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Dealing with ALS and some very hard choices

March 10th, 2014 9:17 am by Kenneth D. Gough

Dealing with ALS and some very hard choices

A terrible disease recently struck close to home. A neighbor, the 30-something nephew of one of my wife’s best friends, was diagnosed with amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig’s disease. Another friend and neighbor, a doctor, recognized the symptoms that led to the diagnosis.
There has been an outpouring of sympathy and support for this fine young man that does credit to the people of Elizabethton.
You may have seen the yard signs: Faith > Fear. Faith is greater than fear. Indeed.
Then, recently on public radio, I heard a report that surprised me. I knew that ALS is rare, but not how rare; there are only 1 or 2 cases for every 100,000 people. In the entire United States’ population of around 313 million, there are only 4,500-6,000 cases at any time. All of a good-sized town’s doctors could go an entire career and never see it.
The disease is a mystery. Very slowly, the nerves controlling the body’s muscles shut down. Eventually the body is totally paralyzed. Then the diaphragm muscles that power the lungs slowly quit working. It becomes hard to breathe, then crushingly difficult, then impossible. Respiratory failure is usually the cause of death.
There is no cure. Most victims are dead in 2-5 years, but, inexplicably, about 10 percent live for 10 years or more.
Unlike Alzheimer’s disease, in which the victim’s awareness slowly fades away (a blessing to the victim if not to his loved ones and caretakers), ALS patients know what’s happening almost to the end. This makes ALS terrifying. One is slowly paralyzed over the course of months and years; the mind and soul are trapped inside a wasting body with no hope of recovery, or even of a quick death.
Even for the person with an iron will and infinite faith, it’s a hard way to die.
To the patient, and to his loved ones, it’s simple — they want everything done that can be done, and money is no object. No one with half a heart or the faintest hint of a conscience would have it any other way. But that runs into a simple, terrible fact: neither money nor time is infinite.
Does it make more sense for government to fund the studies that might lead to a cure for lung cancer, which kills around 160,000 people a year in the U.S.; or breast cancer, which accounts for 40,000; or ALS, which kills perhaps 1,000-1,500? And if you were a young research scientist, on which would it make the most sense to spend your career?
Then there is the cost of care. A patient may linger through years of total paralysis requiring intensive round-the-clock skilled nursing. The bill can, and often does, run into the millions.
We are confronted with a terrible moral dilemma: Are the lives of relatively few worth so much, particularly in light of the terrible course of the disease and the all-but-inevitable conclusion?
This, to me, is one of the most powerful arguments against socialized medicine. In a socialized system, a bureaucrat is empowered and required to answer this unanswerable question. No matter how decent a human being he is, no matter how sympathetic to the plight of the victims, he has a fiduciary duty to spend the public’s money as well and wisely as he can, to be fiscally responsible, to do the greatest good for the greatest number.
And that ultimately argues for allowing the ALS patients to die as quickly as conscience will tolerate; comfortably, of course, but with no attempt to sustain or prolong life. The cost simply isn’t worth it, not given the other more-urgent demands on the public purse.
The inhumanity of that approach — the reduction of life to nothing more than a financial calculation on an actuary’s spreadsheet — is morally reprehensible and unacceptable. It rubs up against the definition of murder — the deliberate or irresponsible taking of a life. And it is inescapable in a socialized system.
But if the decision is left strictly to the victim and his loved ones, is it any less terrible? No, of course not. But it is morally preferable that the choice belong to the individual, because only he can know what is best for him: To fight to the last breath, or gracefully surrender to the inevitable and hasten the end, or something in between. That is something that no government functionary, no matter how knowledgeable or wise or decent, can possibly know.
And, to paraphrase the great and good professor of moral philosophy Adam Smith, any man who thought himself capable of carrying out such a weighty duty would be the last person on earth to whom it should be entrusted.

Kenneth D. Gough of Elizabethton
is president and general
manager of Accurate Machine Products Corp. in Johnson City.

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