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The aid-in-dying movement may be enjoying a boost from the purposeful death of beautiful 29-year-old Brittany Maynard, but another case across the ocean is emerging as "political kryptonite" — a British mom’s court-backed decision to end her disabled child’s life.
Charlotte Fitzmaurice chose in August to remove hydration from her 12-year-old daughter to halt “horrific” pain for a girl born with severe defects, Fitzmaurice told NBC News partner ITV. Nancy was unable to eat, drink or comprehend her plight. She died in August.
The mother’s recent media interviews are bringing the situation to light only now.
Her euthanasia — a U.K. precedent because Nancy still was able to breathe and was not terminal — would violate all U.S. death-with-dignity laws and rulings. In five states, doctors can prescribe lethal drugs only to adults who are mentally competent and diagnosed with terminal illnesses. Other states allow no aid in dying.
But the tale of Charlotte and Nancy Fitzmaurice is precisely the sort of scenario that ignited harsh warnings from the critics of Maynard, 29, who carried out a plan Nov. 1 to end her life before terminal brain cancer claimed her naturally.
“Many groups pushing for more end of life options find these kinds of cases to be political kryptonite and want to be able to say ‘that's totally different, not the thing we are talking about,’" said Glenn Cohen, director of the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School.
“My own sense is that Compassion and Choices and other pro-assisted-suicide legislation groups will only push for (domestic) legislation to govern cases like these once political victories are more secure in the more typical case they are interested in,” Cohen said.
Indeed, Compassion & Choices, a nonprofit with whom Maynard teamed in her final weeks to expand end-of-life choices for more Americans, declined to comment to NBC News on the actions of the British mom and court.
Fitzmaurice also declined to speak with NBC News. She is doing only paid interviews to raise money for a charity fund in her daughter’s name, said Paisley Gilmour, features editor at Talk to the Press, a U.K. agency that helps people sell their stories to newspapers and magazines.
But in an interview with ITV, Fitzmaurice said that once the court allowed her to end hydration, she told her daughter: “I’m so sorry. I kept saying to her, ‘I’m so sorry. I’m so sorry I had to do this,’ and (that) I loved her.”
She acknowledged hearing the views of those who oppose her decision, saying: “I respect that completely. But I just say to them to see the pain and agony and fear in her eyes and tell me what I did was wrong then.”
Some U.S. medical ethicists allow there is room for discussion on what Fitzmaurice ultimately chose for her daughter, who was not expected to live past age 4.
Such decisions, however should be decided by medical-ethics committees, not made by parents in private, said Arthur Caplan, founding head of the division of bioethics at NYU Langone Medical Center and a contributor to NBC News. He has asserted that Maynard’s planned death was an ethical choice.
Because Nancy was enduring tremendous pain and was cognitively prevented from grasping the meaning of her pain, “it might be” ethically proper to remove life-sustaining measures if such steps are deemed to be the sole way to control that pain, Caplan said. But instead of removing hydration, he would have leaned toward increasing pain medications despite increased the risks to Nancy’s breathing.
“There is no interest (in America) in trying to extend the practice to children. None,” Caplan said. “Critics may point to it … but European or even Canadian end-of-life care controversies just don’t play any role in state-based debates for or against legalization.”
At Harvard, Cohen acknowledged that risk of devaluing life — often raised by disability advocates — is “much greater” when parents are making decisions about their child’s quality of life, and claiming death is preferable.
“That doesn't mean that these decisions should be necessarily blocked by law, but it should make us more careful,” Cohen said.
Disability advocate Joni Eareckson Tada — who openly disagreed with Maynard’s choice — said the decision by Fitzmaurice represents the exact “slippery slope” she fears when it comes to social and legal campaigns on aid in dying.
“With the (U.K.) ruling, the door for the dehumanization of the disabled has now just been just totally swung wide open,” said Tada, whose advocacy group is based near Los Angeles. She became a quadriplegic in a 1967 diving accident. “Her personhood, her rights, her volition as a human being all have been erased.
“It sends a signal, it creates a dire concern for millions of Americans with significant disabilities whose families are legal guardians (that they) may think their disabled child’s life is not worth living, that they have no quality of life,” Eareckson Tada said.
“As a severe quadriplegic, this sends chills up and down my spine because I’m a friend to many special needs parents like Charlotte, and I can attest that many of their children have value, they have meaning and they have strengthened the character and the cords of family unity. That’s what I think Americans, as a whole, need to grasp from this U.K. decision.”