Arnolds M, et al. Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor. The Journal of pediatrics. 2018;196:116-22 e3.
A few times a year many of us are faced with admissions to the NICU which have marginal chances of survival. That might mean a congenital anomaly with a limited chance of survival, a complex cardiac defect without a clear surgical option but with a chance of surgical palliation, or an extremely preterm baby with a predicted <10% chance of survival.
Sometimes, after discussion with the parents, we decide to institute active intensive care; In other cases the diagnosis and the prognosis become evident after hours or days of intensive care, and we realize that there is only a small chance of the baby surviving.
It would be interesting to investigate the impact of intensive care that ‘fails’ on families. How do they hold up later? Is there a lot of “decisional regret” where families are disturbed about the intensity of the care their baby received, only to die anyway?
A group of investigators from the University of Chicago (including Bill Meadow in one of his last contributions to the neonatal literature) recently published a qualitative study examining the experiences of families with extremely high risk babies. Families from one of two tertiary NICUs were interviewed while their child was sick, and most of them again interviewed more than 6 months later, 3 families had infants who had died, and 2 others were still hospitalised.
There are many things in the article that are worth reading, and anyone trying to support families of critically ill babies could benefit from the insights provided. But I want to focus on one thing, and that is the idea of decisional regret. Health care workers often think ‘if the parents really knew what was going to happen, they would choose differently’, indeed it is one of the things which underlies the moral distress that is experienced by people working in the NICU. Prentice TM, et al. The use and misuse of moral distress in neonatology. Seminars in fetal & neonatal medicine. 2017.
In reality, decisional regret regarding neonatal intensive care decisions is quite unusual, and seems to be more frequent among those who chose not to intervene than those who chose NICU, even when it goes badly in the end.
This publication supports that interpretation, even when the outcome is poor (extremely long hospitalisation, or death, or likely disability) parents were grateful for the care their baby received, and expressed that they had no regrets about the decisions made. Even when the prospects are poor, families generally appreciate that their infants was considered to be “worth a try”. A title which I would guess was suggested by Bill as a pithy summary of the entire project!