Difficult Conversations in the NICU

As a physician and a parent I'm keenly aware that there are certain conversations that a parent never wants to have with the medical team caring for their newborn. As a life coach I believe that within each of us is the capacity to face the truth.

Deciding to pursue a career in medicine is about curing people, helping people, and making a difference in patients' lives. In the early years, it is not completely understood that the role of a doctor also includes giving unwanted news, painful information, and life shattering diagnoses. This is the case in the NICU when informing parents that there is nothing more that can be done for their newborn and that death is inevitable. And yet, that is one of the times when families need the medical team the most.
With the survival of extremely low birth weight (ELBW) premature babies and sicker newborns outcomes are unpredictable and complications occur. Certain diagnoses means the newborn will have lifelong medical issues, developmental delays, or a shortened lifespan.

These conversations are essential for families to begin their process of acceptance. Parents are the gatekeepers and advocates for their children and making decisions requires having all the information. These difficult conversations involve the entire interdisciplinary team. Specialists may be consulted to provide their expertise. The medical team provides assessments of the clinical condition of the baby and updates the family.
What are the parents' expectations of difficult conversations in the NICU?

Parents come to these conversations at different stages. Some parents are still searching for that miracle even when what they see is to the contrary. Others have started their grieving process and want peace for their baby. And others are some where in the middle.

Life coaching principles emphasize that we are each on our own journey. We each have a path. If this is true, then the team can hold a space for parents to process and accept what is before them in the NICU journey. For parents, acceptance comes after grieving for their lost dreams.

Life coaching principles also support that people are not broken, and therefore, do not need to be fixed. This means that when we tell parents about their baby's status, we are honoring them and empowering them to process this information in their own way and time. The decisions parents make may differ from the medical team. The medical team provides a space to honor this as well. It may mean that we give families time to reflect. It may mean that what the medical team deems best for the patient may not align with desires of the parents. Time and more information may be needed to come to a consensus on what is best for the baby. And it may mean that there is a higher power at work through it all.

What does accepting an unfavorable and unwanted diagnosis mean?
Does it mean giving up all hope? Or does it mean that we look deeper into ourselves, to that place where love resides, gather our strength, and make each moment a lasting memory?