Wednesday, August 09, 2006

Change

I have written before about the ethics of resuscitating babies of 23 and 24 weeks gestation and of my discomfort at allowing parents to decline resuscitation of a 24 weeker when there is a 55 - 60% chance of survival and 25% chance of severe disability, especially when there would be no question of resuscitating and treating an older patient with those odds. At the risk of alienating readers by repetition, I'm going to talk about it again, because the July issue of Pediatrics has a letter entitled "Advocating for the Very Preterm Infant", which basically agrees with my point. It's kind of exciting for me, because this is the first time in my memory that I've seen such a piece in the medical literature.

The letter is written by Drs. Annie Janvier and Keith J. Barrington, neonatologists from McGill University in Montreal, in response to a previous article discussing guidelines for resuscitation and non-resuscitation of extremely premature babies, an article in which the majority of medical staff members at an NICU in Portland, Oregon did not recommend NICU care, but just palliative care, for infants born at 24 weeks. Dr. Barrington is a well respected neonatologist, one invited to write editorials and give talks at prominent conferences. The letter speaks of "the ethical duty of the perinatal team to the infant about to be born." The authors note that a one month old infant with group B strep meningitis or a 50 year old neonatologist with an extensive stroke, both of whom have survival and disability chances similar to those of a 24 weeker, would likely have "immediate resuscitation and institution of care without any discussion of withholding intervention". Why, then, is it acceptable to not resuscitate 24 weekers?

Judging from comments on my previous posts about this subject, the majority of readers strongly feel that it should be the parents' decision to provide aggressive care or not. (Actually, it's not clear from the letter whether the authors think all 24 weekers should be resuscitated or whether they think it should be the parents' choice.) I know that's the prevailing thought, but I'm still not sure it's appropriate. It is plain and simple age discrimination when we don't resuscitate 24 weekers when we would resuscitate patients such as those mentioned above.

Drs. Janvier and Barrington have a little twist in their situation. Not only are they neonatologists, but they are also parents of a baby born last year at less than 25 weeks gestation. They write "Every day that goes past we are grateful to our colleagues here" for resuscitating their baby.

In the 1980's it took a Baby Doe case and government intervention to force people to repair such defects as esophageal atresia in Down syndrome babies, instead of just letting them die because they had Down syndrome. Although I really prefer to not have the government involved, I wonder if we need another Baby Doe case this decade to change our paradigm and insure aggressive treatment of 24 weekers.

19 Comments:

Anonymous Lindsay said...

This is very thought-provoking, thank you. The way you present this topic makes it quite clear that the ethics are on the side of resuscitation of the child. That we should at least give him/her a chance at life. Why should one person get to make such a choice for anothrer person? That when there are decent odds of surviving and thriving a parent could just choose to walk away and let the child die?

You're right, that is a wrong thing to do, to make such a choice for another person's life. Based on what? The parents' comfort b/c they don't want to see the child suffer? It's not needless suffering, the child has good odds to survive and live!

In our culture (as in most, it seems) parents are allowed to make all kinds of decisions about the medical care of very young children that may fly in the face of modern medical knowledge, simply because the child is so young he/she cannot be consulted and somehow our culture thinks that when a child is very young the parents can make such decisions for their children, rather than waiting for the age of consent or without regarding more knowledgeable medical opinions.

Age discrimination? Who has rights to a child's body? Why does an eight year old have more rights to his body than an 8 day old? An 8y o doesn't understand medical issues, either. Who gets to make life-altering (or ending) decisions for a child? Parental rights? Or children's rights?

2:59 PM  
Blogger karrvakarela said...

Hi,

I think that's one of the problems with evidence-based practise - we tend to become preoccupied with facts and figures, the minutiae of research, without keeping a larger picture in mind, ie, that we are working with human beings.

As Drs Janvier and Barrington show, a lot of the times what these ethical decisions really come down to is what you would conscionably do if this was your own child, or someone you loved. Statistics are important for the provision of management guidelines and placing details within an objective perspective but they shouldn't obscure our greater responsibilities to our patients. They shouldn't obviate the need to exercise humane judgement.

By the way, this is my first time at your blog. It's a pleasure to read.

3:14 PM  
Anonymous Anonymous said...

As I read Lindsay's post, all I could think of is how this (really great) arguement applies to circumcision. I'd love to see a post on that topic, Neonatal Doc.

4:30 PM  
Anonymous Thankful Canadian hbac mom said...

I just attended a birth of a 25w 4d baby girl. I was the doula. I was there for the birth, the resuss, the carrying of baby away to the nicu. I was also there when the parents chose to remove their precious, very wanted child, from life support. One complication after another kept making the quality of life more and more difficult. In the end the neonatoligist (who incidentally saw my daughter after her homebirth, but we've been through this route already) was kind enough to lay out the reality of what was happening with thier child.
Once again I believe that not all neonatologists are cut from the same cloth... Does one article written by (parents)doctors institute a general rule? I think that this will always be some thing that is a case by case situation...
I have a funeral to attend tomorrow. One that I wish I didn't have to...

7:39 PM  
Blogger clara said...

I agree with Anon that the same argument could be applied to circumcision. The parents making a choice on behalf of the baby, except in the case of circ, based totally on conformity and with no medical value. What if he grows up and has painful erections because too much was cut? Oh well, his parents had the right to make a choice to permanently alter his body. Of course dad had to be able to compare penises with his son.

With tiny preemies its definitely a case by case type of thing. Some micropreemies have a better chance than others, but supporting the baby, doing the basics, should be standard care, regardless of the parents wishes. When my very sick son was born, it was all about giving him a chance & supporting what he was trying to do. When it appeared finally, after many weeks to be futile, we let him go. I have an emotional reaction to this discussion due to that experience, but it hurts me to think of parents not giving a baby a basic shot at life. This connects to your last post though, lots of parents are too worried about not having a "perfect" child, IMO.

10:23 PM  
Blogger Judy said...

I have been fortunate to always work in institutions where preemies were virtually always resuscitated at 23-24 weeks. I've also been fortunate to be blessed with neonatologists who generally know when it's time to quit being aggressive in treating the little ones who simply aren't going to make it.

I think the key to getting more universal support for resuscitation of 24 week preemies is making the point that withdrawal of support is not ethically different than never initiating it. It IS more difficult emotionally for many people, though. Once you get past that hurdle, it's much easier to look at a 24, or even 23 week preemie and know that resuscitation is NOT an irreversible choice.

Not resuscitating -- that's irreversible.

10:32 PM  
Anonymous Anonymous said...

I agree with everything said. But I also wonder whether resuscitating a 24 weeker is an intrusion into the balance of life. I know the survival statistics and I can't say what's right or what's wrong. I also can't say what I'd do. Prematurity and the descisions involved are a real struggle, fraught with pain and anguish. But perhaps, just perhaps, interferring in the process that results in a premature birth and death is not our place. Perhaps resuscitating a very premature infant is a different thing than resuscitating an adult with Group B strep meningitis.

11:46 PM  
Blogger Becca said...

Anonymous 11:46 - under your logic, antibiotics are also "an intrusion into the balance of life". You cannot differentiate between the kind of intervention needed for one condition (that of being born rather early) and another (meningitis, or a stroke). People are saved who, if left to 'nature' would die, all the time. Every day in every hospital in every country in the world.

Neodoc - I suspect that with rising awareness of the current statistics, there probably won't be a need for legal change. Hopefully, anyway...

8:33 AM  
Blogger That Girl said...

As I said before, it is easy to make decisions about others people's pain and the burden they have to bear. You do not resucitate a 50 year old patient if he has a DNR order, even if he is otherwise healthy (and that's specified in the DNR). This is because we allow adults to make decisions about their care regardless of our opinion.
What about the parents who keep children alive and suffering just to keep them for another day? Who egts to make the decision?
I advocate for the parents mostly because the burden of most things falls directly on the parents.
They gave my first son, 14 years ago at 1 pound 12 oz very low chances for survival.
He was a miracle - there was nothing wrong with him except that he needed time to grow bigger.
However, our insurance at the time paid 80% - my portion of the bill was 159,000.
I eventually declared bankruptcy. I have a hard time getting a home, will always pay more for things like cars and mortgages, nevermind the stress before I did declare bankruptcy.
How many years were taken off my life from the stress of his NICU stay, from the two years before I declared (I actually had one collection agency threaten my life). How many hours upon hours did I spend with my son overcoming his lack of fine motor skills and learning disability?
How much money, even WITH bankruptcy, have I lost paying for the direct and indirect costs of his birth?
While I personally think it is worthwhile, I wouldn't appreciate being forced to bear the consequences of someone else's decision.
I also would like to meet this strawparent everyone has brought up - the parent who wants a "perfect" child.
And a reminder - every step forward in technology will most likely have a use that everyone is not comfotable with. If baby designing becomes available there will of course be a certain percentage who will try to design their "perfect" child, along with people who will welcome children with disabilities and every shade of parent in-between. In order to preserve our freedoms we unfortunatly have to let other people have theirs also.

12:47 PM  
Blogger Ex Utero said...

As I walk around my unit, I see more and more 23 weekers and below who are doing well. I think a big part of this is consistent care by nursing and in particular by neonatal nurse practioners, who provide point of care right when it's needed rather than on rounds or just when the alarms go off. I think this is because there really hasn't been some new and wonderful break through since surfactant, just small steady increments in our management practice.

We may be having this same discussion in a few years about 23 weekers and then in a few years after that about 22 weekers, who I've now seen a hand full survive intact (a couple of them IVF so they had reliable dates).

At some point, I find myself thinking about your post about choice. The line between survival and abortion is starting to thin. Perhaps the religious right will win certain aspects of this battle over time, by just waiting it out and letting technology win it for them. The day may come when we get down below 20 weeks. Since our estimates are only accurate by plus or minus two weeks, and are generally less accurate the younger the fetus is, it would get very dicey at that point when parents elect for abortion at 16+ weeks versus do everything at 19+ weeks. Lawmakers would almost certainly feel compelled to step in to prevent the courts from pulling an another rendition of Roe V. Wade (or the opposite there of).

Scary isn't it?

12:06 PM  
Blogger neonataldoc said...

Thanks, all, for the thoughtful comments. I have to admit, I didn't expect this to get compared to circumcision! I agree that we have to be willing to remove kids doing terribly from life support. It isn't ethically different from not initiating support, although parents can have difficulty seeing it that way. That girl, I wish I knew how to make the kind of problems you had go away. Our society is not equally kind to everyone. And ex utero, yes, it is a little scary to think where this might lead.

4:32 PM  
Anonymous Anonymous said...

I think it's important to remember that not all 24 weekers are the same. The 390 gm IUGR preeclamptic preemie is a different beast than the 24 week 600gm preterm labor preemie.

I'm a perinatologist in an institution where the NICU resents consults for the 23-24 weekers. You know, the people with preterm labor at 23 weeks, iffy dates and a 500-600gm efw. Our NICU attendings hate that we consult them for those babies, but it seems like they need a NICU consult more than the 25 weekers that the NICU is happy to see.

10:29 PM  
Blogger Clark Bartram said...

Regardless of whether the data supporting a medical indication for circumcision is any good, something that is not as black and white as most who are anti-circ would have you believe, I find it a tad inappropirate to compare the procedure to the decision of resuscitating a premature infant.

1:15 AM  
Anonymous Lindsay said...

Clark,
I wasn't really trying to compare resuscitation of a preterm infant to circumcision of full-term infants, but I think the overall idea is that because of their age, these babies (both preterm and full-term) are not given the same respectful consideration of their lives and bodies as an older person.

1:31 PM  
Blogger Clark Bartram said...

That I can understand. I got the impression that the seriousness was being compared. Circumcision doesn't typically lead to death as not resuscitating does. My mistake.

12:49 AM  
Blogger Shauna said...

Mom of a 23 weeker here that weighed 501 grams or 1lb 1oz. She never did have a brain bleed, she is Blind, but not totally and she has a G-Tube. The doctors left it up to me and I said "Do what you can". I believe it should be left to the parents. I never regret my choice. But you have to know when to stop, Some parents can not do this and I belive the Neo should have a talk with the parents on when they have done all they can do. And the parents should decide how much further they will go.

11:53 PM  
Blogger purple_kangaroo said...

Excellent post, thank you. I'm glad I found your blog and will be coming back to read again.

3:43 AM  
Blogger tnmeisner said...

I found your comments very interesting. Three months ago we brought our 23 weeker home and he is doing amazing. He was large for his gestation (706 grams) and I think this helped him.

We were never formally "asked" what to do. I think, and would hope, that every parents' reaction to such a question would be "do everything you can".

23 weeks seems to be the new 24. As technology continues to advance 22 will the new 23 and so forth.

8:34 PM  
Blogger Special Needs Mama said...

Why should it ever be the doc's decision in these cases? As the mom of former 23.5 week twins, I cannot disagree more. You can read my perspective at wwww.literarymama.com/columns/specialneedsmama. The docs don't see these kids, they have no idea of outcome (ever). It's the parents who bear the burden.

Second, you fundamentally cannot compare outcomes in babies born with brains this immature, and fully developed fetuses (or even adults) when rehabilitation is possible.

Finally, there is no ethical duty here, just the (ongoing) desire of docs to play God. I call foul: bad science, bad medicine.

2:21 PM  

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