How Long Should Texas Docs Treat Untreatable Patients? The Debate That Won't Go Away.

Categories: Politics

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Jordan Allen's case will become part of Texas' annual debate over medical futility.
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."

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Republican Bryan Hughes brings up end-of-life care every session.
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.

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.

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15 comments
zansd94
zansd94

My experience is that Texas doctors BMC in particular will just abandon you.  I am attempting to file suit against them for Medicare Fraud, Civil Rights Violations,and unsafe practices in their hospitals.  After 27 years I left the state because of the absolute deplorable care.  It broke my heart I had lived in Texas 27 years

Mike
Mike

He introduces the legislation in several sessions and gets nowhere.  What makes you think that result will change?  No church to my knowledge opposes ending care for terminal patients.  Churches oppose using an active agent to end life.  Additionally no one wants to spend the money to keep treating these people.  We have a process that works and no one in any authority wants to change it.

Is this the new pattern for the Observer?  Go into the hopper and find the bill least likely to pass?  What is next, a bill to eliminate the Texas Rangers (the police) as wasteful?  By the way, I don't think he'll introduce next year since the legislature has the next year off.

El Rey
El Rey

"Fundamentally and morally, it's never right for a doctor or hospital to impose their quality-of-life judgments on their patients." - But it is okay for Senator Hughes to impose his quality-of-life judgments on the populace...

My wife has served on these ethics panels. She has lost a lot of sleep, knowing her decisions have major consequences. Nobody on the panels she has served on has ever been a cheerleader for ending care, including the doctor who asks for the panel to convene. The family and their attorneys (if they bring an attorney along) are a part of the process.  The insurance companies are not there to say what they will or will not pay for. It is just a matter of facing what seems to be a futile course of treatment versus the quality of life of the patient.

The Houston article mentions the fight is over timelines. 10 days, 14 days, 21 days. Just wait until Obamacare removes these ethics panels entirely and puts it in the hands of a suit in some cubicle in Washington, D.C... (Yeah, Sarah Palin was right when she brought up "death panels". They just have a more PC name.)

Guest
Guest

Are you talking about the Independent Payment Advisory Board?

The one that, by law, is prohibited from recommending any rationing of care?

Or something else?

scottindallas
scottindallas

This is an important and difficult subject.  I appreciate the article.  I am proud that Texas has this law, I think it's good policy.  You didn't address whether these people had insurance privately, through medicaid, if anything at all.  I wonder how many doctors would be willing to treat these kids under the various routes of funding, private insurance, personal fortune, and medicaid versus medicare.  I think the law is good, why not offer open records of this, (with names removed?)

jesdynf
jesdynf

Hughes' campaign website talks about getting the eeeeevil gubmint out of healthcare.

No, that's it, no joke here -- I just thought you should know.

pak152
pak152

"most hospitals and doctors are not abusing the law, but some are" so why not ask him how many are abusing the law? how often and how many?

Anonymous
Anonymous

lawmakers (of both stripes) do not actually attempt to show whether a law is working or not w/ data. it's like the efforts to eliminate voter fraud. we "know" it's happening, we just don't really know with things like "facts". here again, we "know" that doctors and hospitals are scheming to kill patients that have even a remote chance of recovery. And just for the record, I'm not taking a position one way or the other on whether voter fraud is happening, I'm simply pointing out that the people proposing laws to deal w/ problems take for granted that people will believe the problems exist. Same w/ this law. Prove the current law is not working before you decide it needs to be scrapped.

Watching
Watching

It is very selfish of these parents to let their child suffer.  

Titus Groan
Titus Groan

Suffering is potentially curable.  Death isn't.  So you can maybe understand their reluctance to pull the plug.

cp
cp

"...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."

Let's check back with Atrium Medical Center in a few years.....

Anon
Anon

The parents' feelings and reluctance to stop trying are totally understandable. But that does not change the fact that for the terminally ill, you do reach a point where further treatment is unhelpful at best, and harmful at worst. The fact that many parents are understandably unable to acknowledge that this point has been reached for their child, makes it all the more necessary that doctors have the ability to make this decision.

The irony in this is that I believe the larger problem is not that doctors are too quick to decide that further treatment is useless; it is that they are too slow to let loved ones and patients know that further treatment may temporarily prolong a life, but will be ultimately futile and serve only to negatively affect the quality of that remaining life.

Titus Groan
Titus Groan

I'm just saying, if it's your kid, would you want to pull the plug, knowing it can't ever be unpulled?   Even if a doctor is telling you there's no hope?  Is it so selfish of a parent to feel reluctant about ending their kid's life?  Hopefully you never have to find out.

Anonymous
Anonymous

I assume that alongside his law he will be offering buckets and buckets of money to fund these hospitals or a proposal to offer affordable insurance to everyone in the state?

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