Can all parents really make good decisions

  1. 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" I have only been working in this unit 3 years and have seen this way too often. Why are Dr's so afraid to get the ethics committi involved. Any thoughs on this I am really starting to wounder why or where is someone what will make a good decision for a very sick baby like this
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    About mauigal

    Joined: Mar '04; Posts: 52; Likes: 32
    Staff RNC; from US
    Specialty: level 3 NICU

    44 Comments

  3. by   vamedic4
    It's sad that this is happening, but I can assure you mauigal that you are nottttt allooonnne!!!!! We had a patient who is literally a living, breathing, neuro devastated neural tube defect get a heart transplant!!!!!! WHY?????????

    It's so incredibly sad for those of us who have to take care of these little angels, and so frustrating at the same time. GRrrrrrrrrrrrrrrrrrrr....

    It's sad, but parents have to let go in their own time I guess...however long that may take.
  4. by   mercyteapot
    I'm not sure what an ethics committee could do. Perhaps support the doctor if he could convince the hospital's legal department to take this family to court, but as well all know, that is typically only done to compel parents to ''consent'' to tx, not to consent to palliative care. To answer your question about isn't there a point when someone decides that the parents aren't doing what's best for the baby, in this case, probably not. No one wants to be portrayed as the person who wants to kill babies, and like it or not, that is exactly what the media would do if a parent came forward with this story (and if they were hauled into court, you can bet they'd go to the media~!)
  5. by   babynurselsa
    You also have to look at it from the parent pov. I have been on both sides of this. I have taken care of more "train wreck" kids and it is draining do futile, painful, invasive intervention after futile painful, invasive intervention.
    We as nurses are able to look at it from a more pragmatic, and distanced perspective.
    As the parent ALL they see is their child. Some parents are able to grasp the futility and say "STOP", some view this as letting their child down. The brief visits may be more due to coping. Sometimes they won't make a decision hoping that essentially the child will make it for them. Sometimes gently letting them know that the little one has done his best but is losing the battle, and that they aren't a bad person, or parent by letting them go helps.
    God bless these kids and their parents.
  6. by   NICU Mama
    This is such a terrible position for EVERYONE to be in. Us as nurses knowing that we aren't doing anything to help the baby get better but just prolonging the suffering and inevitable, the poor babies, but also the parents.

    I personally think that the parents that don't agree to DNR's are put in a very difficult position. I think that they probably feel that it's their fault that their baby in the NICU in the first place, and now we want them to give the ok to let their baby die.

    I don't think it's fair that any parent should be asked to make that decision. I think the doctors should take on more of the responsibility by telling the parents there isn't anything more that can be done for their baby, and word it in a way of telling the parents that life support needs to be withdrawn, not asking them if it should be withdrawn. Parents do not want to make that decision and do not want to be responsible for their baby's death. I think that if the baby passes on his/her own, then the parent doesn't feel as guilty. Still very, very sad - but not as guilty as if they agreed to DNR or to remove life support.
  7. by   Gompers
    Quote from NICU Mama
    This is such a terrible position for EVERYONE to be in. Us as nurses knowing that we aren't doing anything to help the baby get better but just prolonging the suffering and inevitable, the poor babies, but also the parents.

    I personally think that the parents that don't agree to DNR's are put in a very difficult position. I think that they probably feel that it's their fault that their baby in the NICU in the first place, and now we want them to give the ok to let their baby die.

    I don't think it's fair that any parent should be asked to make that decision. I think the doctors should take on more of the responsibility by telling the parents there isn't anything more that can be done for their baby, and word it in a way of telling the parents that life support needs to be withdrawn, not asking them if it should be withdrawn. Parents do not want to make that decision and do not want to be responsible for their baby's death. I think that if the baby passes on his/her own, then the parent doesn't feel as guilty. Still very, very sad - but not as guilty as if they agreed to DNR or to remove life support.
    I agree with you 100%. What parent wants to make the decision? It's like the doctors are afraid to say that there isn't anything else they can do and that the think the baby should be taken off support, or at least made a DNR. They don't TELL the parents, they ASK them. "What do YOU want to do?" Well of course the parents want their child to survive! In other units, it's the docs that can say, "I'm sorry, there is massive brain damage, there is nothing else we can do..." but in the NICU it's like they can't get those words out of their mouths. I know we want to save every baby if we can, but sometimes I think the docs need to be completely honest and instead of giving the parents options, they need to just tell the truth - that we need to stop. Why do they have such a hard time doing this?
  8. by   canoehead
    At the point of futile care can't the doc decide to do no more? I mean not to take away support, but to not add more as more things go wrong? And provide lots of good pain meds...
  9. by   Gompers
    Quote from canoehead
    At the point of futile care can't the doc decide to do no more? I mean not to take away support, but to not add more as more things go wrong? And provide lots of good pain meds...
    They can. But sometimes, oftentimes actually, in the NICU...they don't.

    That's the problem.
  10. by   MomNRN
    I have unfortunately been in this boat. I gave birth to a severely brain damaged child who lived for 7 weeks. I was not an RN at the time.

    I thank God for a pro-active social worker. She took the time to come to us and explain our options in a language we understood. She was the one who said to us that we did not have to agree to all care suggested. She was the one who explained what a DNR was. She was the one who laid out the path of life our poor sick child was headed down.

    We never asked to meet with her. I think she made a point of visiting with all parents of children who were critically or terminally ill.

    We were intelligent parents who cared. We just needed someone to sit down with us and take the time to answer questions and not judge us. It is a VERY DIFFICULT choice to make.

    Our child died 2 days after signing the DNR. I am thankful we had great NICU nurses who supported our decision. They realized his time was near and when asked not to intervene with suctioning which had been done previously almost hourly, stepped away. They were very supportive.

    The caring staff and especially that social worker helped our family through a very difficult and painful process. God bless you for what you do - it is appreciated.
  11. by   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.
  12. by   llg
    As some of you are too young to have been working in NICU's under the Reagan Administration, let me give you a little pertinent history on this issue.

    Back in the early 1980's, NICU's were targeted by various "right to life" groups and groups that advocated for the handicapped. Doctors and hospitals were sued -- accused of denying care (and life itself) based on their opinions of the degree of handicapp. The Regan Administration created regulations that would deny federal reimbursement (i.e. Medicare and Medicaid payments) to any hospital whose NICU denied care to a baby based on degree of handicapp (brain damage.).

    Going even further, the "Baby Doe Regulations" as they were called were required to be posted prominently in each NICU, where all staff and visitors could read them. People were encourage to report any such activity -- thus giving any disgruntled family member or hospital employee a powerful weapon to use against any hospital with which they had a gripe. They could anonymously report that the NICU was withholding treatment from a handicapped child and trigger an investigation that could financially cripple a hospital.

    Over the years, those regulations have been softened significantly -- but many of today's physicians and senior administrators were in practice at that time. Most others were educated by people influenced by the events of that period. The effect lingers.

    I just thought those of you too young to be aware of those facts should hear the story. Today's practices are influenced by the events of the past. That doesn't make them right necessarily, but it does make them a bit more understandable.

    llg
  13. by   Gompers
    Quote from llg
    As some of you are too young to have been working in NICU's under the Reagan Administration, let me give you a little pertinent history on this issue.

    Back in the early 1980's, NICU's were targeted by various "right to life" groups and groups that advocated for the handicapped. Doctors and hospitals were sued -- accused of denying care (and life itself) based on their opinions of the degree of handicapp. The Regan Administration created regulations that would deny federal reimbursement (i.e. Medicare and Medicaid payments) to any hospital whose NICU denied care to a baby based on degree of handicapp (brain damage.).

    Going even further, the "Baby Doe Regulations" as they were called were required to be posted prominently in each NICU, where all staff and visitors could read them. People were encourage to report any such activity -- thus giving any disgruntled family member or hospital employee a powerful weapon to use against any hospital with which they had a gripe. They could anonymously report that the NICU was withholding treatment from a handicapped child and trigger an investigation that could financially cripple a hospital.

    Over the years, those regulations have been softened significantly -- but many of today's physicians and senior administrators were in practice at that time. Most others were educated by people influenced by the events of that period. The effect lingers.

    I just thought those of you too young to be aware of those facts should hear the story. Today's practices are influenced by the events of the past. That doesn't make them right necessarily, but it does make them a bit more understandable.

    llg
    Thanks for bringing this up. While I was still a child during the Reagan Administration, I have read about this topic before and you touched on some good points. It makes sense, too, because many of the attendings in NICU today were doing their residencies and fellowships in the 80's, and the Baby Doe rulings probably did have a lot of influence on them during that impressionable time in their careers.

    I have read a couple of books on this subject, and found a few more on Amazon for those interested:

    This is the one I own:

    http://www.amazon.com/Deciding-Who-L...e=UTF8&s=books

    Here are some others:

    http://www.amazon.com/Compelled-Comp...234229?ie=UTF8

    http://www.amazon.com/Mixed-Blessing...e=UTF8&s=books

    There is another one that seems to be out of print, because I can't find it anywhere on the internet. I have it packed away in a box somewhere and wish I could find it right now! It was called something like "Murder in the Intensive Care Nursery" and it had several case studies involving the ethical dilemmas inovolved with the treatment - or witholding treatment - of handicapped newborns. Some of the cases had the docs or nurses wanting to stop support, others had the parents wanting to stop treatment of infants that the medical staff felt were viable. Very interesting book...
  14. by   pleadingmom
    I have to jump in here, as a parent of 2 micro-preemies, I have to say that they are the light of our lives. YES it is very hard to raise a disbaled child and 1 with a severe learning disability, but I would not want it any other way.

    They called us in shortly after her PDA ligation and told us she was not going to make it through the night, she was extremely sick, there was no way that we were going to let her go that easy. we called in our priest, called my inlaws to bring us pillows and blankets and we spent the night at the hospital by her side praying and praying all night. In the morning a miracle happened, she slowly started to recover, and then it was uphill from there. See miracles do happen, and when you are emotionally attcahed you see that.

    I know clients who have had severly disabled children (not preemie) and were asked to let go, they never gave up, they were told they wwould never sit up or stand or walk, THEY PROVED THEM WRONG!!!!! Enough love and faith will get you through, no matter what the outcome, yes some people may not be able to handle that, but god works in mysterious ways, we are chosen for a reason.

    thanks for listening

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