The Holy Grail in NICU

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.  one-size-does-not-fit-allI 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.

Advertisements

5 thoughts on “The Holy Grail in NICU

  1. I think you’ve raised really important points. I don’t have a preemie, but I work in a children’s rehab hospital. You mentioned that unless parents have had experience working with children with disabilities, it’s challenging for them to make an informed decision. I would add that for health-care providers to give unbiased information, it’s ideal that they have had significant experience working with families of children with disabilities, or volunteering or in some other capacity having spent a significant amount of time with these families. In the same way that a parent who’s had no firsthand/intimate/long-term experience with disability can’t accurately predict what that experience will be like, neither can a health provider who lacks that kind of exposure.

    Liked by 2 people

  2. Having given birth to preterm twins at 27 weeks of gestation has been a life-changing experience for me. I remember the prenatal consultation very well, even 7 years later. It was full of statistics, negative outcomes and I was alone late in the evening. I was 25 weeks- the consult left me bewildered, fearful and stressed. It was actually not a discussion, I was given information.

    “Partnering with parents, one size does not fit all.” I do agree with this title. Each family is different, comes form a different place, has different values and expecations when they end up in a delivery room unexpectantly at 23 or 24 weeks gestation. I think what needs to be looked at is what shared decision making means. What does it mean to provide “pertinent information” to families? Is it giving a lot of statistics? How do HCP decide what information is to “be delivered”? I believe that in a SDM model, there is a discussion about this baby, the family’s hopes and dreams-this does not have to be a 2 hour discussion but knowing about the family, their hopes and dreams, will help in guide the ensuing discussion. Do we need to discuss all potential outcomes at this time? I don’t think so.

    A number of parents and I have written an article on this topic in June, 2014 in Acta Paediatrica in : “Our Child is not just a Gestational Age: what parents want and need to know before a preterm birth” 103 pp 1035-1038. The recommandations we make to HCP are as true today as they were then.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s