March 2, 2011— -- Two weeks ago, doctors advised Moe and Nader Maraachli that their baby's degenerative disease was so bad that no treatment would cure his persistent vegetative state. Health care professionals presented Baby Joseph's parents with a consent form that would allow doctors to take him off life support.
But the Maraachlis refused to sign the waiver.
Today, 13-month-old Baby Joseph's life literally continues to be in negotiations, underscoring the sensitive balance many parents may face between keeping their babies alive as long as possible and pouring money and medical resources into a losing battle for their child's life.
The case was brought to the Consent and Capacity Board, an independent body created by the government of Ontario, and then a supreme court judge. Both entities ruled that Baby Joseph's breathing tube should be removed.
Joseph's parents have appealed both decisions, and the debate has incited strong emotions on both sides of the platform.
"From the beginning, the point of view of the family has been, 'If my child is dying, at least let us bring our child home,'" said Alex Schadenberg, executive director of the Euthanasia Prevention Coalition, who has acted as a spokesman for the Maraachli family.
"They weren't asking for extraordinary medical treatment or for the government to pay for a ventilator with an in-home nurse."
The Maraachlis requested that doctors perform a tracheotomy, so that Baby Joseph's family could take him home and take care of him in his final days. While other babies in similar situations have been sent home with a breathing tube and ventilator through the Canadian health care system, Schadenberg said the family was not offered this option, and Joseph's parents did not know to ask.
But a statement given Monday from London Health Sciences Centre where Baby Joseph has been treated since October, 2010, said the contrary: "The LHSC position is consistent with the treatment plan approved by Ontario's Consent and Capacity Board as being in the best interest of Baby Joseph. It involves transferring home, on a breathing machine, and then placing him the arms of his family before withdrawing the machine."
The statement goes on to say: "The transfer would not involve performing a tracheotomy, which is not a palliative procedure. It is an invasive procedure in which a device is installed in a hole cut in the throat. It is frequently indicated for patients who require a long-term breathing machine. This is not, unfortunately, the case with Baby Joseph, because he has a progressive neurodegenerative disease that is fatal."
The controversy has sparked heated debate throughout North America, and the hospital has even reportedly received several threats from people in the United States and Canada. Support for the Maraachlis has swelled in recent days, and people have come together in at least two different Facebook groups to stand behind the family.
One group, Save Baby Joseph, has more than 13,000 members, and another, Save Baby Joseph Maraachli, has more than 1,300 members.
Some have even argued that the government overriding a parents' wishes would not happen in the United States because Americans personally pay for medical expenses, while Canada has a publicly funded medical system.
But Schadenberg said the main question here is: who really has the right to decide on this baby's fate?
Tina Jones has had first-hand experience with such an excruciating decision.
Doctors told Jones that her daughter, Kassandra, would likely die soon after birth. But Baby Kassie, born in 2000, beat the doctors' predictions and survived. Despite being born with cytomegalovirus, a virus that can cause life-threatening disease in people with weakened immune systems, she has survived for more than a decade.
After coming down with several respiratory illnesses, Baby Kassie went into respiratory failure. Doctors didn't believe she would survive the infections, but Jones and her family requested that surgeons perform a tracheotomy.
"We've always looked at quality of life instead of quantity and we never wanted to go for a tracheotomy or ventilator," said Jones from Tremble County, Ohio. "But then we looked at the big picture after talking to our doctors and knew that the tracheotomy would take away a lot of her suffering."
Kassandra is now 11 years old and lives comfortably at home, her mother said.
While Jones and Kassie's doctors talked at length about options, the physicians never disagreed with the ultimate decision to keep Kassie on life support.
"I don't think such a decision should be anyone's but the parents," Jones said. "This has given us more time with Kassie. We don't know when she'll pass, but even if it's just a few more months, we're going to enjoy these few more months."
Misty McMahan, a mother who also had to make a difficult decision about her baby's life, also said end-of-life care should ultimately be up to the family. But unlike Jones, McMahan made an equally harrowing decision of fate for her child.
After McMahan's son Nathaniel was born with Menkes syndrome, a genetic defect that makes it difficult for the brain and other parts of the body to get enough copper, doctors offered surgery after surgery and treatment after treatment.
Baby Nathaniel suffered from seizures, stroke, ear infections and scoliosis during his short life. He continued to come down with respiratory problems and doctors offered to perform a tracheotomy due to his severe breathing problems.
But, after much discussion with her husband and family, the family declined the tracheotomy and any further surgeries.
"We knew the diagnosis was poor and we didn't know how long we'd have with him," McMahan said. "But we did know that we didn't want Nathaniel to die, and say, 'We didn't make the right decision.'"
Two days after the McMahans declined, doctors told the family that Nathaniel's system was shutting down.
"We're glad we made that decision so he was comfortable," she said. "The family got to see him on his last days, and he decided to take his last breath in front of all of us. It was the most peaceful thing we'd ever seen."
Dr. Sarah Friebert, a pediatrician who specializes in pediatric palliative care in Akron Children's Hospital in Ohio, supported both Jones and McMahan with their babies' end-of-life decisions. Friebert was not up-to-date on the details of Baby Joseph's case, but she said she has seen this sort of conflict before.
"Doctors must do diligence to make sure they are exhausting as many possible avenues to get to that middle point," Friebert said. "They know that the parents are going to have to live with those consequences for a long time. "
Friebert went on to say that doctors almost always try to adhere to parents' requests, unless there is clear evidence that they are not making a decision in the best interest of the child.
"The process involves bringing in other people to support the family with any sort of emotional, religious or spiritual issues that we need to understand better," Friebert said. "It often feels like an impossible choice because death is such a final option and parents are understandably going to try everything to avoid that."
Dr. Ian R. Holzman, vice chair of clinical affairs and chief of the division of newborn medicine at Mount Sinai School of Medicine in New York, said the story of Baby Joseph highlights the complexity of decision making around newborns that seem to have an unclear future.
In cases where severely ill newborns are not likely to ever regain consciousness, Holzman said "parental requests for aggressive treatment, surgery [or] dialysis are most often rejected as inappropriate for the patient and we would contest those requests through the appropriate channels."
"On the other hand, the idea of a tracheotomy and feeding tube are considered benign enough that most of us would go along with the parents' wishes if it meant the child might be able to go home and be with his or her family," continued Holzman.
But the process gets even more complex with infants and young children who cannot form values and preferences about their desires regarding end-of-life treatment, said Dr. Art Caplan, Emanuel and Robert Hart director of the Center of Bioethics at the University of Pennsylvania.
Felicia Cohn, Ph.D., director of medical ethics at the University of California at Irvine, said that she has been involved in similar conflicts, and an ethical process must be under way to assist both parties.
If conflict arises, a clinical ethicist or an ethics committee may assist in the decision making process. The court is a last resort and is a sign of persistent conflict.
"These cases will continue to arise as long as we value a diversity of belief systems and opinions," Cohn said. "We struggle with balancing the different values involved. Among the goals of medicine are benefiting the patient, avoiding harms to patients, respecting the autonomy of the patient and decision maker and distributing health care resources justly."