Joseph Maraachli is 13 months old. He has a neurodegenerative disease, and is reportedly badly brain damaged and suffering from recurrent seizures. He is unable to breathe on his own, and is probably in a coma from which he won't awaken. The condition is genetic, and his sister already died from the same condition when she was 18 months old. But the difference between Joseph and his sister is that she was allowed to die at home under the care of her parents, whereas he is residing in a hospital in London, Ontario, where doctors are threatening to remove him from the respirator and end his life precipitously.
Canadian law would seem to not allow this. It flat out refuses physician-assisted suicide, where a doctor's direct intervention brings about a patient's death. According to statute 241, "Everyone who counsels a person to commit suicide or aids or abets a person to commit suicide, whether suicide ensues or not, is guilty of an indictable offense and liable to imprisonment for a term not exceeding fourteen years."
The parents simply want a tracheotomy done, where a small hole is cut in the neck and a tube inserted, making it easy to manage a patient's secretions. In my experience, the hospital's contention that this is painful and increases the risk of infection are greatly exaggerated. Just the opposite is true; the purpose of the tube is to provide comfort.
The parents had hoped that a hospital in Detroit would agree to accept the baby, but that hasn't happened either, probably because this case is now a political hot potato.
But from a medical point of view, these tubes are placed all the time. Doctors everywhere tend to define our roles in terms of prolonging life and relieving suffering. This is why I find it so unacceptable to learn that doctors at that Ontario hospital are so quick to want to remove the baby from the respirator without the parents' consent.
The baby's father, who has been interviewed several times on Fox News, does not sound unrealistic. He knows his poor child doesn't have long to live. He just wants him to die at home. What parent shouldn't have the right to choose this?
I am also concerned with the role that Canadian provisional government and courts are playing; forcing an administrative consent to end the child's life when the parents won't give it. I believe that this has broader implications; that it ties in with a culture of over-regulation and restriction and rationing of care that extends from the government on down to the doctors. All too often, government mandates -- overzealous to cut corners -- are insensitive to the needs of particular patients and situations.
We seem to be heading in the same direction here in the U.S., where Accountable Care Organizations and other regulatory bodies and committees will be ruling on what is cost effective care and what isn't. Will there come a time here soon when the plug is pulled too quickly, and doctors are afraid to resist?
Marc Siegel, MD is an internist in New York and a Fox News Medical Contributor.