Fate of Dying Baby Now Rests with Public Guardian

The fate of a sick baby will likely be decided by an Ontario Public Guardian, as parents and hospital officials continue to disagree over the removal of a ventilator that has been breathing for the little boy since October. The 13-month-old "baby Joseph" has a degenerative neurological condition and is in a persistent vegetative state. Doctors say he will never improve. His parents have asked the hospital to perform a tracheotomy to help the child breathe, so he can return home to live out his remaining days among loved ones. Lawyers have stepped in to help the parents plead their case, and there is a possibility the child will be transferred to a hospital in Michigan where the procedure can be performed.

Dying with Dignity
There is no question baby Joseph is dying. An older sister who had the same condition passed away eight years ago. A panel of doctors says his older sibling was "reluctantly" given a tracheotomy and released into her parents' care with a ventilator to breathe for her, when she reached this state. She lived another six months, before dying at home. The parents, Moe Maraachli and Sana Nader, have asked the same care be given to Joseph.

While the family sees tracheotomy as a step towards dying a peaceful and dignified death at home, doctors at the London Health Sciences Centre say their plans for the child are "not in any way realistic," and claim the parents are "blinded by their obvious love" for Joseph. If hospital officials have made plans to ensure the baby's death is a peaceful one, it would appear the family remains unconvinced. The parents say they worry their child will die a painful death by choking if they allow his breathing tube to be removed. Joseph no longer has a gag reflex or the ability to swallow.

Balance of Power Shifting Towards Doctors
The London hospital issued a statement in light of reports about the potential Michigan transfer, saying they would continue to offer their support to Joseph's parents. "Our priority is to ensure that all patients receive compassionate, dignified and respectful care," said spokesperson Laurie Gould. The family's lawyer Mark Handelman, who was himself a member of the medical ethics board from 1998 to 2008, says the baby Joseph case demonstrates a shift in the balance of power, with doctors now taking precedence over the wishes of parents for their children's end of life care.

Poor Prognosis for Vegetative State
A vegetative state is a type of coma, often one in which the patient appears to transition from waking to sleeping. Family may sometimes interpret wakefulness and involuntary eye movements, yawning, or response to touch as a sign of improvement, but prognosis is poor if the condition lasts for a prolonged period of time. Many individuals in a persistent vegetative state will die of infections such as pneumonia without ever regaining normal consciousness. Quality of life is an important issue, as is the question of who should make decisions about end of life, or palliative, care. In recent decades there has been a growing interest in hospice care and support for dying at home, as an alternative to a hospital death.

Sources:
"Dying Ont. baby's fate up to Public Guardian." CBC News

Jonathan Sher and Joe Belanger, "Talks underway to move baby Joseph." London Free Press

Jane Sims, "Judge orders baby off life-support." QMI

"Vegetative state." Merck Manuals