This Little Life of Mine

The world has been mesmerized and horrified at the events surrounding the life of an infant in Great Britain. Little Charlie Gard was hovering on the brink of death for several months while his parents conducted a legal battle to engage new doctors and an experimental process in an effort to slow or even counter the effects of his condition. We will consider the social and legal ramifications of that in "Of Cows and Kids."

The fundamental issue in the dispute was the fact that in Great Britain, parents do not have what we call a "power of attorney for health care." (Incidentally, if you do not have one in place for yourself and for other members of your family, you should execute one as rapidly as possible. Legally, in the USA, parents can direct medical care for minor children and spouses can do so for each other. All other relationships require a POAHC. It will save a ton of trouble, especially for elderly parents.)

In Great Britain, regardless of the agency of enforcement, health care delivery or denial is out of the parents' control. News outlets have identified "the hospital" as being the entity denying the treatment to Charlie. But legal appeals to both English and European courts were denied on the basis that the hospital was within its rights to deny coverage. So other entities, including legal statutes and authorities, were at least acquiescent to this travesty.

The question before us is what possible motivation would a health care entity use to deny coverage? Was it pride, at the thought of an "outsider" saving a baby that they had deemed irreversibly injured? How infantile and idiotic. There is probably a deeper driving force. Perhaps it was an economic consideration of the continuing drain on limited funds and other resources. Continuing to treat Baby Charlie might divert needed funds from other infirm children. But the family had raised sufficient funds to finance the treatment, and this disregards the offers of free treatment.

The final one might be germane. The continued treatment of Charlie might constitute a torturous and painful end to his life. No one really knows as he was unable to communicate. If the object was to prevent a protracted suffering, and ultimately futile extension, then compassion would dictate that the treatment be terminated. And here, we approach the core of anyone's motives. If it is indeed hopeless, then the compassionate and humane course might be to allow a peaceful transition.

This scenario, however, does seem to pose a specific and dangerous conundrum. Compassion can be conflated with convenience with very little effort. Many abortions are putatively performed to prevent a poor quality of life for the possibly deformed fetus. This is extensively applied to Down's Syndrome children, despite the testimony of multitudes of parents and families who aver that the "handicap" was actually a blessing for the entire family.

The progression (I hesitate to use the trite, "slippery slope euphemism) progression from compassion for the afflicted victim to convenience of his or her care givers is easy to trace.

We can identify and characterize the root problem as a failure to follow the advice of "Err on the side of life." If we are to make a mistake, we should actively attempt to emphasize the possibility of life and survival, rather than assuming death and defeat.

Our English teacher at good old SHS would tease students who tried to "explain" an incorrect answer as not really being what they meant. They meant the right answer, but just mis-stated it. "Oh, so you want to shoot to, ‘hit-if-it's-a deer-miss-if-it's-a-man." We all quickly recognized the concept and shuddered as we pictured ourselves as the "man." Too close for comfort.

Apologists for "the hospital" are trying to be compassionate, yet assuming a negative outcome and all of its consequences. If nothing else, Baby Charlie exposed a culture of expecting the worst, rather than exerting all due effort for a possible positive outcome. "All due effort." of course, is extremely subjective. That is why the margin of error should be weighted toward the life side.

And let's expose one other interlocking consideration of the explanation. "The hospital" opposed the treatment. May I be blunt? That is what is known in Greek as, "bull hockey." The hospital is a collection of buildings where health care is dispensed. A more correct designation would be the hospital staff, and more likely, the administration. And all of that ultimately comes down to one person. (See of Cows and Kids.)

The attitude of the "hospital" both staff and administration has allowed the "death" weight to predominate in their value system and decision making. Charlie has contributed at least two things to our thinking and attitudes. First, every life is valuable, even this helpless, probably hopeless little spark of being. If the awareness of life's value and the willingness of able advocates to fight for it in very difficult and trying circumstances is exposed to other potential "Charlies" and their parents, we might count this as worthwhile. Someone who potentially is prone to "give up" may be encouraged to fight on, and survive. This can apply to any point on the continuum of life. End of life issues are suffused with this same language and consideration.

Our second lesson from Charlie is that it is always worth the effort to preserve life. If nothing else, more people are aware of some possible treatments for "hopeless" maladies. Some researcher, on the brink of success, may be emboldened to push for just one more test or option.

When asked if failing to produce a working light bulb in about 10,000 failed attempts had discouraged him, Thomas Edison replied, "No, I now know 10,000 things that will not work." The list of possible solutions was shrinking, and he eventually prevailed. Another encouraging summary was, "Many of life's failures are people who did not realize how close they were to success when they gave up."

Thank you, Charlie, for bringing us the realization that life is not hopeless, even when it seems  hopeless. Another quotation from Edison fits here: "When you have exhausted all possibilities, remember this - you haven't."

World problems force a negative approach into our consciousness. At times it might seem like it is hopeless. Why try to go on? Just give up. What difference can I make? Little Charlie encourages all of us to resist and not capitulate in difficult times with this imputed mantra:
"This little life of mine, I'm gonna let it shine."