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 The hospital agreed to argue before the High Court of Justice that all fluids should be withdrawn so Nancy would die more quickly.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.