Burn, Baby, Burn: Lessons From Messy Communications with NICU Parents
Jae Kim, MD, PhD / September 2018
Parts of my state of California were burning at their worst levels in history recently while I was planning my September blog topic. I couldn’t help but connect the occurrence to a topic of some events when I have gotten “burnt” myself trying to communicate with my patient’s parents. These at times scorching moments have been instructive in helping me recognize that parents need better than what we sometimes give them.
In practically every parent satisfaction survey I have seen, the number one problem that arises is communication. The reality is that with all our collective training and experience, we continue to get this wrong.
I saw such communication issues in action when my father was ill and in the medical ICU a couple years back. I remember waiting for the team each day to deliberate and make plans. Each time the faculty changed shifts, there was stress on me and my family in determining what style the new attending had and what type of treatment or diagnostics they favored. Attendings came and went, and each was different. Contradictory information from two people was frustrating, but not unfamiliar to me. My patient’s parents complained about the same thing.
I still remember the dietitian who entertained me when I wanted to consider a trial of some random nutrient that I thought might help my father. She researched it and came back with possible solutions for me. She advocated for me when I wanted to try this on my father. He began taking it and coincidentally had a few days of lucidity that were precious to me and my family. Sadly, this did not last, and I will never know if the nutrient was a real cause of his fleeting improvement. But I remember deeply the effort and respect that this dietitian had for me and my suggestions. So let me share a few situations where I see improvements could be had.
Promote a primary team
Coming on service as a new attending, it is so easy for one to try to restart the treatment process, rethink what was done and what was not done. Could there be benefit with another therapy?
Overall, I think having different perspectives integrate into a child’s care is a good thing, but how we decide to transition these ideas needs to be balanced against the harm that could fall from implementing too many changes. The challenge in providing a single trusted physician in charge of a child’s care for their stay is perhaps the single most glaring reason why parents fray. Our most difficult infants are often in the hospital for many months and this gives us opportunities to build a strong relationship with parents.
The true stalwarts are the nurses and other frontline staff. They spend endless hours caring for these children and emotionally adopt them. Attaching themselves as part of their primary team can be extremely taxing but hugely beneficial for the parents. We as attendings have lost this connectivity, and I fear that we may not be easily brought back to the center. Our time commitments and clinical load have made it increasingly more difficult to care for them continuously, from start to finish. Interestingly, I have had several distraught parents who struggled with their infant’s care, but the recognition of a primary physician stepping up to help manage their infant had such tremendous power in stabilizing their emotional instability and fears.
As parents we fight relentlessly to give our child the best and to avoid negative consequences. We are more powerless than if we were the ones ill or threatened. Add to this uncertainty the scenario that what was just told to them could all change on Monday. Parents need to know that someone who makes decisions about their baby genuinely cares.
Provide a consistent message
I have too many examples where my patient’s parents were given changing messages – sometimes the worst over the weekend when attendings may change every few days. It hurts me to tell parents a new perspective or plan since they have been holding onto a previous reality. I am torn by needing to explain the world as I see it and to give the best I can to their child’s care while balancing the unrest this will cause.
We don’t do ourselves a favor by calling out these differences and qualifying their value. Parents need to know there are simply many ways to cook the soup. Part of our disclosure is that these variations occur, but often we are not completely sure which of these variations is the correct one. Regardless if the attending turnstile cannot be remedied easily with primary assignment, at the very least we need to provide a consistent message. This requires work and professional collaboration to trust one another and establish this consistency.
Give full transparency with parents
I have been in emergency situations where the crisis preoccupies my mind, and asking where the parents are is an afterthought. Parents already stress out whenever they receive a phone call from the hospital, especially if there is a physician on the other end. Nothing is more traumatic to a parent than getting a phone call that their child has suffered some catastrophe and is dying and time is of essence.
Just like our algorithms for cardiac arrest insist on calling for help from the start, the instinct to call parents when something bad has started is a good idea. Furthermore, giving information as it comes along has always been a good habit for me. Now more than ever it is imperative to make such information openly available in real time. No longer is there a black box where parents need to wait, unknowing how long the process could take from time of testing to reveal.
Letting our parents in on our once private process can be a powerful trust-builder. With imaging it is unquestionable that showing the images achieves so much with parents, regardless of how complicated it may be to interpret the images, particularly the subtleties present. Parent don’t need to imagine how bad things are once they can see these images.
Stop being so dark
When I was a fellow, I remember being so zealous in telling parents the bad news regarding their infant with hypoxic-ischemic encephalopathy who just had an MRI. I told them that there were many ischemic lesions that would most likely result in a high chance of a poor neurodevelopment outcome. The parents were disheartened by the hard facts and later told my attending they thought I was inappropriate and harsh. I was shocked by that experience, as I always prided myself on being a good communicator, but timing, tone, and tempo are key in delivering bad news.
As HCP we are known to be much more pessimistic than parents. We bring ourselves quickly down when some morbidities occur to our patients, and we are probably biased to some degree by seeing the extreme cases that turn out badly. We drop our shoulders and lament the loss of a normal outcome. Parents can read our body language, so not really saying anything is not enough. We need to correct our pessimism with actual outcome data.
Celebrate the highs and let them breathe
In the past I felt that it was inappropriate to smile or laugh when the situation was grave. The somberness that I helped create was stifling and pressured. I couldn’t breathe, nor could the parents. As attendings we often set or control much of the tone of a situation. I now look for opportunities for something to smile at. Be proud of a positive sign however small. I look to create humor around some of these situations, have small talk, and watch for completely random interactions to offload the heaviness. I talk about the weather, baby names, food, whatever comes to mind to break up the heavy chunks of emotional air. I see now that these moments are necessary for everyone, staff and parents, to deal with such a heavy burden as a sick or dying child.
When a sick infant is having a good day or good 12 hours, these are the moments that we need to give parents space and emotional room to smile and relieve some tension. Permitting parents to catch up with their emotional roller coaster is so important. They need to recharge to start again in dealing with what they have. I now remind myself to let them breathe.
Keep it simple
I sometimes think our rules for communicating with parents are misaligned with our parents’ wishes in what they want to hear and the style in which they are told. Studies have shown that we want to present facts, while parents want to hear more emotive aspects of their child’s care (when will they feed, when can they hold them, when will they go home).
As a fellow I thought I used simple medical language to explain the findings. Parents nodded in acceptance but often unbeknownst to me they were without full understanding or comprehension. Parents under stress don’t process or remember very well. It is our task then to start with simple global descriptions to help them navigate through so much information. I really don’t even care if parents have a PhD or are even healthcare professionals, as I think all parents should be parents first and be given a simple-to-digest message when they are under such stress. More information can be given to fill in the details, but I have never had a parent say that what I was saying was too simple; only that they did not understand or feign understanding.
Involve the parents
It is way too easy for parents to stay at home. Our NICUs are clean and fully self-sufficient. We can appear to replace parents with nursing and volunteers to hold. Parents are easily made superfluous with all the monitoring equipment and staff. We now even have cameras above their beds so parents can connect and view their infants remotely. Virtual parenting is upon us. But the reality is that nothing can replace the human contact of a parent, or replace the metaphysical love they share with their child.
It is up to us to give parents a chance to do something to help them focus their minds. The recent success of a family integrated model of care (FiCare) is a great example of how much we underestimate what parents can do in their child’s care, and is an organic approach to re-introduce parents into the care of our babies. We need to bring them back in and reauthorize their role as parents.
So to end, stay cool, listen around you, and let the rain fall. Being so intensive can make us too hot, and in some cases that can burn.
About the Author
Jae Kim is an academic neonatologist and pediatric gastroenterologist and nutritionist at UC San Diego Medical Center and Rady Children’s Hospital of San Diego. He has been practicing medicine for over 23 years both in Canada and the USA. He has published numerous journal articles, book chapters, and speaks nationally on a variety of neonatal topics. He is the Director for the Neonatal-Perinatal Medicine Fellowship Program at UC San Diego and the Nutrition Director of an innovative multidisciplinary program to advance premature infant nutrition called SPIN (Supporting Premature Infant Nutrition, spinprogram.ucsd.edu). He is the co-author of the book, Best Medicine: Human Milk in the NICU. Dr. Kim is a clinical consultant with Medela LLC.