By Mary O’Brien, M.D.
Do you know what “Mitochondrial Deficiency Syndrome” is? Most people don’t. Unfortunately, that doesn’t stop them from weighing in on the case of little Charlie Gard. Charlie is an 11-month old baby with a rare and devastating genetic disorder that precludes normal functioning of mitochondria. Mitochondria are intracellular organelles that generate ATP (adenosine triphosphate). In essence, ATP represents energy at the cellular level. Without ATP, cells, especially brain and muscle cells, cannot function. The most sensitive and vulnerable cells in the body are those of the cerebral cortex. Little Charlie cannot see or hear or move or swallow or vocalize or think. No one can know with absolute certainty, but he probably cannot “feel” anything at this point. The word tragic is utterly inadequate.
The global media frenzy surrounding this heartbreaking situation is revealing and deeply disturbing. Controversy sells, and unfortunately, the less people know, the more adamant and emotional they often become. Those of us who have dealt with life and death situations for decades can help by elevating the level of conversation. Some timeless principles are useful:
- Embrace humility. Never be afraid to say “I don’t know enough about this situation to have a well-informed opinion.” That would be refreshing.
- Exercise the intellectual discipline to learn the facts involved. In medicine, every patient is unique. Arguments for or against life support or experimental treatments are pointless absent actual knowledge.
- Resist the temptation to become emotional. Unbridled emotions cause far more problems than they solve. Try to be the voice of reason.
- Try not to confuse or conflate the issues. People in nearly every media outlet have tried to make the case about socialized medicine, cost control, parental rights, the British court system, the European Union, or theology. The case of Charles Gard is about medical ethics.
- Focus on principles, not personalities. There is a colossal difference between saving life and prolonging death. Remember, there is never a moral imperative to render futile care.
Primum non nocere. (First, do no harm.) There’s a reason that Solomon prayed for wisdom.