The Ethics of NICU

March 1st, 2017 by Stephanie Peace

I completed a month-long NICU rotation earlier this year in Columbia, MO, so I was excited to see the NICU at Kiwoko Hospital (known as the best in Uganda). The facility is beautiful, though lower-tech than our NICU in the U.S., and Dr. Becca really works hard to ensure that the infants receive the highest quality of care. Kiwoko’s NICU receives a combination of infants: in-born children who suffered birth trauma especially severe asphyxia, pre-term infants (often as young as 26 weeks gestational age and as small as 800g), and infants born at home or at other facilities often presenting with sepsis. For most services at Kiwoko Hospital, patients pay a subsidized price of 1/3 the total cost of services. Because a months-long NICU stay would be astronomically expensive for most patients, families pay a total of 20,000 shillings (approximately $5.50) for all the care received for the duration of the NICU stay.

 

The challenges of operating a NICU in Uganda include:

  1. No access to surfactant for premature babies. The maximum respiratory support available is CPAP, so while it’s possible to intubate these very small babies for short-term bagging or transport purposes, they ultimately have to breathe on CPAP alone.
  2. No ability to place umbilical arterial lines or umbilical venous lines for labs and medications. This makes getting a peripheral line essential and also limits what labs can be regularly tested (though the lab requires such a large amount of blood for most tests compared with the U.S. that regular testing is not typically an option anyway).
  3. No TPN available. For patients in Kiwoko’s NICU, the only nutrient source is breastmilk, which mothers have to express (no pumps available) for tube feeds. In extremely premature infants or infants with GI abnormalities, tolerating tube feeds may be a challenge resulting in necrotizing enterocolitis.
  4. Staffing burdens. Nurses in an American NICU may have 2 babies at a time (up to 4 on a step-down unit). The NICU at Kiwoko is almost always full (25-35 babies) and there may be 4-5 nurses on each shift. Overnight, one physician (not usually a trained neonatologist or even pediatrician) covers the entire hospital, so there is no one immediately on site in the NICU for emergencies.

 

In addition to these major difficulties, there is generally less intervention including testing for future developmental issues, as there aren’t services available for children with developmental delays or disabilities (beyond physical therapy).

 

One thing that I appreciated about working with NICU was the ethical conversations (which were much more common in Uganda than in the U.S.!). I often felt uncomfortable in my NICU in Columbia, MO with the overwhelming optimism that resulted in going to great lengths of medical intervention. There were instances that I felt like we weren’t being fully honest with the parents about what they could expect from the interventions we were pursuing. There is, after all, a difference between keeping a child alive and giving him or her a life. In Kiwoko, we often discussed the realistic limitations of the NICU. We had conversations with the other physicians and midwives about options available to the mothers of extremely low birthweight infants who are unlikely to survive the NICU. Is it better for these infants, who are unlikely to survive at all and even more unlikely to survive without significant physical and developmental disability, to spend their limited time on Earth in the arms of a mother who loves them or to go to NICU, separated from the mother and connected to a multitude of tubes and lines? The answer may differ by family, but bringing the family into the honest conversation is so important. I am grateful to have worked with physicians who take their ethical responsibility to patients seriously, even when the conversations are difficult.