Schools ponder role as child nears death

Chicago Tribune ^ | December 9, 2007 | Jeff Long

[Sopater]

As the school bus rolled to a stop outside her Lake County home, Beth Jones adjusted the bright yellow document protruding from the pouch of her daughter's wheelchair, making sure it was clearly visible.

In bold letters it warned, "Do Not Resuscitate."

The DNR order goes everywhere with Katie, including her 2nd-grade classroom at Laremont School in Gages Lake. The school is part of the Special Education District of Lake County, where an emotional two-year discussion ended this summer when officials agreed to honor such directives.

Now, district officials find themselves in the unusual position of having planned the steps its staff will, or won't, take to permit a child to die on school grounds. Although DNR orders are common in hospitals and nursing homes, such life-and-death drama rarely plays out in schools, where officials realize how sensitive and traumatic the situation could be for nurses, teachers and students.

Katie's brain was deprived of oxygen before birth. She can't walk, talk or do anything for herself. She is fed through a tube in her stomach and has an increased susceptibility to infection. Violent choking and coughing spasms have signaled a turn for the worse in her condition.

A Do Not Resuscitate order is a doctor's directive, issued with the consent of the family, that cardiopulmonary resuscitation will not be used if the patient suffers from heart or breathing problems. It can also prohibit using such devices as a defibrillator or an intubation tube. The new DNR policy puts Katie's school district at the forefront of a growing national debate about severely disabled and chronically ill children whose lives have been extended by medical advances -- and whose parents must face heart-wrenching decisions about the future.

[najida]

Exactly,
it’s not a ‘VOILA!’ all better scenario with CPR. It’s pretty brutal, even in the best circumstances.

As for a vent, there would be suctioning required etc. And its invasive plus frightening for some.

[Froufrou]

Not only that, but with all the ‘tolerance’ being taught nowadays in school, isn’t it about time for schools to help kids learn not to gawk at someone who is different?

[gracesdad]

“I’m with you. I for one could not stand by and watch a helpless child die, no matter how badly her parents wanted her dead.”

So you’re in favor of essentially taking away the parents’ right to make medical decisions for their daughter? Would you put the government or courts in charge? Doesn’t match my idea of conservatism.

[The Great RJ]

My wife is a former school nurse and had the same misgivings about sending children with complex medical problems to the public schools. The reason this is happening is that federal law mandates public schools to accept any student even if they need medical care during the school day up until age 21. It is not unusual in larger public schools to have students needing tube feedings, IV medications, suctioning and tracheotomy care, osotmy care etc. Even in our school district there was one student being mainstreamed in a regular class who could best be described as being in a persistent vegetative state. Of course paid aides were doing her school work while she stared obliviously and without cognition.

[Melas]

That is just outrageous. If someone wants their kid to be “allowed” to die, perhaps in great pain, then THEY should take the moral responsibility and be there for it themself, not pawn the responsibility on others. I guess the damage it might to do other children and the teachers is meaningless.

I can agree with that. You are absolutely correct.

[GovernmentShrinker]

Very doubtful, though, that she would enjoy going to a day program with other severely disabled kids any less. She might well enjoy it more, since the program would likely be focused on stimulating lights, sounds, simple games with other kids, etc. I doubt this little girl is really having a great time sitting through math lessons, for example. If she is, we need to be asking why normal children are are being given playtime-type math lessons.

There was a case in NJ a few years ago where a little girl was being mainstreamed in a normal public school classroom with a DNR order attached to her clothers. She was “enjoying” herself with frequent outbursts of noise and motion that disrupted class. Her mental function was such that that was the only way she could respond to any sound. motion, or other stimulus going on around here that she noticed.

[Danae]

A free “education” paid for by the state which is MANDATED to take in any child who shows up at the door regardless of their suitability in being there. Its BS. Its a form for free daycare paid for by the state and provided by a school system that is financially and professionally unable to meet the demand. It costs THOUSANDS of dollars more a year to “Educate” these kids who really should not be there. Hard asses as it is, the Parents of the kids are responsible for them and its their burden/duty, NOT the school systems.

[frogjerk]

How did we get to the point in this country where a DNR order can infringe on the moral conscience of everyday Americans?

A DNR is often more moral than resuscitation at any cost.

If it is forced upon ordinary people? Because that is what is happening here.

[wideawake]

Kind of funny how some “conservatives” love to rail in favor of parental rights...until other parents reach a decision they don’t agree with.

Parental rights do not extend to exerting control over the actions of other adults.

Sorry.

[VirginiaConstitutionalist]

The parents have a right to tell me that I, as a teacher, have to take care of their child 6-8 hours a day, but if she should happen to have an issue arise that puts her in immediate danger of dying, all I am allowed to do is push her into the nurse's station and back off?

Yes.

I believe the parents made the wrong decision (both with the DNR and with sending her to school) but I'm not going to use my sense of moral outrage to pull a Hillary and declare I'm going to make decisions for the family.

[Melas]

The child is in school because it pleases her to be there.

I get a lot of pleasure out of being in the women's sauna at the gym, but I don't belong there.

[DoughtyOne]

There are several problems with cases like this. First of all, the prognosis for the child is certain death, sooner rather than later. It’s simply going to happen. No amount of intervention is going to stop it. Staving off death for several months isn’t a heroic act. As much as we empathize with the child, her fate has been sealed. And I recognize folk’s reluctance to accept it.

What this story glosses over, is that there has been a movement to provide ‘a normal’ life to these children. That means they get to attend school right alongside other young children. And those young chidren have to witness the inevitable. That to me is a major disgusting no-no.

Imagine you’re second grader sitting next to a child that is dying. One day the child convulses, stops breathing, turns gray and dies. Wonderful. The inevitable has come to pass and the child is gone. A whole classroom full of other young children were forced to witness it. Isn’t that great.

I have a relative who is involved with the LAUSD. You wouldn’t believe the hoops the district is forced to go through, in order to fulfill some government mandate regarding disabled children. One child was bedridden. The child was transported somehow either in that bed or to a bed installed in the classroom, so they could attend class.

The costs on this are astronomical. Some of these children have attending nurses, that accompany them to class. The school district must absorb some degree of these expenses.

Hardly anyone is aware of this. We are diverting resources to educate children who in some instances have never shown any ability to respond to any exterior stumli. And this at great cost...

We are a nation of people who mean well, but there are times when I just have to shake my head and wonder how absurd the reality will get, if we’re this stupifyingly dumb.

[najida]

Maybe,
we don’t have the whole story here.

[wideawake]

So you’re in favor of essentially taking away the parents’ right to make medical decisions for their daughter?

There is no "right" to kill your kids.

[Marie]

Why is this kid in school?? Is she learning? Is this a state-funded babysitter to give mom a break? I’m confused about this one!

[cinives]

Schools are all about “artificial” life. Where else in life are you confined for 8 hours a day with same-aged peers with no freedom to even go to the bathroom without permission ?

[VirginiaConstitutionalist]

Parental rights do not extend to exerting control over the actions of other adults.

When it involves your kid, yes it does.

Otherwise you might as well argue you have a right to ignore a family's religious beliefs, because teaching the kid about same sex couples and explicit sex ed overrrule your obligation to act in the child's best interest.

[Froufrou]

Ping to #62. Define “belong” while keeping in mind that states are mandated to provide education.

Unfortunate as you may find it, states are not mandated to provide coed saunas.

[Abathar]

Have you read the entire article? This is not what the first couple of paragraphs seems to make it that was posted, read the entire article and you might change your mind.

[Marie]

Nopt to be cold, but why would any parents let a kid out of their sight for 6-8 hours a day when every day could be their last?

*You're* not the one being cold!