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‘The gray zone’: Discussing treatment options for extremely premature infants
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Advances in science and medicine have dramatically improved the odds of survival for premature infants. However, these babies continue to face significant challenges, both immediately after birth and throughout their lives.
Infectious Diseases in Children asked Michael A. Posencheg, MD, attending neonatologist and associate chief of quality improvement and patient safety in the division of neonatology at Children’s Hospital of Philadelphia, how he approaches conversations with parents of extremely premature infants.
When I meet with a family and the mother is 30 to 35 weeks’ pregnant, I’m usually extraordinarily positive. I talk about challenges the infant may have during the hospital stay and criteria that need to be met for discharge. We know that most of these babies do extremely well, are at low risk for complications of prematurity and have very good quality of life, which is normally based on having a good neurodevelopmental outcome.
It is possible that a baby born at 32 weeks’ gestation, for example, develops a severe complication of prematurity, like a grade 3 or grade 4 intraventricular hemorrhage or necrotizing enterocolitis, but that is much rarer compared with infants born at an earlier gestational age. By and large, though, we are positive about outcomes at these later gestational ages.
The conversations we have with families at decreasing gestational age — once you get below 30 weeks or so — are more serious and focus much more on survival to hospital discharge and the morbidities that could impact neurological outcomes.
When I meet with these families, I try to establish a relationship quickly and get a sense of their experience with prematurity. This allows me to tailor the discussion accordingly. I normally start with discussing the overall chance of survival, because you may surprise a family. For example, if they are presenting at 28 weeks, they may think, “Oh my God, it’s 12 weeks before my due date; my baby has no chance of survival” — but, in fact, those babies have a greater than 90% chance of survival. I have found that families continue to have these questions even up to 33 or 34 weeks. That’s why I usually address that first.
The next part of the discussion is focused on the risk for certain morbidities of prematurity, which can affect most major organs, and have consequences regarding neurological development. Some morbidities have a larger impact on developmental outcomes than others, and many of them don’t occur until much later in the hospital course, when changing goals of care is less realistic.
Everyone wants to know what their baby will be like a month from now, a year from now, or in kindergarten — and this is very hard to predict when a preterm baby is still in the hospital. We just don’t have those answers. The only area where we have a little more confidence is discussing survival to hospital discharge. Most babies who don’t survive die in the first 7 days. If the baby survives in the delivery room, and then the first day, and then the first week, the chance of survival to hospital discharge is much better. Most babies who survive the first month will leave the hospital.
There is one population of patients that requires special consideration and discussion. In general, infants born between 22 weeks and 0 days to 24 weeks and 6 days are in what we call a “gray zone.” Over this gestational age range, there is an appreciable change in survival from about 10% to 60%, but outcomes for surviving with a good quality of life are very unclear.
In the gray zone, we focus on a shared decision-making model when we consult with families. We provide information about the range of possible outcomes, including overall survival, the possible morbidities of prematurity and their impact on neurodevelopmental outcomes. However, we decide together with families regarding the best way to care for their baby, including whether or not to resuscitate at the time of delivery.
Many families consider whether full resuscitation is the right thing for them and their unborn child; they may consider other goals of care. Some families choose to provide comfort and warmth and allow the baby to pass naturally.
The other thing I emphasize with families is that any decision you make right now is just one decision that is amenable to reassessment. This is so families don’t feel like they’re making one decision that is absolute, with no opportunity at any point to reconsider.
These are all incredibly emotional, difficult conversations. However, it is a constantly changing, constantly evolving process during which, at any point, we can re-entertain conversations and decisions we’ve made. As time passes, we learn more about their baby and how they are doing. This can inform further discussions about the best way to care for them.
Disclosure: Posencheg reports no relevant financial disclosures.
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