Washington-based autism group warns of “assumptions that our lives are not worth living.”
In a decision bound to inflame Britain’s “right to die” debate, a High Court judge ruled that a 12-year-old girl could be deprived of fluids so she would die quickly rather than suffer unnecessarily.
Setting a legal precedent, the August ruling, revealed only this past week, is the first time the UK has seen such a “mercy killing” for a child who could breathe independently, neither dependent on life support nor suffering from a terminal illness.
Two days before Nancy Fitzmaurice was born in July 2002, her mother, Charlotte Fitzmaurice, was told that as she had had untreated Group B Streptococcus during pregnancy her child was likely to be born severely ill. Nancy was born with hydrocephalus, meningitis, and septicemia, and at ten days old had a shunt fitted in her brain. After six months she was diagnosed with epilepsy and was later diagnosed with further neurological disorders.
Fitzmaurice, 36, who gave up her job as a nurse to care for her daughter full-time, medicating and feeding Nancy through a tube, told the Mirror that “simple things like birds singing and hearing children play would put the most beautiful smile on her face.”
Nancy contracted an infection after a May 2012 operation to remove kidney stones, and a combination of morphine and ketamine proved inadequate to relieve her pain. “She was screaming and writhing in agony 24 hours a day,” Fitzmaurice said, “Not being able to ease her suffering was too much to bear. She wasn’t my angelic child any more, she was a shell. I wanted beautiful memories of Nancy, not soul-crushing ones. After a whole weekend of her screaming in agony, I decided I wasn’t going to watch my little girl suffer any more.”
Nancy’s parents, who were then separated, though they have since reunited, met with the ethics board at Great Ormond Street Hospital and persuaded doctors to stop feeding their daughter. The doctors, however, said it would be illegal to withdraw all fluids, and that without food but with fluids it could take months for Nancy to die. The hospital agreed to argue before the High Court of Justice that all fluids should be withdrawn so Nancy would die more quickly.
On August 7, Justice Eleanor King read a 324-word statement from Fitzmaurice, saying, “My daughter is no longer my daughter, she is now merely just a shell. The light from her eyes is now gone and is replaced with fear and a longing to be at peace. Today I am appealing to you for Nancy as I truly believe she has endured enough. For me to say that breaks my heart. But I have to say it.”
Granting the hospital’s request, Justice King said, “The love, devotion and competence of Nancy’s mother are apparent,” and that in Nancy’s “own closed world she has had some quality of life. Sadly that is not the case now. Please can you tell Nancy’s mother I have great admiration for her.”
Nancy died 14 days later after fluids had been withdrawn, Fitzmaurice saying that although that was the right thing to do, she will never forgive herself. Describing August 21, Nancy’s last day, as the hardest of her life, she told the Mirror that “watching my daughter suffer for days while they cut off her fluids was unbearable. She went in pain. It will stay with me forever.”
Nancy’s father, David Wise, said, “It was heartbreaking to see my daughter like that. Nancy never spoke, so we never knew how she felt. She couldn’t tell us what she was going through and it was the hardest decision we’ve ever made.”
Nancy’s story has hitherto been neglected by the BBC and Britain’s broadsheet press, perhaps because, “it’s so dreadfully sad, and for our culture not particularly controversial as it didn’t involve direct killing,” according to Peter D. Williams, executive officer of London-based charity Right to Life.
“Most people don’t understand the nature of someone dying of thirst in cases like this,” Williams told Aleteia, “and as she was apparently in terrible pain anyway, so most people would reason that ending her pain quickly was the ‘obvious’ thing to do.”
Even neglected by so many British media outlets, the story became public knowledge this week as Fitzmaurice and Wise told the Mirror how they believe the law should be changed so decisions to end a child’s life can be made by parents and doctors together, without needing to plead a case before a judge.
Dr. Andrew Fergusson, chairman of anti-euthanasia advisory group Care Not Killing, disagrees, saying that, “Cases of young people dying are always tragic — but we have to accept the natural end of life can occur at an early age.” Fergusson believes that patients’ families must be heard and supported, and that “when someone is dying, it may be appropriate and ethical to withdraw treatment which is no longer of overall benefit,” but insists that, “it is never ethical to speed up the process of dying by any intervention which has the primary intention to end life.”
Pointing out that the law exists to protect everyone, he said that “Weakening laws that protect the sick, disabled and elderly would put vulnerable people at risk. And what starts as a law to help people can be used to terminate disabled babies as happened in Holland and Belgium, the only EU states with legal euthanasia. This is why attempts to change the law have been voted down by Parliament many times. The current law does not need changing.”
George Pitcher, author of A Time To Live: The Case Against Assisted Suicide and Euthanasia, shares Fergusson’s view, telling Aleteia that while Nancy’s case was “very difficult,” and “very sad,” difficult cases make bad law.
“I think we have a situation,” he said, “where individual cases are addressed on merit — and that must be right, as it allows the law to be applied with compassion. The other way around is altogether more dangerous: A situation in which euthanasia is the default position and, therefore, some lives are deemed more valuable than others.”
The Autistic Self Advocacy Network, a Washington-based lobby group, issued a statement on Nancy’s death on Tuesday, saying it was “profoundly concerned” by what had happened, and that “When parents and physicians have the ability to authorize the killing of disabled children, we see serious abuses.”
“Euthanasia of people with disabilities is an extremely dangerous and wholly inappropriate solution to inadequate pain management,” it said. “In cases where painkillers are insufficient, a number of alternatives for pain management exist. A policy of euthanasia targets vulnerable people, particularly when it is applied to children. People with disabilities who experience chronic pain should have [the] same access as others to life-sustaining medical treatment. “
Urging advocates and legislators to oppose legal changes that would facilitate the killing or withholding of life-sustaining care from disabled children and adults, ASAN said that, “Inaccurate and dangerous assumptions that our lives are not worth living have claimed too many lives. People with disabilities deserve better.”
Greg Daly covers the U.K. and Ireland for Aleteia.
