Taking a child off life support

elthia · May 19, 2006

But acting to sustain and support that denial in that parent is simply not worth a few hundred thousand dollars, the potential pain to the pt, the delay of grief to that parent, the burnout of staff in dealing with the high emotions but nevertheless INAPPROPRIATE care, and the potential injury or death to someone that could have APPROPRIATELY utilized that bed, but whose care was delayed as a result.

We don't have an obligation, as healthcare providers or as a society, to provide futile care.
And it's NOT pt advocacy to provide such care: for pts or their family members. And most healthcare providers see on a daily basis that this is true even as we IGNORE IT.

I agree...sometimes you have to hurt someone to help them...and sometimes that hurt is of an emotional nature. No one is helping the parents by allowing them to stay in such a state of denial.

ZASHAGALKA, RN · May 19, 2006

I agree...sometimes you have to hurt someone to help them...and sometimes that hurt is of an emotional nature. No one is helping the parents by allowing them to stay in such a state of denial.

Yes.

~faith,

Timothy.

**canoehead, BSN, RN** · May 19, 2006

Hmmm, it's a no win no matter how you slice it.

I can see the parents going ballistic if the child was taken off the vent, but when he gets pneumonia, will the docs have to add antibiotics? If they decline to add further treatment, is that a compromise?

I guess I have no solutions.

tvccrn, ASN, RN · May 19, 2006

I have read in this thread that the patient shot himself, yet after reading all three news stories I find that there is no mention that is was him who did it. They all say it was an accidental shooting and there is no place saying who was holding the gun.

There is also mention that the hospital has tried to transfer the patient, but no one will take him. So, all the posters here who have said that they should place this child in LTC should realize, they have tried. What else can they do but keep the child were he is if no one will accept him. That places the burden solely on the hospitals shoulders to provide care at the probable expense of the taxpayers.

Yes, we as nurses, shouldn't pay any attention to who is paying for the care of the child BUT as a taxpayer I have every right to pay attention.

If every person who contests the findings of the brain death protocol is allowed to keep patients in health care indefinitely then all hospitals would be full.

There is a reason for the determination of brain death and having gone through it myself (with a spouse, not a child) I can certainly understand the need for allowing the family to assimilate the outcome. However, there should be a limit placed on the amount of time. I had a cousin who was in an accident and declared brain dead within 12 hours of the accident. If my aunt would have pressed it and been allowed to keep him on support until SHE was comfortable with the thought of him being gone, he would have been on support for 5 years. Even after his death, burial and for 5 years afterward she said that we were all hiding him and wouldn't let him see her. A far-fetched example, but one that would be a possibility if we let the family determine when to remove a patient after the determiniation is made following the approved state guidelines.

Death is not welcome, it's seldom expected, but it is a fact of live.

MultipurposeRN · May 19, 2006

If this poor kid is truly brain dead then nature will take it's course. Maybe there is no legal or ethical obligation to provide futile care, but the mom just may need more time to come to grips. Better for everyone if she can finally accept that he's died or he finally goes on his own than for the hospital to force the issue if they don't have to right now, otherwise she may never get past the grief. I think sometimes we forget that not everyone can accept tragedy in the time frame we think they should..and sometimes, tragedy is never accepted. The Mom may not ever accept this, but at least if he goes on his own she won't feel that he's been murdered. Of course he wouldn't be, but her perception is that he would be, and that's a hard thing to inflict on this lady who's already going through hell.

MrsWampthang, BSN, RN · May 19, 2006

i have been reading this thread off and on, and it's interesting to me that the suggestion is made to send the child to ltac. i work in such a facility and see cases like this a lot. believe me when i say that futile cases such as this are draining on the staff. seeing the families keeping their families on life support for their own sake is truly heartbreaking......for the patient. we take excellent care of all of our patients, but to see a patient lay in the bed day after day and do nothing but exist for the family, who often times don't even come to see them, it's just cruel. i know it is probably harder to make that decision if the patient is a child though. i had to help my dad make the decision to let my mother go. it was hard and she died a week after we took her off life support. i still question myself about whether she wanted to die or not. she would never have been able to go home, she was in ill health before she went into the hospital with a ruptured stomach ulcer, so she would have had to go to a nursing home at further physical stress to my dad. was it the right decision? i feel in my heart that it was; and i know my dad agrees. but if it had been one of my children, i would hope that my nurse's wisdom would overrule my mother's heart, especially if it meant that someone would live on with my child's organs. as for the argument about a waste of resources, yeah, i guess it is at that. i have seen a lot of waste of resources during my time of being a medic, an er nurse and now an ltac nurse. i just don't know what the answer is except to hope that that mother has someone who will be brutally honest but compassionate with that mom and will eventually make her see the truth and she will let her son go. god bless her.

pam

MaxineH · May 19, 2006

MultipurposeRN, I totally agree with you, well said. Everyone mourn and grieve differently. Not until something tragic happen to you or someone you love dearly, then you'll understand and know what that mother is going through; and trust me, I'm speaking from experience. We sometimes forget that we are only human. She needs time to accept, why should she be deprive of it?

I will not go too much into my experience because my eyes are teary right now, but my first daughter when she was 4 years old went into a coma for 3 1/2 weeks, the doctors wrote her off as dead, they were just waiting to pull the plugs, and I argued with those doctors everyday. I stayed there with her in one suite of clothes, and the only thing that could go down my throat was water. I lost faith, and started cursing GOD for taking my only child from me. She's now in Canada at MED. School.

fergus51 · May 19, 2006

I sometimes think it would be kinder for the parents if there was a certain time limit after brain death had been determined where the person HAD to be taken off support. The reason I say this is because brain death is permanent. Unfortunately this mother isn't going to be lucky like Maxine. Her child is dead but she may just not want to be the one who makes the decision to take him off the vent. I've seen that with families before. When the doctor finally goes in and says "We have to take him off the vent. Bring your family in tomorrow, you can sign the papers and say your goodbyes before we let him go peacefully" it seems like a relief to some of them. The doctor isn't making the decision for them and still has to get their consent, but he makes it more definite.

elkpark · May 19, 2006

If this poor kid is truly brain dead then nature will take it's course .. at least if he goes on his own she won't feel that he's been murdered. Of course he wouldn't be, but her perception is that he would be, and that's a hard thing to inflict on this lady who's already going through hell.

But nature HAS taken its course, and he HAS "gone on his own" -- he's already dead. The ventilator, fluids, etc., in the ICU are just maintaining the cadaver.

I don't doubt that the mother is irrational with grief; any one of us would be -- but that's exactly why she should not be making important decisions at this time.

ortess1971 · May 19, 2006

"Futile Care" can be a very subjective thing. Brain death is one thing, not much subjective about that, but sometimes medical professionals(doctors especially) write people off much too quickly. My sister had meningitis(bacterial)as an infant. My mom stayed there every day and there were some doctors that thought she was deluding herself as well. My sister is now a beautiful, healthy and happy 27 year old. My problem is when people think just because someone is handicapped, old(but mentally "with it") or sick that their life isn't worth living anymore. As a nurse, I figure my job is to advocate for that patient and family in a compassionate manner. I'm not an accountant and I'm not a hospital adminstrator either. I refuse to let $$$$ factors dictate my nursing practice. Now, this particular case, I think this child will not recover and I think the mom is in denial but compassion is the way to approach this woman, not disdain or contempt or thinking she wants to "torture" her child. It's easy to say what she should do because most of us aren't living her reality. These things take time. Just my 2 cents....

hospitalstaph · May 19, 2006

This boy was just taken off of life support in the past hour. A doctor from outside of KUMed agreed with the hospital and the mother agreed to take him off of life support.

T

Gompers, BSN, RN · May 19, 2006

I sometimes think it would be kinder for the parents if there was a certain time limit after brain death had been determined where the person HAD to be taken off support. The reason I say this is because brain death is permanent. Unfortunately this mother isn't going to be lucky like Maxine. Her child is dead but she may just not want to be the one who makes the decision to take him off the vent. I've seen that with families before. When the doctor finally goes in and says "We have to take him off the vent. Bring your family in tomorrow, you can sign the papers and say your goodbyes before we let him go peacefully" it seems like a relief to some of them. The doctor isn't making the decision for them and still has to get their consent, but he makes it more definite.

I agree 100%. In our NICU, we rarely see complete brain death, but rather we'll see massive, irreversable damage. I don't just mean a brain bleed, I mean where hydrocephalus has taken over the brain to the point where the good tissue has just completely atrophied into nothing. Times like this, instead of TELLING the families that they will remove life support, the docs will ASK the families if they wish to do that.

Now, what parent is going to say, "YES! I thought you'd never ask!"

But when the docs say, "There is nothing else we can do. The damage is irreversable. There will be no quality of life. Bring in your family so we can take the baby off life support and let him/her die peacefully and with dignity," then 95% of the time, the families agree. They seem to be relieved of the burden of having to be the one who decides.

In other countries, I've heard that the docs have more of a say in what happens in these situations. But in the USA, the customer is always right, and we will do whatever these familes say, no matter how futile the situation might be.

This is by far the hardest part of pediatric nursing.