This is not, nor ever was, my patient, but is one of a pediatrician friend of mine. She told me about the case after she had just been to a team meeting of the baby's physicians and other caregivers with the father to decide what to do. The baby is stable and could go home on a ventilator, although the physicians think that given the baby's condition, removing the ventilator and letting the baby die is the most appropriate thing to do. Father is declining to do so.
After the meeting my pediatrician friend talked with the dad a little longer, one on one, and said to him, "You know, it's okay sometimes to just let the baby die," or words to that effect. She thought the dad understood the reasons for discontinuing life support but just couldn't bring himself to do it. (Of course it's tough for dad to give the okay to let his child die, not only because that's always tough to do with your child, but also because of the guilt he must feel for letting his baby pull out her tracheostomy tube.) Afterwards, though, my friend wondered if she had been too directive with the father.
I don't think she was too directive at all. Yes, we are taught to be non-judgemental about many tough decisions parents have to make, and we have to respect that, but we can't totally cop out of our responsibilities either. We physicians and nurses have seen these types of situations before; we've thought through the ethics of it and can bring some objectivity to the discussion. The unfortunate parents are almost always dealing with this situation for the first time, and, I think, need and appreciate some guidance.
I know we have to be careful with this and not be too directive (although who decides what too directive is?) Also, there are some fringe physicans and others who could abuse their influence with the parents to let some kids die who shouldn't, and vice versa, but for the most part we have something to offer to parents and would give appropriate advice. Parents are in a terrible situation when these things occur. We shouldn't force them to see things our way, but at the least we can help them think through it, and personally I think we can give them a nudge in the right direction. It's our job to help them and not just back off and stay away from the tough decisions.
P.S. Check out a new Pediatric Grand Rounds at Tales from the Womb.