Warning: I need to vent!

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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?

Thanks for listening guys....you're all fabulous!

M

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Please educate me on what an IVH is. Some kind of bleed but where.

Sounds unethical to me for you to be instructed to not say anything.

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Please educate me on what an IVH is. Some kind of bleed but where.

Sounds unethical to me for you to be instructed to not say anything.

IVH = Intraventricular Hemmorhage, which is a bleed in the ventricles of the brain. A stage IV is the worst degree. Grading goes from I to IV, with a stage IV resulting in the largest amount of bleeding and ventricular dilation. I hope this helps...if someone can explain this better please feel free!! After all, I am a "newbie" at this! :)

M

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AAACK! And they were to do nothing? Why? Did the baby have something else on top of the IVF that would make treatment harmful? I can't believe it. No wonder you're so upset. Talk about your "caught in a tight spot" scenario! :angryfire

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AAACK! And they were to do nothing? Why? Did the baby have something else on top of the IVF that would make treatment harmful? I can't believe it. No wonder you're so upset. Talk about your "caught in a tight spot" scenario! :angryfire

I have absolutely no clue...when I got home from work tonight I sat down and tried to do some reading about the subject, but the text that I had wasn't very helpful...The only reason I can think of would be her gestational age...but to me, the fact that she's only a 23-weeker shouldn't have a bearing on the decision to-treat-or-not-to-treat the bleed. I mean, we are doing everything that we can to sustain her...mechanical ventilation, pressors, TPN. I just don't know.

M

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Well 23 weeks does seem a little small even for a healthy baby let alone a sick one. Seems sad for them to treat him/her like that though. I'm sure if it was their baby they would want anything possible done. Maybe they have instructions to not treat in this situation because of hospital policy? Money and all that red tape? So sad. :o

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Specializes in ER.

Is the nurse manager aware? and do you have an ethics committee?

I agree that it is the parents' right to know and that the doc should tell them, but I also think that it would be inappropriate for the RN to tell them- because you can't answer all the questions that will come up, including "why didn't the doctor tell us this?" Send it up the chain of command. Even though you are right you could lose your job for second guessing the "team" (such as it is).

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Specializes in NICU, Infection Control.

Canoehead is right-on. Your unit should have a social worker. Ask the NM why there hasn't been a family conference. One should be held ASAP, including attending MD, Social Service, and anyone else (chaplain?) involved w/care. Parents should be offered the opportunity to have any other family member there as well. And I would second the ethics committee recommendation.

Any 23 wker is, by definition, NOT healthy. Intraventricular hemorrhages can carry lethal consequences, and it's a very rare 23wkr who escapes some sort of a bleed, doesn't have to be gr IV, tho, and there are lots of other complications to choose from.

The baby has a high likelihood/probably of developing hydrocephalus, cerebral palsy and severe disabilities. The only treatment is to shunt the patient, they can't do that yet. Right now, unless something new has been developed, they need to stablize the baby. A bleed that big can send the baby into shock. They'll probably follow the head ECHO to see if the ventricles start getting bigger. Then Neurosurgery will be consulted. They won't be able to do much until he's on full feeds and tolerating them VERY well. (Think what would happen to a VP shunt if the baby develop NEC.)

I might try to find back issues of Neonatal Network to see if there's a recent review article on IVH. You said you did some research--what book did you look in?

You're right to be uncomfortable w/the situation. Parents should be informed and updated frequently, and stuff like this shouldn't be hidden, if only because sooner or later, someone will slip up and mention something, and the parents will sooo not be happy--so long trust.

Best of luck to you. Not all units handle situations like this in this manner.

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Specializes in NICU, PICU, educator.

Whoa...that is totalllly wrong! We will bring it up in a round a bout way...Oh, have you heard about the HUS yet? I'm willing to bet that these parents don't even know one was done! That is the first things we tell parents...we will be getting a HUS on day 2-3 and there is a high incidence of bleeding. The parents should have had all this explained to them prior to delivery if mom was in PTL.

No, not all NICU's are like that. I would go have a discussion with you NM about this. It is not our place to tell a parent something that devastaing. That baby will be pretty devastated if he lives.

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I was reading in my "Handbook of Neonatal Intensive Care" by Merenstien last night. I re-read it this morning when my head was a little clearer and, according to what it said, IVH isn't very treatable...just gotta treat the symptoms.

We have one social worker for our unit, but she wasn't there by the time the family got to the hospital last night (around 6p).

Another part of the communication problem is that the family doesn't speak English and our hospital doesn't employ interpreters 24 hours a day. Granted, there is a 1-800 number we can call for a telephone interpreter, but I don't think it has been very helpful since the interpreter is not physically there to point things out. I used hand motions and the limited Spanish that I have picked up to communicate with the family as best as i could.

The MD caring for this infant is considered a "god" in the unit since he is the one that basically opened the place 20-something years ago and not much of what he does is questioned, according to some of the other nurses. And, I must admit, I feel hesitant "rocking the boat" since I am so new and with such limited experience and knowledge...

Compounding this situation even more (if that is possible) is the fact that there are no policies/procedures/standards of care that is specific to our unit. I have brought this up with the nurse manager since I thought that it was a little odd. She replied that if we don't have them, the hospital cannot be sued for not following them (HUH??? Can't a hospital get sued for not having them to follow in the first place????????)

I know that neonatal nursing is what I was born to do, I just am not sure if this particular hospital is the one for me. I am considering applying for a position elsewhere, but am not sure if my tenure of only three months at this institution will hurt my chances at a large teaching hospital...we shall see I guess.

Thanks again for all of your advice and kind words of encouragement.

M

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Specializes in NICU.

That's awful. Of course there is no treatment for a grade IV IVH, however all parents should be given the choice of withdrawing care. That baby WILL have a bad outcome and the parents need to know that so they can choose whether to subject their baby to a life of problems or let nature take it's course.

I don't know what the answer is if he is the God of the unit. What does the nurse manager of the unit say?

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That's horrific! There is no way this is ethical. The parents have the right to know what they will be facing in order to decide whether or not they want to continue with care.

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