Sunday, November 05, 2006

Directive

The little girl had a tracheostomy as a complication of her prematurity, although her lungs were in pretty good shape. She was living with her dad, and mom is out of the picture - I'm not sure why. One day the dad stepped outside to have a cigarette. The baby, inside by herself, pulled the tracheostomy tube out and her airway closed off. By the time dad went back inside from his smoke the baby had been without air long enough to cause significant brain damage. Now the baby is hopitalized on a ventilator and in a vegetative state.

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.

13 Comments:

Blogger Casey said...

It doesn't make it exactly clear of when the trach was pulled out.. was the dad and baby at home.. could the same thing happened in the babies sleep? VERY scary.. very...

As a 'expert opinion' I do think you have the obligation of showing parents every side, but also, have the knowledge to know what is best... that is your responsibility... I have made decisions based on my children based on the 'advice' or guidence of a neonatalist and I trust that the decision that came out of that was the right one.
Just my opinion.

10:20 PM  
Blogger What The Hell Is This? said...

sorry about the name link on my last comment..

10:22 PM  
Blogger Awesome Mom said...

I really think that at times having someone tell you what they think the right thing to do is very helpful. You are right, parents are often seeing things for the first time and do not have the depth of experience that other health care professionals have.

It really has to be heart wrenching to have something like that happen to you. I feel for that poor father.

10:43 PM  
Blogger Doris said...

What a terrible situation for the father, I would not want to be in his shoes. I have had the opposite experience with doctors not being direct enough.

When I was 22 weeks pregnant and the ultrasound had revealed massive physical deformities that would virtually ensure that the baby would not survive childbirth, no one, not one single doctor mentioned the word termination or abortion. Everyone was thinking it and would look at my husband and me expectantly for us to bring it up. The doctors only said, yup, fetus has a 2 chambered heart and it's brain and lungs are filled with fluid. And hey, there you go, mind if I call in some collegues to see this? No one even wanted to explain to us the possible outcomes which now I believe to have just been to carry the baby to term and watch him die.

They were not helpful in an agonizing situation. I would have liked to have a more straightforward doc who would have told me the same thing your friend said to the dad.

12:10 AM  
Blogger Amy said...

The best thing that our cardiologist said, when we were at the end-of-life decisions with our daughter was, "Whatever decisions you make, based in the unconditional love you have for your child, can't be a wrong decision". This was something that I held onto.

Amy

12:38 AM  
Anonymous Anonymous said...

sometines family must look to the doctor for his guidance and sensitivity in such weighty and delicate issues.ultimately,family will be the the deciding voice,and my heart and thoughts go out to the poor father.

5:35 AM  
Anonymous Silver said...

ND,
I think you're absolutely right. In these times, parents/patients are devastated and overwhelmed with something they would have trouble deciding on even in the best of times (i.e. complicated medical issues while not being trained in medicine).

They need the guidance, and it's always a very fine line between that guidance and direction - but we have to try and walk it anyway.

4:35 AM  
Blogger The Imperfect Christian said...

I can't imagine the guilt, but everything happens for a reason. I can't imagine being in that position, but I also can't imagine letting my child live like a vegtable the rest of his/her life.

9:17 AM  
Blogger Ex Utero said...

Sometimes I get so caught up in all resources we (as a society) put into children who are in a persistent vegatative state - and it's significant. It does affect how I provide that counseling and guidance to parents of children like the one you describe ND.

But then I go existenitial and remind myself we live in a "token economy" full of inequity and that some parents are happier giving care to these children than living with the guilt of letting them pass. At some point we have to let those parents make thier own decisions; carry their own burdens. Otherwise I would have to get out of the business.

It's not what I would wish for my own children if the unthinkable happened, but I'm a doctor... I don't want to be God. I give them the best advice I can and then if they spiral in the opposite direction, I do my best to provide support until they leave my unit. Then I move on too. I've written a narrative medicine piece that sums up my feelings on this topic if anybody's interested. It can be found here: http://talesfromthewomb.blogspot.com/2006/04/holding-on-to-hope-part-1.html
and here:
http://talesfromthewomb.blogspot.com/2006/04/holding-on-to-hope-part-2.html

11:27 AM  
Blogger neonataldoc said...

Thanks, all. I agree, it's very tough for the dad. Ex utero makes a good point: Even if the family doesn't take our direction/suggestions, we still have to support them.

8:59 PM  
Blogger ali said...

I agree, and I applaud your colleague's courage in broaching such a difficult subject with the father. I, thankfully, have yet to face such a serious medical issue, but in my routine interactions with healthcare professionals - particularly with my daughter's pediatricians - I often feel I am being told what they think I want to here, rather than what they really think I should do.

5:31 PM  
Anonymous Anonymous said...

I have heard of hospice care for sick and dying people of all age groups etc. To help the parents out when it gets to be to much. But I would not want to let my child die if I was in the same scenario. What if the poor guy had to go to the toilet or answer the phone have a bath etc?

11:26 PM  
Anonymous Anonymous said...

And the poor guy would have to sleep just like the baby. So what if the trach came out while he fell asleep or he fell asleep from fatigue?

11:29 PM  

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