a Patient
Baby girl G was born 4 weeks premature with severe brain anomalies. Prenatal testing had alerted her doctors and her parents to this reality, and her parents were counseled that she would likely die soon after her birth. They were devastated, but their strong religious beliefs kept them hoping for a miracle. Immediately after Baby G was born, she was admitted to the NICU and surprisingly, she did better than expected: she was able to breathe on her own with only nasal c-pap support, and she tolerated feedings with the help of a feeding tube. This gave her parents hope that perhaps her brain anomalies were not as extensive as feared. But transcranial ultrasound confirmed the prenatal testing, Baby G indeed had only a rim of intact brain. And now a week after delivery, her respiratory function was starting to decline and she was not tolerating feedings. Her body was failing.
The NICU staff asked for my participation in a family meeting to discuss treatment going forward. Because of her underlying brain anomalies, adding aggressive interventions would be futile, but they wanted the parents on board with shifting to comfort focused care and changing her code status to DNaR. Their prior discussions about ‘code status’ had only resulted in overwhelming tears.
the consult
Baby G’s parents had a full understanding of her overall prognosis due to the severity of her brain anomalies. They were understandably tearful, yet had an overall calm and grace. They realized her body was failing and she was dying. Their primary concerns centered around keeping her comfortable and they wanted to remain with her all times.
I explained our worries about what would happen when her heart eventually stopped- and how based on her current treatment plan (full code), she would be subjected to intubation and cpr- interventions that are definitely not comfortable. (as well as futile. One could argue that in this infant, cpr should never even be considered, so why torment these parents with this decision- but that’s a rant for another post). Her parents kept reiterating that keeping their baby comfortable was their primary concern. My interpretation of their words was that they were telling us what to do, not what not to do– because whenever they discussed the later, their emotions overcame them. So I was quite comfortable changing Baby G’s code status to DNaR. But the NICU nurses were very uncomfortable with this. They kept repeating, “but you didn’t ask them if the baby should be DNR, so how can you change the code status?”
I explained to the staff that I had specifically stated that intubation/mechanical ventilation as well as CPR are interventions that cause pain. The parents had explicitly said that they knew their baby would not survive for more than a few more days, and they wanted to do everything to ensure comfort. To me, nothing more is needed. My bias is that to ask these grieving parents to actually say the words “do not attempt to resuscitate her” would have caused them profound suffering. Why add on to their grief by making them essentially say it’s ok to let their baby die?
While some of the nurses still had concerns, the charge nurse and NICU physicians had no qualms with changing Baby G’s code status to DNaR. And gradually over the next few days, she continued to decline. She eventually died peacefully with her parents/grandparents around her.
There’s no magic to the words “do not attempt resuscitation”. And for some- saying those words is just too hard. Because, a loved one is dying…
In this small way, we can help lift their burden.
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