For the second time in recent weeks the controversial Baby Joseph case has erupted across the international boundary from Canada into the United States.
A Washington, D.C., Christian law group is helping to find medical treatment for the 13-month-old baby in the U.S.
Jay Sekulow, chief counsel of the American Center for Law and Justice, said, “This has been a tragic case where the parents desire only to receive proper family-centered care and medical attention that will allow Baby Joseph to live out his final days at home naturally with his family.”
Ironically, the ACLJ advertises a DVD titled “The Dangers of Radical Islam” on its website, while Baby Joseph’s family is devout Muslim. Indeed, one of the family’s disputes with the London (Ontario) Health Sciences Center is over Moe Maraachli’s desire to pray privately with his son. But staff won’t let that happen because their disagreement over Joseph’s fate has become so bitter and high profile.
The hospital precipitated the standoff last month when it sought the family’s permission to remove Joseph from his ventilator. This would have led to suffocation due to his progressive neurodegenerative disease, which his doctors say is fatal anyway.
The Maraachlis want to bring Joseph home to die, but to do so he must be removed from his ventilator and given a tracheostomy.
The hospital has refused to do a tracheostomy, insisting “it is not a palliative procedure. It is an invasive procedure in which a device is installed in a hole cut in the throat.”
For its part, the family refused permission to disconnect, then went public over it, then viral, with a save-baby-joseph Facebook page, a petition site by the same name and YouTube videos showing the baby, who the hospital claimed was vegetative, responding to tickling.
The story crossed the border when a Detroit hospital initially agreed to examine Joseph but then reneged. Fox News jumped on the story anyway, and in the resulting furor the staff at London Health Sciences Centre was subjected to death threats and accusations of murder and euthanasia.
The hospital has secured favorable rulings from both a judge and the Ontario Consent and Capacity Board, but the family has nonetheless gotten the hospital to hold off. Now the latter is insisting it was always willing to let Joseph go home — without a tracheostomy.
Family spokesman Sam Sansalone says this simply is untrue. “No one in the family knew anything about an offer to let him come home until they read about it in the news media.”
One of Sansalone’s own daughters is cognitively disabled, and he has championed the cause of families like the Maraachlis for a decade as they fight medical professionals for control of their loved ones’ care.
Sansalone has studied medical outcomes in the U.S. and Canada and says his data suggests, disturbingly, that, “Someone with my daughter’s disabilities is four to 10 times likelier to survive in the U.S.”
In Canada generally, he says, there is a trend “to strip the human rights of the cognitively disabled infant. It is spreading like a disease, putting at risk anyone who isn’t contributing much to the GDP.”
Sansalone isn’t willing to attribute the higher death rate for children like his daughter Katya and Joseph to public health systems per se, but he does believe the way Canada’s system works is that “the same people who are making these life and-death decisions are managing the fiscal envelope. They are cutting costs by limiting treatment to the most vulnerable, the cognitively disabled infant and the elderly.”
And when the same provincial government that sets the health care budget also runs the courts, the police and the judiciary, he says, “There is a lack of independent accountability. This is a test case for human rights.”
Alex Schadendberg, executive director of the Ontario-based Euthanasia Prevention Coalition, says the Baby Joseph case illustrates the quandary families find themselves in when they disagree with hospitals and doctors over treatment of family members. “This is a very specialized area of law, and only about six lawyers here are expert in it. Four of them will only work for hospitals. Most people don’t understand you need a barracuda to fight a barracuda and so they hire a general lawyer or, in the Baby Joseph case, they started with a legal aid lawyer.”
In 1993, Ontario created the Consent and Capacity Board to resolve family-hospital disputes, but according to Schadenberg, “It’s only speeded things up, which is good, but it hasn’t shifted the serious disadvantage the family is under.”
Most decisions have gone the hospitals’ way, he says, and the burden of proof has shifted dangerously. Officially, the board decides on the basis of what is in the best interest of the patient, says Schadenberg. But in fact, the board assumes that medical professionals know better. “The onus is on the family to prove the doctor or hospital is unreasonable.”
The family got its way in one recent decision, says Schadenberg, because it found a doctor who was willing to provide the desired treatment.
That is now the route the Maraachlis are following, hoping the ACLJ can find an American institution that will take over Joseph’s care, perform the tracheostomy and allow the child to die at home.
Editor’s note: With corrections posted 10am, March 9.
Register correspondent Steve Weatherbe writes from Victoria, British Columbia.