If you haven’t read the news reports, Joseph Maraachli is a little boy with Leigh syndrome. The degenerative neurologic disorder left him on a ventilator in a hospital in Ontario. His parents requested that he have a tracheotomy to allow him to be cared for at home like his older sister who had died of the same disorder several years before. Joseph’s physicians and the hospital where he was in Canada did not think the tracheotomy was in his best interest and obtained a court order to remove him from the ventilator to allow him to die. In March he was transferred to a hospital in St. Louis against the wishes of those treating him and on March 21 he had the tracheotomy, described by his physician in St. Louis as a common palliative procedure. Within three weeks he was able to be weaned off the ventilator and was able to return home with his parents on April 21. His life expectancy at that point was about 4 to 6 months.
What can we learn from Joseph’s experience?
It seems that those of us who are physicians sometimes feel that our training and experience allow us to know better than others what is best for our patients. We need to remember to listen to those who know our patients best. Sometimes parents really do know what is best for their child.
It also seems that when people disagree on what is best it is better to err on the side of life.