flat line eegs...

  1. Our unit has had a string of sad babes lately who have had huge in-utero assaults with complete neuro hits. I'm curious how other units deal this these kiddos - the ones who have flat eegs, blown pupils, documented extensive PVL/ liquification of brain matter, not response to stimuli, etc. These aren't micros with bleeds, but rather close to term/term babies who have been down for a long, long time prior to resucitation. Do your docs ever just 'decide' to take kids off of vents for parents who can't seem to grasp the reality of this situation (after adequate time for processing/coming to terms with the situation)?? It's been frustrating watching all of the pain, money, unnecessary trauma experienced by everyone from the baby to the parents to the healthcare system at large. I get so frustrated by parents who continue to want 'everything done' even when the bad, bad outcome is SO obvious and proven. I'm told that there used to be a day when docs would just say "I'm sorry, we've done everything we can, but we need to take your baby off of life support and we're going to do so," but it never seems to happen in our unit. Is it a sign of these legal times?? How do you all handle it??

    Heavy heart, but mad and frustrated as well...:uhoh21:
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  2. 23 Comments

  3. by   fergus51
    In my experience this is one of the hardest things about the NICU. It breaks my heart too and I don't always deal with it really well when I get off shift.

    Docs don't take these kids off the vent if the parents don't want that. We do try to educate them about the realities of the situation (no, your son won't be able to play football) and our unit has been getting better at that. One nurse even arranged for a family to meet a former NICU graduate who had the same type of condition that their child could look forward to (trache, feeding tube, 24 hour care, etc).

    In the end, the decision is the parents' and theirs alone. I comfort myself by believing that those poor babies are unaware of all we are doing to them. It does upset me when I see parents who are just completely unrealistic about their child's prognosis because I know they are the ones who are going to lose it when it comes time for the child to come home. They just aren't properly prepared and I feel like we failed them even though I know some people will just never get it. Those are the parents who will wind up giving their child up to a long term care type facility and never visiting.
  4. by   dawngloves
    The term kids are the hardest for me.
    You just hope that the parents realize the kindest thing to do is to let the baby go. Most do, but I have seen some that have not and it depresses us beyond beleif.
  5. by   sunnysideup09
    I have had my share of dealing with families of these term/near term infants with poor outcomes. It is frustrating for the parents and the staff. One needs to really look deep within themselves to their own values to understand how to best handle the situation.

    In our NICU, our docs do not take the infants off the ventilator. Actually, you set yourself up legally, if done prematurely. Parents are full of emotions the first couple of days, so haste decisions aren't usually what a parent wants. To help the parents come to term with the fact their child will have a poor prognosis and possibly no brain activity, we do several things. An eeg is done around 72 hours after the insult/birth occurred. If the eeg is flat, we wait 7 days to confirm a flat eeg. The neonatal brain can do wonders. If we get a second confirmation of a flat eeg, we do a cerebral brain flow study. That usually leads to the ultimate decision to withdraw. But first we make sure Gift of Hope has been notified since the infant is possible for full or partial organ donation.

    Christine
  6. by   sparkyRN
    Our experience with the doctors and parents is very similar. There are no rash decisions to withdraw support until all the usual tests are run and often repeated. The difficulty and frustration comes from those few families that are waiting and praying for a miracle. You explain that movement they see is because of a seizure; he's really not reaching for you. Once a strong family member gets it in their head that there is hope, it's a long slow process to convince them otherwise.
  7. by   sirI
    e
    Quote from rainbows4me
    . ........Do your docs ever just 'decide' to take kids off of vents for parents who can't seem to grasp the reality of this situation (after adequate time for processing/coming to terms with the situation)?? ...... I'm told that there used to be a day when docs would just say "I'm sorry, we've done everything we can, but we need to take your baby off of life support and we're going to do so," but it never seems to happen in our unit. Is it a sign of these legal times?? .....

    Heavy heart, but mad and frustrated as well...:uhoh21:
    Hello, rainbows4me,:angel2:

    Yes, most definitely litigation issues. I know, it is one ..... if not THE most frustrating and heart breaking scenerios. But, when a healthcare provider starts to practice euthansia, well...........
  8. by   rainbows4me
    Quote from siri
    e

    Hello, rainbows4me,:angel2:

    Yes, most definitely litigation issues. I know, it is one ..... if not THE most frustrating and heart breaking scenerios. But, when a healthcare provider starts to practice euthansia, well...........
    But my internal belief says that euthenasia involves "acting on" in order to provide death... Is stopping futile medical care euthenasia? Or is it allowing death to occur? We act on and on and on to lengthen the death process - in many many times to the detriment of our patient (pain and suffering). I'm sure you are right in legal terms - but I just can't believe that what we do sometimes in the name of the law and 'family rights' is the right and just thing to do.

    Our unit has had two similar cases within a short period of time. One family chose to remove life support (even before our docs had come to that themselves- which created an interesting scenario). The other family continues to want "everything done" - even when many of our consults for specialist treatments have refused to treat this patient because it is futile. Argh! I am sorry to sound so cynical - it's been a rough week - as I've had both of these kiddos... I go back and forth between fury and tears!

    Peace,
    Rainbows
    Last edit by rainbows4me on Sep 21, '05
  9. by   sirI
    Quote from rainbows4me
    But my internal belief says that euthenasia involves "acting on" in order to provide death... Is stopping futile medical care euthenasia? Or is it allowing death to occur? We act on and on and on to lengthen the death process - in many many times to the detriment of our patient (pain and suffering). I'm sure you are right in legal terms - but I just can't believe that what we do sometimes in the name of the law and 'family rights' is the right and just thing to do.

    Our unit has had two similar cases within a short period of time. One family chose to remove life support (even before our docs had come to that themselves- which created an interesting scenario). The other family continues to want "everything done" - even when many of our consults for specialist treatments have refused to treat this patient because it is futile. Argh! I am sorry to sound so cynical - it's been a rough week - as I've had both of these kiddos... I go back and forth between fury and tears!

    Peace,
    Rainbows
    Don't be sorry, Rain......please, vent here.:icon_hug:

    I know, it is a most frustrating feeling. Until society cries "foul" and our laws change, this will forever be a thorn in the side of compassion.
  10. by   fergus51
    Some states do allow medical professionals to force the issue. Texas is one I believe. One hospital went to court and got an order to allow an infant to be taken off a ventilator. Doctors are not legally required to provide futile care, if anything they have an obligation not to. But, in most situations, they can't make the parents take the baby off the vent so you wind up with these poor babies in limbo (still alive and getting basic care but no extra treatments from specialists, etc).
  11. by   cardiacRN2006
    Think about the parents. They can't see the proven stats or high morbitity and mortality. They just see their precious baby. I have been trying to have a baby for a long time now (too long), and I can see myself finally having a baby, and having it end up in NICU. I would want to spend every minute with my baby-I would want to be a mother for as long as I could. I would want my baby on this planet for as long as possible.
  12. by   Gompers
    Quote from cardiacRN2006
    Think about the parents. They can't see the proven stats or high morbitity and mortality. They just see their precious baby. I have been trying to have a baby for a long time now (too long), and I can see myself finally having a baby, and having it end up in NICU. I would want to spend every minute with my baby-I would want to be a mother for as long as I could. I would want my baby on this planet for as long as possible.
    You remind me of a mom that had twins up in our NICU. They were born at 23 weeks, and the smaller twin (<500gms) died after 36 hours. The other twin had a very bad course and it was pretty obvious that he was terminal by the time he was 3 months old. But no matter how many docs, nurses, social workers, or chaplains talked to the mom - she refused to take the baby off the vent or make him a DNR. Ethics was called in, but since mom had a full understanding of what was going on with the baby and what the outcome might be, we were to keep aggressively treating the baby. He lived until he was about six months old.

    I was the primary nurse, and for those last few months, every day another staff member came up to me and made it quite obvious that they disagreed with this treatment. I would tell them that mom was aware of everything and that we couldn't make her discontinue treatment. It really got to me - I mean EVERY DAY people bugged me. There wasn't much more I could do! They considered it abuse to keep him alive. Many thought that mom believed the baby would get better some day, like some kind of miracle would happen. But the thing is, she didn't think that. She figured he wasn't going to make it. She just wanted to hold on to him for as long as she could. Many called it selfish, but others could really see her point - if you know your child won't live a full life, wouldn't you want to keep them alive for as long as you could? Isn't it natural to feel that way?

    My coworkers never really believed me that mom was realistic. They weren't at the bedside to hear her say things that told me she had agonized over this decision and that she knew people didn't agree...

    "How can I make the decision to end someone's life, much less my own child's?"

    "My mother-in-law wants me to get a job. How can I? He's in the hospital here, and if he ever gets home, he'll probably be confined to one room with all kinds of machines - what, is she going to babysit for me? She had one kid and was terrified. How is she going to handle something like a trach or central line?"

    "I know that people don't agree with keeping him alive. I know that some of the nurses are really against it. All I ask is that they not be assigned to my baby, I think it's better for everyone that way."

    "Do people honestly think I don't know that he's going to die? I already had one baby die up here, I know it happens. Why do you think I spend twelve hours a day at his bedside? I want to spend every minute I can with him, because I don't know how long he'll be in my life."

    Maybe had our docs not given the choice to take him off support, but rather just told the parents they were stopping...it might have been different. But the team never did that, so we'll never know.

    The day he died, it was obvious his body was shutting down. The attending called and told mom, and you know what? She was totally accepting of it. She didn't want us to code him, do any more labs, make any more changes. She just wanted him to get morphine, and wanted the whole family to get the chance to hold him before he died. He never was taken off the vent, he passed away still attached, in his mother's arms.

    This was such an extreme case, but I wanted to post about it because I thought it was relevant.
    Last edit by Gompers on Sep 21, '05
  13. by   prmenrs
    Quote from Gompers
    I was the primary nurse, and for those last few months, every day another staff member came up to me and made it quite obvious that they disagreed with this treatment. I would tell them that mom was aware of everything and that we couldn't make her discontinue treatment. It really got to me - I mean EVERY DAY people bugged me.

    That used to happen in our unit, too. We finally addressed it in a staff meeting, basically pointing out that it was very UNsupportive of a co-worker who had plenty to deal with taking care of a very sick baby and mother and his or her OWN emotions.

    I strongly suggest that, if you or any of your colleagues are caring for a baby in this situation, bring it up @ a staff meeting, or just take it upon yourself to offer the nurse relief for a short break, to watch the baby during lunch, help getting supplies, or whatever you can do to BE supportive to her. And encourage others to do so as well. And NOT to bring up the ethical issues, criticize decisions, or any of the other similar discussions that just drain emotional energy from the nurse. Offer help and support to mom as well.

    It really makes a HUGE difference in dealing w/a tough situation.

    Just my
  14. by   Gompers
    Quote from prmenrs
    That used to happen in our unit, too. We finally addressed it in a staff meeting, basically pointing out that it was very UNsupportive of a co-worker who had plenty to deal with taking care of a very sick baby and mother and his or her OWN emotions.

    I strongly suggest that, if you or any of your colleagues are caring for a baby in this situation, bring it up @ a staff meeting, or just take it upon yourself to offer the nurse relief for a short break, to watch the baby during lunch, help getting supplies, or whatever you can do to BE supportive to her. And encourage others to do so as well. And NOT to bring up the ethical issues, criticize decisions, or any of the other similar discussions that just drain emotional energy from the nurse. Offer help and support to mom as well.

    It really makes a HUGE difference in dealing w/a tough situation.

    Just my
    I spent many mornings in my manager's office talking about this situation. All that came of it was that a series of ethics meetings took place on the unit so that the staff could express their opinions, and so the ethics committee could explain that they were involved with the case and supported the family. I didn't attend these meetings, as I felt my presence might prevent other nurses from really expressing themselves. I don't remember feeling any more unit support afterwards. The whole situation just sucked. We haven't had such an extreme case since, but I KNOW that if it happens again, I will make it a point to make sure the nurses who care for that baby feel supported. It's not our choice to keep a baby alive, and just because we might be close to the family, it doesn't mean we have the power to persuade them to change their minds! Instead of stating the obvious - it's a futile case and we're doing more harm than good - why not just be there for the nurse when she needs a friend. It's exhausting caring for infants in these situations, and even something as simple as a hug can really help.

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