Wednesday, March 2, 2011

The Plight of Baby Joseph

As a pediatric nurse, I've been captivated by the story of Baby Joseph. In short, Joseph suffers from an incurable "severe neurological disorder" where the diagnosis is either unknown or undisclosed. The hospital states he's in a "persistent vegetative state" and has acquired a court order to remove the baby's life support essentially to hasten his death. The family is requesting a tracheotomy tube to be placed, so he can be taken home to die. The hospital has "refused the procedure, saying it's futile and carries risks of infection and other complications." Yesterday, the hospital relented to the family that they could take the baby home with his current breathing tube in place but it would have to be removed once he was home where, again, the infant would likely die in a matter of hours or days. The family refused the hospital's offer. They still want the tracheotomy tube placed to, perhaps, prolong his life by a few months.

This one situation could be a whole novel. Enough conflict here?

A couple of points I want to make in regards to this story is that a persistent vegetative state does not mean brain death. A persistent vegetative state generally means that higher level brain functions are not intact such as communicating, learning, recall of memory. Though "alive" they are not able to care for themselves and are bedridden. However, there is often enough brain function that without life support, the patient will still be breathing and have a heart beat. Although, sometimes a ventilator or tracheotomy (possibly without ventilator support) is needed so their breaths are effective enough to sustain life.

Brain death means that your brain has no blood flow and is dead. When life support is removed in this situation, the person will not breathe. Without breathing, the heart is deprived of oxygen and will stop beating in a matter of minutes.

I find the hospital's position ironic, they won't place a trach because of risk of infection and other complications yet they want to discontinue his life support to let him die. The family is not requesting that he remain in the hospital accruing heavy medical expenses to lengthen his life, they're simply looking for a way to bring him home to die on their terms. Meanwhile, while all the court haggling is going on, he remains in the hospital accruing these expenses.

Is the care really futile or is it too expensive? Is it too expensive because the baby has special needs? These are the questions of conflict here.

I think the "easy" solution is to place the trach and let the child go home to die as the family wishes.

What do you think?



  1. The hospital may be afraid the parents may sue if the baby develops an infection. Often fear of litigation keeps people from doing the right thing.

  2. Sheila, thanks so much for your comment. Interesting thought and maybe that is the case here. From my personal experience, medicine in general tends to "CYA" themselves and sometimes orders more tests than are necessary for a patient to keep themselves out of court. This drives up health care costs for everyone. One reason tort reform should be part of any healthcare overhaul discussion here in the US.

    Canada operates under a single payer system. Their health care is "rationed". My personal feeling is this is a financial decision based on what the hospital feels is the baby's quality of life.

    I believe this family had another child that suffered the same condition. In that situation, the hospital did place the trach and allowed the child to die at home as the family wished.

    Why change their previous stance?

  3. Wow, that is so sad! :-( I have a little sister nearly that old....very sad! And if I were in their place, I'd have to side with the parents. Even though the baby isn't going to live long period, it would just be wrong to purposefully remove something so they die quicker.

    ~ Katy

  4. I agree Katy. Honor the family's wishes, place the trach, so the baby can die at home. I don't think it's too much to ask.