Schools Ponder Role As Child Nears Death
from BFP, Bint, MissCripChick, and others:
Schools Ponder Role As Child Nears Death
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.
....The school debate underscores the struggle of parents as they try to imagine the unimaginable: How will their child die? Will it be on a gurney tethered to a cluster of machines that sometimes only postpones the inevitable or will it happen in their arms? A DNR order can help ease such worries, some medical authorities say.
"They have some control over this whole uncontrollable disease that their child has lived through," said Dr. Kimberly Battle-Miller, associate medical director of Hope's Friends, a hospice that has helped Katie and her family since April.
.....Beth Jones will be called first, then paramedics, who will be on standby at the school in case Katie's mother decides that she wants them to intervene. Meanwhile, Katie will be moved to a nurse's office, shielding her from other students.
School nurses will be allowed to use suction to ease Katie's breathing and give her oxygen with a mask. The child can be positioned in a way that makes it easier to breathe.
But they will not perform cardiopulmonary resuscitation or use a defibrillator. Nor will they intubate her, a procedure that puts a flexible plastic tube down the patient's throat to provide ventilation.
.....Battle-Miller, who began as a pediatric critical-care doctor more than 10 years ago, has been baptized in the kind of emotionally charged emergencies that only the doctor, nurse or parent of a terminally ill child can ever really know.
Doctors, she said, are sometimes focused on one thing -- saving lives. They lose sight of the toll such action can take on patients and their families.
....Before the bus arrived, Beth Jones weaved a French braid into the school girl's long brown hair, while Allie held up a feeding tube. A machine could do the job, but that makes group hugs difficult.
Besides, anything that beeps isn't allowed in the Jones house.
"When we took her home from the hospital, where there were so many machines, we made the no beeping rule," Beth Jones said.
I've excerpted bits and pieces of this that really unnerve me.
There are some very disturbing things about the way this article describes it all. However aware the child is or isn't (EDIT: apparently she is, see edit at end of post), it's deeply worrisome to me that the only mention of the child seems to be that she likes school. Which might well suggest she likes life, too.
There's something about that that just really creeps me out, as someone who is very well acquainted with authorities who don't really care whether you know what's happening to you or not. As Amanda at Ballastexistenz has pointed out over and over in blog post after blog post, there are many different ways to be aware of things and many different ways to have that awareness respected or disrespected. Since the only thing I know of this child is that she apparently likes school, it makes the most sense to me, not knowing much about the whole thing, to try to give her as many of those good experiences as possible. CPR and the like might eventually facilitate that, so why the DNR? Why now? She's not dying.
And the thing that really bothers me is the statement that only the doctors and parents understand. Don't the people actually living with illnesses (and does she have one? All I see is these choking fits, which are for some reason "worsening", despite that all she's described as having is CP) understand far more than Mommy does? Like I say above, as Amanda and others point out, there are lots of different ways to be aware. And lots of ways in which severely disabled people are assumed not to be aware when they actually are.
Which is particularly disturbing given that all they mention in this article is that she has CP. The same thing I have. Which does not affect cognitive capacity at all, yet they're talking in a way that suggests she'll never be aware enough to tell anyone whether she wants to live.
And the idea that doctors' focus should shift off of saving lives, and onto something else bothers me. Of course there are profound issues in bioethics about end of life care, assisted suicide, when to remove life support, etc. Doing that sort of bioethics is of the utmost importance, and doctors need to be aware of all the issues. But to say that entirely shifts a doctor's role itself from "saver of lives" to something else which is not even specified makes me very uneasy indeed.
And the emphasis on the parent's control, again, troubles me. That's nice, but as a person with a disability I can tell you that there is something radically different between having control yourself and people who are not you but who love you (however much they do) "safekeeping" that control for you. Power and control are huge issues in my life precisely because of that. Perhaps this child is not aware enough to experience loss of control at all. But I think there's something really telling and worrisome about "and now somebody has the control! phew!" There's no recognition that someone swooping in to salvage "the control" isn't just a hero making a nice save, but also something very different from a life in which the person owning the body in question "possesses" "the" control.
And the "no beeping things in our house" makes me a bit uneasy too. On the one hand, having a rather deeply medicalized life myself, I know exactly how the millions of devices and artificial thingummies and doodads can start to feel deeply unnatural and profoundly creepy. So I can empathize to a degree.
On the other hand, though, I think there's also a very real hierarchy of normalcy in which needing, using, or having the machines (or even common assistive devices that aren't threatening like a cane or a chair) taints you with a sort of unnaturalness to other people. It renders you yourself creepy to some people, regardless of whether you experience the devices as creepy or normal or even as an extension of yourself. That these devices are not around because the mother doesn't like the beeping worries me, again. Even as I sympathize because I'm aware what a monitor must mean to her and how that sound must be heartbreaking.
MAJOR EDIT: In her photogallery is this text and a photo of her turning her head:
"Katie Jones, who suffers from severe cerebral palsy, uses a communication device that enables her to express her thoughts by bumping the switch with her head. (Tribune photo by JIm Prisching / September 18, 2007)"
Now why is that statement tucked away in the photoshoot and not right there by the article, which is written in a way that suggests she is not aware what is happening?e
Schools Ponder Role As Child Nears Death
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.
....The school debate underscores the struggle of parents as they try to imagine the unimaginable: How will their child die? Will it be on a gurney tethered to a cluster of machines that sometimes only postpones the inevitable or will it happen in their arms? A DNR order can help ease such worries, some medical authorities say.
"They have some control over this whole uncontrollable disease that their child has lived through," said Dr. Kimberly Battle-Miller, associate medical director of Hope's Friends, a hospice that has helped Katie and her family since April.
.....Beth Jones will be called first, then paramedics, who will be on standby at the school in case Katie's mother decides that she wants them to intervene. Meanwhile, Katie will be moved to a nurse's office, shielding her from other students.
School nurses will be allowed to use suction to ease Katie's breathing and give her oxygen with a mask. The child can be positioned in a way that makes it easier to breathe.
But they will not perform cardiopulmonary resuscitation or use a defibrillator. Nor will they intubate her, a procedure that puts a flexible plastic tube down the patient's throat to provide ventilation.
.....Battle-Miller, who began as a pediatric critical-care doctor more than 10 years ago, has been baptized in the kind of emotionally charged emergencies that only the doctor, nurse or parent of a terminally ill child can ever really know.
Doctors, she said, are sometimes focused on one thing -- saving lives. They lose sight of the toll such action can take on patients and their families.
....Before the bus arrived, Beth Jones weaved a French braid into the school girl's long brown hair, while Allie held up a feeding tube. A machine could do the job, but that makes group hugs difficult.
Besides, anything that beeps isn't allowed in the Jones house.
"When we took her home from the hospital, where there were so many machines, we made the no beeping rule," Beth Jones said.
I've excerpted bits and pieces of this that really unnerve me.
There are some very disturbing things about the way this article describes it all. However aware the child is or isn't (EDIT: apparently she is, see edit at end of post), it's deeply worrisome to me that the only mention of the child seems to be that she likes school. Which might well suggest she likes life, too.
There's something about that that just really creeps me out, as someone who is very well acquainted with authorities who don't really care whether you know what's happening to you or not. As Amanda at Ballastexistenz has pointed out over and over in blog post after blog post, there are many different ways to be aware of things and many different ways to have that awareness respected or disrespected. Since the only thing I know of this child is that she apparently likes school, it makes the most sense to me, not knowing much about the whole thing, to try to give her as many of those good experiences as possible. CPR and the like might eventually facilitate that, so why the DNR? Why now? She's not dying.
And the thing that really bothers me is the statement that only the doctors and parents understand. Don't the people actually living with illnesses (and does she have one? All I see is these choking fits, which are for some reason "worsening", despite that all she's described as having is CP) understand far more than Mommy does? Like I say above, as Amanda and others point out, there are lots of different ways to be aware. And lots of ways in which severely disabled people are assumed not to be aware when they actually are.
Which is particularly disturbing given that all they mention in this article is that she has CP. The same thing I have. Which does not affect cognitive capacity at all, yet they're talking in a way that suggests she'll never be aware enough to tell anyone whether she wants to live.
And the idea that doctors' focus should shift off of saving lives, and onto something else bothers me. Of course there are profound issues in bioethics about end of life care, assisted suicide, when to remove life support, etc. Doing that sort of bioethics is of the utmost importance, and doctors need to be aware of all the issues. But to say that entirely shifts a doctor's role itself from "saver of lives" to something else which is not even specified makes me very uneasy indeed.
And the emphasis on the parent's control, again, troubles me. That's nice, but as a person with a disability I can tell you that there is something radically different between having control yourself and people who are not you but who love you (however much they do) "safekeeping" that control for you. Power and control are huge issues in my life precisely because of that. Perhaps this child is not aware enough to experience loss of control at all. But I think there's something really telling and worrisome about "and now somebody has the control! phew!" There's no recognition that someone swooping in to salvage "the control" isn't just a hero making a nice save, but also something very different from a life in which the person owning the body in question "possesses" "the" control.
And the "no beeping things in our house" makes me a bit uneasy too. On the one hand, having a rather deeply medicalized life myself, I know exactly how the millions of devices and artificial thingummies and doodads can start to feel deeply unnatural and profoundly creepy. So I can empathize to a degree.
On the other hand, though, I think there's also a very real hierarchy of normalcy in which needing, using, or having the machines (or even common assistive devices that aren't threatening like a cane or a chair) taints you with a sort of unnaturalness to other people. It renders you yourself creepy to some people, regardless of whether you experience the devices as creepy or normal or even as an extension of yourself. That these devices are not around because the mother doesn't like the beeping worries me, again. Even as I sympathize because I'm aware what a monitor must mean to her and how that sound must be heartbreaking.
MAJOR EDIT: In her photogallery is this text and a photo of her turning her head:
"Katie Jones, who suffers from severe cerebral palsy, uses a communication device that enables her to express her thoughts by bumping the switch with her head. (Tribune photo by JIm Prisching / September 18, 2007)"
Now why is that statement tucked away in the photoshoot and not right there by the article, which is written in a way that suggests she is not aware what is happening?e