Last Saturday, a little boy named Emilio Gonzalez lost his fight with Leigh's disease, dying at the age of nineteen months.
Losing a child at any age is always a tragedy, but in the case of baby Emilio the tragedy was compounded by Texas' futile care law. This disgraceful law gives patients and their families a mere ten days to transfer to another medical facility if the hospital treating them decides that the care being given them is "futile;" otherwise, the hospital may legally discontinue life-sustaining treatment against the wishes of the patient or the person responsible for making the patient's medical decisions.
Baby Emilio's mother had to go to court to stop the Austin hospital where he was a patient from removing his ventilator. Having declared his care to be futile, the hospital was entitled by the current law to do this. Since his mother took the fight to the courts, however, the hospital didn't remove the ventilator, and Emilio died just short of two months after the date the hospital originally intended to end his life.
In a nineteen month lifespan, two months is a lot of time.
It should be pointed out that the removal of a ventilator is not the same as the removal of food and water; this case is not a parallel to the Terri Schiavo case. One may licitly refuse a ventilator, even on behalf of someone else in one's care. Whether one can remove a ventilator after it has begun to be used, if it is known that the person will not be able to breathe and will die within minutes is a subject of debate; some moral theologians appear to believe that this may only be done if some effort is made to wean the person off of the ventilator, if necessary operating and giving the person a tracheotomy or other procedure that would allow the patient to breath despite any obstruction; others do not appear to believe that this must be done, particularly in cases where death is truly imminent and the ventilator itself is causing severe pain and discomfort to the patient, as sometimes happens. I am not an expert in this area, but I do think that a ventilator presents a different level of care than the ordinary care of food and water, which are normative even if they must be delivered through a feeding tube.
Having said all that, though, what is troublesome about Baby Emilio's case was the fact that the hospital, and not the patient's mother, was allowed to make the decision to remove the ventilator; further, though they gave Emilio's mother ten days to find another facility that would take Emilio, they knew quite well that nursing care and hospice facilities would refuse to take him precisely because he was on a ventilator! There was no good-faith effort to help find another solution for this patient and his family, in other words.
The reality here is that while doctors and hospitals may be good judges of someone's medical condition or the benefits or lack thereof of treating that person, only a patient and his family should be able to make the decisions about what treatment options will be accepted or rejected. I have no problem with a caring doctor attempting to persuade a family that further care of their loved one will do no good, and may even cause unnecessary pain; but I have lots of problems with the idea that the doctor can then take this information to the hospital's ethics board, which will then decide to order the discontinuation of the treatment.
The Texas futile care law creates an untenable situation fraught with hostility between doctor and patient. Indeed, the relationship between doctor and patient is completely fractured by this law, which forces doctors to be more answerable to their employer then they are to their patients, and which further requires the doctors to deem some patients unworthy of even palliative care at the end of their lives. There is talk, at present, of giving patients twenty-one days to make new care arrangements instead of the current ten; though this may seem like a step in the right direction it doesn't even begin to address the underlying, and very wrong, assumption that decisions like these should be made by people other than the ones being treated, or their loving family members on their behalf.