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.
If you are reading this and have a baby in the NICU with respiratory distress syndrome (RDS) otherwise known as hyaline membrane disease you might be surprised to know that it is because of the same condition that modern NICUs exist. The newspaper clipping from above sparked a multibillion dollar expansion of research to find a cure for the condition that took the life of President Kennedy’s preterm infant Patrick Bouvier Kennedy. He died of complications of RDS as there was nothing other than oxygen to treat him with. After his death the President committeed dollars to research to find a treatment and from that came surfactant and modern ventilators to support these little ones.
What is surfactant and what is it’s relationship to RDS?
When you take a breath (all of us including you reading this) oxygen travels down your windpipe (trachea) down into your lung and goes left and right down what are called your mainstem bronchi and then travels to the deep parts of the lung eventually finding its way to your tiny air sacs called alveoli (there are millions of them). Each alveolus has a substance in it called surfactant which helps to reduce the surface tension in the sac allowing it to open to receive oxygen and then shrink to get rid of carbon dioxide that the blood stream brings to these sacs to eliminate. Preterm infants don’t have enough surfactant and therefore the tension is high and the sacs are hard to open and easily collapse. Think of surface tension like blowing up those latex balloons as a child. Very hard to get them started but once those little balloons open a little it is much easier! The x-ray above shows you what the lungs of a newborn with RDS look like. They are described as having a “ground glass” appearance which if you recall is the white glass that you write on using a grease pencil when you are using a microscope slide. Remember that?
Before your infant was born you may have received two needles in your buttocks. These needles contain steroid that helps your unborn baby make surfactant so that when they are born they have a better chance of breathing on their own.
Things we can do after birth
Even with steroids the lungs may be “sticky” after birth and difficult to open. The way this will look to you is that when your baby takes a breath since it is so difficult the skin in between the ribs may seem to suck in. That is because the lungs are working so hard to take breath in that the negative pressure is seen on the chest. If your baby is doing that we can start them on something called CPAP which is a machine that uses a mask covering the nose and blows air into the chest. This air is under pressure and helps get oxygen into the lungs and gives them the assist they need to overcome the resistance to opening.
Some babies need more than this though and will need surfactant put into the lungs. The way this is done is typically by one of two ways. One option is to put a plastic tube in between the vocal cords and then squirt in surfactant (we get it from cow’s or pigs) and then typically the tube is withdrawn (you may hear people call it the INSURE technique – INtubate, SURfactant, Extubate). For some babies who still need oxygen after the tube is put in they may need to remain on the ventilator to help them breathe for awhile. The other technique is the LISA (Less Invasive Surfactant Administration). This is a newer way of giving surfactant and typically involves putting a baby on CPAP and then looking at the vocal cords and putting a thin catheter in between them. Surfactant is then squirted into the trachea and the catheter taken out. The difference between the two methods is that in the LISA method your baby is breathing on their own throughout the procedure while receiving CPAP.
Even if no surfactant is given the good news is that while RDS typically worsens over the first 2-3 days, by day 3-4 your baby will start to make their own surfactant. When that happens they will start to feel better and breathe easier. Come to think of it you will too.
Once upon a time we would use our gut instinct to inform our decisions as to whether it was reasonable to try and extubate (take out a breathing tube) or to lower or stop CPAP (continuous positive airway pressure). We used to look at home much oxygen a baby needed and what the pressures were on the machine offering them support and combined with what we saw on the patient monitor for oxygen saturation make a decision as to what to do next.
In the last decade or so people realized (as did one of our own respiratory therapists) that buried within all of this data on the patient monitor one could get a report on what percentage of time each infant has spent at different levels of systemic oxygen saturation. A sample report might look like this.
>95% – 10%
90 – 94% – 55%
85-89% – 20%
80 – 84% – 10%
<80% – 5%
Seeing this report though is only half the story. Without knowing how much oxygen on average an infant has received in the last twenty four hours to achieve this range it is somewhat meaningless. The amount of oxygen given may show that we the baby is doing better or worse. For example, if the above histogram was achieved using a range of 25-35% oxygen and was no different than the day before but the infant had been on 30-40% oxygen and pressure the day earlier then we have gotten somewhere! This infant has actually improved. The histogram is unchanged but we have given less oxygen on the same amount of pressure. If the histogram was unchanged but the amount of oxygen was 21-25% the day before, the lungs have gotten worse assuming the same pressure.
It is also worth noting that higher numbers are not alway indicative of a good thing. Take for example this histogram:
>95% – 50%
90-94% – 35%
85-89% – 8%
80-84% – 7%
<80% – 0%
If this infant was on room air and having these numbers I would be overjoyed. What if this was a baby though who was on 30-40% oxygen? These numbers are too good! We know that too much oxygen can be bad for the lungs and eyes. For babies on oxygen we typically target 88-92 % oxygen saturation (others use 90-94%). If we have 50% of the time above 95% oxygen we clearly are using too much and have to cut it back.
As parents you will hear us talk about histograms on rounds and use the information to make decisions about oxygen and the amount of breathing support your baby needs. If you have wondered how we use this information and what this seemingly random assortment of numbers really means, this is how we interpret it. The next time someone says that your infant needs more or less support ask for the histogram information if your unit uses it and you will see whether the data support the change.
It’s World Prematurity Day today and if you are a parent or are caring for a baby who has just entered this world before 37 weeks GA you are now part of a membership that counts 15 million new babies each year according to the WHO’s data. As I tell most new parents who have a baby admitted to our unit “It’s ok to take some time to adjust to this. You didn’t plan on being here”. That is true for most who go into spontaneous labour but of course those who are electively delivered due to maternal or fetal indications that have been followed closely often have time to prepare for the journey to the NICU. Many of these parents will have had the opportunity to visit the NICU or even connect with other parents before the anticipated birth of their child to at least get a glimpse into what life is like in the NICU. Much has been written about parental stress and methods to reduce it and I find that a piece that appeared in the Huffington Post offers some good pointers to helping parents manage the transition from pregnancy to NICU. The piece is entitled 5 Things Never To Say To Parents Of Preemies (And What To Say Instead).It is well worth a read but the one thing that stuck out in my mind is one very important thing to say.
Congratulations on the birth of your baby
There is no doubt that the family who gives birth to a preterm infant is experiencing stress. What may be lost in the first few days of surfactant, central lines and looking for sepsis among other things is that a new member of the 15 million strong has entered this world. They have a new child and just like anyone else should receive a congratulations. No one needs to tell them to be worried. They already are and likely view many of the possibilities more pessimistically than you do. Taking a moment to say congratulations though may go a long way to reminding them that amidst all this stress there is something to rejoice in and look to the future. If we aren’t supportive then I have no doubt the subconscious message is that they shouldn’t have hope either. I am not suggesting that we sugarcoat what is really going on but one can be honest about likely outcomes and still celebrate the arrival of a new baby. Much has also been written recently about a number of strategies to reduce stress in the NICU such as skin to skin care, integration of families more closely into the patient care team and forming parent support groups just to name a few. What else can be done to improve the quality of life for parents going through this journey?
Enrol Your Baby In A Research Study
I work in an academic centre and given the volume of research projects at any given time there is a need to approach families and sometimes quite soon after delivery. interestingly, I have heard from time to time that individuals have been hesitant to approach families due to a feeling that they are overwhelmed and won’t be receptive to being approached in this fragile state. I am guilty of the same thoughts from time to time but maybe it is time I reconsider. Nordheim T et al just published an interesting study on this topic entitled Quality of life in parents of preterm infants in a randomized nutritional intervention trial. This study was actually a study of parents within a study that called the PreNu trial that involved an intervention of a energy and protein supplemental strategy to enhance weight at discharge. The trial was an RCT and unfortunately although well intentioned was stopped when the intervention group was found to have an unexpected increase in sepsis rates. Although this study did not ultimately find a positive outcome there were additional analyses performed of quality of life and parental stress at two time points the first being during the hospital stay and the second at 3.5 years of age. The patients were all treated the same aside from the nutritional intake and in the end 30 intervention parents and 31 single parents not enrolled in a study (many in couples) participated in the study. In followup a little less than 70% completed the stress measures at 3.5 years. The results are found below.
How Do We Interpret This
The parents in this study who were part of the intervention group were about 3 years older so perhaps with more life experience may have developed some better coping strategies but during the hospital stay those who participated in research had better measures of quality of life and at three years better reports of sleep and energy levels. The study is quite small so we need to take all of this with a grain of salt with respect to the 3.5 year outcomes as there are so many variables that could happen along the way to explain this difference but I think it may be fair to acknowledge the quality of life measure during the stay. Why might parents report these findings? The finding of better quality of life is especially interesting given that more patients in this study had sepsis which one would think would make for a worse result. Here are a few thoughts.
Involvement in research may have increased their knowledge base as they learned about nutrition and expected weight gain in the NICU.
Frequent interaction with researchers may have given them more attention and with it more education.
Some parents may have simply felt better about knowing they were helping others who would come after them. I have heard this comment myself many times and suspect that it would be attributable at least to a certain extent.
A better understanding of the issues facing their infants through education may have reduced stress levels due to avoiding “fear of the unknown”.
Regardless of the exact reason behind the findings what stands out in my mind is that participation in research likely provides comfort for parents who are in the midst of tremendous stress. Is it the altruistic desire to help others or being able to find something good in the face of a guarded outlook? I don’t know but I do believe that what this study tells us is that we shouldn’t be afraid to approach families.
After first congratulating them give them a little time to absorb their new reality and then offer them the chance to improve the care for the next 15 million that will come this time next year for World Prematurity Day 2017.
I don’t know about your place of work but our centre is busy and by busy I mean our resources and staff are almost always working at full capacity. There is a shift afoot though in modern Neonatal care to shift some of the responsibility for care to the parents. You might say it always should have been this way but as with any speciality we grow, learn and evolve over time.
The most recent stage of evolution is the development of the FiCare philosophy. This is not the first time (and likely not the last) that I will reference this strategy. For more information on what it is and what it takes to practice this concept you can click on the FiCare website from Mt. Sinai Hospital in Toronto here. The gist of it though is that with education and support from nursing in particular some of the traditional functions that are carried out by health care staff can be transferred to the parents. Something as basic as identifying their baby can be a start with progression to providing part of the daily report, participating in handling of their infant during times of stress and performing skin to skin care for many hours a day. The parents are asked to commit to a significant number of hours per day to make this work and the benefits of having close contact are obvious as well.
Can Physiotherapy Be Taught To Parents?
As someone who has been involved in the FiCare project I took particular interest in an article this past month which in essence is related to the teachings of FiCare. T. Ustad from Norway and colleagues published the following Early Parent-Administered Physical Therapy for Preterm Infants: A Randomized Controlled Trial. As someone who values the contribution of our physiotherapists I was curious as to what could be transferred given the demands on an individual PT’s time. Add to this that during surges when many babies under 29 weeks are born and the number of patients they need to see may become overwhelming. What if parents though could take over some of this workload? Well that is what they did in three centres in Norway in a RCT single blinded intervention.
What did they do?
All babies were born < 32 weeks and underwent the intervention between 34 – 36 weeks with final evaluation at 37 week. Parents were taught to perform 10 minutes of manipulation with the goal of improving postural control, head control, and midline orientation. Teaching was done through videos, photos, booklets and direct teaching by the PT on day 1 and then on day 2 return demonstration with correction by the PT occurred.
It was single blinded in that the parent and the PT who did the teaching knew of course which baby received what treatment but the PT doing the standardized evaluation after the two week period was over was blind to treatment assignment. The authors used the TIMP scoring system for spontaneous movements which as it can take up to 30 minutes in some cases may stress the infants so for those a scoring system consisting of half the items was developed called the TIMPSI. This has beee shown previously to correlate well with the larger more involved test.
Sample size calculations were based on finding a difference at 2 years of 0.5 SD between groups which meant they needed 63 infants to show such a difference. They enrolled 153 but after some withdrew the groups were 63 in the intervention and 76 in conventional care.
On to the results
Just so we are clear, this was only designed to be a two week intervention but it was meant to be twice daily for ten minutes at a time. Graphically, using the z-scores for the TIMP scores we have the following graph. Clicking on the highlighted link will tell you more about z-scores but it measures simply how many standard deviations above or below a population mean a score is.
So in this case the absolute difference after the two week period with evaluation one week later is 0.42. This falls short of the 0.5 at two years the sample size calculation was looking for. As with many differences in outcome the results tend to improve with time. Think about the CAP study as an example in which those babies who received caffeine initially had better developmental outcome measures than those who did not but by school age there was no longer a differenced. If the difference is less then one needs many more patients to show a difference than the original sample size would allow. In the end one also needs to think about whether the difference in scores is of statistical interest or if it has true clinical impact.
Some things to consider though
The parents in the intervention group did keep a journal and what they actually did was not what was designed in the study. The average number of sessions per day was only 1.3 with a length of 9 minutes per session. The goals again were 2 for 10 minutes each. The second thing to think about is that by looking at the difference in results from this short intervention it is an exciting mental exercise to think about a couple things. The first is what might the differences look like if the families had been able to do two sessions each per day instead of being closer to 1. The extra minute may not have made such a difference but the extra session might have.
The next thing to consider is how short a time period this really was. What if the plan had been rather than only two weeks, providing the intervention till discharge which for some born at 24 weeks might have been a corrected age at 40 – 44 weeks when they finally went home. Would a much longer exposure have made a bigger difference?
It is always fun to speculate and while I cautioned that the difference seen at two years may narrow further I wonder what the impact on the families will be after the intervention and post discharge. They were taught a new set of techniques to support motor development. Would they simply revert back to the control group afterwards or informally continue on which is what I suspect to some degree they would. The log book doesn’t count the impact of these “extra sessions”. The authors plan an interim analysis along the way so that will be interesting to see.
What the study does show though and what I think is exciting is that it is not just nursing that can transfer some functions to parents. Clearly the parents in this study learned something about handling of patients from the perspective of a PT. I would hope that this study might inspire PTs and other disciplines as the FiCARE approach widens to consider equipping parents with some of their skills sets that are traditionally owned by those specialties alone. What we are discovering with time is that parents are capable of doing more than we have had them do in the past. To make it family centred care truly make them part of the team!
A good idea that is for sure and stress may be what the infant in the picture is displaying as a reflection of what her parents are feeling! A growing trend is to include parents in rounds and that is the subject of this piece? It sounds like a great idea and may feel that way as you have had a personal experience that has been favourable, is the practice in your unit or it just seems to make sense? It might come as a surprise to you who have followed this blog for some time that I would even ask the question but a social media friend of mine Stefan Johansson who runs 99NICU sent an article my way on this topic. Having participated in the FiCare study I realised that I have a bias in this area but was intrigued by the title of the paper. The study is Parental presence on neonatal intensive care unit clinical bedside rounds: randomised trial and focus group discussion by Abdel-Latif ME et al from New Zealand and was performed due to the lack of any RCTs on the subject specifically in the NICU.
Before I go on though I have to disclose a few biases.
I love parents being on rounds so I can speak with them directly and have them ask me any questions they may have after hearing about their infants condition.
Our unit encourages the practice.
We are rolling out the principles of FiCare after being part of the study which encourages parental presence at the bedside for far more than just rounds.For information on implementing FiCare click here
While this study is the only reported RCT on the subject in the NICU, the FiCare results will be published before long.
What is the problem with having families on rounds?
The detractors would say that sensitive information may be more difficult to discuss out in the open for fear that the family will take offence or be hurt. Another concern may be that teaching will be affected as the attending may not want to discuss certain aspects of care in order to prevent creating fear in the parents or awkwardness in the event that the management overnight was not what they would have done. Lastly, when patient volumes and acuity are high, having parents ask questions on rounds may lead to excessive duration of this process and lead to fatigue and frustration by all members of the team.
So what does this study add?
This particular study enrolled 72 families of which 63 completed the study. The study required 60 families to have enough power to detect the difference in having parents on rounds or not.The design was interesting in that the randomisation was a cross over design in which the following applied. One arm was having parents on rounds and the other without. The unit standard at the time was to not have parents on rounds.
≤30 weeks 1 week in one arm, one week washout period then one week in the other arm
>30 weeks 3 days in one arm, three day washout and then three days in the other arm
The primary outcome was to see if there would be a significant difference in the Parental Stressor Scale.
Surprisingly there was no difference across any domains of measuring parental stress. When we look at questions though pertaining to communication in the NICU we see some striking differences.
The families see many benefits to the model of being on rounds. They appear to have received more information, more contact with the team, contributed more to the planning of the course of their babies care and been able to ask more questions. All of these things would seem to achieve the goals of having parents on rounds.
So why aren’t parents less stressed?
This to me is the most interesting part of this post. The short answer is I am not sure but I have a few ideas.
The study could not be blinded. If the standard of care in the unit was to not have parents on rounds, what kind of conversations happened after rounds? Were staff supportive of the families or were they using language that had a glass is half empty feel to it? Much like I am biased towards having parents on rounds and thanking them for their participation were there any negative comments that may have been unintentional thrown the families way.
Is a little knowledge a dangerous thing? Perhaps as families learn more details about the care of their baby it gives them more things to worry about. Could the increase in knowledge while in some ways being pleasing to the family be offset by the concern that new questions raise.
Was the intervention simply too short to detect a difference? This may have been a very important contributor. This short period of either a week or two leaves the study open to a significant risk that an event in either week could acutely increase stress levels. What if the infant had to go back on a ventilator after failing CPAP, needed to be reloaded with caffeine or developed NEC? With such short intervals one cannot say that while communication was better the parents were not stressed due to something unrelated to communication. In an RCT these should balance out but in such a small study I see this as a significant risk.
So where do we go from here?
I applaud the authors for trying to objectively determine the effect of parental presence on rounds in the NICU. Although I think they did an admirable job I believe the longer time frame of the FiCare study and the cluster randomised strategy using many Canadian centres will prove to be the better model to determine effectiveness. What the study does highlight though in a very positive way is that communication is enhanced by having parents on rounds and to me that is a goal that is well worth the extra time that it may take to get through rounds. Looking at it another way, we as the Neonatologists may need to spend less time discussing matters after rounds as we have taken care of it already. In the end it may be the most efficient model around!