(Reuters Health) – Pediatric bioethicists are calling for President Joe Biden to revoke a Trump Administration executive order that restricts physicians’ ability to withhold therapies from extremely premature newborns.
The 2020 Executive Order on Protecting Vulnerable Newborn and Infant Children (https://bit.ly/2Pm3ZuH) “reduces the complex and nuanced discussion of the outcomes of prematurity to a single sentence and single outcome: mortality,” Dr. Jennifer Kett writes in a new Pediatrics perspective.
Even when physicians have no medical treatment to offer babies born before 24 weeks, the order could compel them to intervene in an effort to keep their hearts beating, said Kett, associate medical director for pediatric palliative care at Seattle Children’s Research Institute.
“These are very difficult, nuanced decisions we make in consultation with families,” Kett told Reuters Health in a phone interview. “The worry is that physicians and medical teams may be less willing to consider or counsel families about other challenges of extremely pre-term birth besides survival.”
Measures the order would require could extend a newborn’s painful life with no long-term hope, she said.
“The order’s really focused on survival. There are other factors besides the risk of dying,” she said.
The 2020 order is the most recent in a line of legislative actions dating back to the Baby Doe regulations, inspired by the prolife movement, of the 1980s, the perspective says. The Baby Doe regulations restricted the ability of families and physicians to consider quality of life in decision-making about infant care. (https://bit.ly/3wh2ZbP)
In the decades since Baby Doe, improvements in neonatal treatments have led hospitals to offer interventions to younger and younger newborns. At the same time, clinical practice has increasingly incorporated parents into decisions about the best interests of their premature newborns, and hospital ethics committees have formed to respond to conflicts when they arise.
The Trump Administration order risks undermining the progress, and it portrays the relationship between families and doctors as adversarial, the perspective says.
Dr. Lainie Friedman Ross, a professor of pediatrics and clinical ethicist at the University of Chicago, shares Kett’s concerns about the order.
“For some people, if the child is never going to be able to smile, to interact with other people, to eat by themselves, that might not be a life worth living,” Ross said in a phone interview. “The executive order would state that you have to try to treat everyone because the only outcome that’s important is survival.”
“Death is a horrible outcome, but sometimes there are other outcomes worse than death,” she said.
In 2015, extreme preterm births represented 0.67% of live births and 45% of infant deaths, according to a 2018 Clinics in Perinatology study. (https://bit.ly/3fDFLGS )
The American Academy of Pediatrics has supported decision-making based on the child’s best interests. The academy’s bioethics committee deems medically provided nutrition and hydration “appropriate” when they promise the child benefits that exceed potential burdens.
Ross, who was not one of the paper’s five authors, shared 62 pages of proposed rules written by Alex Azar, Secretary of Health and Human Services, on January 14 – less than a week before he and Trump left office – drafted to explain and implement the executive order.
Because the rules have yet to be adopted, Ross said she believes Biden could revoke the order.
Azar cites as one reason for the order a Texas boy born at 22 weeks gestation in 2017.
In that case, a nurse practitioner told the mother, Sarah Kil, that the medical center’s policy was not to treat an infant born so prematurely.
Kil believed her child had a chance to live because he was relatively heavy for his gestational age. She drove to another hospital about 15 minutes away and delivered her 1.5-pound baby, Kil told the New York Times. (https://nyti.ms/3mgzZwa)
As of last year, he appeared to be thriving.
SOURCE: https://bit.ly/3doEwbS Pediatrics, online April 2, 2021.
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