In 1999, then Governor George W. Bush signed the Texas Futile Care Bill into Law. This bill states that if a patient doesn't have health-care coverage dramatic life-sustaining techniques should be the decision of the hospital, not the patients primary guardian or their family.
Just last week under this law, life support for a six-month old baby was removed - against the will of the child mother who did not have health insurance to pay for continued care.
Where was the heroic late-night session of Congress to protect the life of this baby?
March 16, 2005
Life-Support Stopped for 6-Month-Old in Houston
Yesterday Sun Hudson, the nearly 6-month-old at Texas Children's Hospital in Houston, diagnosed and slowly dying with a rare form of dwarfism (thanatophoric dysplasia), was taken off the ventilator that was keeping him alive. A Houston court authorized the hospital's action, and Sun died shortly thereafter. Today's Houston Chronicle and Dallas Morning News have most of the details.
Both papers report that this is the first time in the United States a court has allowed life-sustaining treatment to be withdrawn from a pediatric patient over the objections of the child's parent. (The Dallas paper quotes John Paris, a bioethicist at Boston College, as its source.) If true, the unique Texas statute under which this saga was played out contributed in no small way to the outcome. As one of the laws co-authors (along with a roomful of other drafters, in 1999) let me explain.
Under chapter 166 of the Texas Health and Safety Code, if an attending physician disagrees with a surrogate over a life-and-death treatment decision, there must be an ethics committee consultation (with notice to the surrogate and an opportunity to participate). In a futility case such as Sun Hudson's, in which the treatment team is seeking to stop treatment deemed to be nonbeneficial, if the ethics committee agrees with the team, the hospital will be authorized to discontinue the disputed treatment (after a 10-day delay, during which the hospital must help try to find a facility that will accept a transfer of the patient). These provisions, which were added to Texas law in 1999, originally applied only to adult patients; in 2003; they were made applicable to disputes over treatment decisions for or on behalf of minors. (I hasten to add that one of the co-drafters in both 1999 and 2003 was the National Right to Life Committee. Witnesses who testified in support of the bill in 1999 included representatives of National Right to Life, Texas Right to Life, and the Hemlock Society. Our bill passed both houses, unanimously, both years, and the 1999 law was signed by then Governor George W. Bush.)
In the Hudson case, the hospital ran through the statutory procedure, but decided nonetheless to get a court order authorizing withdrawal of Sun Hudson's ventilator support. The hospital undoubtedly had its own sufficient reasons for taking this additional step; the statute doesn't require a court order. Indeed, the statute was designed to keep these cases out of court, if possible.
I am no great fan of unilateral withdrawals of treatment under the banner of "medical futility." When our drafting team agreed on the key language in chapter 166, I said that I hoped the authority to unilaterally withhold treatment would never have to be invoked, but I knew then what I know even better now: sometimes good, humane medical care requires it.
Since the 2003 change that made the law applicable to minors, I have participated in two cases in which life-support was ultimately withdrawn from infants over parental objections. In both cases, the hospital extended the 10-day waiting period in order to attempt to restart discussions with the parents before unilaterally withdrawing life-support. In one case, a previous hospital's ethics committee (on which I also serve) had twice agreed with the attending physician. The hospital CEO overruled the committee the first time (before the 2003 amendment that added minors to chapter 166), and the second time the child was transferred to our hospital on the 9th day, and we restarted the statutory process from scratch. In neither case did the hospital resort to a judicial proceeding to settle the treatment dispute.
My experience on five hospital ethics committees, and as co-chair of two, is that in both adult and pediatric cases, most futility disputes never get to this last step of unilateral withdrawal of life-sustaining treatment. In most cases either the families drop their opposition along the way or the patient dies before the due-process steps required by the statute have been exhausted. Last fall, ethicists at M.D. Anderson surveyed Texas hospitals' experiences under chapter 166; I hope they will publish their results soon. It will be extremely interesting to find out how often the statutory process has been followed all the way to the end, including withdrawal of life-sustaining treatment over family objections.
There is no telling how the Houston judge would have decided this case if chapter 166 were not on the books. On the one hand, it appears that no judge in this country has ever sided with the family in one of these treatment disputes. On the other hand, the physicians, hospital, and ethics committee appear to agree that Sun's condition was fatal and that his protracted death was not without some suffering. (I don't know how to square this with newspaper reports that "[t]he hospital's description of Sun [was] that he was motionless and sedated for comfort.")
But in this case, the judge wasn't writing on a blank slate. The Legislature had already spoken, twice -- once in 1999 when it enacted chapter 166 and again in 2003 when it amended the law to make it apply to pediatric patients. All the judge had to do -- and apparently all he did do -- was to find that the law authorizes the hospital to withdraw treatment over the objections of Sun's mother, Wanda Hudson.
The papers also report than another case is making its way through Houston courts: "Another case involving a patient on life support — a 68-year-old man in a chronic vegetative state whose family wants to stop St. Luke's Episcopal Hospital from turning off his ventilator — was scheduled to be heard Tuesday by the Houston-based 1st Court of Appeals. But the case was transferred to the 14th Court of Appeals, which promptly issued a temporary injunction ordering St. Luke's not to remove the man's life support. No hearing date has been set." More on this case in a future post. [tm]
Another irony concerning the recent Congressional action involving the quite similar case of removing the feeding tube for Terry Shiavo - is the fact that Terry Shiavo was originally hospitallized for Bulimia. The prolonged loss of potassium damaged her heart muscle, bringing on a heart attack that lead to oxygen deprivation and brain damage.