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Texas works to defuse hostility over futility law
Baby Emilio's death doesn't end debate
A 19-month-old toddler with no hope for recovery became the center for the most recent debate over laws on futility, but now that little Emilio Gonzales has died (May 19, 2007), the state of Texas continues to wrestle with what to do with its advance directives act.
Texas' futile care law, originally passed in 1999, was tested most recently when Children's Hospital of Austin declared that its medical efforts on behalf of Emilio, who was believed to suffer from Leigh's Disease — a degenerative brain disease — were futile and that he was suffering as a result. Under the provisions of the act, and with the concurring opinions of physicians and the hospital ethics committee, the hospital notified Emilio's 23-year-old mother earlier this year that after the statutory 10 days, his ventilator would be removed. If she disagreed, she had 10 days to find another hospital willing to admit and care for her son. She was unable to find a hospital to accept transfer, so Emilio's mother and Texas Right to Life went to court seeking an order to continue treatment for her son.
The court barred the hospital from withdrawing the ventilator pending further review; in the meantime, Emilio died.
Following heated debate over various bills that would do anything from change the waiting period to completely gut the futility law, in early May the various parties to the issues — right-to-life, right-to-die, church-based, activists for the disabled, and medical associations — reached a compromise on a bill that would require hospitals provide life-sustaining care to patients deemed medically futile for at least 28 days after the determination of futility.
That compromise bill died in the legislature in late May, leaving the advance directives act in place, unchanged. However, physicians groups (which predominantly supported leaving the act unchanged) as well as hospitals and proponents of change to the law issued statements agreeing to work together to ensure patients and their families are treated as humanely as possible whenever the issue of futility arises.
Many hospitals said they are already implementing in-house policies around futility that go far beyond what the law requires, and closely resemble the compromise reform that failed to pass legislative muster. Most say they are informally and significantly extending the timetable for a family member or designated surrogate to contest a doctor's decision to stop care.
The Texas Medical Association and Texas Hospital Association indicated they would support hospital policies that would implement many aspects of the failed compromise bill, including more than doubling the amount of time families would have to find alternative care once a determination of futility is reached. Under the existing law, families have two days' notice of ethics committee meetings, plus 10 days after determination of futility, for a statutory total of 12 days.
Another change hospitals say they'll implement as a result of the debate over the futility bill will give family members or other patient surrogates easier access to medical records and resources such as right-to-life advocates.