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.

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john average
john average
10 years ago

Very poor ethical review.

First, most of the facts are not in the public domain so your simplified argument is based soly on the media reports (tisk, tisk). Second, if you read the article correctly, the diagnosis, prognosis and disorder of conscious (that include vegetative state) were the same at both centers (how about that….). The only difference between centres was the end-of-life management, of which the St. Louis center was heavily influenced by religion (and paid by the priests of life – conflict of interest maybe….)

Ethicists might consider some of te folllowing….
1. did the st. louis hospital treat Joseph or his parents?
2. was the tracheostomy in Joseph’s best interests? It seems to have prolonged life by a few months, but did it improve his life, particularly when he is in a non-aware state?
3. Did the tracheostomy give him dignity, or take dignity away by denying him a natural death?
4. did the parents make decisions that were in his best interest – not according to multiple canadian and european centers, a review board, a court and so on…..

john average
john average
10 years ago

Lets really talk ethics.

A catholic hospital run by the “Sisters” accepts Joseph for a tracheotomy before ever seeing the patient, and after being approached by a radical pro-life christian physician (3rd party), with costs to be paid by the priests for life (4th party.). Any conflict of interest…..?

Address this comment, don’t erase it like the last one.