The Baby Emilio Debate

Emilio Gonzales is a 17 month old with a rare genetic disorder called Leigh's disease. According to WebMD and other sources I've read, this is a neurological disease in which the entire nervous system deteriorates with symptoms showing themselves as early as three months old.

There is no cure for Leigh's disease. As the disease progresses, all of the muscles in the body progressively get weaker, including the respiratory muscles. As breathing becomes more difficult, it requires being put on a ventilator to stay alive. This is the stage that Baby Emilio is at right now.

Who should decide whether to remove life sustaining treatment from this infant? The interesting key point about the Baby Emilio case is that the hospital, according to Texas state law, may withdraw life support if medical experts deem it inappropriate. This is even if the parent, in this case, Emilio's mother Catarina Gonzales, wants the treatment continued. (

The case, and the Texas law, have divided medical ethicists. Art Caplan, an ethicist at the University of Pennsylvania, supports the Texas law giving the hospital the right to make life or death decisions even if the family disagrees. "There are occasions when family members just don't get it right," he said. "No parent should have the right to cause suffering to a kid in a futile situation."

But Dr. Lainie Ross, a pediatrician and medical ethicist at the University of Chicago, says she thinks Emilio's mother, not the doctors, should be able to decide whether Emilio's life is worth living. "Who am I to judge what's a good quality of life?" she said. "If this were my kid, I'd have pulled the ventilator months ago, but this isn't my kid."

The law, signed in 1999 by then-Gov. George W. Bush, gives Texas hospitals the authority to stop treatment if doctors say the treatment is "inappropriate" -- even if the family wants the medical care to continue. The statute was inspired by a growing debate in medical and legal communities over when to declare medical treatment futile.

Issues of medical ethics have always fascinated me. I wrote about The Ashley Treatment back in January, and up to now, that post has generated over 50 comments (that's huge for me) and continues to be one of my most viewed posts on a daily basis. I always feel weird quoting myself, but here's what I wrote back then....
Ethics always lags behind science. When that happens, the legal system and possibly even the government get involved. And, that's where things get ugly. Things get more political. The activists with political agendas get energized. I won't be surprised if this very issue is inserted into the 2008 US Presidental campaign - Remember Terri Schiavo and the end of life debate? Remember Michael J. Fox and the stem cell debate?
The government already got involved before Emilio Gonzales was even born. I certainly hope that the politicians and the activists on both sides will not get involved in this debate. Just to let you know, from the legal point of view, Baby Emilio's case is in the court system with the next hearing to take place in 12 days on May 8th.

Now, people are probably not going to be surprised by this, but I would have to agree with the hospital docs on this one. My disclaimer is that the only information I have is from news reports. Of course, I'm not there and I don't have any first hand knowledge of the medical portion of the case.

Here are questions to ask yourself as you sort out how you feel about The Baby Emilio Debate:

  • When it comes to making medical decisions on stopping life support for young children and infants, who should have final say (hospitals or parents)?
  • If there is no hope for recovery, how do you know how much suffering you're causing by the life sustaining treatments that are being done? How you know how much benefit you're gaining?
  • How do you define quality of life?
  • Emilio is on Medicaid, which means that the taxpayers of Texas are paying for his continued treatments. Should ability to pay be a factor in ethical debates like this one?