertainty.
- The hovering threat of malpractice litigation.
- The need to train young surgeons in a system in which vast experience is the best assurance of outcome success.
- The value of doing it exactly as one’s mentor does it, and the impact of that on openness to new data and new ways of seeing the problem.
- The introverted nature of all professions.
A first reaction to this list might be, My God, how do they ever get anything right? But of course they often do. Many others have observed that most doctors work very hard on behalf of individual patients, and many patients come through the system well-repaired. Nonetheless, a system with so many incentives to make mistakes needs serious attention, and many people are at work providing that attention. And I am on the edge of becoming one of them. Here are some of the questions I am considering.
- Is it possible to design a role for someone who could help a patient find the relevant medical research before decisions are made? Someone who can help investigate if there are choices about next steps.
- What research is there about the value of second opinions and how to manage them?
- Shared Decision Making is a not much used process in which patients are given medical background on the medical decision they face, and then discuss the choices with their doctor. Is there research to do that can enhance the use of this tool?
I have two goals: to increase patient confidence that the medical decisions made are in the best interest of the patient, and to learn if better informed patient involvement will produce medical decisions that are better medically.