The parents of Joseph Maraachli could be told any day now that they no longer have power of attorney over their son. The London Health Sciences Centre, currently treating baby Joseph with life support, would then undoubtedly remove his breathing tube without his parents’ consent.
The medical opinion was that “ongoing life support and extension of treatment with tracheostomy is not in JM’s best interest given his current condition and ultimate prognosis,” according to the Consent and Capacity Board’s summary of the hearing.
“A tracheotomy would likely provide for a longer period of life, however, in our view would not result in improvement of well-being and could reduce quality of life,” Fraser told the board.
[…]
But as the family’s plight hit the media, strangers jumped in with offers of help. One of them was Alex Schadenberg, the executive director of the Euthanasia Prevention Coalition, who helped the couple retain Mark Handelman, a Toronto lawyer who was once a vice-chairman of the Consent and Capacity Board.
[…]
Handelman hasn’t ruled out another legal appeal and is still trying to reach a compromise with the London Health Sciences Centre, keeping in mind that the hospital has contacted the Office of the Public Guardian and Trustee, which could come back with a decision on Joseph’s fate any day.
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I think it is the paren’t right to make these decisions – to extend the life of their child – eventhough in the end the prognosis might change.
However, if the baby is only on life support and the medical procedure will only extend the the duraration of life support, as painful as this must be, the parents must find the courage to let go.
I can say this because I had to do this with my child. She needed to be free.
I wonder what the motives of the Michigan Hospital is. I know the medical system in the States is profit driven and I sincerely hope this is not what is behind this but I annot help but wonder…
Dave,
My understanding of this case is that the parents don’t have false hope. They know their son is dying.
They just want to bring him home to die.
If they pull him off life support, his lungs will fill with fluid and he will suffocate and die. If they perform a tracheotomy first, they will be able to pull him off life support and bring him home, where he can be cared for by family and die in his own home.
I can’t possibly fathom why the hospital won’t perform the procedure. It can’t be a matter of cost–the legal battle to get public guardianship can’t be cheap. And if they performed the trach, the parents would take Joseph home and a hospital bed would be freed up. It seems like they want to make end-of-life decisions for this child, rather than allowing those decisions to be made by the family. And that is alarming.
I would like to hear the hospital’s side of the story.
And I am so sorry about your own daughter. My heart aches every time I hear of a child dying. May she rest in peace.
Why can’t they transfer Baby Joseph to a Catholic hospital?
Trying to justify the removal of life support on the basis that “it could reduce quality of life” is a very disturbing thing to see in print. The value of a human life is being measured on the basis of some ill-defined utilitarian view, and furthermore this view is being enforced by law. If they can overrule the parents’ wishes in a case like this, then why couldn’t they do the same for anyone else. A living will or a power of attorney means nothing, it seems.
Melissa,
The hospital has no problem allowing Joseph to go home. They would keep him on the respirator until he was home, then remove it and administer palliative care so that he could die a peaceful, painless death in his home surrounded by family. They DO have a problem with an invasive procedure that MAY extend his life by a month or two, but result in more pain and suffering for the child. The hospital has said from the beginning that they would pay for transporting him home, easing his suffering at home, and allowing him to die peacefully near his family after going off the respirator. What is going on here is the parents’ inability to deal with tragically losing a child. They want to artificially elongate his life in order to alleviate their mental anguish. They have their own interests in mind, not the quality of life of their son, however brief that life may be.
-George
(George–I typed this up and it sat on my computer before seeing your response.)
I’ve wondered why they just wouldn’t transfer care myself. It seems like there is a bit of a power struggle going on. There has to be someone in London who would be willing to perform a trach on a dying infant in order that his parents can attend to him palliatively at home.
I’m thinking out loud here, so bear with me. I’ve got a pile of questions. If somebody with a medical background, or a background in bioethics could chime in, I would really appreciate it.
1. Is baby Joseph in pain? Will the trach procedure cause pain and suffering? If there is pain, can it be controlled? Can a person in a vegetative state even feel pain? Honest questions.
It is obvious to me that if Joseph is in pain, then they shouldn’t prolong his life. But I find it hard to believe that Joseph is in undue pain, because I can’t see any parent wanting to prolong their child’s pain. So i will assume for the rest of these questions that Joseph is NOT in pain.
2. What are our obligations as members of our families? For me personally, I would be willing to go through a fair bit of pain and discomfort, if it meant that my family members would have peace of mind. I would personally trust my family to let me go if I was in crazy pain, but I wouldn’t mind hanging on at all if it meant that they got to say goodbye in a meaningful way. To me, a family is all for one, and one for all. That means that you can’t separate my needs from the needs of my family. Statements like “unnecessarily prolonging the dying process” are foreign to me.
3. Does the place where you die matter? It may not sound like it from what I’ve said above, but I usually am very supportive of removing life support, and not undergoing further treatment. However, if I had to choose between removing life support in a hospital and dying there, and going home with a tracheotomy, being able to breathe on my own, and going home and dying there, I would choose to die at home. Especially if there was the kind of animosity between my family and the hospital that there appears to be in this case. Somehow it seems much more humane to die at home in the care of family members rather than in a clinical setting.
4. How on Earth did they ever come to this kind of impasse? Is a tracheotomy really all that invasive? Especially compared to a respirator? It seems to me that performing a tracheotomy to ease breathing could easily be considered well within the bounds of palliative care. Kind of like inserting a feeding tube. Seems to me if the hospital wanted to take a stand about how far they were willing to go, they picked the wrong case. This has got to be a PR nightmare for them.
Melissa,
“Can a person in a vegetative state even feel pain?”
I would have to say no, although the body may react as though the person is feeling pain. The more substantial question is whether or not Joseph is really in a persistent vegetative state (PVS). However, both possiblities favour the prolonging of his life in this case, ie.
1. He is in a state of PVS, in which case he doesn’t feel pain, so no harm in prolonging his life, or
2. He isn’t in a state of PVS, in which case his right to life overrules any other consideration.
“It is obvious to me that if Joseph is in pain, then they shouldn’t prolong his life.”
Not obvious at all! Your comments further down indicate as much.
Generally speaking, this should be the choice of the person being treated, or (as in this case) if they can’t speak for themselves their legal guardian or attorney. The real issue here: are we really going to allow the state to remove by force the parents’ right to make these decisions for their child. I am personally outraged that this is even under consideration here in Canada.
Dan,
It is a tragic thing that the hospital has sought to overrule The parents’ right to make decisions for their child, but this is something that we occasionally see. For example when parents try to force their beliefs on a child that will have a detrimental effect on the Child’s health. Parents cannot refuse care for their sick child, as many have for religious reasons. Parents cannot refuse a blood transfusion for their child as many have tried to do.
This may not be a religious battle, but it is about the best interests of the child, which should be foremost.
1. The tracheostomy is not going to change the outcome in this case. Buying more time is meaningless to the child who has no brain function.
2. The tracheostomy is not going to relieve suffering. In fact it will increase suffering.
3. The baby has his own lawyer, who agrees with the hospital.
The doctors, hospital and courts do have a moral duty to prevent the parents from causing more harm for the sole purpose of making themselves feel better. They will lose their ‘right’ of decision making because they are putting themselves ahead of their child.
What they have effectively done here, in their selfishness, is remove all dignity from the dying process for this poor child.
Some people are so dedicated to preserving human life at all costs, they forget why it’s worth preserving.
Mark:
“The tracheostomy [sic] is not going to relieve suffering. In fact it will increase suffering.”
This is not possible if your claim that the child has no brain function is correct. On the other hand, if he is in fact capable of suffering, then he does have brain function, which invalidates your claim that “Buying more time is meaningless to the child who has no brain function.”
“The baby has his own lawyer, who agrees with the hospital.”
Yes, but how is this relevant to your argument?
“What they have effectively done here, in their selfishness, is remove all dignity from the dying process for this poor child.”
Where is your evidence that they are motivated by selfishness? And how can you possibly judge whether their proposed course of action will “remove all dignity” from the child? To me, it looks like they are making the best decision for the child. The bottom line is that they are the only ones who are qualified to make that decision. To suggest otherwise, or worse, to impute motives of selfishness to them as you have done, is incredibly condescending, especially when you are making claims that are not even logically self-consistent.
“Some people are so dedicated to preserving human life at all costs, they forget why it’s worth preserving.”
So, why is it worth preserving, Suricou?