Variation in care for extremely preterm infants

One of the things that is striking in neonatology are the variations in outcomes of the most immature babies. In some centers, and in some countries, when a mother presents with threatened delivery at what the doctors think is 23 or at 24 weeks gestation (which we don’t actually know very precisely) the babies are not offered active care. Other places discourage active intervention, while others are more open, or actively encourage institution of life support.

Not surprisingly if you don’t offer intensive care the babies die. Then you can honestly go to the parents and say ‘we don’t offer intensive care because all these babies die’. On the other hand if you are active at 24 weeks gestation, then overall survival can be over 2/3. Then you can go to the parents and say ‘we routinely start intensive care because the majority of the babies survive’. So the attitudes of the caregivers are the greatest single factor influencing survival rates.

As John Lantos has asked ‘why is this tolerated? If the same was true for breast cancer survival there would be a national/international outcry.’

Four recent publications all address this issue.

Mehrotra A, Lagatta J, Simpson P, Olivia Kim U, Nugent M, Basir MA: Variations among us hospitals in counseling practices regarding prematurely born infants. J Perinatol 2013, 33(7):509-513. In this questionnaire study the authors asked at numerous hospitals a series of questions about the antenatal counseling service. Who does it, when do they get asked to see the patient etc. They showed that antenatal counseling is universally available in tertiary hospitals for mothers who a threatening very preterm delivery. Apart from the lack of standard approaches and the rather surprising and worrying fact that obstetricians and Ob residents do a fair amount of the counseling sessions, their was a lot of variation in the earliest gestational age at which a consultation will be requested. More than half do not ask for a consult at 22 weeks.

This is of course related to the next study, Arzuaga BH, Meadow W: National variability in neonatal resuscitation practices at the limit of viability. American journal of perinatology 2013. Individual neonatologists were asked whether they would intervene in a number of different situations, at different gestational ages and birth weights and so on. There were substantial variations in practice that varied according to where in the USA they practiced. Practices were not much affected by religion, and there was quite a lot of variability.

Alleman BW, Bell EF, Li L, Dagle JM, Smith PB, Ambalavanan N, Laughon MM, Stoll BJ, Goldberg RN, Carlo WA et al: Individual and center-level factors affecting mortality among extremely low birth weight infants. Pediatrics 2013. I already discussed this paper in a previous post, but the point today is that there is a great deal of variation between centers, even those that you might expect to be a bit more homogeneous, US teaching hospitals in the NICHD neonatal network. Much of the variation in survival in infants less than 25 weeks gestation seemed to be associated with variations in the use of certain interventions, and the variations in survival were enormous, for all babies less than 25 weeks, survival ranged from 10% to 72%!

Serenius F, Sjörs G, Blennow M, Fellman V, Holmström G, Maršál K, Lindberg E, Olhager E, Stigson L, Westgren M et al: Express study shows significant regional differences in one-year outcome of extremely preterm infants in sweden. Acta Paediatrica 2013. And to show this is not just a US phenomenon, this regional study from Sweden showed variations in Obstetric interventions between regions of Sweden, and variation in neonatal interventions, and in infant survival. Most of the differences in survival were very early after birth, so they mostly probably were a result of decisions to intervene or not. So the proportion of babies at 22 to 24 weeks gestation who died before 12 hours varied from 11% to 46%.

I wonder what would happen if I went to a doctor with my skin cancer, and he told me, ‘on the other side of the river they treat this actively and you would have a 50% chance of survival, over here we don’t think that 50% is good enough, so we don’t offer treatment. But we can make your death painless, we have become really good at palliative care’. Not only would I be out of there like a shot (and I bet that doctors who discourage active care at 24 weeks would also be out of there fast) but I would make sure that there was some sort of investigation of why patients were being allowed to die just because of the doctors beliefs.

About keithbarrington

I am a neonatologist and clinical researcher at Sainte Justine University Health Center in Montréal
This entry was posted in Neonatal Research and tagged . Bookmark the permalink.

7 Responses to Variation in care for extremely preterm infants

  1. Alyssa Kent says:

    So what is the right answer here? Attempt care on every baby and make decisions from there? Should there be a standard of care? Would that be standard be dependent on the level of NICU?

    I entered the hospital fully effaced and 1cm dilated at 22 weeks 1 day but knew my dates were off by 3-4 days putting me more at 21.5 weeks. At that time I had consults with OB staff, MFM staff, and Neonatology staff. OB staff referred all viability discussion to neonatology, MFM recommended termination(?!) and neonatology tried to help me make sense of the decisions we had to make ( a tall order). I was given national and hospital based statistics for babies born at 22 weeks, 23 weeks and 24 weeks and was advised that their tools made it nearly impossible to attempt therapeutic measures on a baby that weighed less than 500 grams. The estimated fetal weight on my ultrasound that day was 450g. We were advised to think about when we were ready for intervention and let them know, as they would administer glucocorticosteroids based on our decision. We decided on 24 weeks, which would have really put me at more like 23.5 weeks. It is still the most painful decision I have ever made and I have a tremendous amount of guilt and angst over it today even though we made it past our self indicated 24 week deadline. I see and hear of 22 & 23 weekers who have survived and thrived and I watch my amazing daughter and wonder about all the what-ifs of that decision.

    What I do not know is whether we would have changed our minds if we had to look our decision in the eye at 23w 6d. The situation was complicated by my baby’s position (footlong breech) and the necessity for a classic c-section. Which brings up more questions – How does the risk to the mother (and her future pregnancies) play into these viability scenarios?

    Also- should there be universal dating ultrasounds at 7 weeks to confirm dates? I have always struggled to understand how accurate the statistics of micropreemies are based on gestation. Are many of those 22 & 23 week success stories that are out there really 23 & 24 weekers? Similarly how many 22 & 23 weeker palliative care cases were really further along gestationally with potentially positive (medically speaking) outcomes?

    tough stuff.

    • Thank you so much for that thoughtful, and very personal, comment.
      You are absolutely right that all our statistics for outcomes by gestational age are tainted by the inaccuracy of gestational dating. There are studies where they have taken mothers who had a pregnancy after IVF, so we know exactly the gestational age, and done routine ultrasounds, which show that our usual standard, that is an ultrasound done 12 to 16 weeks of gestation is accurate to within 5 days, 95% of the time. Which means that even with good menstrual dating and an early ultrasound you will often be in the ‘wrong’ week. A 23 weeker might be a 24 weeker, or a 22 weeker. Our biology also doesn’t necessarily recognize our magical division of time into 7 day periods. Why we divide gestation into these arbitrary intervals (based on the beliefs of ancient humans that 7 was a magical number) is beyond me.
      I was touched by your description of your feelings of guilt over your decision, even when your decision had no impact… I don’t think that is rare. In fact I think it is a normal human response, you look today at your daughter and you wonder what would have happened if you had delivered a few days earlier, when you had made a decision not to intervene, Virginia would not be with you now. But it would not necessarily have been the same Virginia, the complications would have been different, the outcome also, maybe… but lets not get too metaphysical. (I have the same thoughts about Violette).
      What is the answer?
      I think that the answer is not to impose arbitrary guidelines. I think that most babies who have a reasonable chance of survival (what is reasonable can be a decision based on the family’s values, hopes and desires, but would probably usually be somewhere around 10 to 20%) should have initial intensive care started. Babies less than about 440 grams very rarely survive, even with intensive care, and a fuzzy limit based on birth weight (which you can measure accurately in the delivery room) would be more evidence based than a strict limit based on completed 7-day periods of gestational age (which you can never know accurately).

      We like simple answers, simple rules that tell us the right thing to do, simple rules will often lead us astray. Life is complicated.

      As for the other question about classical c-section, you bring up an extremely important point. I think that the decision to actively intervene for the baby, and the decision about whether to do a classical c-section should be taken separately. What I mean is that a classical c-section at extremely low gestational ages has major implications for the future of the mother. A decision to provide intensive care for the baby does not mandate a c-section. So it is perfectly acceptable when weighing up all the pros and cons of a decision to say we will start intensive care if the baby is born vaginally, but if there is fetal distress we will not do a c-section. The added morbidity for the mother make that another decision that should be individualized. The decision might be quite different if, for example, the mother is convinced that this is her last chance to have a baby, compared to another mother who may have good prospects for future pregnancies. Imposing limits based on gestational age is no more appropriate for c-sections than for neonatal resuscitation.

      I hope your Elm City Legends event goes well. https://www.marchofdimes.com/connecticut/events/events_9106.html

  2. Pingback: Comment on my last post | Neonatal Research

  3. Bonnie Arzuaga says:

    “I think that the answer is not to impose arbitrary guidelines. I think that most babies who have a reasonable chance of survival (what is reasonable can be a decision based on the family’s values, hopes and desires, but would probably usually be somewhere around 10 to 20%) should have initial intensive care started. ”

    I could not agree with you more. I’ve seen and heard of ‘guidelines’ promoting both older and younger resuscitation and I think both types are wrong. One of the problems is that even if there is no ‘official’ institutional guideline, there are either unspoken ones or even personal ones, which amplify the variation that we see from state to state, hospital to hospital, and even practitioner to practitioner within the same hospital. Of course, things like access to appropriate and timely advanced NICU care should be taken into account, and here I am referring to variation which exists within institutions of similar caliber and medical acuity level.
    This issue is very pervasive in the daily lives of neonatologists. I’m not usually a fan of self-promotion (far too modest) but if anyone is interested, here’s an essay regarding a personal experience of mine having to do with this very topic:
    http://www2.aap.org/sections/bioethics/PDFs/Arzuaga_Essay.pdf

  4. Gonzalo Mariani says:

    NEJM, December 15, 1983. Comment by Marcia Angell, editor of the Journal at that time:

    “The urge to find a single uniformly applicable solution to the problems raised by Baby Doe is understandable. However, we should resist it. All problems do not have neat solutions. The best we can hope for are answers that are sensitive and individualized. That is what good medicine is all about.”

    30 years later, I believe the same concepts are applicable to the care of extremely preterm babies.

  5. ericruthford says:

    This is an excellent summary of the dilemma of the treat/don’t treat question for the extremely premature. There was an article that came out just this week in the New England Journal of Medicine about this very topic, finding that the hospital’s practices make a huge difference on survival of the 22-weekers. Our son was born at 22 weeks and 6 days of gestation and survived (although the doctor took some convincing). I wrote a short blog post about the NEJM article:

    https://theydontcry.wordpress.com/2015/05/15/survival-of-22-weekers-greatly-influenced-by-which-hospital-cares-for-them/

  6. ericruthford says:

    Reblogged this on They don't cry and commented:
    Last week a new article came out in the New England Journal of Medicine about differences in the way 22-week preemies are treated. Many hospitals won’t even try, even if the parents ask for it. This excellent blog post from Keith Barrington is from a couple of years ago about some other articles that have been done on the treat / don’t treat question.

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