Have we crossed the line in the NICU?

Discussion in 'Topics in Healthcare' started by oompaloompa, Jun 19, 2008.

  1. oompaloompa

    oompaloompa 0.20 Blood Caffiene level

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    I've never really enjoyed the NICU as a service but as I go through my residency and routinely deal with its graduates it brings up some very conflicted feelings for what we do there. Sure, everyone has heard a story of a 25-weeker that's now in college or something, I do too. Stories like that get attention but the fact remains that a very significant portion of NICU graduates don't do so hot.
    Unfortunately, a 4 month stay in the NICU with ongoing complex medical care (probably) for life is an immense burden to society. To me this is still acceptable as long as the percentage of overall children is low and the fact remains that we do oblige ourselves to provide for these children if choose to (sometimes unmercifully) keep them alive. I have low standards too, any NICU graduate who is mostly neuro-intact is a huge success story to me and deserves whatever resources we can provide.
    However, the trend continues and even though we're getting better at preserving the biological lives of these extreme preemies, multiple congenital anomaly kids, and the severely neurodevastated..... I wonder if it's really the right thing to do. We created a rapidly expanding population of children that continue to require a larger percentage of finite resources, which would all be okay if we were improving their quality of life - we aren't. The untold story also remains that often the burden of a child who requires round-the-clock medical care destroys marriages and leads to sacrificing the livelihood of siblings that actually have a chance. I certainly wouldn't want to be a parent who has to make these decisions, but it doesn't seem right.
    It's fraught with ethical complication and before I get flamed, I know there are plenty of exceptions, but what we choose to do for these children has lifelong implications - and not just for the infant itself. I think that sometimes the right decision is to do nothing. I'm open to other opinions, I'd like to hear arguments for all the work that goes into this.
     
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  3. Strength&Speed

    Strength&Speed Need more speed......

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    get this common sense crap out of here. ;) I bolded what I liked best. Until people start to realize we have finite resources..and that for every action, there is a equal and opposite reaction (family strife due to raising a severely handicapped child), these sorts of things will continue.

    Oh, and you can insert "terminally ill elderly patient" for "preemie" and I could write the same story. We've been dealing with this on the other end of the spectrum for a while.
     
  4. docB

    docB Chronically painful
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    I went to med school at Temple in the heart of the grungiest north Philly post apocalyptic war zone ever. Crack for breakfast and bullets for lunch. The NICU there is really busy with dozens of <1000 gram crack babies. The average length of stay was a month and the average cost of one of those stays was $250K. The outcomes were dismal.

    If society decided to raise the viability cut off from 24 weeks to something higher we could save that resource. For $250K I could outfit a half dozen vans with nurses to drive around the ghetto and give out free prenatal care.
     
  5. MOHS_01

    MOHS_01 audemus jura nostra defendere
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    I totally did not see the viability comment.....

    I would also like to point out the sad fact that further free prenatal care to the elements responsible for predominantly inner city crack babies would be further wasted resources. It is a problem that cannot be solved within the comfort zone of today's foolhardy ideological societal views.

    The point on finite resources is important but all too often ignored, and it is true that a disproportionate share of the healthcare dollar is spent at the extremes of life. From a healthcare economics point of view we have known this for years, but we have failed at the task of determining reliable prognositic indicators for identification of those at high risk for complications. This is a very, very different matter when viewed in comparison to someone with stage iv pancreatic cancer or melanoma.......

    Try telling that to a new parent or grieving child though.....
     
    #4 MOHS_01, Jun 20, 2008
    Last edited: Jun 22, 2008
  6. Miami_med

    Miami_med Moving Far Away
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    At full risk of completely blowing my anonymity on this board, I'll give a little personal information.

    I am the father of 26 week multiples. My children were born ranging from 835 to 960 grams. All of them had extensive NICU stays. They all had numerous problems. Two have had more than one surgery. I am highly familiar with the outcomes and treatment for PDAs, NEC, IVH, chylothorax, pneumothorax, CLD and BPD. I've been through approximately 14 sepsis workups, 4 clinical trials, numerous experimental treatments, etc... Between my kids, I had 4 laser eye surgeries and two experimental therapies with AVASTIN. Discharge ranged from 3 months old to close to 7 months old. This all happened within the last year.

    It was a little bit strange for me, because it all took place at my training institution, and I spent time in the NICU as both a parent and a rotating student. I think that it atleast gives me an interesting perspective. This is a level III NICU, which serves a significant indigent and illegal population at its home hospital, though they receive the most deranged transfers from virtually all regional hospitals, as well as the Caribbean. We offer the most advanced therapies, and the experience is probably set to produce the best outcomes that can be produced.

    I have a few ongoing problems with my kids, but the following points are important. No one appears to be neurologically impaired. While there is some peripheral vision loss in a couple of the eyes amongst them, no one is blind. There is no evidence of CP, and one mild to moderate case of BPD (with short term O2). No one is devastated in any sensory-neuro fashion. At this point, I, nor my children's physicians, have any reason to believe that they won't all become relatively normal children and functional adults.

    Here's I guess my point. I am well aware that outcomes go all over the place with ex-premies, especially those under 1kg. However, I think we need to distinguish between a high risk and virtually zero chance. I can tell you that at my institution, a 26 weeker now has close to 90% survival. The chance of survival with no severe long term impairment hovers around 75%. Even though these numbers obviously get worse as the babies get smaller, it seems a little crazy to throw 75% under the bus because of the dismal outcomes of the other 25%. I think what we really need is a better understanding of who has locked themselves into that poor 25% (or 50% or whatever that number is for a 24 weeker.) I think that rather than stopping to try and save small babies, we need to realize when enough damage has been done that we need to stop fighting.

    I guess what I'm saying is, we often undertake high risk procedures in medicine. There is ample evidence that many ex-premies do very well. This is not like the demented nursing home patient in the ICU. A number of the premies will go on to live productive lives at near normal life expectancy. Sort of like treating children with cancer, I think that the ones who do well usually make it worth taking a shot.
     
  7. MOHS_01

    MOHS_01 audemus jura nostra defendere
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    Point well made and taken.

    There exists significant differences between status and age at all points in life, and this is why the "art" of medicine still has a need for existence. The algorithmic approach that has been (and continues to be) developed simply cannot hold true for every individual and every situation.

    I learned early on in residency that the single most terrifying event for me was looking down at the pager and seeing a NICU consult. The fear of not knowing, hesitating, the potential for making a mistake in a setting where things do not generally present the way that they read in books, stakes are high, and the differential is long -- bordered on paralyzing.

    At the other end of the sprectrum of life things are simpler, more clear. Yesterday I treated a 99yo (who turns 100 in two months along with his twin brother ) who was as healthy as could be. I also happened to treat a 54yo who was on oxygen, still smoke 2.5packs per day (on Medicare disabled with Medicaid secondary.... but could afford the cigs), with cirrhosis and still drinks a case every other day.... The 99yo reminded me of why I like my job.... the 54yo reminded me that I need to consider alternative careers once "the silent generation" is silenced forever and their replacements are the boomers....
     
  8. njac

    njac Senior Member

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    I understand that some of these babies will become productive members of society. But many of them won't.

    I think what bothers me the most about these cases are the families - mother and fathers and grandparents who spend all day every day in the NICU. In the 2 years I've been at my hospital (Level III NICU) I've seen 2 kids live to be over a year old without having left the hospital once.

    What I don't understand (and I don't want kids, so I know I don't understand a mother's perspective) is how someone could possibly hold onto so much hope. Where is the joy of parenthood when you can't even hold your baby? Say the kid does make it out of the hospital - how can you work with all of the extra appointments the special kid will need?

    And as the OP pointed out, how horrifically unfair this situation is to existing siblings. I really feel for those kids.
     
  9. Pharmavixen

    Pharmavixen foxy pharmacist

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    Njac...this should thaw your frozen heart...
     
  10. njac

    njac Senior Member

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    for human babies, those were tolerable. still doesn't make me want any. It's hard for me to convey but I just feel for the families, and I don't see where the joy is. Isn't parenting supposed to be fun?

    If you want to melt my heart send me some of these: I'll be a gooey baby talking mess in seconds: [YOUTUBE]http://www.youtube.com/watch?v=Dsg8JccRZCw&feature=related[/YOUTUBE]
     

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