Anna Gregoline | October 14, 2004
Fascinating look at another life-support court case.

Kris Weberg | October 14, 2004
It's a serious shame the boy is, and I do believe this, dead. If his parents want to provide care for him at cost -- I can totally understand -- I see no reason they shouldn't. But they have no right to force a hospital to provide care that the doctors there simply don't believe is effective in any fashion. To a doctor, that's not only a waste f resources, it's unethical ont he doctor's part to provide false hope and to provide useless treatment. (Even a placebo has a therapeutic psychological effect on the patient, though recent studies have called the placebo effect into question.)

There's no reason, assuming proper transportation for the child can be arranged, that the parents shouldn't be free to take him wherever they'd like. They're in for a very sad time, though. Minerals and baths don't cure brain tumors, and they certainyl don't regenerate nerve tissue. And, because it's a natural way of deflecting -- not denying, but coping with -- the inestimable loss of a child, I can understand why they would both believe any claim to a treatment that could revive the child, and would want someone to blame.

It reminds me of the story of comedian Pat Paulsen, who was dying of cancer, and had been told by his doctors that he would die. He and his family rejected the diagnosis, and flew to the Phillipines for "psychic surgery," which is, very clearly, a complete sham. He died, of course.

The interesting part of the story, though, is his family's response. Before he went for "surgery," his wife noted, 'Ther doctors here tell us there's no hope. The doctors there tell us they can save him. We like the other doctors better." Completely understandable, and also explicative of why, after Paulsen died, his family said on various occasions that the problem was that they hadn't gotten him to the Phillpines early enough.

We don't want our loved ones to die. And if someone tells us they can be saved, we're liable to want to believe that so badly that we do, for a very long time.

Anna Gregoline | October 15, 2004
I thought for awhile that it should be up to the parents to take him if they want - but the hospital has a responsibilty to get through to people that someone is DEAD. What would it be like if they took him home and then realized? They could sue the hospital for not making them understand it. It also opens up lots of doors for people not believing the hospital when it declares death, which would cause obvious problems. While this is different than the Terri case for many reasons, I see the hospital's stance on this.

It sounds like the case will resolve itself - his heart will most likely give out before any court decisions can be made.

Kris Weberg | October 15, 2004
These parents aren't going to understand that he's dead if they haven't gotten it already from the hospital's intention to unplug the life-support machinery.

This actually happens fairly often, and there's almost never been a case of realization. The emotional trauma sees to that.

Anna Gregoline | October 15, 2004
Not really, Kris - I mean, they're going to understand when there's nothing medically that anyone can do to prevent him from being stone cold dead. They're probably in denial and thinking there's a "difference in opinion" whether he's dead or not. It will become clear very shortly, but it's the hospital's responsibility to keep ward of him until it's clear. Also, you cannot remove a dead person from the hospital even if you're family - it has to be done by a official person of death, like a coronor or a funeral home attendant.

Kris Weberg | October 15, 2004
I guess I'm just seeing thsi differently -- if seeing the boy in bed, being told that he is brain dead and will never revive, and even being told than brain death constitutes a legal standard of death hasn't done it, I'm not really sure what would.

I agree that they will realize he is not coming back, but again, the blame will be placed on the hospital, not for "not telling us" but for refusing holisitic treatment. 'If you ahd done this when we asked, he'd have come back." Why? Because that's what they asked for, and that's what they didn't get. So clearly, that will be "what killed him." This isn't just about refusing to believe he's dead, but about believing "we could have saved him."

They're parents, Parents never want to believe they or someone else couldn't save their child. Imagine the guilt and grief, and it's clear that this isn't just denial of death, but denial of death's inevitability for their child. Telling themselves, 'It doesn't/didn't have to happen" is how they're still able to function in the world.

Anna Gregoline | October 15, 2004
But the hospital can prove in a court of law, in legally defined terms, that the boy was dead at the time the parents are demanding "treatment." So I don't see this as being a problem.

I'm not arguing with you that they are in severe denial. They'll be in deep grief perhaps all their lives, thinking that if the hospital had let them do something, he would have lived (even though he's dead already). But it's the hospital's obligation to keep the boy and make sure he either dies on his own or gets through to the family to discontinue life support.

Anna Gregoline | October 15, 2004
Wow, they won.

Kris Weberg | October 15, 2004
Well, yeah, they won. I implied as much in my first response.

Judges and juries often don't understand brain death, and in any event, the typiucal protocol is that the person with power of attorney over a minor gets to make these kinds of decisions where mechanical intervention can be shown to technically keep the body alive.

Certain standards of death, like brain death, are still controversial in the legal field -- this isn't radically different from the case of Karen Ann Quinlan, for example, and that was over 20 years ago. Think about it: the boy's heart is apparently still beating on its own -- the doctors specifically say in your article that his heart will stop beating "before October 27," not that it already has stopped beating. Not to mention their refusal of secondary EEG tests after the parents requested one -- they AREN'T doing everything they can to get the point across to these parents, Anna. Oh, and, legally, only a county coroner can officially declare death; hospitals do not have this power, though they can generally determine 'death" for the purposes of reallocating hospital resources. It's a fine legal distinction, but a definite one.

But again, I point you to the original article you linked -- this isn't just about the boy being dead, it's about the hospital refusing to provide "alternative" treatments, to the point that, and I'm quoting the article now:

"After undergoing radiation, his parents opted to take the boy to a clinic that   practices holistic therapy in Georgia, where he slipped into a coma and ended up in a Georgia hospital. His parents fought with doctors in Georgia and were threatened with potential neglect or abuse when they wanted to take him to Mexico for alternative treatment, they said. They later returned to Florida, where they said they got approval by a hospital to fly Jesse to a clinic in Tijuana, Mexico."

So even before the boy was declared dead, they were fighting the hopsital in regards to treatment options, and being threatened with neglect charges if they pursued alternate options. If the parents really believe that such treatments would work, and believed it BEFORE the declaration of death from a hospital that not only told them they were wrong, but LEGALLY THREATENED THEM, then yes, this will end up being a blame-game where it's the hospital's fault for never considering "alternative" treatment. The case is not just about definitions of death; it's about defining the limits of a parent's or spouse's right to irrationally choose even the least likely of treatments, in contrast with a hospital's ethical imperative to provide tested treatments and give fair, scientific diagnoses.

Based on the article, even the hospital's diagnosis of "decomposition" refers to the brain, not the body; the specific claim is that boy's brain is liquefying. This wouldn't be apparent at sight, and the continuation of heartbeat, plus the ventilator keeping up the boy's breathing, are powerful signs of life to anyone who's not a doctor.

The boy will die, the parents will accept it when it's readily apparent via cessation of heartbeat, which is what the vast majority of people consider to be death -- even many states have not accepted brain death as identical with legal death -- but what they will not accept, and what most people never quite accept, is that the horror of a 6-year-old child suffering from and dying of brain cancer was a random, incurable, and inevitable process. Who on Earth wants to believe the world works that way, or that they, as parents, were powerless in the face of their child's predetermined, unavoidable, and agonized death?

That's denial, sure, but it's just about the most natural, understandable denial there is; it's certainly not equivalent to a loony keeping a corpse and calling it alive.

Anna Gregoline | October 15, 2004
Uh, Kris? What you thought should happen wasn't a given, unless you have clairvoyant powers now.

Please read carefully what I said.

When did I ever say it was equivalent to a looney keeping a corpse and calling it alive? And I said that I understand their denial. No need to reiterate that point.

It DOES boil down to whether people should be allowed to do anything they want for their children's medical needs - even if that medical need isn't going to help and might hurt. Since we have rules in place for neglect/harm, it's a sticky subject. I'm not sure how I feel about it. The hospital is in a Catch-22 - they can't let the parents take the child because that would cause the boy's absolute death - possibly making the parents negligent and the hospital for allowing this - but they also can't provide any more care that will make the boy better, so they're stuck. They can't promise more treatment for the family and they can't allow them to take the boy out of the hospital. I'm sure the hospital is more relieved by the court decision than anyone - it lets them off the hook, and the boy is someone else's problem (except for the remaining litigation against the hospital).

We're never going to have definitions of death because we can't exactly define what happens to the body/life connection when we die. All we can show are absences of life - no brain activity, no lung function. But other parts of the body may keep on marching on, confusing the issue (like the heart, that dumb pump). The hospital right now was doing the best it could under it's own widely accepted definitions of brain death. Also, when the parents wanted to take their child away for alternative treatments, it was probably dangerous to even move the child because it would likely kill him. Doctors must first do no harm, so I understand why they blocked the parents from doing this.

It seems from my reading that even when people harvest organs, there is sometimes still some brain activity - nothing meaningful, but some. So where do we draw the line? It's impossible to determine, and I think this a struggle we will see forever. I'm not sure why I'm always interested in these cases, but I am. Perhaps it's the spiritual/grief process of life/death tied up with the cold hard facts and disagreements of law. So many variations and things to think about!

This is from 2002, but it's very interesting.

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