Ethics of Life and Death

The varied media have, again, raised awareness of the tragic situation in Austin, Tx of Emilio Gonzales – a 17 month old child hospitalized with Leigh’s disease (a rare genetic disorder for which there are no known cures). CNN, Fox, the major networks, and most daily newspapers have focused on the struggle between parent and care givers.

Emilio’s mother believes he still responds to stimuli and that all treatment should continue. “I love my kid so much, I have to fight for him…that’s your job – you fight for your son or your daughter. You don’t let nobody push you around or make decisions for you.”

Austin Children’s Hospital believes continued treatment “inflicts suffering.” “We are inflicting harm on this child. And it’s harm that is without a corresponding medical benefit.”

“Who should decide whether or not to treat?” appears to receive the most attention. One ethicist, Dr Lainie Ross from the University of Chicago, thinks Emilio’s mom should “decide if his life is worth living.” Another ethicist, Dr Art Caplan from the University of Pennsylvania, believes “there are occasions when family members just don’t get it right. No parent should have the right to cause suffering to a kid in a futile situation.”

To the extent that our attention stays focused on the tragicness of the situation we will continue to avoid the many issues raised in such circumstances.
Arguments as to who may or may not “play god” are very non-productive!
Were we playing “god” when we put the child on the respirator?
If “god” is determined to keep Emilio alive, then neither our treatment nor its lack will be determinative.
The issue of adequate insurance for medical care is very relevant. Emilio is on Medicaid – and that government program almost never pays so as to cover costs.
As a parent expressing my desire for my child, do I automatically have the power to obligate the larger community to significant expenses? Only expenses related to treatment of sickness? Might I, also, obligate society to other costs associated with raising a child (food, clothing, housing, schooling, etc.)?
What should we do to provide medical treatment/care for the millions in our nation who do not have health insurance? The children unable to receive basic, routine vaccinations? The children whose diabetes goes poorly treated, resulting in other health concerns?
Are we willing to treat only those with access to the media? The dying child? The mentally disturbed college student who kills 32 others?
The issue of intelligent allocation of resources is one we often wish to avoid.
The resources (staff, medicines, dollars) spent to provide care for Emilio are not available for other children with greater prospects for quality of life.
The resources (staff, medicines, dollars) spent to provide “treatments” for thousands of others who are terminally ill – rather than providing “care” for them – place tremendous strains on our professional personnel (doctors, nurses, technicians, etc) leaving them less prepared to care for society as a while.
The monies we direct towards discretionary concerns [ie. wrinkles, fat, cosmetic needs, etc.) means less money to eradicate those diseases which still cause death.
The reality that we live in an imperfect world and that dying and death are integral to that world. Not every dilemma is resolvable by labeling “good” versus “bad”. Emilio’s mother, from all news available to us, is a “good” mother. Emilio’s treatment team at Austins’ Children, from all accounts, is a “good” team. Casting them in antagonistic roles does them all a disservice. And, it allows us to ignore our own mortality!

This issue, coming in these weeks after Easter, would be an excellent topic for discussion in our parishes. Does the “resurrection” speak to issues of the care of the sick at all?