Spitzer’s rules

Alan Spitzer is a name well known to most neonatologists.  For several reasons: he has been a vital force in neonatology for many years, he is one of those good-natured, but intellectually rigorous physicians that neonatology has been blessed with. He also created many years ago a list of Spitzer’s rules of neonatology, that were recently challenged by a tongue-in-cheek study by my good friend Tony Ryan. To which he responded.

 After our recent article about etiquette in the NICU, Alan wrote to us about his own personal experiences on the receiving end of NICU care, the details of how it came about are his to tell if he wishes, but I asked him for permission to quote his additional rules of neonatal etiquette, which he granted.

So here, with gratitude to Alan, are some supplemental rules of etiquette for NICU docs.

1) Don’t disappear when I need you the most. Many physicians seem to become increasingly unavailable when the situation is complicated or unclear. That is when families need a physician to be most available to discuss changes in clinical condition, options for treatment, or likely prognosis. The worse the situation is, the more that you need to make yourself visible and present for a family in crisis.

 2) When parents appear with a wealth of material that they have located on the Internet, do not immediately dismiss it as rubbish. Some of it might be quite valuable and appropriate for the situation. More importantly, by briefly reviewing the information with the family, you validate them as your partners in the care of their infant and enhance your relationship.

3) If a parent is medically trained, do not assume that they need no detailed explanation of the infant’s situation. They may actually need more information from you than the usual family, since they may have an entirely different set of concerns that need to be addressed, generated from their prior medical experiences.

4) In times of difficult decisions, talking out loud to families and letting them see your thought processes are often helpful approaches. In complex situations, parents may wonder if you have evaluated all the possible options or truly understand what is going on with their infant. By letting them see how you are evaluating the situation in your own mind, you may greatly reassure them, since they will immediately perceive the broad scope of your thought processes. Nothing is more disconcerting to a family than wondering if their child’s doctor has overlooked something, nothing is more reassuring than to know that he or she has not only considered that issue, but many more possibilities.

5) Never, ever be curt, rude, or patronizing, no matter how demanding or confrontational a family may be. When a family persists with this kind of behavior, it is likely that you have not addressed their critical concerns and that is why they are so frantic. By directly asking them to tell you what is troubling them may reveal issues that will quickly allow you to put their minds at ease.

Thank you Alan for these insights!

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How should we feed preterm babies?

Two new interesting articles to address this important question.

Corvaglia, L., et al. (2014). “Cardiorespiratory Events with Bolus versus Continuous Enteral Feeding in Healthy Preterm Infants.” J Pediatr.
The authors evaluated the effects of bolus vs continuous tube feeding in 33 preterm babies on cardiorespiratory events, detected by polysomnographic monitoring. The infants received a bolus feed, followed by an infusion feed over 3 hours. Continuous tube feeding resulted in a significant increase of apneas and apneas-related hypoxic episodes compared with bolus feeding.

Nurses in my NICU often prolong the duration of feed infusion when they think the baby is not tolerating bolus feeds. Babies may end up with feeds over 2 hours out of 3, although they will not extend to continuous feeding without a medical order. many are convinced that longer feeding duration improves their baby’s tolerance, including having fewer apneas, I have never been sure, but for most babies, unless they are close to starting oral feeds, it is probably unimportant. This study by Corvaglia suggest the opposite, that prolonged feeds actually increase apneas.

In the next RCT, infants were randomized to either have gastric residuals measured routinely or not. In my career I have worked in NICUs where residuals were religiously measured and responded to, NICUs where they were measured but interpreted according to the day of the week, and one NICU where we had not measured a residual in 15 years. My impression was that the only difference in outcomes was that babies in NICU #3 achieved full feeds earlier, and had no increase in adverse outcomes. It is always nice to be proven right!

Torrazza, R. M., et al. (2014). “The value of routine evaluation of gastric residuals in very low birth weight infants.” J Perinatol. Perhaps ‘proven’ is a bit strong, this is a small RCT, just 30 very preterm babies per group, with a limited power as a result, but there is no evidence of adverse results in the group who had no measurement of residuals, and they got to full feeds sooner and stopped TPN and central venous access earlier than the controls.

I think that any NICU that wants to continue to use routine gastric residuals is now required to perform a bigger, adequately powered trial to prove that they are useful. Otherwise, everyone should stop.

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NO, not diaphragmatic Hernias!

Many of you will know that I am responsible for the inhaled NO systematic review in the Cochrane database.  One part of that review examines the data for iNO use in infants with diaphragmatic hernia. Unfortunately there were only about 80 babies with diaphragmatic hernias for whom we could find data. That is the data from the Ninos CDH trial, and the CDH stratum of Clark’s trial. Among this small number of babies there was no evident benefit of iNO, in fact a few more of the iNO treated babies ended up on ECMO than the controls, but given the small numbers that could just be chance.

A new publication (Campbell BT, Herbst KW, Briden KE, Neff S, Ruscher KA, Hagadorn JI. Inhaled Nitric Oxide Use in Neonates With Congenital Diaphragmatic Hernia. Pediatrics. 2014;134(2):e420-e6) reports iNO use among over 1700 babies with CDH. More than half of them received iNO at some point, and it was very variable between hospitals, ranging from 34% to 92% of their CDH babies receiving iNO.

The question now is, is that wrong? What is the right proportion? Should it be 0? My own practice is not to use iNO routinely in babies with CDH, given the data that we have, but that the data are so limited, that I would rather try iNO if a baby is approaching ECMO criteria. So rather than starting iNO fairly early in most babies with pulmonary hypertension, I start it prior to calling the ECMO team. I don’t know if that is right, and we probably treat more than 34% and less than 92% of our CDH babies with iNO.

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Babies with Super Powers

Rachel Callander is a professional photographer from New Zealand who had a baby with a congenital problem that led to disability, and a sadly brief life. Like many parents in such a situation, Rachel was totally honest about her daughter, and saw the many wonderful abilities that she had, in addition to the dis-abilities. She has now published a book with photos and text showing 72 babies with a variety of congenital problems; for each baby there is a description of their super-powers.

The book is called ‘The Super Power Baby Project‘. It was also featured on New Zealand TV (click here)

There is also a very touching introduction by the family’s clinical geneticist, in which he says the following:

What is perhaps new to some is the idea that these children also represent exceptional examples of humanity. They have talents and gifts in equal if not greater measure than those of us who do not have to confront physical or cognitive disability personally. This powerful narrative and photo-essay shows that these children are often agents of transformational change for their families and friends.  It is as though their genetic conditions strip some artifice from those of us charged with caring for them and many of those they meet. Somehow these children can pierce the bubble we insulate ourselves in, so that the words mentioned by so many in these pages – patience, tolerance, joy, and acceptance – take a stronger hold in the hearts of those they touch.

In the medical literature, there are a lot of data about how families are counselled when there is a diagnosis (ante- or postnatal) of serious disorders, with the potential for disability. Most of that literature shows that the information is presented with a very negative slant. I think that parents deserve to know that it is not all black. We need to find a way to be honest and open about the problems faced by families whose children have these diagnoses, and at the same time be honest about the positive aspects as well.

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Pain control for intubation by trainees

Because of my research interest in premedication for endotracheal intubation I have been asked several times to talk to groups about the subject, I have often been asked whether intubations by trainees should be premedicated, because their risk of failed intubations is greater. My response has been: premedication decreases the risk of failure, makes the procedure less painful for the baby, and increases the ease and speed of intubation, and those facts are true in studies where residents, and other trainees, have been part of the intubation teams, as well as when the teams were just senior people.

Data published recently from San Diego confirms these thoughts.

Le CN, Garey DM, Leone TA, Goodmar JK, Rich W, Finer NN. Impact of premedication on neonatal intubations by pediatric and neonatal trainees. J Perinatol. 2014.

I think this graph says it all

Unfortunately we are unable to provide accessible alternative text for this. If you require assistance to access this image, please contact help@nature.com or the author

Success rates are very poor for interns and residents, and somewhat better for fellows. For every level of trainee, premedication improves success.  The success rates were calculated as successful intubation per attempt, and a trainee was allowed a maximum of 3 attempts before passing to the next most experienced person. So if you try twice for an individual baby, and get it on the second attempt then you have a 50% success rate.

I calculated from the data presented the success rate for intubations without paralysis, there weren’t many, as their routine cocktail includes a muscle relaxant. There were 186 premedicated intubations without muscle relaxant, with 54 successes. That gives a 29% success rate, which is intermediate between the non-medicated, and the fully premedicated intubations. All of which I think gives a lot of support to the AAP recommendation (and the CPS statement) that all non-emergency intubations should be premedicated, and a muscle relaxant included, unless there is a contra-indication. Whether or not trainees are doing the procedure.

The low success rates also say to me that the most fragile patients are no place to practice. With such low success rates, our trainees should start with formal training, then simulations with high-fidelity mannekins, then larger more stable babies under heavy supervision by a real expert (not a first year fellow who is just starting) perhaps with a video laryngoscope in recording mode to give feedback, and only when they have demonstrated competence then proceed to more immature, fragile at-risk babies.

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Necrotizing Enterocolitis and Surgery

Hull MA, Fisher JG, Gutierrez IM, Jones BA, Kang KH, Kenny M, et al. Mortality and Management of Surgical Necrotizing Enterocolitis in Very Low Birth Weight Neonates: A Prospective Cohort Study. Journal of the American College of Surgeons. 2014;218(6):1148-55. This data is drawn from the Vermont Oxford Network of infants with a diagnosis of NEC. About 50% of the 17,000 infants required surgery, mortality prior to discharge was 30% among surgical cases, mortality among surgical cases was similar for the tiniest babies and for larger ones. Non-surgical NEC had a mortality that was greater among the smallest infants. The age at death is not reported, but prolonged hospitalization and delayed death do occur unfortunately in this group of babies.

Among 182 preterm infants at Great Ormond Street who had surgical NEC, 15 were too sick to go to ‘theater’ and had surgery in the NICU. Wright NJ, Thyoka M, Kiely EM, Pierro A, De Coppi P, Cross KMK, et al. The outcome of critically ill neonates undergoing laparotomy for necrotising enterocolitis in the neonatal intensive care unit: a 10-year review. Journal of Pediatric Surgery. 2014;49(8):1210-4.
They did not do well. 10 of them died within a few hours, another 2 died after prolonged NICU stays. Although this is a very small group, it suggests that if your reason for having surgery in the NICU is that you are too sick to move (rather than doing it in the NICU as a policy) then you should maybe consider if it is really a good idea.

Murthy K, Yanowitz TD, DiGeronimo R, Dykes FD, Zaniletti I, Sharma J, et al. Short-term outcomes for preterm infants with surgical necrotizing enterocolitis. J Perinatol. 2014. And from the Children’s hospitals neonatal consortium, a report of over 700 cases of surgical NEC, the babies were outborn (as it was from children’s hospitals) and were transferred for surgery. The study shows a hospital mortality of about 37% for the less mature babies (<28 weeks), and a little lower for the larger ones, 30%. Two additional outcomes, the frequency of short bowel syndrome was high at about 25% (it was defined as needing TPN for more than 90 days), but all except 2 of them were able to go home without TPN: Hospital stay tended to be very long for survivors, with a median of over 100 days, and a upper third quartile for the immature babies of 168 days. In other words a quarter of surgical NEC babies, <28 weeks, are hospitalised for 6 months or more. The total number of surgical procedures was over 2,800, or about 4 per patient, some were re-anastamosis of ostomies, only 124 had a single laparotomy.

These three very recent studies demonstrate quite clearly how serious surgical NEC is, and how important it is to continue to find ways to prevent it. Probiotics, even though they are effective, are by no means 100% effective.

They also give very clear data from very large groups which we can use to counsel parents. It is not a case of just going to the OR and taking out the sick bowel; starting surgical intervention for NEC often leads to prolonged TPN, prolonged hospitalisation, multiple further interventions, surgical and medical, and, of course, in the long term, reduced developmental and motor abilities.

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Can we share decisions?

I found this article quite insightful. (Joseph-Williams N, Edwards A, Elwyn G: Power imbalance prevents shared decision making. Bmj 2014, 348).

Shared decision making is a buzz-word (buzz-phrase I guess) to describe how to pursue good decision making with patients (or in our case parents). The general idea being that the physicians have the knowledge, the training and the insight to know what options are appropriate, and the risks and benefits of each option. The patient has their values, their opinions, and their preferences, and by putting these aspects together we can come to a decision which is in the best interests of the patient and consistent with their values.

This new article is an analysis piece based on the authors systematic review of the literature of barriers to shared decision-making, as a result of which the authors conclude:

  • Many patients currently feel they can’t participate in shared decision making

  • Power imbalances in the clinical encounter are a key barrier even if patients have the required knowledge

  • Patients need to know that their input is valued and won’t damage their care

  • The attitudes of both patients and clinicians need to change to enable shared decision making

I think the power imbalance in neonatology maybe even more important, many parents do not feel free to express their wishes, their doubts, their hopes, because of the different status of the persons involved, but also because parents are often completely lost at the start of the hospitalisation. It is an experience so far outside of what they have lived before that few have any relevant knowledge when we first meet them and the ‘power imbalance’ is really marked. What to do about this? How do we empower parents, and help them recognize the importance of their part in the shared decisions?

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