IE 11 is not supported. For an optimal experience visit our site on another browser.

Chilean girl's plea spotlights cystic fibrosis - and assisted suicide

A Chilean 14-year-old's plea for euthanasia amid cystic fibrosis is pitting new medical hope against fresh, public support for assisted suicide.
Get more newsLiveonNBC News Now

A Chilean 14-year-old' girl's plea for a lethal injection to end her life with cystic fibrosis is pitting new medical hope against public support for assisted suicide, creating a virally charged mixture.

Valentina Maureira's public video, asking her nation's leader to allow her to die via euthanasia, has garnered a visit from Chile's President Michelle Bachelet and online sympathy, including posted comments like: "Let her die with dignity, stop torturing her."

But recent advances in medical care allow many people with cystic fibrosis (CF) to live into their 40s.

In fact, modern treatments such as enzyme and airway therapy make the apparent health of many children and teens with CF indistinguishable from the wellbeing of their peers, doctors say.

“Some kids you probably have seen with cystic fibrosis [but you] wouldn’t know," said Dr. Jonathan Spahr, clinical director of pediatric pulmonary medicine at Children’s Hospital of Pittsburgh.

For a disease that once killed all CF patients while still young, "it’s really kind of nice to have to write a school note … proving they have a chronic disease,” Spahr added.

Medical progress in the fight against CF has indeed undergone "a rapid evolution" during the past 40 years, added Arthur Caplan, founding head of the division of bioethics at NYU Langone Medical Center and frequent NBC News contributor.

"A prominent medical textbook in 1972 said that a baby with CF was ‘born dying.' That view prevailed until the early 1990s," Caplan wrote in an email. "Those with CF were rarely given any aggressive therapies when their lungs failed since doctors and families knew nothing could be done.

"With the advent of better drugs, ventilation, careful infection prevention and the possibility of lung transplants, end-of-life care began to change. Babies with CF lived into their teens and beyond," Caplan wrote. "They now can be involved in decisions about their medical care."

With her video — filmed and posted without her parents' knowledge — Valentina Maureira made a decision about her care. She wants it to end. She earlier watched the same illness kill her 6-year-old brother.

The teen's plea will not be granted. Euthanasia is not legal in Chile. During interviews with journalists in Chile, Maureira's father has said he was heartbroken that his daughter wants death, but added he understands why she feels this way. He is not asking the government to honor her request.

President Bachelet, herself a pediatrician, spent an hour with the young patient at a hospital Saturday. But she has in no way endorsed the teen's wishes, a government spokesperson told reporters.

In the United States, aid-in-dying for minors has never been proposed or discussed as an option, said Caplan, the bioethicist.

"She might, however, be helped to die in Belgium or the Netherlands where suffering even among teenagers is grounds for physician-assisted suicide," Caplan wrote. "One interesting issue is whether the USA would take a girl from Chile for a very expensive lung transplant, given the large number of CF kids already waiting here for one."

That medical procedure may become an option "when someone with CF develops severe lung disease," states the website for the Cystic Fibrosis Foundation.

Nearly 2,800 people with CF have undergone lung transplants since 1990, according to the CF Foundation Patient Registry. About 150 to 200 people with CF receive lung transplants each year.

But even when a person with CF gets healthy lungs via transplant, they still have that disease in the sinus, pancreas, intestines, sweat glands and reproductive tract, according to the Cystic Fibrosis Foundation.

The genetic-based illness affects an estimated 30,000 U.S. children and adults and some 70,000 people globally.

Those with CF struggle to clear a thick mucous from their lungs and sinuses, and that mucous can form blockages. Patients also may experience blocked ducts in the pancreas, which prevents enzymes from digesting food, leading to malnutrition.

As Maureira has expressed, the condition can take a rugged physical and emotional toll.

“[Depression is] extremely common,” said Spahr, the pediatric pulmonary doctor. “To be a teenager and have to reconcile living or not living [is tough].”