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.

[SoftballMominVA]

See post #220 - She’s not the only disabled child in the room, halls, or school.

[Hi Heels]

This is a tough one that I thought I had an answer to until my daughter STephie was born. With the cord around her neck twice in a true double knot, the oxygen was cut from her brain during the birth process and she suffered irreversable brain damage. Although a complete delight to me the 3 1/2 years that she lived, and a precious gift to her sister, there were very few good days. I watched as her head was torn open by the doctors no less than 12 times for shunt revisions. She ate through a stomach tube, and we had oxygen on the premises at all times. She could communicate very little. A difficult stick, her wrists and arms were cut open repeatedly to allow for IV's. She had pnemonia and was hospitalized most of her life on and off the vent. She had nurses in and out of the house around the clock doing painful procedures such as suction, and injections and physical therapy every single day.

Did I want her to live? Sure I did. I loved her. Did I want her to die? You bet. I prayed for Him to take her.

[MEGoody]

I guess you never heard of charm school!

Charm schools are private. We're talking about public school here. ;)

[Froufrou]

ROTFLMAO!

[MEGoody]

I have found that my other two boys, as well as every other child that comes in contact with my oldest son, learn some of the best life lessons that one can learn.

Yep, this type of thing, and the teaching of their parents is where this type of stuff should come from. The public schools need to stick with 'the three Rs'.

[najida]

That’s what you get when you google “Ugly Charm” :)

[the OlLine Rebel]

The Will of God will prevail no matter your efforts.

He wants you to value life and try to sustain and retain it.

But if He really does want that person off the Earth - nothing will stop Him.

So be assured that God’s Will shall prevail, even if you try to honor the life-affirming part of his Will. Noone is violating God’s Will if he tries to save a severely handicapped child who “is dying”.

[Froufrou]

I know, but I’m one of those people who believes that art and music appreciation, choir, and square dancing still have [or should have] a place in curriculum.

Call me old-fashioned! ;o)

[MEGoody]

The teachers try to (and you will forgive me if i am not using correct terminology) have the kids “remember” motor functions doing numerous exercises and other such things.

I don't view physical therapy as something the public schools should be doing.

Now again i dont know about this particular case however sending a brain injured child to school is not unheard of.

No. But expecting a child who is this handicapped AND so close to death as to require a DNR tag on her chair to be sent to school each day is out of line. She does not belong there.

[Froufrou]

~snorrfle!~ What, no pins?

[najida]

The issue is,
we can do more now to that kid than we could 10 years ago.

Are you saying venting that kid is OK?
And suctioning them around the clock?
How about the RI’s the come from venting?
30 chest compressions/2 breaths for ....how long?
How much bruising, breaking and cracking?
A tube feeding which can aspirate into lungs, or cause diarrhea?
And then there are bed sores after the diarrhea...how about those?
An in place shunt for meds OK?
How about a catheter always in place?
An Ostomy?
Meds required do deal with the effects of all of the above?

We can keep them alive a LONG time. Alive, but not living.

[MEGoody]

Do you also think physical therapy and observing a child dying should be part of the curriculum?

[eleni121]

I would not trust hospices either...

[SoftballMominVA]

The schools are required to do it. The physical therapy provides access to the general curriculum

[MEGoody]

She’s not the only disabled child in the room, halls, or school.

Doesn't mean it's the right thing to do.

[heartwood]

But I will repeat: no one has the right to compel me not to help a person who is dying in front of me.
_________________________

I’m pretty sure you have thought through the meaning of “help” as it applies to the individual and just want to act according to your judgement of the situation and your conscience.

If someone were terminally ill, and going to die within the next three months, and her heart and breathing stopped, would you bring her back to life, so that she would have to die again sometime soon?

[najida]

Which reminds me, I need to go out and get sewing needles.

[MEGoody]

The schools are required to do it.

Doesn't mean they should be.

The physical therapy provides access to the general curriculum.

What parts of the general curriculum can this girl have access to? (Please be realisitic.) Besides, providing physical therapy is a medical thing, not a public school thing. If they need physical therapy, the parents should handle that outside of school.

[najida]

Do you ever watch the show “Pushing Daisys”?

He touches dead folks once, and they come back to life, touches them again, and they’re dead, for good.

Maybe that’s what they’re thinking (”I get points for bringing them back the first time!!”)

[bigfootbob]

My brother was severely brain damaged from a car accident and soon after developed epilepsy resulting in uncontrollable grand mall seizures during the ‘70’s. Previous to the accident he was the most school centric of us kids. My folks sent him to school the next year after the accident because they wanted him to be accepted and they thought it would benefit him.

It didn’t work out that way. Richard didn’t receive the specialized care he deserved, required more attention than all the other kids in the class and because his seizures were quite intense he needed injectable drugs which could only be administered by the nurse. The school was no place for my brother but my parents bit on the social pressure to “mainstream” him.

After two years of all sorts of social pressures my parents decided they were being selfish for relying on the school to socialize my brother since he wasn’t able to grasp the classroom curriculum, yet he advanced the two years he attended school with his class.

Fast forward to today, we live in an area that has many reservations on all sides and drug afflicted homes in other areas. Kids in our public schools who want to learn have been forced into hallways while the teacher and staff deal with fetal alcohol syndrome and other developmental disorders devastating our young neighbors. That isn’t fair.

People EXPECT the schools to be the parent, priest and provisioner, that isn’t working any better today than when my brother was in the system, probably much worse today. Schools need to be for learning, not rehab centers...sorry.