Who Decides: The Parents or Government?
Many of us have been following the heartbreaking saga that a British couple has been dealing with concerning their son Charlie Gard.
Charlie is now eleven months old and has a very rare genetic brain disease called mitochondrial DNA depletion syndrome.
What is Mitochondrial Disease?
Mitochondrial disease is the umbrella term for a number of rare conditions caused by genetic mutations that result in the failure of mitochondria, specialized compartments within most cells that supply the energy needed to sustain life and support organ function. When mitochondria fail, cells can be injured or die, causing organ systems to shut down. The brain, heart, muscles and lungs are most affected because they need the most energy.
Charlie suffers from a form of the disease known as infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS.) It is specifically known as the RRM2B mutation of MDDS. There is no known cure.
The issue with this case is the parents in Britain do not have the absolute right to make decisions for their children. In fact it is normal for courts to intervene when parents and doctors disagree on the treatment of a child. According to British law the rights of the child take primacy, with the courts weighing issues such as whether a child is suffering and how much benefit a proposed treatment might produce.
The issue is that Charlie’s parents have raised over a million dollars to send their child to the United States for experimental treatment that the doctors say may and I emphasize may have a very slight chance of helping him.
The hospital where Charlie is being treated has come to the conclusion that the treatment the baby’s parents are seeking is unjustifiable and “would prolong Charlie’s suffering.” Justice Nicholas Francis of the Family Division of the High Court of Justice ruled in April that withdrawing life support was in the boy’s best interest. The ruling has kept the hospital from allowing Charlie’s transfer overseas.
Professor Dominic Wilkinson, director of medical ethics at the Oxford Uehiro Center for Practical Ethics, said decisions about life-sustaining treatment for a child are “fraught.” He is quoted as saying:
Sadly, reluctantly, doctors and judges are justified in concluding that continuing life support is not always helpful for a child and is in fact doing more harm than good,” Wilkinson said. “Providing comfort, avoiding painful and unhelpful medical treatments, supporting the child and family for their remaining time: sometimes that is the best that we can do, and the only ethical course.
The British courts have ruled that doctors could take the little boy off life support without parental consent and the European Court of Human Rights declined to hear the case. The doctors say there is no hope, Charlie cannot breathe on his own and he has brain damage. And they say the boy’s parents have no right to determine his fate.
That is where the controversy comes in, the fact that the courts have ruled that the parents have no right to determine his fate.
The question is who should have the ultimate right of a child receiving health care, the parents or the state?
This brings us to what many believe is an obvious analogy and that is any parent who believes a child should not receive health care due to religious reasons, i.e. Jehovah witness. My thought is there is a big difference in withholding healthcare and parents wanting to try any healthcare that may help their child and they are willing to pay for it.
What are your thoughts?