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Conscience, End of Life, Parental Involvement

Alta Fixsler, an infant prisoner of conscience

Alta Fixsler, a two-year-old infant, is being held against her parents’ will by officials of the British National Health Service (NHS) at the Royal Manchester Children’s Hospital. Alta is completely helpless, her breathing assisted by a ventilator and her body sustained by food and water through a feeding tube. Alta is at the mercy of her doctors, who insist that the best thing for her is just to die. If NHS and the courts get their way, she will, and soon. 

Alta’s father, Abraham Fixsler, is an American citizen and a devout Hasidic Jew from New York. Her mother is Hungarian, and also a devout Hasidic Jew. Alta, now two years old, suffered a hypoxic brain injury at birth and has been in the hospital since then. The Fixslers’ Jewish faith prohibits ending Alta’s life by denying her life support – a conviction confirmed by the Court of the Chief Rabbi of Great Britain. The Fixslers want to take their baby to a hospital in the United States or Israel, where healthcare institutions say they would take over Alta’s care if she were released to them. Despite the deeply held religious convictions of her parents, and the ready availability of other caregivers, the National Health Service stubbornly refuses to release her, believing it knows better what is in her “best interests.” The hospital decided that Alta is “experiencing pain” and has no quality of life. The NHS is supported by the medical establishment and the usual gaggle of “ethicists.” One of them, Dominic Wilkinson, Director of Medical Ethics at Oxford University, told BBC Radio that “to keep [Alta] alive on machines in a state of consistent pain without any prospect of improvement, with just the prospect of continuing in what [doctors] describe as a state of perpetual silence and darkness … is to harm her.”  

Instead of respecting her parents’ wishes or the opinions of other experts who insist Alta is not suffering and that she could live for years in the love of her family, her doctors went to court for the right to superintend her death. So far, the British courts have backed up the National Health Service doctors to the hilt, concluding that they also know better than Alta’s parents what’s good for her. The Supreme Court of the United Kingdom and the European Court of Human Rights have declined to hear her appeal. In the process, the courts have made startling and outrageous pronouncements, including refusing to “assume” that Alta would share her parents’ Orthodox faith while purporting to place themselves “in her shoes” to discern her “best interests”.  

Thus, instead of assessing Alta’s “best interests” from the point of view of a two-year-old Hasidic Jewish girl whose family’s faith values life as a gift from God not to be cavalierly cast aside, the courts have insisted on substituting their own judgments and trusting the controverted opinions of NHS doctors that offer only a hopeless outlook to a faith-filled family. 

The National Health Service insists that British medical bureaucrats and judges must decide for themselves what’s best for Alta Fixler, not her parents. This isn’t a case where parents insist on continued medical treatment for a child even though no other options are available. Hospitals in Jerusalem and New Jersey stand ready, willing, and able to take Alta under their care at no cost to the British health system—even offering to care for her at no cost to her family, in the case of a New Jersey hospital. Passport and visa arrangements have already been made in the case of both options. The only thing that stands between baby Alta and freedom—and a chance to live—is a nationalized health system that is accountable to no one. The NHS has been deaf to pleas on Alta’s behalf from the Prime Minister of Israel, the Chief Rabbi of Israel, members of the British Parliament, and numerous members of the United States Congress from both parties, including Senate Majority Leader Chuck Schumer, himself a Jewish man. NHS’s arrogance and insensitivity know no bounds. Last week, the NHS threatened to disconnect Alta’s life support on Saturday morning, August 7th, the Fixslers’ Sabbath day.  

Along with other U.S. and international lawyers and advocates, I have fought Britain’s National Health Service for the lives of its most vulnerable patients over and over again. Thousands of British, American, and international legal experts, medical ethicists, and government leaders have sought release from NHS captivity for Charlie Gard, Alfie Evans, and now little Alta Fixsler. We’ve been down this road too many times, and the NHS seems to become more entrenched and insensitive with each episode.  

Make no mistake about it: Alta Fixsler is a prisoner of conscience – trapped in a bureaucratic health system that has no regard for her family’s deep faith and no respect for her life. People of good conscience cannot fathom how a child could be held against her parents’ wishes when treatment alternatives offering life and hope are readily available. The National Health Service’s conduct would be criminal in the United States, a form of child kidnapping. But the British version of “substituted judgment” is coming to America, as hospitals across the country have begun to oppose treatment requests of families on behalf of their elder adult and infant patients. Inevitably, they play to the emotions of courts and the public, arguing that their “consciences” cannot stand  to see their patients suffer—as if the value of their patients’ lives and the hope of recovery should be determined by their own standards, not those of the family members who know and love them. The fight for Alta Fixsler’s life is a battle for every one of us, a fight for the right to self-determination in accordance with one’s conscience. As fundamental as that right is, it is a fight every generation must win anew.