Bethany Abigail Hughes, the Calgary teenager whose fight against government-imposed blood transfusions landed her in court and divided her family, died yesterday after a seven-month battle with leukemia. She was 17.
Ms. Hughes came to be known as an assortment of things. Funny. A Jehovah's Witness. Bookish. A Maple Leafs hockey fanatic.
Of all the labels that defined her, she probably would have preferred legal crusader for children's rights.
A few days before she died, she said she hoped her case -- about the right to choose treatment -- would help prevent other young women from enduring what she had gone through: about 38 blood transfusions but no decent prospect for recovery, and being bounced from court date to court date as well.
"The case caught the attention of the Canadian public on a very sensitive issue," said Shane Brady, lawyer for Ms. Hughes's mother. "As time went on and as Bethany continued to express herself in the same way, many people realized they may not have agreed with the choice, but nevertheless realized that it's her choice -- and it should be respected."
After seeking medical attention for flu-like symptoms, the Grade 11 student, originally from Belleville, Ont., was diagnosed in February with acute myeloid leukemia. Prescribed treatment included chemotherapy and blood transfusions.
Her refusal to accept blood products was backed by her mother, Arliss Hughes, her sisters Athalia Larson and Cassandra Hughes, and by their church. The Jehovah's Witness faith prohibits blood transfusions.
The Alberta government argued successfully in several courts that Ms. Hughes was not mature enough to make decisions about treatment.
Lawrence Hughes, her father, agreed, and was shunned by his church and his family. His wife and daughter moved out of the family home and he has initiated divorce proceedings.
In July, during his daughter's most recent court date, he pleaded with the provincial court judge to extend provincial guardianship to ensure further transfusions.
Despite his daughter's dwindling chances of survival -- when her illness was diagnosed, those chances were put at 65 per cent and by the July court date her doctors had downgraded them to 10 per cent -- Mr. Hughes's mantra remained the same.
The court also heard from Ms. Hughes. She was then soft-spoken and pale, with thinning hair.
"My case is about rights," she said. "I am almost 17 and I can't make a decision that a person one year older can make and that upsets me."
The judge dismissed the province's application to extend guardianship over the teenager, not because her argument was persuasive but because blood transfusions were no longer a required part of her medical care.
Palliative care had become the best remaining treatment option, her doctors suggested.
Mrs. Hughes moved her daughter to an Edmonton hospital where she was treated without transfusions and as a day patient.
"I think Bethany rallied to some degree because she was in control of her life again. It really renewed her spirit to fight her disease," Mr. Brady said.
A provincial court judge is scheduled to hear the case's arguments based on the Charter of Rights and Freedoms next week.