Monday, December 20, 2010

THE CONFESSION OF AN UPTIGHT MAN: Why I refuse a medical procedure that could prolong my life

At age 64, I am, as I've said, in the vanguard of the Baby Boomer generation. This morning I did something that most Boomers—heck, most people of any age—will think is stupid and childish: I cancelled an elective colonoscopy I was scheduled to undergo next Monday.
      Last night, during several hours of productive sleeplessness (a Boomer specialty), I thought hard about whether to undergo the procedure, and by this morning I had decided not to. My reasons, I think, will resonate among the over-50 crowd, although even after I explain them, I suspect most will still think my decision foolish. That doesn’t matter to me. I’m comfortable with it.
      Most Baby Boomers know what a colonoscopy is. In case you don’t: It is a procedure whereby a flexible tube about 1/2 inch in diameter and up to six feet long is inserted into the patient’s rectum and funneled up into his or her large intestine (the colon). The tube contains fiberoptics which send pictures to a videoscreen, allowing a doctor to look for tumors and bumps, called “polyps,” which could be precancerous. If the polyps are discovered early enough, they can be removed and, theoretically, the cancer can be cut out or prevented. About 50,000 people die from colon or rectal cancer every year in the United States. Among cancers, only lung cancer kills more people.
      When he was president, Ronald Reagan had several colonoscopies, which did find polyps; in 1985 he had two feet of his colon removed because cancer was found. Former President George W. Bush had the procedure at least three times (in 1998, 1999 and 2002) and twice had polyps removed. TV personality Katie Couric lost her husband, Jay Monahan, to colon cancer when he was just 42; since then, she has been the most high-profile public advocate for colonoscopies. The American College of Gastroenterology says that colonoscopies are quick, safe, and painless. According to the American Cancer Society, early detection by colonoscopy is the best way to prevent colorectal cancer death, and everyone–male and female–over the age of 50 should have a colonoscopy every five to ten years.
       I was scheduled to undergo my first colonoscopy next Monday. Given all the facts above, why on earth did I cancel it? The reasons reach deep into my character and into my feelings about contemporary medicine. They also reflect my beliefs about life and death.
       My first reason for canceling my colonoscopy is the obvious one: I find it to be an ugly, intrusive, embarrassing procedure that violates everything I value about myself. I’m the kind of person who doesn’t have a lot of dignity to spare, so I’m loath to give up even a smidgeon of what little I have. My primary motive in life is to avoid embarrassment. (It’s the reason I won’t dance in public or sing karaoke or get drunk.) Avoiding embarrassment is not a particularly admirable motivation, but I’ve learned to accept it. I’m also the kind of person who doesn’t like someone else to mess with his body–I’ve never liked the playful jab or the tickle or the unprovoked hug. I am, to be honest, just a little uptight. In fact, the term “tightass” would not be inappropriate for me. Now take that term and weigh it against the description of a colonoscopy in the third paragraph, above. There is not, so to speak, a good fit here.
       My second reason for canceling my colonoscopy has to do with how it came to be scheduled in the first place. I have no symptoms that suggest colon cancer or any other intestinal disease. I have no family history of colorectal cancer. Yet at my most recent physical, last month, my new family physician told me I needed a colonoscopy. Why? Simply because I was over 50. Sheeplike, I agreed to undergo the procedure, purely electively. After all, this was a doctor speaking.
       My family doctor’s office then made arrangements with a gastroenterologist (GE) to perform the colonoscopy this month. I had never met the GE. I was told to go to his office a week before the procedure to pick up a “prep kit” telling me how to get ready for it. When I went to the GE’s office a couple of days ago, a nurse or an assistant–I never found out which–handed me 1) a prescription for a superlaxative and 2) a sheet telling me what not to eat in the week before the colonoscopy: no aspirin, nothing fried, nothing red, nothing with seeds, no apples, no oranges, no nuts, no raisins, no olives, no pepper, no popcorn, no pickles, and so on. The day before the procedure, the sheet said, I was to eat nothing at all except transparent stuff like (not red) Jell-0 and to drink only clear liquids. The evening before, I was to take the superlaxative. On Monday, the day of the procedure, I was not to eat or drink anything at all, although I wasn’t told exactly when on Monday I needed to be at the hospital. I was told that to find out when the procedure was to be done, I had to call the hospital on the Friday before.
       The nurse (assistant?) sent me home with all this information. I never spoke with the gastroenterologist who was going to do the procedure. He didn’t even know what I looked like, much less anything about my personality or my family history or my general health. I didn’t know what he looked like, whether he seemed bright or dim, whether his hands shook or not. No one said anything about, or handed me any information about, the discomfort and risks involved in a colonoscopy. No one told me that the superlaxative would give me fairly violent diarrhea. No one said there was about a 1% chance that I would be allergic to the anesthesia (no one even told me what level of anesthesia would be required—local? general?). No one informed me that I could develop problems at the site the anesthetic was administered or that during the procedure the colonoscope could perforate the wall of my colon, requiring real surgery, or that I might start hemmorhaging. No one told me that air would be pumped into my colon to help the procedure or that the resultant “bloating” could cause “discomfort” or that I might experience some other kinds of  “discomfort” for days after. 
     Looking back, I realize that no one–not my own doctor, not the gastroenterologist’s assistant, and certainly not the invisible GE himself–ever even told me what exactly a colonoscopy was designed to look for, what colorectal cancer was, or how serious a problem it could be. No, all that information I had to seek out for myself. Nearly everything you’ve read about colonoscopy and colorectal cancer in this article I found on the Internet. I’m sure when I arrived at the hospital on Monday, I would have been given a sheet to read telling me some of this. I know I would have been given a disclaimer to sign.
      This is the nature of modern medicine, and it says much about the relationship between doctor and patient in the 21st Century: If a doctor tells you to do something, you are expected to do it, no questions asked. Well, I have some questions, a lot of questions. For example:

  • On average, how much longer does a person who has a colonoscopy live than one who doesn’t?
  • What percentage of people with no symptoms and with no family history of colorectal problems are discovered by colonoscopy to have colon cancer?
  • What large, longterm studies suggest that colonoscopies are actually effective in prolonging life?
  • If I have the colonoscopy and they discover cancer or precancerous polyps, what will my quality of life be after they cut them—and some of my healthy insides—out?

       The nurse in the gastroenterologist’s office told me I could call if I had any questions, but I didn’t call. I’m pretty sure she couldn’t have answered any of these questions, and I didn’t want to embarrass her. I couldn’t even find the answers to these questions on the Internet. My second reason for canceling my colonoscopy, then, was that I resented the way I was led to it by the medical establishment–in darkness and ignorance and under a fog of condescension–and I had been given no compelling reason to submit to such an invasive, uncomfortable and potentially dangerous procedure.
       Finally, there is the matter of life and death, and the few choices one gets to make in such matters. To explain my feelings about that, let me tell about two friends:
       My friend Lee was a tennis teaching pro who worked out regularly. He had a family history of cancer, so he took special care to be on the lookout for cancer signs, and he smeared himself liberally with sunblock to prevent skin cancer. He died of a massive heart attack at age 53.
       A few years later, my friend Tom, another tennis player (and the father of the famous tennis player James Blake), also died. He had a family history of heart disease, so he kept himself in wonderful aerobic condition and ate a vegetarian diet. His cholesterol was well in the safety zone. He died of stomach cancer at age 57.
       As valuable as organizations like the American Heart Association and the American Cancer Society are, they have a rather narrow view of the world. The American Heart Association would consider Tom a success story: he didn’t die of a heart attack. The American Cancer Society would consider Lee a success story: he didn’t die of cancer.
       But both Lee and Tom are dead, and I miss them. They did what they were supposed to do (for all I know, they even had colonoscopies), and they’re still dead.
       When I tell people I canceled my colonoscopy, I know what they will say—because it is what Katie Couric says and what the American Cancer Society says. They will say, “But it could save your life!” Well, they’re wrong. It couldn’t save my life. In the end, my life is not savable, because I’m human, and someday I’m going to die–of something. If it’s not cancer, it will be a heart attack. If it’s not a heart attack, it will be a stroke. If it’s not a stroke, it will be a drunk driver. I remember reading a few years back that if you spend the rest of your life eating all the right foods to keep your cholesterol down, you will definitely lower your risk of a heart attack–but you will add only three months to your life span. Because you’ll still die. Of something.
      Thank you, I’ll have the steak.
      Consider Ronald Reagan. In 1985, he had a colonoscopy that found precancerous polyps. The consequent surgery added perhaps 10 years to his life. Now look at the last ten years of Ronald Reagan’s life, during which he plummeted into the bleak chaos of Alzheimer’s disease. If it had been me, I would have taken my chances with colon cancer. Likewise, if it comes to a choice  between colon cancer and a stroke that knocks out my speaking ability, for example, I’ll choose the cancer. And if the cancer is awful enough . . . well, I have no philosophical objection to suicide.
       The fact is, of course, that we can’t choose our diseases. I may get colon cancer. If I do, I’m sure that I will for a time beat myself up for not having had the colonoscopy (after laughing at the irony of it all). But I’ll also recall Tom and Lee and President Reagan. They did what the American Heart Association said, and what the American Cancer Society said, and what the American College of Gastroenterology said. And still they died.
       No, we can’t choose our diseases–but we can choose our cures. Short of suicide, we can’t choose how we’ll die–but we must choose how we’ll live. And as in any choice, the decision about how we care for ourselves should reflect who we are and what we believe. Next Monday, then, I will choose to play tennis.

(An earlier version of this article originally appeared in the online version of The Memphis Flyer in 2008.)

1 comment:

  1. Ed,

    I just found this post. I totally support you and your decision.

    Unfortunately, medicine does NOT value a person's dignity, Patients are ridicules, coerced, and accused of being mentally ill for reasons of dignity.

    It is the system that is mentally ill.

    As Gandhi said: I was at one time a great lover of the medical profession... I no longer hold that opinion... We become doctors to obtain honours and riches. ...there is no real service of humanity in the profession, and that it is injurious to mankind.