DNR; Should Schools Follow Parent's Wishes?

[Annie]

Schools ponder role as child nears death

By Jeff Long

December 08, 2007
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. Two other pupils in the district have similar DNR orders.

Katie's order was put to the test last month, when she stopped breathing during class. Her lips turned blue and her skin took on a gray pallor. A teacher picked her up, as allowed by the DNR, and Katie soon started breathing on her own.

School officials called her mother, who arrived within 10 minutes. She brought Katie home, where a nurse from the family's hospice program met them.

'It was a little unnerving,' Jones said. 'It kind of put it all in perspective - this is real.'

The scare strengthened Beth and Dave Jones' resolve to face the death of their daughter on their own terms.

Although some school districts follow parents' wishes about DNRs, many others have not yet focused on how they will handle the issue. It's a topic school officials across the country are beginning to wrestle with, experts say.

In recent months, school boards in Hillsborough, N.J (http://www.marriedandflirtingchat.com/city/hillsborough-nj)., and Visalia, Calif (http://www.marriedandflirtingchat.com/city/visalia-ca)., have debated DNR orders. Milwaukee Public Schools updated its policy two years ago so that officials at least talk to parents about what's best for the child, even if the rule-of-thumb is not to obey a DNR.

Barring a court order, the policy in Chicago Public Schools is to ignore such orders and do everything possible to save a child's life, officials said.

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.

The Barrington-based hospice allows the child to remain at home rather than make frequent visits to a hospital, easing the emotional burdens on those closest to her.

On a recent morning, Beth Jones could readily see how keenly her daughter enjoyed her trips to school. The little girl was beaming up at her from her wheelchair as they waited for the bus.

'You're in a really good mood, aren't you?' Beth Jones asked her.

Two winters ago, Katie's parents felt far less in control of their daughter's fate. The child was near death every night for nearly three weeks. Katie's increasingly severe attacks were a sign that her condition had worsened.

'The light went on in my head,' Dave Jones recalled. 'This can't go on forever.'

A friend - a paramedic and the leader of Dave Jones' Bible study group - mentioned that parents can face legal consequences if a child dies at home. If they dialed 911, the paramedics would swing into frenzied action with a swirl of invasive medical equipment and powerful drugs.

'The end result could still be the same, and you had the last few minutes with her as mad chaos, and her being whisked away in an ambulance,' Beth Jones said. 'We don't want that.'

So in April, the couple met with Battle-Miller, who signed Katie's DNR order. They also discussed Katie's illness with the local fire chief

[spare_change]

OK -- everybody seems unwilling to take on a tough subject. So, here goes ....

The parents are certainly within their rights to establish the DNR order. The schools have no choice but to obey.

However, I question whether the little girl should be allowed to go to school at all --- it would seem inappropriate. Lord knows I sympathize with the parents, and I feel sympathy for the little girl, but I wonder if her individual rights (the right to go to school) aren't interfering with the rights of the other students.

Let's assume your 6 yr old is a classmate of Katie. Are you ready to explain life and death to your child? How are you going to explain to your child the spasms, vomiting, loss of continence, etc that this little girl may suffer when she goes. My heart goes out to the parents, but I worry about the other children, as well.

[MCat]

OK -- everybody seems unwilling to take on a tough subject. So, here goes ....

The parents are certainly within their rights to establish the DNR order. The schools have no choice but to obey.

However, I question whether the little girl should be allowed to go to school at all --- it would seem inappropriate. Lord knows I sympathize with the parents, and I feel sympathy for the little girl, but I wonder if her individual rights (the right to go to school) aren't interfering with the rights of the other students.

Let's assume your 6 yr old is a classmate of Katie. Are you ready to explain life and death to your child? How are you going to explain to your child the spasms, vomiting, loss of continence, etc that this little girl may suffer when she goes. My heart goes out to the parents, but I worry about the other children, as well.

My thoughts exactly.......in my opinion you are right on....

[sargethree]

OK -- everybody seems unwilling to take on a tough subject. So, here goes ....

The parents are certainly within their rights to establish the DNR order. The schools have no choice but to obey.

However, I question whether the little girl should be allowed to go to school at all --- it would seem inappropriate. Lord knows I sympathize with the parents, and I feel sympathy for the little girl, but I wonder if her individual rights (the right to go to school) aren't interfering with the rights of the other students.

Let's assume your 6 yr old is a classmate of Katie. Are you ready to explain life and death to your child? How are you going to explain to your child the spasms, vomiting, loss of continence, etc that this little girl may suffer when she goes. My heart goes out to the parents, but I worry about the other children, as well.


Pretty much my thoughts also. This is another really tough situation. I think I would really be concerned about the other kids. Suppose this girl passes away in the classroom. We're talking about little kids. How are they going to deal with that? Obviously I strongly sympathize with this little girl and her family, it just seems other arraingements could have been made. With all her disabililites it would seem to me that public school wouldn't be in her best interest. Of course we don't know all the facts, it just seems to be a strange choice in this situation.

[mrdiscreet]

I can't imagine a court order requiring a school to allow a student to die.

School officials are not medical personnel. Their job should be to get the student stabilized and to a hospital asap. Let the DNR nuances get sorted out by medical professionals.

If she can go to school, that should be encouraged, but the DNR should not be imposed upon anyone outside a hospital setting.

Interesting lesson for the class: watch as we allow someone to die.

It's a harsh topic, not judging whether DNRs are right or wrong. But it's absolutley wrong to have them play out in front of children.

[WandaRing]

This is such a painful and :cry: issue if you have a loved one that is seriously ill, injured or was born with life threatening medical conditions. Twenty years ago, my sister had her stomach stapled, it went very wrong within 2 months, and the doctor did not believe her and just sent her home.

In the month of December, she was sleeping all day and unbeknown to us she was having small strokes that were slowly shutting down her brain and paralyzing her body, it came to the point where she did not recognize her three year old son, and he came out running knowing something was very wrong. We got her to the hospital and they called in a Psychologist believing that she was faking, about three days later she went into cardiac arrest and slipped into a coma, from there it was all down hill with machines hooked up to her body, her brain swelling and then bleeding, leg needing to be amputated and so on. It was becoming too heartbreaking to watch her go through all that, I came very close to pulling the plug many times, I just didn’t want her to hurt any more and watch my mother break down any more. Yes I believe letting people go, children, teens, adults and seniors, its not them any more, it’s just their body going through hell. Until you go through something like this...you dont know the real hardheart of choosing to let someone you love die....Sometimes letting them go on is the most loving thing you can do....

[OICurready4me]

My view may not be a popular one but I'll give it anyway. I don't think the kid should be in school. How can she be getting anything out of it? Plus, what a waste? They should try and make this poor little girl comfortable and happy as long as they can buy allowing her to stay home, watch TV, play games with her, spend as much time with her as they can, rather than shipping her off to school. Then, if the DNR comes to be, the parents can be ones to handle that situation and will also be with her in her last moments.

[Sneaky]

Interesting lesson for the class: watch as we allow someone to die.

It's a harsh topic, not judging whether DNRs are right or wrong. But it's absolutley wrong to have them play out in front of children.

I would NOT want to have my child have to watch that. Sometimes kids are exposed to difficult truths early, and then you figure out the most appropriate way to handle it given the circumstances, but if there is a chance to shelter them from such sadness, I would prefer to do that as long as possible.

I can see the other side of wanting to allow your sick child in school, but you have to think of the other children, and the long term effects this could cause to them psychologically.

[hank69]

Spare I'm with you also.. I'ts hard for me to understand... what the parents are thinking of sending her to school..

[cherokeered]

I'm guessing it gives her parents a break for her to go to school....and perhaps it gives her one too

That being said....DNR is a binding legal document and while I can sympathize in all directions and realize it has more to do with professional medical personnel.....as soon as you become trained to perform basic CPR...it pertains to you
I do think that having her in school is putting her at risk to begin with....her immune system will eventually yield to some kid with a cold...
BTW...I had a DNR placed on my mother when she was in the hospital...so yeh, it's hard but I loved my mom...enough to let her go...

[Annie]

Spare I'm with you also.. I'ts hard for me to understand... what the parents are thinking of sending her to school.. I'm guessing that part of it has to do with them wanting as normal a life as possible for her. Going to school is the most normal thing to do for any child....

Every child, regardless of circumstance, is guaranteed an appropriate education in this country. This child is not in a normal classroom setting. I'm sure that her class size is less than 5, and that she is not the only child in a wheel chair, or with multiple physical and mental challenges.

My son's class has 6 children in it, he has ADHD. Some of his classes are blended with the mainstream children, his difficulties are not that great, children with greater issues have an even smaller class size.

[rainbowhigh]

I can see both sides to this situation.


On one hand, this little girl's health problems are pretty severe - so I'm sure she doesn't mingle with the rest of the children very often, if at all. Maybe in the cafeteria - but I know in some schools, the special needs children are able to eat separately from the rest of the kids if their needs are severe. I'm sure the school doesn't let the other kids what Katie get fed through a tube.

Having said that, I would still worry that something would happen to Katie where other children would be able to see. I understand that Katie has the right to an appropriate education, but the other children have the right to maintain a certain level of innocence for as long as possible. Which is why I don't think DNR orders should have to be followed while the child is at school. I think children should see teachers, school nurses, and school administration doing everything they can possibly do to save a life.

On the other hand, as a parent, if one of my children were to have a severe disability (while I can't say for sure what I would want) I think I can safely say that I would want what made them happy. The article said that Katie looked forward to her trips to school. I'm sure most children would want to be where other kids are. Maybe Katie wouldn't be happy at home playing games or watching tv. Who knows? But any good parent wants to give their kids what makes them happy. Sometimes we're not able to do that and sometimes it's not in our kids' best interest to give it to them. But if a school has a sufficient system in which to take care of children with special needs, then why shouldn't they go to school? Even with this argument - I can't reason out the pro side of it being necessary to follow DNR's in schools. Try to save the child until you get him/her to a hospital. Then let them follow the DNR.

Just my 2 cents...

[mrdiscreet]

I'm guessing it gives her parents a break for her to go to school....and perhaps it gives her one too

That being said....DNR is a binding legal document and while I can sympathize in all directions and realize it has more to do with professional medical personnel.....as soon as you become trained to perform basic CPR...it pertains to you
I do think that having her in school is putting her at risk to begin with....her immune system will eventually yield to some kid with a cold...
BTW...I had a DNR placed on my mother when she was in the hospital...so yeh, it's hard but I loved my mom...enough to let her go...

Are we mixing apples and oranges here? I think the "order" here is a MD's instruction, not a court order.

I am informally trained in CPR -- no license required -- and like hell if anyone is going to order me to stand by and watch someone die.

There is something ghoulish about parents hanging a sign around their kid's neck saying let her die. I get the impression they want it over, but fear legal risk if they let her die at home -- how convenient, force the school to do it.

Red, I think you are in the med field? I would guess hospital staff is highly trained, and could opt out of DNR staffing if they have a moral objection? (Just guessing.)

The appropriate place to sort out DNRs is in a hospital setting.

I'd probably want to put one in place for myself, but I sure as hell would want a restaurant manager letting me die because I choked on a nice piece of steak before it could properly clog my arteries.

[scoobertina]

It is not the schools decision to make.. if the parents wish the DNR... the school needs to abide by their iwshes.... whether they believe in it or not... sorry, but it is the parents right to have thier wishes met....

[cherokeered]

Are we mixing apples and oranges here? I think the "order" here is a MD's instruction, not a court order.

I am informally trained in CPR -- no license required -- and like hell if anyone is going to order me to stand by and watch someone die.

There is something ghoulish about parents hanging a sign around their kid's neck saying let her die. I get the impression they want it over, but fear legal risk if they let her die at home -- how convenient, force the school to do it.

Red, I think you are in the med field? I would guess hospital staff is highly trained, and could opt out of DNR staffing if they have a moral objection? (Just guessing.)

The appropriate place to sort out DNRs is in a hospital setting.

I'd probably want to put one in place for myself, but I sure as hell would want a restaurant manager letting me die because I choked on a nice piece of steak before it could properly clog my arteries.

so let me guess...you believe that the parents, who are the legal guardians of this child, have no freedom to choose a DNR for this child.....
ya know, ur choking is not the same thing...so, apparently I'm not allowed my position either and must be evil for having a DNR on my mother...despite the fact she could not eat or talk....
BTW...ur guess on all counts is wrong...
BTW...each state has it's own laws regarding living wills and DNR's...PA enacted an out of hospital DNR regulation that enables someone to wear a bracelet or necklace so anyone ready to give CPR will have to abide by it....and btw, ya open to a lawsuit if ya don't....

[mrdiscreet]

It is not the schools decision to make.. if the parents wish the DNR... the school needs to abide by their iwshes.... whether they believe in it or not... sorry, but it is the parents right to have thier wishes met....

It may be the parents right to let their child die; it is certainly not their right to force school personnel to participate in the act.

[mrdiscreet]

so let me guess...you believe that the parents, who are the legal guardians of this child, have no freedom to choose a DNR for this child.....
ya know, ur choking is not the same thing...so, apparently I'm not allowed my position either and must be evil for having a DNR on my mother...despite the fact she could not eat or talk....
BTW...ur guess on all counts is wrong...
BTW...each state has it's own laws regarding living wills and DNR's...PA enacted an out of hospital DNR regulation that enables someone to wear a bracelet or necklace so anyone ready to give CPR will have to abide by it....and btw, ya open to a lawsuit if ya don't....

You guess wrong. Red, I'm not sure why you jump to put words in my mouth that I have not said.

I respect any family's decision on DNRs; I tried to comunicate that I would like to have one for myself.

My point was restrict it to a hospital setting, where people are trained to deal with them correctly.

BTW, I will take the lawsuit on "wrongfully extending a life", not that I think I'm capable of performing CPR correctly if it ever came down to it ...

[tiger50]

It may be the parents right to let their child die; it is certainly not their right to force school personnel to participate in the act.

funny, i sorta though what was bein asked here was non participation, ie, dont interfere..:sc

[cherokeered]

You guess wrong. Red, I'm not sure why you jump to put words in my mouth that I have not said.

I respect any family's decision on DNRs; I tried to comunicate that I would like to have one for myself.

My point was restrict it to a hospital setting, where people are trained to deal with them correctly.

BTW, I will take the lawsuit on "wrongfully extending a life", not that I think I'm capable of performing CPR correctly if it ever came down to it ...


And being as the parents of this child have placed a DNR on her person while attending school, it has removed the school from making the decision or from being responsible in applying CPR should the need arise.
DNR is not an arbitrary request which can be chosen to be ignored when it isn't convenient.....

[mrdiscreet]

And being as the parents of this child have placed a DNR on her person while attending school, it has removed the school from making the decision or from being responsible in applying CPR should the need arise.
DNR is not an arbitrary request which can be chosen to be ignored when it isn't convenient.....

I usually apologize when I realize I have unfairly stated someone's views. But that's just me. :sc

Are DNRs arbitrary requests ? No. Are they something something schools or the general public can and should ignore, yes.

I've done some quick hunting around the net on this. Most schools refuse to honor DNRs, and have no legal responsibility to do so.

And there are many nuances to DNRs, with hospitals staff carefully trained in which are valid to honor and which are insufficient -- not a mess I'd ask teachers to try to become expert in.

It amounts to requiring students and teachers to participate in a snuff film, if we want to get brutally honest about what is being asked.

[PunkyBob]

Wow...what an issue...I think the DNR is a medical issue, not a scholastic one. And yes, Katie deserves as much of a normal life as she can get...what an agony the poor kid must go through every day. Sending her to school must be the parents' way of normalizing the kid's life...if so, I understand their actions. But, as folks have said before, a DNR is a medical issue...and the effect of watching Katie die could be traumatic for kids that young...hell, it'd be traumatic on me. I doubt the school has medical facilities that advanced to handle an emergency; if Katie has a severe trauma, what can anyone do about it except call the proper authorities? Meantime, there she is, fighting for her life...or just slipping away...if it were my kid, then I think private instruction at home would have been the decision.

[Shiane]

How Ironic this situation is. Just last wednesday night my patient was a 41 yr old with prenatal hypoxia (Mental retardation, same as the little girl in this story). She was 41 years old with a long line of medical problems. She had been recently treated with chemotherapy for lymphoma. She arrived to me guppy breathing, which isn't a great sign. I approached her father as to if she had any kind of advance directive or DNR, remarkedly she did not. It is never easy to approach family members as to what their wishes are. But, he said he did not want her intubated (put on a ventilator), and he did not want CPR preformed. He signed an offical DNR, and her physician wrote a DNR order.

We would not be treating her agressively, it would be comfort measures only. We did not transfuse her with blood or other blood products, we did not administer IV antibiotics. Her hemaglobin was about 5, her platelets were 4, her WBCs were 0.1. Basically she was extremely anemic, she had no ability for blood coagulation, and her immune system was zilch. We made her comfortable with oxygen and morphine.

This was a really sad situation because her dad was elderly, she had lost her mother a few months back, and an aunt just 2 weeks prior. She lived in a home for the mentally challenged since she was 11 and had lived with the same room mate for 30 yrs. She had the mental capacity of a high functioning 5 yr old, she worked at the Good Will. When her immune system became so compromised, her dad stopped letting her work, for her own safety.

She died early thursday morning and after 12 years of seeing people routinely die, I couldn't hold back the tears this time.

As for the little girl in this post, I voted yes for many reasons. Number one, her parents wishes must be respected regardless of what anyone else thinks. I do question her quality of life, which well is the most important thing to me. Without fully knowing or understanding the full details it is hard for me or anyone else to say whether the DNR should or shouldn't be respected. Knowing how hard this decision is for families, especially the family of a child, I have to think they are doing what they feel is best for this little girl. If this were an 80 yer old none of us would have a problem saying yes but since this is a child we all have something in us that just says this isn't right. Unfortunately it is never fair when a child is terminally ill, and her short life is what we all struggle with. If her parents were willing to put aside their selfishness and make her a DNR, well I personally can't say they were wrong.

However, the question about her remaining in shool does not sit well with me. It is my job to deal with life and death and I deal with it. But, it is not a the job of a teacher of young children. Even more disturbing is the effects on the other children in her class. Yes I realize that children all too soon will face the reality of death, but they shouldn't be forced to witness it in their classroom. I personally think while this little girl has the right to attend school, the minute the DNR order was signed, she should have been kept at home. It is wrong on so many levels to expose many other young children to this saga of life. They just do not have the coping skills or the understanding of life and death to deal with this kind of situation. Being told by a school counselor that the little girl died is one thing, but to have them be witnesses to her death by watching her die in their classroom would traumatize those little kids, and that is just wrong!

DNR's should be respected at all times by healthcare professionals, families, and caregivers without question. The school should not have to worrry about it, because she should not be there. Just my opinion.

[code20]

why would u even ask that question?

[WandaRing]

why would u even ask that question?
As sad as this topic is, someone today is facing this situation and someone in here may have to make some choices about themselves or a loved one in the near future. As you see in my prior posting, I have been trough this…the more information we have the more educated we become, it also makes each of us appreciate our health and the health and well being of our families

[stucknmarriage74(f)]

yes id o think that schools should uphold DNR..that is a legal and binding contract.Having experience w/dnr's personally...it is an end of life decision and in this little girls case, it sounds as if her disease is progressively getting worse. If such is the case she will b or already is suffering there is no reason to prolong that.If the school is having problems with the impact it would have on her classmates, if she stops breathing again, she should b taken 2 an isolated area and allowed that last dignity, this would spare her classmates having 2 see herr death. Death is a part of life and young or old we have 2 face that fact..the classmates should b educated on this and told; if it does happen; that she is in a happier place and is no longer suffering; children understand things much better than we give them credit for and are very resilient.

[tt]

The School is under no obligation to sustain such an order. It can be argued that should the shool fulfil the parents regarding a D.N.R. (Do Not Resusitate) Order, that the school was acting legal agent or representative of the parents and lacking any real ability to contact the parents allowed the child to die.


While such an order could be placed in the child's school records, it is up the parents to make the final determination as to when and where such an order is be carried out.

Should a school execute such an order, it would leave the school district subject legal action by the parents. Did the school have the right to act as the legal agent and/or representative for the parents in executing the order? The parents could sue (and very well win) the school district for failing to act in the best welfare of the child. The school is responsible for the health and well being of all students in the school. A D.N.R. is medical order issued by the parents, guardians, or legal representataives of the family. Did representatives of the School District in question sign the D.N.R. as well? Were members of the School District (Including the child's teacher) have a copy of the D.N.R. available to them so as to execute the parents wishes when and if the child was in medical crises? Who would be competant medical authority at the school that would make the determination that the child was in medical crises and therefore have the power execute the D.N.R.?

It is not the duty of any school district to devine the wishes of parents who have a child with severe or life threatening diabilities or illness, and what medical orders (if any) have been issued regarding the health and welfare of the child in question. Nor should the school be put in the position of having the final say so over such life and death issues.

The parents issued the order, not the school. The school cannot be responsible for executing such orders

[spare_change]

The School is under no obligation to sustain such an order. It can be argued that should the shool fulfil the parents regarding a D.N.R. (Do Not Resusitate) Order, that the school was acting legal agent or representative of the parents and lacking any real ability to contact the parents allowed the child to die.


I presume you sought professional counsel before posting. It would seem there is a difference of position, maybe because you're in a different state.

I have several attorneys who work for my firm, and they say that, in Colorado, it is exactly the opposite. When the parents enrolled the student, and the school accepted the student, the school is delegated care and maintenance of the child for the period in which he/she is under the supervision of the school. The school, in fact, would be a representative of the parents, even to the point of directing medical care in an emergency. For example, if the child were to fall and suffer a major injury, the school may direct prudent medical care if the parent cannot be contacted. (Most, if not all, parents sign the medical release forms at the beginning of the year. They are important, so make sure you read them.)

Because the parents retain overall responsibility for the child, the school must, by law, do as the parents wish. But, there is a small proviso - the DNR requirement only applies to medical professionals. In other words, if the school nurse administered CPR, she would be in violation of the DNR. However, if a teacher administered CPR, the school could not be held liable.

Or, at least, that's what Colorado lawyers say.

[Shiane]

As a parent I can't imagine making my child a DNR and then sending he/she off to school for a teacher or the lunch room lady to deal with it. I would want my child at my side, spending every last moment I could with him/her. I would want to be there when my child died, to hold him/her. I wouldn't want a school teacher to be the last thing my child saw.

Parents keep kids home from school when they have a cold, flu or fever. You don't send a sick child to school, why in the hell would you send a dying child to school! I just do not understand it at all and I certainly don't agree with it.

[cheerymissy_34]

I could not imagine sending my child to school if they were that sick and possibly dying

no teacher or school official should have to deal with that.
But it had to be a long hard process for any parent to make that choice and if that is their wishes than they should be followed