Q&A: Newborn mortality severity

Q: How does one appropriately capture severity for mortality of a newborn when it has been determined prior to birth that the newborn will not survive?

A: As CDI continues to evolve and branch out, we are challenged on how to accurately capture mortality in the newborn population. This is a scenario none of us want to think about, let alone talk about, because inherently it just seems wrong. Before I answer the question, I want to say that I do not take this topic lightly and I will do my best to approach this with respect, compassion, and empathy.

My clinical career as a bedside nurse was in surgical critical care/burn trauma. I saw and cared for the unimaginably worst of the worst. There are always those patients that stick with you. I cared for a patient who was 19 at the time and had a bad reaction to chemotherapy. The patient was actively coded at least three times a day for a week. The patient was taken to the operation room daily and we had to look at the patient’s single mother and prepare her for the fact that her child may not come back. After the fifth day of this cycle, the question was asked, “When do we stop?” The answer was straightforward: “We don’t; the patient is 19 years old.” It is in our nature as healthcare providers to preserve life, especially young life.

Accurately capturing conditions to capture the severity of illness for the mortality of a newborn who is given a do-not-resuscitate order immediately after birth is straightforward. The answer is the same regardless of the age of the patient. Capture the conditions that the patient presented with, such as congenital defects that contributed to the mortality. The documentation may state respiratory failure, but this likely was not treated. Arterial blood gases were likely not drawn for monitoring purposes. When a patient is transitioned to comfort measures only, oxygen is typically administered to ease stress, not treat respiratory failure. The respiratory failure would not likely meet the Uniform Hospital Discharge Data Set definition of an “other reportable” diagnosis.

The documentation needs to be clear as to why a treatment was initiated or a diagnostic test was run. Is the ordered treatment for comfort or treatment of an underlying condition?  If the condition or diagnosis is inherent to the dying process the diagnosis would not be coded, as outlined by Official Guidelines for Coding and Reporting.

Obstetricians are responsible for at least two lives for every pregnancy, and for the most part, this is a joyous responsibility until the unthinkable happens in the prenatal setting: it is determined after delivery, the newborn will not survive. This could be for any number of reasons.

Once delivered, the newborn is admitted as an inpatient, but is this the appropriate admission status? The thought of admitting a newborn under a hospice status seems fundamentally wrong, but what treatment are we providing for this patient other than comfort? Broaching discussions on newborn mortality is difficult at best, but CDI professionals have the opportunity to work with physicians to talk about a new approach to this specific scenario. Advanced care planning education prior to birth with obstetricians may be the first step. This may require collaboration with palliative care teams, who may be better equipped to support this effort.

In the words of J. William Fulbright, “We must dare to think 'unthinkable' thoughts. We must learn to explore all the options and possibilities that confront us in a complex and rapidly changing world.”

Editor’s note: Kim Conner, BSN, RN, CCDS, CCDS-O, a CDI education specialist for ACDIS/HCPro, answered this question. For questions, please email info@acdis.org.