Today I cared for a 23 weeker. In report this morning, I was told that the infant has a stage IV IVH, which the parents are unaware of (the child is 9 days old, the MD has known about the IVH since DOL #2, according to the MD's dictation in the chart). During rounds this morning I asked if the parents knew about the IVH and (when told that they did not) asked when they would be informed (and by whom: the MD, NNP, or me). I was told by the NNP and another nurse that the parents wouldn't be told about it because there was no treatment that would be performed.
I was stunned, and at a total loss for words. :angryfire As a new grad, am I just being naive? I just assumed that it was the right of every single parent to know exactly what was going on with their child...If I were in the parents' shoes, I would like to know about the IVH...
I broached the subject with my preceptor (I'm about half-way through my orientation period), and was told that it was up to the MD; since the MD didn't feel it needed to be mentioned to the parents, the nurse should not mention it to the parents.
When the parents visited this evening, I did not mention the bleed. I feel horrible about it...I guess to me it's kind of like "lying by omission". Am I being too hard on myself? Am I being to hard on the MD?
As a mom of preemies and working on becoming an NNP, I do think it is wrong to not inform the parents. Ignorance is not bliss, unless the parents specifically tell you that they do not want to hear about dire complications that cannot be treated, and even then I'd be uncomfortable.
I also think they need to have full-time translators. When I got out of school the first time, I was unable to find a job as a translator in a hospital, because they all used the telephone translating service.
Getting my MSN is a way actually for me to be able to use my language skills in a clinical setting.
This is definitely one of those situations that is truly ethical. From my experience in the NICU, a Grade IV IVH is pretty severe with severe limitations to the infant should she ever survive outside the hospital. Infants with IVH that severe, I have been told, will have massive mental retardation and disability. The bleed in the brain inhibits brain growth in essential areas and can actually cause the brain tissue to deteriorate. I took care of an infant with a Grade IV and after an MRI, the majority of his brain was missing. Its an awful thing. This infant later died due to a gram neg sepsis but this may have been the best thing for him. He (and his parents) would have had a long road of disability and diminished quality of life. I do NOT, however, agree with not telling the family about it. Educating the families on what is going on is one the most important jobs we do, and like you said, I would want to know what was going on. It sounds like the Dr. is avoiding a confrontation or having to tell the family their infant may not live or will have severe disabilities. Anyways, I hope this information has helped some. Situations like this is why I wish to go on to become a NNP so that I can make those decisions to educate families and not be told not to. Good luck with everything!
This is definitely one of those situations that is truly ethical. From my experience in the NICU, a Grade IV IVH is pretty severe with severe limitations to the infant should she ever survive outside the hospital. Infants with IVH that severe, I have been told, will have massive mental retardation and disability. The bleed in the brain inhibits brain growth in essential areas and can actually cause the brain tissue to deteriorate. I took care of an infant with a Grade IV and after an MRI, the majority of his brain was missing. Its an awful thing. This infant later died due to a gram neg sepsis but this may have been the best thing for him. He (and his parents) would have had a long road of disability and diminished quality of life. I do NOT, however, agree with not telling the family about it. Educating the families on what is going on is one the most important jobs we do, and like you said, I would want to know what was going on. It sounds like the Dr. is avoiding a confrontation or having to tell the family their infant may not live or will have severe disabilities. Anyways, I hope this information has helped some. Situations like this is why I wish to go on to become a NNP so that I can make those decisions to educate families and not be told not to. Good luck with everything!
It must be such a hard decision to make, withdrawing support. I've seen parents hang onto anything possible. We had one with a bad grade IV on one side but only a grade II on the other. The parents were given a few second opinions and they eventually heard an opinion from a developmental person that thought that yes, the grade IV side is profoundly damaged, but the grade II side was essentially normal and would recover. So basically the baby has half a brain that's normal. Nothing I hear about bad bleeds really address this type of scenario.
LilPeanut, MSN, RN, NP
898 Posts
What a sad story
As a mom of preemies and working on becoming an NNP, I do think it is wrong to not inform the parents. Ignorance is not bliss, unless the parents specifically tell you that they do not want to hear about dire complications that cannot be treated, and even then I'd be uncomfortable.
I also think they need to have full-time translators. When I got out of school the first time, I was unable to find a job as a translator in a hospital, because they all used the telephone translating service.
Getting my MSN is a way actually for me to be able to use my language skills in a clinical setting.