Can all parents really make good decisions - page 3

What help is there really available for a hoplessly ill infant with bilat grade 4 bleeds, deaf, blind on an oss vent with C02's in 100's,ph's 7.00-7.007 septic, hydroceph with shunt, on Vec gtt,... Read More

  1. by   danissa
    if you can find news, look at the case of Charlotte Wyatt, (UK). Parents fought through the courts after docs wanted DNR on this poor babe. Tragic story, parents won their case, but this week Charlotte will be three years old, still living in hospital as the parents had other children and have now divorced. Father tried to take his own life, unstable for the wee girl to live with, and the mother has her other children to care for and would not be able to manage Charlotte at home. she has visited this babe around three times in nine months, (five miles is too far to travel!) At the time of their fight they felt like it was a victory, but now this poor wee girl is left living in a hospital, with severe disability and foster parents are being sought for her. In hindsight how good was their decision? lots more to this case, sure you will find stuff on net about it.
  2. by   nell
    ...bilat grade 4 bleeds, deaf, blind on an oss vent with C02's in 100's,ph's 7.00-7.007 septic, hydroceph with shunt, on Vec gtt, morphine gtt, anitbiots, vessopressors....
    We're not talking about a septic kid or even a micro preemie w/PDA here. Has ANYONE ever seen a kid like this go home - even with severe disabilities?


    Quote from TheCommuter
    Some parents are too emotionally detached to make decisions that would be in the best interest of their child. Other parents lack the educational level and comprehension of the current situation facing their child and, therefore, aren't capable of making totally informed decisions.
    If you do not work in a NICU, you probably don't have the "educational level and comprehension of the current situation" to understand what the OP is talking about.

    <end rant>
    nell
  3. by   33-weeker
    Quote from nell
    If you do not work in a NICU, you probably don't have the "educational level and comprehension of the current situation" to understand what the OP is talking about.

    <end rant>
    nell
    I'm sure most professionals, when faced with a situation in which there is a question of parental understanding, could explain it in plain enough language so that the most simple person would understand that their child has no chance of recovery, and that coding them repeatedly is only torturing them and postponing their eventual death.
  4. by   2curlygirls
    We're not talking about a septic kid or even a micro preemie w/PDA here. Has ANYONE ever seen a kid like this go home - even with severe disabilities?


    My old primary was like that. She was 6 months old when she left the ICU the first time only to return shortly thereafter. She is now almost 2, still on O's, still has a G-Tube, has severe CP but she's home! Fortunately mom's an NP and dad's a PT and they have lots of family in the area. Oh and she's a twin. He fared much better oddly enough.
  5. by   2curlygirls
    Oh and I once had a family with known hydrops babe who didn't find out how babies came out until their NICU consult! They were young and spoke a Oaxacan dialect so it was hard to even find an interpreter.
  6. by   RainDreamer
    I think after a while it comes down to quality of life issues. These kids have no voice. We're not heartless NICU nurses, but we hate to see these kids suffering day after day after day. It's incredibly heartbreaking.
  7. by   BSNtobe2009
    I agree that the mother may be in denial of how grave her baby's situation is, and maybe it's time for someone like the social worker to sit with her and explain it one more time.

    Now for me, a DNR is very different from disconnection of life support. I don't think there is much suffering in a DNR, but disconnection of life support, I have huge issues with, though personal. I know as a future RN this is something I'll just have to accept.

    One of these days, I hope, it will be legal for families to "opt" for a type of euthanasia when someone is disconnected from life support or others in vegetative states (like in the Florida case with Terri Sharvio), so death is quick and not prolonged.
  8. by   Gompers
    Quote from BSNtobe2009
    I agree that the mother may be in denial of how grave her baby's situation is, and maybe it's time for someone like the social worker to sit with her and explain it one more time.

    Now for me, a DNR is very different from disconnection of life support. I don't think there is much suffering in a DNR, but disconnection of life support, I have huge issues with, though personal. I know as a future RN this is something I'll just have to accept.

    One of these days, I hope, it will be legal for families to "opt" for a type of euthanasia when someone is disconnected from life support or others in vegetative states (like in the Florida case with Terri Sharvio), so death is quick and not prolonged.
    While I understand what you are saying...

    When it comes to NICU patients, sometimes discontinuing life support brings much LESS suffering than a DNR. The vast majority of very very sick NICU babies, if taken off life support, pass away very very quickly. It's not like removing a feeding tube and letting them wither away - it's discontinuing ventilator support which is often the only thing keeping them alive. Others who might survive for longer are able to go home with hospice care and comfort measures. A DNR, however, means that we are still going full throttle with maximum life support, and there is a good chance the baby might never code, and thus will spend a very long time on life support - often with no chance of improvement.

    I've been in the NICU for eight years. I have seen a few DNRs in my time where the baby suffers for months before finally coding. On the other hand, I have seen many babies taken off life support, and it is often the more peaceful, humane option in those cases. If the baby passes away quickly, it is obvious that he or she was too sick and it's a relief to see them out of pain. Or if the baby survives for several days/weeks/months, then at least the parents get to spend some time with their child who is finally free from painful tubes and needles.

    Just some thoughts from the other side.
    Last edit by Gompers on Oct 23, '06
  9. by   33-weeker
    i suppose i should clarify my previous comments...
    dnr, comfort care, and even turning off a vent for a hopless case is one thing. euthenasia or stopping feedings for a patient breathing on their own is entirely another. i am not in favor of killing the infirm at all.
  10. by   2curlygirls
    Ugh, I'm just remembering a heartbreaking case where we didn't feed a baby. She was born at 37 weeks, mom noticed decreased fetal movement. Babe developed petechiae on her abdomen moments after birth. Gith increased rapidly and abdomen got very dusky. Transferred to us for emergent x-lap. babe had ZERO viable gut. She was taken off support. She received ATC IV morphine until the IV blew. Then changed to nasal Fentanyl. She withered away. Her attending said that this was the kindest way to let her go because dehydration released endorphins.
    OMG, I'm totally crying right now. I was about 20 weeks PG with my first when I took care of this beautiful baby. I asked to not care for her again because I couldn't do it without bawling. Her parents were so sweet. It took her 10 days to pass away. I still have a picture of her before she died. Sorry, I needed to get that out.
  11. by   Gompers
    Quote from 2curlygirls
    Ugh, I'm just remembering a heartbreaking case where we didn't feed a baby. She was born at 37 weeks, mom noticed decreased fetal movement. Babe developed petechiae on her abdomen moments after birth. Gith increased rapidly and abdomen got very dusky. Transferred to us for emergent x-lap. babe had ZERO viable gut. She was taken off support. She received ATC IV morphine until the IV blew. Then changed to nasal Fentanyl. She withered away. Her attending said that this was the kindest way to let her go because dehydration released endorphins.
    OMG, I'm totally crying right now. I was about 20 weeks PG with my first when I took care of this beautiful baby. I asked to not care for her again because I couldn't do it without bawling. Her parents were so sweet. It took her 10 days to pass away. I still have a picture of her before she died. Sorry, I needed to get that out.
    We had a very similar case in the past. I suppose they could have put in a Broviac and sent her home on TPN until she qualified for a bowel and liver trasnplant, but I think there was something else going on that made it a long shot that the surgery would even work. So they decided to just take her home. She got IV narcotics for a few days while she healed from the ex-lap, then was discharged with no IV fluids. She was followed by hospice and home care, passed away after about two weeks. They were giving her sublingual morphine, I believe. But at least she got to be at home with her family 24/7 and the home care nurse said her pain was well controlled.
  12. by   33-weeker
    Quote from 2curlygirls
    ugh, i'm just remembering a heartbreaking case where we didn't feed a baby. she was born at 37 weeks, mom noticed decreased fetal movement. babe developed petechiae on her abdomen moments after birth. gith increased rapidly and abdomen got very dusky. transferred to us for emergent x-lap. babe had zero viable gut. she was taken off support. she received atc iv morphine until the iv blew. then changed to nasal fentanyl. she withered away. her attending said that this was the kindest way to let her go because dehydration released endorphins.
    i can see where feeding in a case like this might cause more suffering, not less. i could see holding feeds as appropriate in such a case.
  13. by   kate1114
    Quote from mauigal
    What help is there really available for a hoplessly ill infant with bilat grade 4 bleeds, deaf, blind on an oss vent with C02's in 100's,ph's 7.00-7.007 septic, hydroceph with shunt, on Vec gtt, morphine gtt, anitbiots, vessopressors, with a Mom that says no to DNR but does not visit and when she does visit stays 10 min. Does he just stay in this "hellish limbo" . Is there a point or case when someone says "Ok this parent really does not know what is best for this baby"
    It depends also on how the information is presented to the family. I worked in NICU for 10 years before finally leaving this year. I have worked in a few units where the docs were good about presenting options to the parents, and giving realistic expectations based on science and statistics.

    The unit (teaching hospital) that I recently quit featured docs who switched service frequently (usually weekly) and seemed to put these discussions off until the next doc could arrive. I would often hear about conversations in which the doc would talk about a 24 weeker, grade IV bleed, on the oscillator who would one day go to college. While I suppose there is a chance, this is NOT the typical presentation for this type of infant. But the parents were told that their babies would be "fine". I think that this does a terrible injustice to the parents. Yes, their baby may be "fine", or he/she may be somewhat healthy but struggle through school. Or he/she may be blind, deaf, and severely impaired. Not to say that this child deserves any less chance at life, but the parents need to know the whole story before making huge decisions.

    On the flip side, we had parents who would refuse to hear negative news (including one mom who was famous for hanging up on the docs if they told her anything bad about her infant), parents who would blame the nurses/docs for any possible downturn in their infants' condition, and parents who would spend the entire time at the bedside making out with their boyfriend while the mom's infant was crying in the crib next to them. Parents are not always focused on what is best for their child, and that is sad. Thankfully, this seemed to be the exception in the units where I worked.

    It's so hard to tell where people are coming from. Are they in denial? Are they misunderstanding the severity of their child's illness? Are they preoccupied with a myriad of other issues at home (being evicted from apartment, domestic violence, care of other children)? Or do they cope by using humor that may seem inappropriate?

    Getting back to the OP, even if the baby had a DNR, it may not change the fact that he/she is in "hellish limbo". I've seen babies with similar cases who are DNR status, and who live for weeks or months without coding. Sometimes they improve for a little while and then deteriorate. As others have mentioned, an ethics committee can help point out options to the parents, but they have to be an active part of this as well. An ethics committee can override a parent's desires, but many hospitals won't go this far for fear of bad press.

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