Moe Maraachli holds up a picture of baby Joseph - (Craig Glover / THE CANADIAN PRESS)

Joseph Maraachli is a 13 month old child who, at the time of writing, is in London on life support. He is dying and his parents want him to die at home with them in Windsor. This would require a tracheotomy, which Doctors at the London Health Sciences Center refused to perform saying that it was too risky. They insisted that baby Joseph’s breathing tube should be removed and he be allowed to die. The family does not want him to die this way insisting that he will choke from an inability to breathe. The Consent and Capacity Board of Ontario, an independent body, agreed with the doctor’s recommendation and ruled that Joseph’s parents must consent to the tube removal. The family appealed and Ontario Superior Court Justice Helen Rady upheld their decision and ordered that the family consent to removing Joseph’s breathing tube by Monday February 21. In cruel irony that was Family Day. In 2007 when premier McGuinty declared the third Monday in February to be Family Day he said that “There is nothing more valuable to families than time together.” How much weightier those words are to the Maraachli family who lived last weekend thinking that it could be their last with their son. It was ordered that they should consent to cut short their ‘time together’ with Joseph. The Maraachli family defied the order, retained new counsel and are now working with the London health Science Center to try to move Joseph to a hospital in Detroit where he might be closer to home.

The question here is not whether baby Joseph can be saved. He is going to die, and far too soon, because of his condition. His family are told that Joseph’s brain is losing function, his reflexes and responses to stimulation are abnormal, he can’t breathe on his own or swallow. Doctors insist that he is in a vegetative state. He will die. The question here is how we deal with end of life care. How will we as a progressive and civil society care for the dying? We know that Joseph’s life cannot be saved. But what does dying well look like for this child and his family? These are decisions that people are facing in this country daily whether the dying is a 13 month old or a 93-year-old and they are very tough questions.

Our medical science has provided us with miracles beyond our comprehension. Many of us enjoy the company of loved ones today because of the marvellous work of medical science. But along with that fine medicine and machinery comes a ball of wax we call medical ethics. That field studies all kinds of questions. When does it become appropriate to say that it is time for one to die? What is a sensible quality of life? Who decides to terminate care? To be clear, the order from the courts last week was not that Joseph’s breathing tube be removed on Monday at 10 am as some have reported. The court order was that the family ‘must consent to have the breathing tube removed.’ That makes the ethical waters even murkier. What would you do if a court ordered you to take away the child’s means of breathing? I have heard it expressed that this should be boiled this down to dollars and cents, insisting that the child has no reasonable expectation of life or quality thereof, and he should be allowed to die now as it will cost less to the taxpayer. Easy to say when it is not your child, your family, or your friends. How much is a life worth? Who gets to decide the value of a life? It is an impossible situation in which to place a parent. My prayers are with Moe Maraachli and his family.

They now wait to find out what others will allow them to do. All they want is to take their baby home to be with them and his older brother for his last days.

Holding a dying child is heartbreaking. It takes a lot of strength and love to do so. The Maraachli have already done so with the loss of a daughter eight years ago who died from similar problems. I am glad that on Family Day Joseph did not die and that they were afforded more ‘valuable time together as a family.’  I am glad that his family did not agree to consent to something they so clearly did not want to consent to. My prayer is that this family is given a way to allow Joseph to die well.  I hope that by the time you read this, doctors, whether in Detroit or in London, are working to find a way to give Joseph the tracheotomy necessary for him to go home and die at peace in his parent’s arms.