total shutdown mode and they would still pump on your chest if you hadn’t dated the paperwork properly. And resuscitation doesn’t even work that well in the vast majority of people.v
This is only one example, but it turns out to be an incredibly important example, of how far off-track American healthcare has gone. And I know. I’m part of it. I go to arrests all the time. Our emergency rooms and ICU’s are choked with elderly dying patients, often unaccompanied by relatives or paperwork, and nobody knows what to do so everything gets done until a day or two or three later when someone finally reaches a family member who says: Oh, Mom (or Dad or Auntie or Whomever) didn’t want to be resuscitated. We’d talked about it, we just never got around to filling out the paperwork. Please withdraw support! Resuscitation—by law—is a given; you must actively and with great difficulty opt out. In some states it’s nearly impossible. But more importantly, it is not one procedure, but a pathway. It is a pathway that starts simple but grows more complex, and that works well only in particular patients, costs money, often does harm, and—in the best circumstances, meaning in-hospital arrests with high quality CPR and ACLS (Advanced Cardiac Life Support)—results in thirty percent resuscitation. That sounds pretty good, but in fact only about five percent of survivors actually leave the hospital. And those tend to be the people you don’t expect to arrest; they usually have something treatable. Published statistics sound better than that, but I don’t believe them because I’ve seen how studies can skew results and it’s well documented that people don’t want to publish poor outcomes. Don’t even get me started on the research paid for by drug companies. There is high variability between studies; in other words, they aren’t reproducible. People arrest for a reason.
~
I stepped forward, placed an arm around the disheveled daughter’s shoulders and pulled her—not gently—back from her dad, his hospital bed, through the door, and into the hallway. The conductor had ceded control of his orchestra.
“I didn’t get your name.” I took Kleenex from a pocket and handed it to her. “Let’s go for a walk until the catheter’s in and your dad is feeling better.”
“Thank you, doctor. My name is Anita. Thank you so much for your help.”
~
A few days after breaking her arm, Mom left the hospital for the nursing home facility affiliated with and located next door to her retirement community. This nursing home had the same type of alarm system as there had been at the hospital, with the sensor pads on the bed and on the floor. Mom was at the nursing home for no more than a half hour before she fell out of bed and landed on the floor in an attempt to go to the bathroom alone. Because of her dementia, she did not remember to press the call button for assistance. And because of the type of nursing home that it was—average, no better or worse than most—no one would have come anyway.
I called Robert and asked if he had someone available who could care for her twenty-four hours a day. He said yes, and she could begin that evening. Bonnie and I packed Mom up and took her home. From then on, Mom accepted a caregiver without question. That’s when Vicki entered our lives. Vicki moved in, giving Bonnie and me a much-needed respite. Mom stopped fighting her battle for independence when Vicki arrived. She became docile. I breathed a sigh of relief at the same time my heart broke and I realized that the astrologer had been correct. The end was coming. Vicki took meticulous, loving care of Mom and Mom instantly adored Vicki. We were lucky that my father had planned ahead and saved enough for his and my mother’s old age so that we could afford to pay out of pocket for Vicki. We were lucky in an untold number of ways. It took me a long time to sort through them all.
Five
Errol Morris, writer and filmmaker, wrote a five-part series on the New York Times Opinionator blog in 2010 called “The Anosognosic’s Dilemma: Something’s Wrong but You’ll Never Know What It Is.” Morris had interviewed a Cornell professor of social psychology named David Dunning who described a cognitive bias known as the Dunning-Kruger effect. To put it bluntly, it states that the incompetent are too incompetent to know how incompetent they are.vi
While reading the “Offbeat News” section of the 1996 World Almanac, Dunning had found the story of McArthur Wheeler, a bank robber who brazenly walked into banks, held them up, and walked out. He wore no disguise; he simply smiled into the security cameras. As it turned out, McArthur Wheeler had sprayed himself with lemon juice, which he believed would render him invisible. He had previously verified the effectiveness of the lemon juice treatment; he’d taken a Polaroid photo of himself after testing the lemon spray and it failed to show an image. Believing he was, in fact, invisible due to lemon juice, this five foot six inch, two hundred seventy pound man proceeded to rob two banks and was immediately apprehended. Lemon juice had not made him invisible to the police. Inspired by the story, Dunning designed a study to show that incompetence prevents us from recognizing our incompetence. He named his theory the Dunning-Kruger effect.
I love this story, not because it deals with incompetence, but because it proves that people have the power to convince themselves of almost anything. While incompetence is tragic, it is no more tragic than ignorance or denial. Every day, people of all levels of intelligence behave in ways that are ruinous to their health and wellbeing, physically and emotionally. And it isn’t as if they don’t know better. They usually do. But when they look in the mirror, they are awed by the power of the lemon juice.
Later in the article, Dunning remarks on those amazing words uttered by Donald Rumsfeld: “There are known knowns. These are things we know that we know. There are known unknowns. That is to say, there are things that we know we don't know. But there are also unknown unknowns. There are things we don't know we don't know.” Dunning states, “That’s the smartest and most modest thing I’ve heard in a year.” Though Rumsfeld specifically referred to terrorism, he might just as easily have been talking about medical care, medical research, the business of healthcare, healthcare reform, behavioral economics, or any of the fields that abut caring for our sick and healthy and the massive economic machine that entails. It’s hard to search for unknown unknowns because it feels akin to an admission of incompetency or inadequacy; as a result, it becomes a problem for intelligent people in all fields and at all levels of experience. The capable are just as at risk as the incompetent; they assume that intelligence or ability in one field naturally extends to other areas as well. They don’t know what they don’t know.
I arrived in Cambridge, Massachusetts on Sunday, October 24th, 2010. Although the day was rainy, the colors of autumn would brighten in the week to come. A porter showed me to tiny quarters in the Executive Education housing building, which overlooked the Charles River. We had been divided into study groups prior to our arrival and assigned rooms accordingly. Each study group would occupy a section of housing organized around a central meeting room with a large table, a refrigerator stocked with water and soda, AV equipment, and many electrical outlets. Hallways extended in finger-like projections off the meeting rooms. My dorm room felt chilly and damp until I realized the heater had been disconnected. I removed the control panel and turned on the main switch to get some warmth going. Then I unpacked my clothes, hung everything up, and sat on the bed.
I thought of all the reading I had done to prepare for this course, the overwhelming evidence detailing the countless difficulties underlying an industry that represented seventeen percent of the United States’ gross domestic product. I thought of all the reading I had done prior to the course, in healthcare journals, in the business section of the daily paper, in articles about economics for the past two decades. Everyone seems to agree that we have troubles. But when that much money is involved, the way of thinking about problems and solutions gets constricted by the so-called politico-industrial complex. We know we want to fix the system but we don’t really want to change it all that much, especially not our part, not the part that makes us money. We’re all guilty. We want to tweak a monster just a smidge, put up
