When Is Enough Enough?

Elvish, BSN, DNP, RN, NP · Sep 7, 2007

Oh honey, I don't know the answer to that question. But if I were in your shoes I would feel the same way you do. It's so infuriating...people who don't visit but won't let you do what's in the patient's best interest. I don't see what it would hurt to at least present the case to the ethics committee. They might say they can't do anything about it, but at least you know you've approached them. What does your p&p have to say about when you can/can't go to them, if anything?

Finallyat40 · Sep 7, 2007

Oh, I can so relate to your feelings. There is a fine line between caring for a patient and doing everything in their best interest and playing God. We do have an ethics committee in our hospital, and have called them in periodically when we have a situation that has become "complicated and confusing", such as the one you mention.

We had a case at one time that was awful...much the same situation as yours, except the parents refused to make him DNR or take him off, and the nursing staff was feeling really used....this kiddo was alot of work, even as a one to one. The ethics ommittee interviewed everyone involved....docs, family, and even a couple of nurses, and then handed down the decision that further care was futile, so the baby was made DNR, and the parents were given 10 days to transfer him to another facility or at that time we would remove life support. Within two hours of the decision, the baby coded and went to heaven...I said at the time that he just needed permission to go and since his parents weren't giving it, he was hanging on. After it was over, his parents were so relieved at not being made to make the decision....I think that's what it boiled down to with them.

Lots of hugs for you and your coworkers.

Jamie

SteveNNP, MSN, NP · Sep 8, 2007

I have had to arrange a few ethics committee meetings with the neos, RTs, social work, management, and the family. It's never a good reason to meet, but often it's at a point where the kid's prognosis is slim-to-none, and the parents are still firmly wanting EVERYTHING done. Once in a while it works, and the baby is made DNR with comfort care, and sometimes we just have to grit our teeth and give the baby the best care possible while he tries his hardest to die despite our machines and drugs keeping him alive. In these cases I have to remind myself that ultimately at the end of the day, the parents have to live with their decision for the rest of their lives, and all I can do is respect that, and give their baby the best, most palliative care possible while he is on this earth.

BittyBabyGrower, MSN, RN · Sep 11, 2007

That is the million dollar question. We have several on our unit that I wish would just go to baby heaven. I know as a parent I would have a hard time, but sometimes I think that our docs just need to tell the parents it is okay to let go. We are going to ethics with one baby this week...we are going to try for medical futility. Mom is young teen, grandma is calling all the shots, but only comes in if our docs demand it. This kid has no life, and what kind of family support???? Ugh. Sometimes, life isnt' the best alternative. It is hard on all of us to take care of these kids that are just suffering. Lot of hugs!!!

kitty29 · Sep 12, 2007

You can keep a kid alive for a long time, but when do "they" step in and say enough is enough?
I've heard about these ethic committees, do you guys use that sort of thing on your units?
Every time I see this particular kid on our unit I just wonder WHY "they" are letting this go on. I don't know who should be stepping in, but someone should. This kid has no head. He has no gut. He has no eyesight. He's in pain. His parents never come in. So when does someone finally say enough is enough? Another thing that gets me is that this kid is constantly getting blood/platelets. Maybe I shouldn't be thinking this, but I do ....... why are they wasting the blood/platelets on this kid? He needs to go to heaven ..... soon. He's been a DNR for weeks, but the parents won't just take him off ..... and no one can force them to?
What do most units do? Would you guys be doing the same thing? Or would you get an ethics committee involved and have him taken off? Or is it solely the decision of the parents?

In our NICU you can approach the consultant and/or go to the ethics committee. I have talked to the consultant a few times...and generally they are feeling the same as we nurses are.

33-weeker · Sep 17, 2007

There are worse things than dying.

Just go to any level III nursery and you'll see that is true.

Hats off to you guys. I don't know how you put up with those tough cases.

LilPeanut, MSN, RN, NP · Sep 20, 2007

We've had to deal with this in the past. Total brain death by all criteria, who ended up being kept on the vent for a month, with a

Sometimes the docs do need to be firm, especially with some cultures. I know some middle-eastern cultures are ok with withdrawing support, if it is the physician's decision. If the parents make the call, it's considered murder, but if the doctor makes the final decision, it's merciful and acceptable.

NurseyBaby'05, BSN, RN · Sep 21, 2007

Oh Rain-

I definitely feel you! I don't work in NICU, but Oncology and it's just so hard sometimes. I have one poor lady who has almost no platelets despite every intervention. If we have to do CPR on her it will probably kill her. :eek: Of course the family believes she's going into remission! :chair:

RainDreamer, BSN, RN · Sep 21, 2007

Thanks so much for all your responses, it's good to know other people know what I'm talking about.

We definitely give this baby the best care possible, but that's what makes it so hard ..... we care for this baby and see what his "life" is like. Parents are never there and don't realize all he's going through .... and yet they want everything done because "he's getting better". Well if you showed up once in a while you would see that's not the case. But whatever, I guess you just do what you can in these cases.

So they're gonna trach him and send him off to a long term care facility. Nice. I just wish these poor kiddos had some kind of voice, as I can't imagine having to live a "life" like that

elizabells, BSN, RN · Sep 26, 2007

Oh, Rain, I know. I think that is the hardest thing for us newer nurses (IIRC, you started a bit before I did) to come to grips with. In just over a year I have yet to see one of our cases go to the Ethics committee - and one of our attendings is the chair of the thing! Our patient population is heavily Hasidic, which is a culture very intent on doing everything, even in the face of a lethal genetic malformation. We had a little darling girl with a lethal brain malformation who we beat on for months before she passed - and they coded her for nearly an hour before she was pronounced. Just lost a seven month old ex 28 weeker who had been on and off the oscillator more times than I can count - I think we did at least fifteen full codes (epi, compressions, etc) in the month before she died. Her last few chest films showed that most of her ribs had been broken. As one of the few hospitals in my area that does head cooling, we send a lot of neurologically devastated, trached, Gtubed kids to LTC. So much PPHN, so many short guts. If anything ever makes me leave the NICU, it'll be that.

fergus51 · Sep 26, 2007

I think it's the hardest thing for all NICU nurses. I don't mind looking after dying babies and have no ethical problems with taking them off the vent and letting them pass peacefully. I do have ethical problems with torturing a baby with futile care. I just remind myself that it isn't my decision to make and vent with other nurses.

Unfortunately in my experience ethics committees are completely useless. They make a recommedation... Well, the parents have heard that same recommendation from countless doctors over months. One more really doesn't matter. IMO the best they can do is just do the bare bones when they do code (meaning stop after 20 minutes, not an hour).