Thoughts on Baby Joseph
I'm following the "Baby Joseph" news and YouTube videos, and some other communications from St Louis (Cardinal Glennon Children's Medical Center) where Baby and dad and entourage landed about 2 a.m. March 14. One accompanying priest, Fr Frank Pavone, seems to be making fame on this.
His photo is everywhere. Perhaps well intended. I wonder.
Video and print interviews of the dad give me a very different sense, that of a parent who wants to be good, who wants the best for his child, who simply interprets extubation as "suffocation," hence a cruel and inhumane death. His paternal commitment--not to keep his son perpetually alive so much as to secure a better death--is morally commendable from that perspective. As is the London, Ontario hospital staff's commitment from their perspective, seeing a patient in PVS who can't suffer but also can't be helped by further futile interventions.
Without firsthand knowledge and little to go on, I'm assuming the parents' minds are made up as to what's what, and also that the baby really is in PVS or close, per consensus of medical staff tending him back in Canada. If so, the only actual suffering possible would be that of the parents; and it may be that Cardinal Glennon staff are now treating them more than their pediatric patient.
So a tracheotomy, and possible transfer to a skilled nursing facility on hospice, might not be a bad investment toward a goal of care that includes not inducing further pain and suffering on minority culture parents who probably are just being protective parents, doing the best they know how under trying circumstances and public scrutiny. As the dad says on video, they will accept if Joseph dies on a trach. But they obviously cannot accept him dying from an "inhumane" extubation resulting in death by "suffocation."
The fact that others of us might interpret that dying very differently doesn't change the terrible experience that it could be for them. Place of dying seems to matter to the Maraachli and Sader family, too, as it does to almost all of us. Few of us want to die or have loved ones die in an ICU. These parents make that claim repeatedly. They want to take him home, or at least out of hospital, to die.
Maybe in the midst of tragedy, St Louis clinicians can help Moe and Sana be good parents, at least from their perception of what that entails. Maybe this isn't total futility then. Maybe this needs to happen even if there are less well-intended opportunists who cash in on fame and contributions as a result. (I can't believe I'm writing this.)
Maybe some day we will stop the train before it gets to them, or this. Wouldn't that be good? Maybe.
P.S. Please, someone, talk me out of this line of reasoning, and back to "medical futility"!