Whose Decision?

We have a patient right now who has been in our unit for over 4 months. He was a 24 weeker, just one the cusp of viability outside the womb. He developed many different life-threatening disorders including MRSA (received during the actual delivery), necrotizing enterocolitis - which required multiple surgeries and caused a major wound on his abdomen, and a huge bleed on his brain. His head has grown exponentially with the bleed and the last MRI showed very little brain tissue is left.

So what do we do? We care for him, love him, do all we can, but at this point, where do we go? Most would say, "Let the parents decide." And I totally agree. It is the parents' decision alone. However, his parents have been in only a handful of times during his long NICU stay. They call at times, and have even recently (on urging of the staff nurses and other staff members) stated they would be in to talk with the doctors but then never showed up at the times they said they would come and never called to give any explanation or alternate times. As nurses, we have a hard time getting in touch with them at all.

Now, do I think they love their son, yes. I really do. I think the whole experience has completely overwhelmed them and they don't know what to do and so have shut down. I see this a lot. Either the parents are completely over the top involved and want to know everything, or they can't handle it at all and excuse themselves from the reality of it.

But, especially in this case, what do we do? Do we just "stay the course" and wait on nature to take it's course? There are other treatments for this little boy out there, but with his brain matter basically eaten away, he will never be more than a baby. We can "make" him survive for a time at least. Or we can let him peacefully leave this earth. But it shouldn't be our decision. And yet, we are making it, because there is no one else to make it for him.

I've read a ton of blogs and articles about when to save a baby and when not to. Most lay-people who comment on these articles are appalled that someone might NOT save the baby. And really, as nurses, as doctors, as people who got into a business of saving lives, the very idea goes against every fiber of our being. But in cases like these, I really feel we do a lot more harm than good. Yes, his heart may continue to beat (and if it starts to stop, we can always place a pacemaker), and his lungs continue to exchange oxygen (and if that isn't working correctly, how about a different ventiltor setting or ECMO), and he is getting the nutrients he needs from the formula we give him (or we'll just stop that and give him nutrition exclusively through his central line). Do you see our problem?

Who makes the decision of when to stop?