A reader, unfortunately, shows us the other extreme of the end of life debate. However, she missed the point entirely. Our discussion about the end of Emilio’s life is a debate about conscience, laws, and whether because doctors are licensed by the State, they abdicate their duty to act in the patient’s best interest.
It is also a demonstration that the first principle of medical ethics should be non-maleficense, not autonomy. In the name of “autonomy,” the mother is demanding that the doctors carry out acts that they believe are not in Emilio’s best interests. The lawyer for the mother questions what the doctors are telling other hospitals, and patient’s rights advocates accuse the doctors of abusing an “imbalance” of power.
The doctors – and the Ethics Committee, in their report as published by The North Country Gazette – have shown the evidence that leads them to believe that this child is experiencing pain and being harmed due to the actions of the doctors.
Here’s the case they made, with a little explanation and guess work from me:
The lungs cannot tolerate the ventilator. We know this because of the repeated pneumothoraces (or “leaks”). Any one of these instances would have lead to a “natural death” by the compression of the lung tissue – and even the heart – if the doctors had not intervened on the mother’s request.
There are large areas of the child’s brain that are dead, and more are dying due to the seizures (and probably, the build up of lactic acid and other toxins). We know this because it shows on the MRI and the EEG.
More than likely, feeding by IV, a feeding tube placed in the gut or even by mouth harms this child. We know that the cells lining the intestines grow and replace themselves faster than any other cells in the body. Probably, the lining of the gut is mostly dead because the cells require energy from the mitochondria to replace themselves and to fight off infection. Where the lining does remain, food in the form of fats, proteins and many nutrients must be moved into the system from the gut by actions of cells that require energy, rather than passive absorption. Everything must be moved through the gut by the actions of muscles that require energy or they will sit, build up, and decay.
Even in a child who has a healthy liver and functional mitochondria, long-term “total parenteral nutrition” damages the liver. In this case, the cells of the liver aren’t likely to be functioning well due to the mitochondrial defect and to the build up of lactic acid and other poisons, including those IV feedings. Virtually all food is processed in the liver by cells that use energy to function. Most waste products are also processed by the liver, again, in cells that use energy.
Very soon, if not already, Emilio will need kidney dialysis. Due to the brain damage and the acid build up in his blood, his blood vessels will not be able to contract and hold his blood pressure up and his heart will beat irregularly.
The doctors laid this out for the Committee. The Committee’s report laid it out for us. From what I’ve read in the press and other blogs, the doctors have tried to explain this to Emilio’s mother.
And yet, we read that the doctors, the hospital, the Catholic Church and the State of Texas are all conspiring to kill Emilio against his mother’s wishes.
Edited 5/1/13 for formatting problems BBN