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Is care ever futile? Texas MDs, advocates square off
Baby Emilio Gonzales latest center of debate
If there is any state that is currently a lightning rod for issues relating to futility of care, it would be Texas. Medical professionals, right-to-life and disability rights organizations, churches, and civil liberties groups are doing battle over the Texas Advance Directives Act (TADA); many of the same parties have taken sides over a terminally ill Austin toddler whose mother is fighting a hospital's efforts to invoke the act to end the boy's life-sustaining treatments.
"There's some hard-knuckle politics going on down here," says Robert L. Fine, MD, FACP, who is both the director of the Office of Clinical Ethics at Baylor Health System in Dallas and one of the architects of TADA, which was passed into law in 1999 and amended in 2003. "And the Emilio Gonzales case shows the fundamental differences, with organized medicine and the Catholic church on record as saying he is terminal, and Texas Right to Life saying he's not dying."
The struggle over Emilio Gonzales illustrates what Emory University ethicist John Banja, PhD, calls parties hitting an "ethical bedrock."
"You have clashing views on what is futile, and unfortunately, ethical theory is unable to reconcile that clash," says Banja, assistant director for health sciences and clinical ethics, and associate professor of clinical ethics at Emory in Atlanta.
Emilio Gonzales: Is care ever futile?
Fine stops a question about Texas' "medical futility law" to point out that the state has no such law; TADA is about advance directives, and the controversial section on withdrawal of care deemed medically futile is only one part of the act.
"Care is never futile," he says.
In the case of 17-month-old Emilio Gonzales, however, Children's Hospital of Austin has declared that its medical efforts on his behalf are futile, and that he is suffering as a result.
Emilio is believed to have Leigh's Disease, a rare, progressive, inherited neurometabolic disorder characterized by degeneration of the central nervous system, according to a statement released by the hospital's attorneys during court proceedings. He cannot breathe, eat, or swallow on his own, and can't make purposeful movements; the hospital says the child's higher-order brain functions are destroyed.
"He was imminently dying until he was placed on a ventilator," says Fine.
Acting under TADA, and with the concurring opinions of physicians and the hospital ethics committee, Children's Hospital, where Emilio has been treated since December 2006, notified Emilio's 23-year-old mother that in 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 did disagree, no other hospital was willing to accept transfer, and so, with the backing of Texas Right to Life, she went to court seeking an order barring the hospital from ending its treatment of her son.
As of the time Medical Ethics Advisor went to print, a judge in Austin had ordered that the hospital refrain from withdrawing treatment, with a follow-up hearing scheduled for mid-May.
The Gonzales case is the latest court battle over TADA. While cases like that of Gonzales, Sun Hudson, and Tirhas Habtegiris have gathered national attention (both Hudson and Habtegiris were removed from life support over the objections of family members), Fine points out that there have been only about a few contested cases over withdrawing care from patients under TADA.
At Baylor, from 2001 through 2003, there were 47 futility consultations. In 43, the ethics committee agreed with the health care provider's determination that treatment was futile, and the families agreed in 37 of the 43 cases. In six cases, the family refused to withdraw treatment. Of those six, three agreed within a few days after the committee determination, two patients died during the 10-day transfer/wait period, and one patient died awaiting transfer to another provider.1
"When we are fighting at such a basic level of argument [the definition of what is futile], we don't have a way of resolving it," says Banja. "Both sides have good reasons, and we just can't adjudicate it."
If a parent or family member of a terminally ill patient is presented with overwhelming evidence that further treatment is not going to improve the condition of that patient, the medical providers' definition of futile might not be the same as the family members'.
"If we had clinical criteria for a pediatric patient, and his health care providers said his condition is not going to come around and it would be unwise, wasteful, and unethical to continue treating him, but his mother says, 'If there is a one in 1 million chance that he will improve, that is what I believe is owed to my child, even if he doesn't recover,' I don't know what you can say to that," Banja says.
What is reasonable?
Banja says difficult cases like that of Emilio Gonzales boil down to arguments over reasonableness.
"The idea of what is reasonable is key, and it is precisely what we disagree about," he explains. "We don't have a vision of reasonableness. To Ms. Gonzales, it is perfectly reasonable that her child continue to get care, and in fact, would be criminal for health care providers to abandon her son.
"Health care providers, on the other hand, would say that it's clinically unreasonable to treat this infant because he will die anyway, and it's ethically and financially unreasonable to prolong his dying."
The Gonzales case is very likely a struggle for his medical providers on two levels, Banja theorizes.
On one level, there are the purely biological and bioethical issues dealing with what is just and fair to Emilio and in allocating valuable health care resources that could be used to benefit others.
On another level is the "moral distress" that the case presents for those caring for him. His care providers already feel helpless because his medical condition leaves them unable to provide anything but palliative care. "Add to that a non-health care provider, his mother, who is making demands on them that they feel are not warranted and reasonable, and that adds to and mixes the psychological and emotional turmoil all the more," Banja suggests.
So what do doctors do when confronted with one of these "bedrock clashes"?
"Health care providers have to continue to drill down on the notion of reasonableness," Banja advises. "You should only invoke futility legislation when it is very, very clear that health care providers are being asked to do something that is excessively unreasonable, with an emphasis on "excessively," from various points of view — clinical, ethical [when it creates more suffering than benefit], and financial, when it is squandering health care resources we could put to better use."
Texas MDs fighting to save TADA
Fine says he and other medical professionals in Texas find themselves struggling to save a law that doesn't need fixing.
"Organized medicine doesn't think [TADA] is broken; we think it's served patients well," says Fine. "But the National and Texas Right to Life [organizations] pulled out of the consensus agreements we operated under when the law was passed in 1999, and now there's no consensus about the law. It's a tough political battle, bottom line."
Fine says Right to Life leaders told him that after outcry from its membership following the Terri Schiavo case, they could no longer support the Texas law that provides an avenue for physicians to withdraw life-sustaining treatment, even in futile cases.
"In 1999 and 2003, we operated by compromise; now there are number of competing bills, and organized medicine's [testimony that the law doesn't need changing] has been rebuffed," says Fine.
There are several bills that would change TADA from a little to a lot, Fine says. One bill would add some time between when families are told that an ethics committee will rule on continuation of care and when that committee meets and would extend the time families who object to the termination of life-sustaining care have to find a facility to move the patient to.
That bill, sponsored by state Rep. Dianne Delisi, has won tentative support from the Texas Medical Association (TMA) and Fine, but any bill making changes to the law is felt to be unneeded by those who back TADA, Fine says. Troubling to backers of the current version of TADA is a provision that would bar hospitals from invoking the law in cases of patients whose only life-sustaining treatment is artificial hydration and nutrition — a direct result, Fine says, of the Schiavo debate.
Strange political bedfellows
Rival bills would force doctors to continue treating terminally ill patients indefinitely if their families or other proxies objected to withdrawing care, and have created some unlikely alliances — the Texas American Civil Liberties Union (advocating for the disabled) and Texas Right to Life on one side, the Catholic church siding with physicians, to some extent, on the other.
"We're working with Rep. Delisi to get a favorable bill," Fine explains. "But I'm very concerned about the fate of the law. It's trapped in post-Schiavo politics."
Fine says it was his observation that before Schiavo, during the years after the Nancy Cruzan "right-to-die" ruling, there was a more cooperative atmosphere when it came to compromise and consensus on end of life and medical futility issues.
"Now, after Schiavo, it's very fractured, very contentious. It's a very different atmosphere, and it's all part and parcel of the national post-Schiavo politics," he says.
Banja doesn't agree that opposition to TADA stems from Schiavo, but rather is the result of efforts on the part of those who advocate for rights for the disabled.
Bob Kafka, an organizer of the Texas branch of the anti-euthanasia organization Not Dead Yet, says he has concluded "that the essence of any futility law embraces involuntary euthanasia. The ability of a doctor to overrule both the patient and their surrogate in withdrawing life-sustaining treatment is in violation of the principle of patient autonomy."
"After hundreds of years of being told their lives are worthless, people with disabilities get the message — it's too hard to take care of them," Banja says, explaining the results of generations of discriminatory treatment. "Disability rights people say the message has been driven home that their lives are worthless, and they feel that futility laws give the able-bodied too much power to make decisions as to the worth of their lives."
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