This is a sad and, at the same time, a beautiful story. It concerns a child struggling for life, medical decisions that seemed to look at life in rather a cold unemotional manner, and the increasingly debated problem of euthanasia.
Baby Joseph was born with a severe neurological condition that left him struggling for life when he was just one year old. Last October, he was taken to a prestigious hospital in southern Ontario, Canada where he was put on a ventilator. He was diagnosed with a fatal condition that left him in a vegetative state. His physicians determined he had no hope of recovery and recommended removing his breathing and feeding tubes.
The child’s family said removal of the ventilator would cause Joseph to choke painfully to death and asked doctors to perform a tracheotomy that would allow him to die more comfortably and slowly. The hospital countered by declaring that the procedure was not medically necessary because it would not treat Joseph’s condition and refused to authorise it. Was Joseph being looked at as just another item on the hospital list? The hospital went further. It asked the courts to allow the doctors to remove the breathing tube.
Joseph’s parents defied the court and launched a legal battle to prevent the painful death of their baby son. They again asked physicians to perform a tracheotomy, which would involve cutting a hole in their son’s throat to create an airway. The hospital refused to do the surgery, saying it was an invasive procedure designed for patients who had a chance of surviving. That is how life is valued in some highly civilised places nowadays. In poverty stricken Ethiopia, where most of the population lives in rural areas, handfuls of newly recruited midwives travel huge distances to help mothers give birth safely. What I saw on Al Jazeera was humanity trying to do its best for humanity in the most awful conditions. Births were not taking place in prestigious hospitals but in huts open to the sky; and many more mothers were surviving. It is not good living that brings out the best in humanity.
Faced with this professional diktat and with their backs to the wall, Joseph’s parents asked the help of a group that bills itself as the largest Catholic pro-life organisation in the US. The Rev. Frank Pavone of Priests for Life saw this as a case of saving a child from a bureaucracy gone mad. He also saw it in terms of a broader debate: should doctors or the family members decide when and how a terminally ill patient dies? Father Pavone collected $150,000 and removed baby Joseph to a Catholic hospital in St Louis, USA. At the Cardinal Glennon Children Medical Centre, Catholic values play a role in medical decisions. It is worth noting that several other US hospitals had declined to treat the Ontario baby. Once upon a time, long, long ago, doctors used to take an oath that they would do anything possible to save life.
Wilfrid Laurier University’s medical ethics professor Melany Banks was against the hospital accepting the baby. In her opinion, religious politics and the emotions of grieving parents had overtaken the boy’s best interests. She stated that the priority was the alleviation of pain not performing unnecessary surgeries. I ask, when those “unnecessary” surgeries give the patient a certain amount of relief should they be turned down?
At the Cardinal Glennon Hospital, Joseph received a successful tracheotomy on the 21 March. An opening into Joseph’s windpipe through an incision in his neck kept his airway free from secretions that would otherwise have caused him to choke. The Chief of Paediatrics at the hospital said that Joseph had responded well to the procedure, which gave him, increased mobility and comfort. In fact Joseph did so well that doctors saw no need to take him to a local rehabilitation hospital; indeed they declared that he could be taken back to Canada since he was breathing comfortably on his own. Dr Wilmott said, “By providing him with this common palliative procedure, we’ve given Joseph the chance to go home and be with his family after spending much of his young life in hospital.”
Joseph arrived home on 21 April, in time to celebrate Easter with his family. As Father Pavone said, Joseph had defied many of his critics.
“Our mission to save baby Joseph and help his family was never based on any prediction of the future, but rather on the value of life here and now. Others, on the other hand, were looking into the crystal ball that the ‘right to die’ advocates seem to always think they have, claiming that intervention was futile because Joseph would only end up having a machine to do his breathing for him.”
Am I surprised? When I was working in the field of disability, I met many parents who, like Joseph’s, were unwilling to resign themselves to what science dictates and fought like tigers for whatever future their child had. Despite all our training, many medical professionals still tend to treat patients as if they are ignoramuses. Happily, in Malta, we have not yet reached the level of arrogance expressed by the professionals in this case. But we must never let our guard down. Everything that is worth preserving demands constant vigilance and protection on the part of the citizen, for otherwise, even those of us living in a democratic environment, will find soon enough how easily freedoms we take for granted can be eroded.
Joseph, breathing under his own steam, has once again proved that it ill behoves the world of science or any other discipline to try and play God.