Lessons from the life of Joseph Maraachli

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.

What is it?

In a recent class, I presented the following images to my students:

Cute Puppy

I then asked the question, “In a fire, whom would you save first, and whom would you save second?”  Of course, the clever response is, “Tell the young woman to grab the baby and the embryo, and take the puppy by the leash while you’re at it.”  But suppose there really was a fire?  And suppose there was an actual “pecking order” where difficult choices had to be made?

Most of the students chose the baby, then the woman, then the embryo, then the puppy.  I agreed with the students to take the baby first although it becomes more complicated if it was someone else’s baby and the young woman was your wife.  But there was surprise when I said I would choose the puppy first before the woman!  Very quickly I added that the “woman” was not a real human, but an android that appeared to be a human.

If the “whom-to-save” decision is based on appearances alone, then perhaps a different pecking order would emerge.  After all, the embryo doesn’t look very significant.  Indeed, it’s difficult to determine that it’s a human.  On the contrary, the human embryo and the baby are both human beings, something even Peter Singer would acknowledge.  So it seems that appearance alone cannot be the deciding factor when making difficult ethical decisions?

My next question was, “What did you base the ‘whom-to-save’ decision on?”  This is where ethical considerations come into play.  Ethical decisions are made every day established on assumptions about the status of early embryos.  It is assumed by many scientists and practitioners in the medical community that the early embryo is not a person and, therefore, it can be destroyed for the purposes of embryonic stem cell research.

So I raise the question, “What is the early embryo?”  And bear in mind, the debate is not about whether it is a human being.