Last week, just outside of Houston, a little boy's parents were scrambling. Doctors at Texas Children's Hospital had told them there was nothing more they could do for the boy, 14-year-old Jordan Allen, whose brain is dotted with inoperable tumors. He was on a ventilator and in a coma, and further treatment would have done him more harm than good, the doctors believed. They thought it was time to let him go.
The parents disagreed. And that disagreement guaranteed the family's place at the center of a decade-old fight pitting Texas doctors and hospitals against lawmakers and activists, over how long is too long to care for a patient who appears certain to die.
The fight dates back to 1999, and focuses on a narrow but emotionally volatile and unique section of the Texas's advance-directives law. Under that law, doctors have the right to halt treatment when they no longer believe they're acting in a patient's best interest. If the patient's family disagrees, the case goes before a hospital ethics panel. It's a process unique to Texas, experts say, the only state to offer a "legal safe harbor" for doctors who end treatment to medically futile patients.
The committee -- some mix of doctors, lawyers, administrators, chaplains and others -- must decide whether the doctor is right to stop treatment. If it sides with the family, the doctor keeps working. If it agrees with the doctor, the hospital must help the family search for an alternative, another hospital or doctor willing to continue caring for the patient. If after 10 days the family hasn't found someone to treat their loved one, the doctors can let the patient die.
It's hard to know how often these cases come up. Hospitals don't have to report to the state when these ethics panels meet, and no wide-ranging studies have tried to find out. Denise Rose, the senior director of government relations at the Texas Hospital Association -- which supports the current law -- says the organization has surveyed its members and found disagreements between doctors and families to be rare. A study at Baylor Medical Center found that in the two years after the law passed, the hospital's ethics panel heard medical-futility cases about twice a month. The panel sides with doctors about 60 percent of the time, says Dr. Robert Fine, the director of Baylor's Office of Clinical Ethics and Palliative Care.
"It's an important issue for a small number of people," Fine tells Unfair Park. "They're rare, but they're really unpleasant for both sides."
Which is why state Senator Bryan Hughes, a Republican from Mineola, and a leading Texas anti-abortion group have made it their mission to change the law.
For several legislative sessions running, Hughes, with help from Texas Right to Life, has introduced bills to extend the 10-day search window indefinitely. Their bill would force doctors and hospitals to treat patients for as long as it takes to find someone else willing to take them on.
"We're thankful most hospitals and doctors are not abusing the law, but some are," Hughes told the Austin American-Statesman (he didn't return multiple calls from the Observer). "Fundamentally and morally, it's never right for a doctor or hospital to impose their quality-of-life judgments on their patients."
Doctors and hospitals disagree, arguing that indefinite treatment to an untreatable patient puts doctors at risk of violating their oath to not do their patients' harm. Along with THA, the Texas Medical Association has fought the bill -- although they've supported extending the window to 14 days. But "in a situation where the doctor feels that the patient is being harmed, that may not be a good thing," Rose says.
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Rose recalls another case from Texas Children's in which the hospital and family called 40 facilities looking for someone willing to treat a terminally ill child. All 40 refused -- an indication, Rose says, that if an alternative can't be found in 10 days, it's likely because there's no alternative worth pursuing.
If there are facilities willing to take over, it should only take a few days to find one, THA argues. In Jordan Allen's case, it took five. He was transferred to nearby Atrium Medical Center after Texas Children's decided to stop treatment, five days before the deadline and just a few days before his case would have almost surely wound up on national TV.
"We're greatly relieved," the boy's father told the Houston Chronicle. "We knew we were up against the clock."
But in Texas, the issue isn't going anywhere. Hughes is expected to introduce the same legislation next year.