As I read through the new NRP recommendations and began posting interesting points on my Facebook Page I came across a section which has left me a little uneasy. With respect to a newborn 36 weeks and above who is born asystolic and by ten minutes of age continues to remain so and has an apgar score of zero the recommendation that has been put forward is this:
An Apgar score of 0 at 10 minutes is a strong predictor of mortality and morbidity in late-preterm and term infants. We suggest that, in babies with an Apgar score of 0 after 10 minutes of resuscitation, if the heart rate remains undetectable, it may be reasonable to stop resuscitation; however, the decision to continue or discontinue resuscitative efforts should be individualized. Variables to be considered may include whether the resuscitation was considered to be optimal, availability of advanced neonatal care, such as therapeutic hypothermia, specific circumstances before delivery (eg, known timing of the insult), and wishes expressed by the family (weak recommendation, very-low-quality evidence).
There are some significant problems with this part of the statement.
They claim that the apgar score at ten minutes is a strong predictor but when you look at the analysis of the evidence presented in the body of the paper it is weak at best. I am not clear how one declares the prediction is strong in the face of poor evidence but I will acknowledge intuitively that this makes some sense but do challenge them on the use of the word “strong”.
2. They are correct in acknowledging that the introduction of hypothermia in such settings has changed the landscape in as much as I find it quite difficult to prognosticate unless a child is truly moribund after resuscitation. Given such uncertainty it is concerning to me that this recommendation may be committed to memory incorrectly in some places that do have access to cooling and may be used more rigidly as though shalt stop at 10 minutes.
3. In the middle of a resuscitation it is quite difficult to process all of the facts pertaining to a particular newborn while orders for chest compressions, emergency UVCs and epinephrine are being given. Can we really individualize within ten minutes accurately and take the families wishes truly into account? This just does not seem practical.
4. The families wishes are taken into account but inserted as a “weak recommendation”. How can the wishes of the family in any family centred model of care be minimized in such a way even if we believe the situation to be dire?
5. Since the introduction of hypothermia there appears to be a near 50% survival rate in such newborns and as the authors state 27% of survivors who received cooling had no moderate or severe disability. Here in lies my greatest issue with this guideline and that is the hypocrisy this position takes when you compare populations at 23 and 24 weeks gestational age. Survival at these GA in the recent NEJM study of almost 5000 preterm infants under 27 weeks were 33 and 57 % respectively at 23 & 24 weeks with rates of survival without moderate or severe disability being 16 and 31% in the two groups. The fallout from this and other studies at the extremes of gestational age have been that we should be more aggressive as the outcomes are not as bad as one would predict. How can we argue this for the 23-24 week infants and for term infant with the same likelihood of outcomes we would unilaterally stop in many centres?!
So Now What Do We Do?
We are supposed to be practising family centred care and much like the argument at the edge of viability the same should apply here. The wishes of the family should never be minimized. Arguably it may be very difficult in such an unexpected scenario to appraise a family of the situation and have clarity around the issue but if a heart rate can be restored after a few more minutes do we not owe it to the family and the child to bring the infant back to the NICU and see what transpires especially if cooling is available?
The million dollar question of course is where do we draw the line? No heart rate at 15, 20 minutes? Based on the evidence thus far it seems to me that a little longer than 10 minutes is reasonable especially in well equipped centres with access to cooling and modern ventilation and treatments for pulmonary hypertension. How long though must be individualized and should be determined in partnership with the team caring for the patient which must include the family.
The journey from conception to the labour floor and then for some to the NICU is not a straight one. There are times of joy, interspersed with sadness, denial, anger and eventually acceptance, as initial news of being pregnant leads to complications in pregnancy and then eventual admission of an infant to the NICU.
Much has been said in recent years about the building of partnerships with parents and in fact there is a new catchphrase attached to the concept “shared decision making” (SDM). There is no question that in the perfect world this is exactly the relationship that we should be striving for with all of our patients. The world however is not perfect and although this may not be the most popular opinion I have given, I question how applicable this really is in many situations.
A Reality Check
Take for instance the parents who present to the labour floor of their local hospital in advanced labour at 24 weeks. Proponents of this SDM model would suggest that a meeting take place and pertinent information be given to a family and together with the assistance of literature applicable to their situation (possibly a pamphlet) the health care providers and families come to a mutually agreeable decision as to what the best course of action is for them and their unborn infant. This all sounds wonderful but examining the real life situation a little more closely is it actually reasonable to assume we can obtain this? I have not been, nor will I ever be pregnant and certainly have never experienced contractions and felt the veil clouding my vision as the first dose of analgesia enters my veins to deal with the discomfort a woman experiences during labour. Not to mention there are people admitting this couple, taking histories, establishing IV access, scanning bellies and a whole host of other pokes and prods along the way.
My Role Better Defined
Then I come in. Among all this chaos I deliver the information, pass along a pamphlet and do the best job I can to inform said couple of the upcoming decision. The trouble of course is how do we come to this mutual decision in the 15 – 30 minutes I spend with them during this crisis? The answer sadly is we do our best but don’t for a minute think that SDM has occurred. I don’t believe this is possible unless the family has prior experience with a preterm birth or perhaps is a HCP working with newborns or children with disabilities themselves. In fact Boss RD et al in their own research on the subject identified that in hindsight religion, spirituality and hope are what motivated parents rather than what was said at the time. In essence their minds are already made up. It doesn’t mean we shouldn’t strive for the SDM but at least in my opinion, unless their contractions settle, a calmness ensues, they have time to digest the information being given and then meet again under less stressful circumstances, the SDM is a nice idea but for many not a reality.
Shifting To The NICU
I recall a significant moment in my training when I saw how the SDM model can actually cause more grief than help. Dr. Keith Barrington a fellow blogger (if you haven’t discovered him, his work is fascinating over at Neonatal Research) published one of the most impactful pieces of research of the decade during my fellowship. The adverse neuro-developmental effects of postnatal steroids in the preterm infant: a systematic review of RCTs. Following this analysis there was a near moratorium on the use of post natal steroids. The issue this created was that to now receive them you had to be close to the end of the limits of care. At this point you either died (thereby concluding they are of no help) or you survived with disability that was due in part no doubt to how sick you had become (thereby concluding they are dangerous).
The moment I am referring to was a conversation with a family in which the attending managing the unit presented the risks and benefits of postnatal steroids to the family when the FiO2 was at 40% one day. The language used was non directive and the parents asked for another day to decide. The next day and each of the following two days they were unable to choose between giving the steroids and the perceived risk of brain damage versus not and watching the FiO2 climb by about 10% per day. By the time the FiO2 several days later was at 80-90% they were distraught, teary and feeling helpless. What they needed was direction; someone to give them some advice or more simply an educated opinion.
We can strive to share in the decision making but I continue to believe there is a time and place to help our families by taking a stance or side. We can equip them with as much information as we want but is there really any replacement for actually taking care of these infants, experiencing the ups and downs and hearing how they have done in follow-up? We simply can’t expect the average parent to understand the true long term consequences of their decisions. I am not saying we go back to a paternalistic time in medicine but I am saying that one size does not fit all.
We owe it to our families to pursue SDM when we can but we have an equal obligation to recognize when this ideal state is simply not possible. At this point we have to use the experiences and knowledge we have to provide them with the best advice we can. We have gone through medical training, and gone down these paths so many times. We can avoid biased opinion and rely on the facts as they are in our institutions but to not take a stand when it is needed at least for me is doing a disservice to those we are so eager to help.
Another year has passed and another World Prematurity Day is upon us. I thought about what to write for this day that draws attention to premature infants worldwide and was hit with many ideas which no doubt will form the basis for many posts to come. There was one thought that struck me though as being so important to think about as we push forward, striving to improve survival across the globe for our smallest patients. There is no doubt that you will have heard the expression “just because we can do something, should we?” In 2015 I don’t think this applies more than at this very moment.
At a Tipping Point
You see we are at a tipping point as Malcolm Gladwell explained so brilliantly in his book by the same name. In April of 2015 Rysavy et al published the results of survival and morbidity data for infants born in 24 US hospitals between the ages of 22 – 26 weeks. The nearly 5000 infants included demonstrated two very important things. Firstly, survival is possible at 22 and 23 weeks and there is a chance, albeit less than 50% that these infants will survive without moderate or severe disability. Secondly, at these gestational ages 75% of hospitals included provided active resuscitation to these infants. Given that this is the largest study out there and shows that survival is possible and we can expect to see some good outcomes it would seem logical to move forward with universal resuscitation of these infants would it not?
You Are Going To Practice on What?!
As the saying goes though, “Perfect Practice Makes Perfect”. Not all hospitals have equal performance at these gestational ages which is demonstrated in the ranges of outcomes across hospitals as shown in the Rysavy paper. To even suggest that we need to practice on premature babies will no doubt leave many of you feeling queasy but in essence that is what is truly needed to improve our outcomes further. An infant born at 22 – 24 weeks is vastly different than one born at a later gestational age. Their skin is extremely fragile and prone to breakage with resultant risk of infection. Their lungs are in a stage of development that has yet to produce any real abundance of gas exchanging alveoli and their brains lacking the sulci and gyri that are to come many weeks later. They are in need of meticulous “best practice” care and without that their outcomes are certainly to be influenced. Depending on the centre though, you may see 5, 10, 15, 20 patients a year at these ages. How can a team possibly gain enough experience in treating these children appropriately if they see 1 or 2 every two months? Add to this that you may have 10 different Neonatologists so on average each of you may take care of one patient a year at birth. This is a recipe prone to poor outcomes if you ask me.
The Evolution of the Small Baby Unit
The answer no doubt will lie in creating smaller teams; so called “Small Baby Units”. Such units have small groups of health care providers dedicated to treating such infants thereby increasing the frequency of individuals exposure to these babies. There is some recent evidence published in Pediatrics that supports this notion. Small Baby Unit Improves Quality and Outcomes in Extremely Low Birth Weight Infants. In this study a period of two years before and four years after opening such a unit were compared across a number of measures. The findings were as follows “There was a reduction in chronic lung disease from 47.5% to 35.4% (P = .097). The rate of hospital-acquired infection decreased from 39.3% to 19.4% (P < .001). Infants being discharged with growth restriction (combined weight and head circumference <10th percentile) decreased from 62.3% to 37.3% (P = .001). Reduced resource utilization was demonstrated as the mean number per patient of laboratory tests decreased from 224 to 82 (P < .001) and radiographs decreased from 45 to 22 (P < .001).” I hope you would agree that achievements such as these are worth the effort to create such an environment. Future studies I believe will confirm these findings although having the gold standard RCT may be difficult to achieve as I suspect we will have lost equipoise.
This brings me to the final point though and that is whether we are ready as a health care system for the increase patient load that this change will bring about. Based on an expected stay of 4 months for a baby born at this age and knowing the average number of such babies delivered per year, we would be looking at about 600 patient days per year added to each hospital’s occupancy in our two centres. This represents about a 5% increase in patient bed days per year. Five percent may not seem like a large increase at first blush but when we like many hospitals have been trying to deal with staffing issues and many days in which we are at or near capacity, this is not an insignificant challenge. It is a challenge though that we must face head on. Resources must be found, and space provided to accommodate for these children. We live in a world now where it is not solely up to us but to the family as well who must be integral to any such decision to either pursue or withdraw care. News of such infants surviving has spread to the public and I have no doubt that many families will have heard stories of such survivors. The next phase of care for these infants must address the shortcomings in care at the moment.
How do we educate families about what to expect in the long run?
How do we support these families when they make such difficult decisions either way?
How do we support our front line staff who may hold quite discrepant viewpoints about what is “right” yet expect them to function as one team moving clearly in a direction that supports the family?
How do we ensure that our focus on our smallest infants does not distract us from the attention needed by those born at later gestational ages?
I could go on but these are just some of the questions that I hope the next year begins to tackle. We are in the midst of an evolutionary point in Neonatology and we owe it to ourselves and the families we care for to navigate this change as best we can.
In 2018 where do we stand on this question? Upcoming retrospective trials and work by EPIQ-4 may help to resolve this issue. In the meantime what does the existing evidence say?
The decision to extubate an extremely low birthweight infant is one of the most common sources of disagreement and anxiety in the NICU. As a resident, I recall an unwritten rule that “no baby under 750g will have a trial of extubation as they will most certainly fail”. As time went on however, studies suggested that not only is this a false statement but also that the duration of intubation was directly correlated with risk of BPD. As Danan described, for infants less than a 1000g, delaying extubation when they had reached minimal settings did not result in lower rates of BPD. Moreover 60 – 70% of infants who have such extubation attempts are not reintubated within a week, so it is possible to have success.
The detractors however express concern about the 30-40% who do require reintubation and worry that harm will be caused by such acts. Frequent concerns are voiced with respect to potential trauma to the airway leading to subglottic stenosis; potentially increasing the risk of BPD and finally the belief that attempts are futile so why put parents through the stress in the midst of perceived near certain failure. The problem with these perceptions however is that they are mostly the culmination of confirmation bias. Patients that have multiple failed extubations are remembered especially when they develop significant complications, while the ones who extubate successfully are quickly forgotten. This is not intentional in any way but simply a human tendency to follow the pattern of “the squeaky wheel getting the grease”. The preemies who do poorly are front and centre as they take up a great deal of our time & attention while the ones who do very well while celebrated, are not as easily remembered for the success they demonstrated when extubated.
Being someone who believes in extubating as soon as possible though I was surprised several months ago to find a paucity of data demonstrating that there was in fact support for the practice in terms of better outcomes being associated with early extubation. While small studies certainly pointed in that direction the real question was about to be answered in the study that follows.
Is it better to fail multiple times or be intubated once for the duration of ventilation.
This is the central question that I believe has been answered as good as it will ever be by EA Jensen et al in JAMA this past month “Effects of Multiple Ventilation Courses and Duration of Mechanical Ventilation on Respiratory Outcomes in Extremely Low-Birth-Weight Infants.” This retrospective review included 3343 infants below 1000g and examined the primary outcome of BPD and secondary outcomes of death, continued supplemental oxygen use at the time of discharge, and tracheostomy among survivors. As you might expect, regardless of whether one compared duration of ventilation or number of reintubations, variables such as need for surfactant, postnatal dexamethasone, PDA treatment and NEC became more common as exposure to either outcome increased. When a logistic regression model was applied though it became evident that the odds ratio for BPD increased to a much greater degree with increasing duration of ventilation than the number of attempts.
To quote the authors:
“After adjustment for the cumulative duration of mechanical ventilation, a greater number of ventilation courses was not associated with an increase in the risk-adjusted odds of supplemental oxygen use at discharge. The number of ventilation courses remained associated with increased risk of BPD only among infants exposed to 4 or more courses.”
The Needs of The Many Outweigh The Needs of The Few
In other words, for an infant to have an increased risk of BPD they would need to have failed extubation four or more times! It is not easy to predict with certainty who these children will be but if we take these findings as accurate (since I believe we will not see an RCT of this magnitude anytime soon) is it ethical to keep a child intubated due to the belief that they might fail? On the contrary, how can we not try when failure is not associated with adverse outcome? In fact none of the secondary outcomes were found to be increased either. Importantly, there was no difference in the need for a tracheostomy in this population which may serve as a proxy for lack significant airway injury from multiple intubations. The goal of this post is to provide all of us who care for these preemies with the reassurance that if they fail extubation, once, twice and even three times that is still a good thing. For the ones that fail more than that, if only we had a crystal ball we might have spared them that risk but given that we live in a world without this ability, we owe it to our patients to try. Moreover, we owe it to the parents of these children to educate them that failure can still be a good thing.
May I never have a near 100% success at extubating my patients on the first try. If I truly care for them I will embrace my failures and know that I have done the right thing.
Something kind of big happened today. I received a notice on my Facebook Page that there were now 3000 “likes” for this little community that I started back in February of this year. I was asked early on what the purpose of this blog and Facebook page were and in response I wrote the piece Inside the mind of a Neonatal Blogger. Why am I doing this?. If you are curious, this gives you a good glimpse into my motivations.
Truth be told though I wasn’t really sure what this would become and early on my goal was to have 300 likes and then when that was passed 1000. What has happened since has been quite the surprise. I could not have imagined the growth in the page and the blog since that time.
The map above actually represents all the countries that have read posts from this blog. The red colour aside from being Canada indicates the top country in terms of views, the USA is second in orange and then yellow being the rest of the countries on the map. The white areas are as of yet countries that have not read a piece but who knows what will happen given a little more time!
An interesting shift though has occurred on the Facebook page and that is over the last month a real community has evolved. Up until recently a given post might generate one or two comments but I have noticed something quite special evolving on this site. That is that not only have the comments increased with each post but you the readers are beginning to use this site as I had envisioned. Comments are being made and you are responding rather than leaving it all up to me. Don’t take this the wrong way though, I am more than happy to respond but I am enjoying reading your own thoughts as well. We come from such a wide variety of backgrounds and experiences and these differences are beginning to express themselves in your written words.
As much as I enjoy finding interesting Neonatal content to share with you, I equally enjoy seeing how you respond. An additional complement is that the interactions are almost always respectful, productive and generating of even more dialogue. I learn from you just as you learn from me so let me say thank you for that!
Lastly, I have come to understand that “All Things Neonatal” really does have to be just that. Try as I might I have not been able to unlock the secret of what truly interests the reader. Topics that I would have predicted would “go viral” have been put out into the internet only to produce a sound “thud” as they fall flat which others that I might have thought would generate mild interest have exploded. It is this unpredictability that keeps me excited about putting out each post as I continue to be fascinated by my inability to predict what leads to a boom or a bust.
In case you are wondering though the top three posts have been:
If you haven’t read these then you may be missing out as your fellow readers seemed to think these were a big hit.
Thanks to each of you for following and keep the comments coming. Also if you try something out that you see on this site and adopt it in your hospital please let me know how it has gone. We can all learn plenty from each other. As our base grows so does our collective knowledge and in my opinion that is a good thing.