Monday, August 18, 2008

Talking About The Unspeakable

I belong to some e-mail lists and on-line discussion groups for cancer patients, and yesterday they were ablaze with links to a blog post made by Alan Sullivan, a terminal leukemia patient. Alan said some things a terminal cancer patient isn't supposed to say, or even think. Go read his comments before reading this post any further.

First off, I don't think Alan is serious about committing suicide before he gets any worse. I feel that way because he discusses using a drug overdose to end his life, and I have a pet theory that people who are genuinely serious about ending their lives do not use pills------there is always the possibility, and in many cases I think it is a hope or even expectation, of being found and revived before death occurs. No, people who are serious about killing themselves use a gun. If Alan is really looking for a swift, painless, and certain death, then he needs to buy a Smith & Wesson Model 19 .357 magnum revolver (with four or six inch barrel), load it with 158 grain hollow-point rounds, insert the barrel in his mouth, pull the trigger, and. . . . . . . C'est tout pour maintenant; au revoir, le monde! Seriously, his life would be over in a nanosecond, and he would need no one to "assist" (that is, share responsibility for what happened) in his demise.

But Alan raises a very crucial issue: we have developed the ability to sustain life well past the point where the human body was designed to die, and often such sustained "life" means prolonging someone in a vegetative state or in great pain. At what point do we------as a society, as individuals------say "enough!" and admit that further efforts would be a waste of everyone's time, energy, and emotion?

I had to answer a form of that question upon getting the news last year that my situation was irreversible. I was offered the options of "doubling down" on my treatments-----more chemo! more radiation! too bad we can't remove more of your liver!------or going to palliative treatment of my symptoms as they arose. I opted for the latter, and my first oncologist's strident opposition to my choice is why I switched to a new oncologist. Since making that decision to end those grueling chemotherapy treatments I was getting every two weeks. . . . . . . . well, I've actually had a pretty good year, all things considered. I have felt much better than I did toward the end of the chemo regime, and don't miss the side effects like extremely low white blood cell counts, sudden nosebleeds, etc. In my case, "doing less" has made my life much better. But there are those in the medical community-----like my first oncologist-----who pressure patients (and their families) to undergo any and all treatments, no matter how unlikely they are to help. For doctors like that, keeping patients alive as long as possible mutates into a variation of Evel Knievel jumping 40 buses with his motorcycle; yes, it's an impressive stunt, but what is the practical value of it? Does professional ego and pride------"look how long I kept that patient alive!"-----sometimes take precedence over what is in the best interests of the patients? I genuinely believe that was the case with my first oncologist; I strongly felt he took my decision not to continue with the aggressive course of therapy he was advocating as a personal rebuke or insult.

I've had healthy people tell me that, if they ever develop cancer or any other life-threatening condition, they will have their doctors do everything and anything to keep them alive as long as possible. I used to feel that way too, but I discovered your perspective changes radically once you experience what it's like to be really, really sick. You understand there is a huge difference between "living" and "existing." The former is worth it; the latter isn't. If you have ever awakened in the ICU of a hospital, and tried to speak but couldn't because there was a breathing tube down your throat-----and I've had that experience------then you probably wouldn't want to spend your last days "existing."

Alan also raises another sensitive issue in care of the critically ill, and that's pain management. This is an area where our perpetually screwed-up "war on drugs" rears its head; the Drug Enforcement Administration (DEA) has as much to say about how pain in terminal cancer patients is treated as do the patients' oncologists. For example, heroin is used in most of the rest of the world (such as Europe) to treat pain in cancer patients but medical use of heroin is prohibited in the United States. The "logic" behind that decision is something that only Congress could come up with: yeah, we know you're gonna be dead in three months, but we don't want you to get addicted to heroin, so instead you get to live in agony during those three months. Prescribed levels of various painkillers are monitored by the DEA, and a doctor or medical facility that is too "generous" in dosage levels for opiate-based painkillers will soon find itself under scrutiny by the DEA. To avoid such complications, doctors and facilities tend to prescribe lower levels of pain medications than many patients need. And that's because numerous politicians, in an effort to score cheap political points by showing how "tough" they are on drugs, restrict the availability of certain drugs to terminally ill patients.

When people like Alan Sullivan write about the "right to die," I get the feeling they are really writing about the right to live without excruciating pain. They want to be able to get as much as they need of any available pain relief medication. "Prolonging life" often really means "prolonging a painful life," and in many ways is not that much different from medieval tortures-----you're kept alive, but only to experience suffering. And that brings me right back to my previous point: there is a big difference between "living" and "existing."

Those of us fortunate enough to live near the border with Mexico have the option of seeking treatment in Mexican cancer clinics. These are widely ridiculed by the American medical community, and often with good reason------you really can't cure cancer with megadoses of vitamins, for example. But the reason why many Americans with terminal cancer visit such clinics has nothing to do with cures. Instead, it is because such clinics will give you as much pain medication as you need, as often as you need it, to be comfortable in your final days. And, in that respect at least, the Mexican medical community is far ahead of the American medical community and its "suffering is good for you" idiocy.

I pass no judgment on Alan Sullivan's remarks, other than to express thanks for him writing what I frankly didn't have the courage to write and for asking some unpleasant questions that needed to be raised. I think we are going to see a big growth in the number of patients with chronic long term illnesses in the years ahead-----people living in pain, and requiring daily care------and the questions about what we should do, or realistically can do, for such people will only grow. And you might find yourself having to go through some of the same thought processes I have had to go through in trying to figure out where to draw the line separating "living" from "existing." I have no idea if I've made the proper delineation between those two, and I wouldn't impose my choices on anyone else. But I've tried my best to reach an answer, and I feel comfortable with my decision.

Geez, what a heavy topic for a post! Maybe next time I should blog about selecting the proper tequila to fully enjoy the upcoming season of professional football from the Dallas Cowboys.