The US ‘Futile-Care’ Debate: How Are Cases Like Alfie Evans’ Handled Here?
Texas is one of three states that have enacted laws providing families with a window to seek new medical facilities when doctors or hospitals conclude additional care is not warranted for terminally ill patients.
The tragic case of Alfie Evans, the British toddler who died April 28 from a degenerative neurological condition after his parents were prevented by the European courts from taking him to a hospital in Italy, raised widespread concerns about government usurping parental rights.
In the United States, little Alfie’s story also casts a spotlight on so-called medical futility laws, which are designed to protect hospitals and physicians from legal action if they decide, against a family’s wishes, to discontinue medical care that they consider inappropriate or excessive for a terminally ill patient.
While some pro-life groups have opposed such legislation, other medical specialists and Catholic officials say that the laws in some American states — such as Texas’ Advance Directives Act — contain safeguards that include giving families the opportunity to find hospitals willing to provide the disputed care.
“What’s different about the Texas law from the U.K. case is the Texas law requires transfers, and in the situation in England, they refused to transfer. That’s a very key distinction between the two,” said Jennifer Carr Allmon, the executive director of the Texas Catholic Conference.
Allmon told the Register that the Texas law “is not perfect,” adding that the state’s Catholic bishops over the years have sought to improve its protections. But without such a statute, she said physicians in Texas would be held liable for refusing to provide medically inappropriate treatment.
“Overturning the act would be detrimental to provider conscience, in that it would not provide conscience protections for inappropriate interventions that become harmful to the human person,” Allmon said.
Besides Texas, only Virginia and California have laws that explicitly allow physicians and health care facilities, after a series of steps that include ethics committee evaluations, to discontinue treatment in cases where it is considered “medically inappropriate” to continue care.
The Prevailing Protocol
In most states, hospitals unilaterally decide to stop providing care if they cannot reach an agreement with a patient’s family members. But in the vast majority of cases, relatives follow the health care provider’s recommendations, several industry observers told the Register.
“Normally, there isn’t conflict,” said Thaddeus Pope, a health law professor, bioethicist and director of the Health Law Institute at the Mitchell Hamline School of Law in St. Paul, Minnesota.
Pope, who studies end-of-life ethics issues and blogs about difficult “futile” cases, told the Register that most conflicts between families and health care providers are resolved by chaplains and ethics consultants. Even in cases where the parties fail to agree, hospitals that stop providing care for terminally ill patients are rarely sued, often because civil attorneys see little chance of prevailing in court.
Pope used the example of a hospital deciding not to perform CPR on a terminally ill elderly cancer patient who loses consciousness. If the family took the hospital to court, they would likely have difficulty proving that CPR would have revived the patient.
“It is sort of a gray area, and it gets complicated,” Pope said. “Normally, you don’t do stuff to patients without their consent, and if the patient can’t or won’t consent, then you can’t do it. … So in a way, all this violates a long-standing rule about consent. But what U.S. doctors would say is the same thing the U.K. doctors said: that you’re making such a bad decision, that we don’t have to listen to you.”
Chris Dunn’s Case
The legal hurdles, and the existing Texas law, did not stop a relative from suing Houston Methodist Hospital following an emotional battle over doctors’ plan to withdraw life support from Chris Dunn, a 46-year-old man who died from cancer in 2015.
Dunn’s mother filed a lawsuit challenging the constitutionality of Texas’ futile-care law, arguing that it violated due-process protections under the Texas and U.S. Constitutions. A state judge subsequently dismissed the challenge, arguing that it would be a case of “throwing out the baby with the bathwater.”
The Texas Catholic Conference, joined by the Texas Alliance for Life and organizations that represent medical providers and people with disabilities, jointly filed an amicus brief in defense of the Texas law. They argued that the law provides a resolution for “intractable” cases where relatives demand medical treatment even after a doctor, compelled by their ethical obligation to do no harm, concludes further intervention would only extend or enhance suffering.
“Though we’d like to see some added protections for patients, at its core, it’s a good law because it balances the rights of patients to their autonomy about medical decisions and the conscience rights of physicians and medical providers to not have to provide something that is harmful or immoral,” said Joe Pojman, the executive director of Texas Alliance for Life.
Pojman told the Register that a Texas physician’s decision not to continue care is reviewed by an ethics committee, which gives the family at least 10 days to find a different provider that is willing to provide the disputed treatment. During that time, the treatment must be provided. In Dunn’s case, the hospital contacted more than 60 other providers, but none were willing to provide the treatment, Pojman said.
The amicus brief adds that “rarely” has life-sustaining treatment been withdrawn under the Texas law. Out of more than 1.3 million hospital admissions in Texas in any given year, the law is normally invoked only one to 10 times, said Allmon.
“It’s very rare that you get to a point where you see that level of disagreement,” Allmon said. “But there are checks and balances in the process for when that rare circumstance does arise.”
But not everyone in Texas and elsewhere is as sanguine about futile-care laws.
Texas Right to Life opposed Houston Methodist Hospital’s decision to withdraw Dunn’s treatment and joined his mother’s legal efforts challenging the law’s constitutionality.
“We’ve had concerted efforts to pass legislative reforms to the Texas Advanced Directive Act because of the abuses we’ve seen firsthand,” said John Seago, the legislative director of Texas Right to Life.
Seago, who also serves as an advocate for patients and families who challenge hospital decisions to withdraw care, told the Register that the Texas law is critically vague and has serious flaws that enable hospital ethics committees to decide futile-care cases on questionable grounds, including quality-of-life concerns.
“I’ve been in the room where hospital committees are adopting anti-life ethics of what is appropriate and what is not appropriate care,” Seago said. “They’ll talk about the patient’s futility, not the treatment’s futility. So they’ll say that even if this patient regains consciousness, they won’t be able to balance their checkbook if they recover.
“At that point, what’s happening is that you are no longer saying that we will care for the patient just because they are a human being. You’re actually putting additional criteria: that your life is only valuable if you can talk or balance a checkbook.”
Seago further said the Texas law does not provide patients and their families with due process, arguing that a hospital ethics committee is not an impartial arbiter and adding that families cannot appeal the committee’s rulings in court. On the 10-day transfer window, Seago said the deck is stacked against the patient because the physician who does not want to provide the treatment is the person who calls the other providers, thus possibly “poisoning the well.”
“The bottom line is that the law has such a vague process that you can substitute pro-life principles for anti-life principles using the process,” Seago said. “As long as you cross all your Ts and dot all your Is, the hospital can come up with very bad ethics and can deny treatment on very bad ethical principles.”
Texas Attorney General Ken Paxton also filed an amicus brief attacking the law, which he said “leads to the denial of a constitutionally protected interest — the right to life and the right to determine one’s medical treatment — and it does so through woefully insufficient procedures.”
Wesley Smith, an author and senior fellow at the Discovery Institute’s Center on Human Exceptionalism, has criticized futile-care laws as “well-meaning, but ultimately authoritarian” in his writings for National Review.
Writing Jan. 31, Smith said: “If the continued treatment of a patient is so egregiously against the patient’s interests, the life or death dispute belongs in court, with an open process, with the right of due process of law, cross-examination and appeal. Doctors should not be allowed to paternalistically impose their values on disagreeing patients and their families with no real protection for patient rights.”
While Virginia and California have taken Texas’ lead — the Lone Star State enacted its law in 1999 — other states have gone in “the opposite direction,” Pope said, adding that Oklahoma, Idaho and Kansas have passed laws that require physicians to provide care requested by patients and their families.
“Those laws are called nondiscrimination laws,” Pope said. “Instead of giving explicit permission to the doctors to do what they want, it’s giving explicit prohibition to the doctors, telling them, ‘It’s not your choice. It’s the family’s choice.’”
Catholic teaching on medical ethics can help to illuminate the issues underlying the disagreements over futile-care laws.
The Church’s teaching on medical care, as outlined in papal documents and the U.S. bishops’ health care directives, holds that a gravely ill patient and his or her caregivers can weigh the burdens and benefits when deciding on potential treatments.
For example, terminally ill cancer patients, given days or weeks to live, can refuse treatment if they believe the treatment would be too burdensome while not adequately extending their lives. There is no requirement in Catholic social teaching that a gravely ill patient’s life has to be extended at all costs.
“We don’t ever want to directly intend the death of a person, like in euthanasia or assisted suicide, nor do we want to directly intend to shorten the person’s life. However, often in treatment decisions, even though we don’t want someone to die, we can foresee that withdrawing or forgoing some kind of treatment is going to have that effect, even if we don’t want that to happen,” said Father Charles Bouchard, the senior director for theology and ethics at the Catholic Health Association of the United States.
Father Bouchard told the Register that physicians and hospitals are “stewards” of medical resources and can decide when particular courses of treatment will not benefit patients. Ideally, he said such decisions are made in consultation with the family.
“Health care decision-making should always stay as close to the patient as possible,” Father Bouchard said. “When it gets to the courts, it’s always a tragedy and so far removed from the bedside.”
Dr. Greg Burke, who co-chairs the Catholic Medical Association’s national ethics committee, told the Register that there are situations, “well within Catholic understanding and ethics,” where physicians should not be forced to pursue a treatment or therapy they truly believe would be futile or harmful to a patient.
“We rightly give a lot of credence to the autonomy of the patient,” Burke said. “I’ve often wanted to recognize the conscience of the physician in these cases, as well.”
Burke added that there are certain procedures, from a Catholic perspective, that a physician can never participate in, such as euthanasia and assisted suicide. In the difficult cases, the state may have good intentions, but those situations are best handled between the family and health care provider.
Said Burke, “Wouldn’t it be wonderful if most decisions were made between a trusted clinician and a well-meaning patient and family trying to get to the best end of medicine, which is to relieve suffering, reduce burden of disease and prolong life and health?”
Communication Is Key
Father Tadeusz Pacholczyk, the director of education for the National Catholic Bioethics Center, warned against physicians and ethics committees judging difficult futile-care cases on “quality-of-life” criteria, which he said is subjective and places a judgment on people’s lives.
“It is possible that families can request unreasonable treatment. That happens,” Father Pacholczyk told the Register. “The question when that happens is: What’s the proper response? Should the response be that we start passing laws that allow hospitals to basically shut down the dialogue with the family, then unilaterally, on their own, take matters into their own hands and determine the outcome? Is that the best way to do this? Probably not.”
Figuring out the best way to break difficult medical news to patients and families, to explain the recommended course of treatment and to maintain dialogue with them, remains the best way for medical providers to handle and resolve difficult cases, even in situations deemed to be “futile” care.
Said Father Pacholczyk, “That’s the most important question here, ethically as well, so that health care doesn’t become something that is carried out by ethics committees, hospital administrators and government officials.”
Register correspondent Brian Fraga writes from Fall River, Massachusetts.