Uncertainties Present
| Category . | Subtype . | Explanation . | Example(s)a . |
|---|---|---|---|
| Timing of delivery | The date, time, and gestational age of the infant at delivery | “…there’s nothing that will make you look foolish like trying to guess when a baby’s going to be born.” (consult 20; line 365; neonatologist F) | |
| “…perhaps the most important thing I can tell you is we don’t know when your baby is going to be born. It may not be for a long time yet, and that’s great if that’s the way it works out.” (consult 19; line 5; neonatologist F) | |||
| NICU course | Infant survival | Likelihood of infant survival | “Yeah, the chance of survival in your baby I would…probably be somewhere in the 50%–60% range. But you don’t really know if your baby can survive unless we actually try.” (consult 4; line 233) |
| “But really, that’s very hard to pinpoint a number to tell you he’s got a 40% chance or a 20% chance or a 60% chance because we see a huge range.” (consult 12; line 178; neonatologist B) | |||
| Short-term outcomes | Risk of specific morbidity occurring during the NICU hospitalization and potential severity | “The other thing that we worry about with babies born this early is the development of the retina in the eye. That’s something that usually develops before babies are born. But especially babies born this early, that retina develops in the back of the eye and works its way forward, and it’s something that we have the ophthalmologist help us watch just to make sure that that continues to develop normally, cause sometimes being exposed to oxygen after a baby’s born can make that development abnormal. And sometimes, the ophthalmologist would have to intervene to help make that development more normal again…And that’s something that certainly doesn’t happen for every baby but just to let you guys, again, know kind of the spectrum for things that you can expect for [baby name].” (consult 3; line 220; neonatologists B, J) | |
| “…the third thing we worry about with these little guys…is whether or not their intestines can remain healthy…baby’s intestines aren’t really designed to be out in the environment quite yet…So what we do to avoid that problem is, again, keep things pretty cool for the first 3 days, nice and stable, nice and steady…So the first 5 days for [baby name], if he were born today, is really just to keep the intestines really intact so that it’s a good barrier to bugs and to help keep its functions developing…And if he gets up to full feedings without any hiccups, which happens periodically, but oftentimes, we have to kind of pump the brakes a bit, give him a day of rest at whatever level of feeding he’s at and then resume our advancement tomorrow…but if we do see that the intestines aren’t healthy, we stop feeds altogether, we start antibiotics, we treat it like it’s as serious as it can be because it can be life-threatening; and for kids who survive, having had that problem, it can be life-altering.” (consult 21; line 317; neonatologist C) | |||
| Long-term outcomes | Risk of specific morbidity past the initial NICU hospitalization and potential severity | “And that’s where things become hard is because we have babies that survive the NICU and have severe and sometimes even profound disability and we have babies that survive and go home from the NICU that don’t.” (consult 14; line 164; neonatologist E) | |
| “...but there absolutely are long-term survivors who…we know have gone on to get to graduate high school and moving on into adulthood, but this is the first generation we can say that so we don’t know all the effects long-term because we haven’t had decades and decades of survivors for babies born at 22, 23, 24 weeks…” (consult 12; line 393; neonatologist B) | |||
| Postnatal diagnosis | Accuracy and ability to predict | “…because that’s not a perfect test [head ultrasound]. It doesn’t tell us everything we need to know, but it does gives us a pretty good sense of the sorts of issues babies might have to deal with down the line.” (consult 10; line 239; neonatologist C) | |
| Length of stay | Duration of initial NICU hospitalization | “If things are more complicated, it can easily be longer depending on how the lungs do and there can be intestine problems There’s a lot of things that can slow things down. So, it can definitely be longer than that.” (consult 23; line 362; neonatologist F) | |
| Individual characteristics | Of physician | Specific role during clinical encounter (which decisions the provider is and is not responsible for) | “So, this gets confusing for families about who is making which decisions, but when to deliver and how to deliver your baby is up to the obstetricians and the Maternal Fetal Medicine folks. I’m not an obstetrician and I’m not a Fetal Medicine doctor. I take care of premature babies like the one that you’re currently carrying and help families sort through what to do when the baby is delivered and to prepare you for what may happen when the baby is delivered.” (consult 4; line 48; neonatologist D) |
| Of expectant parent | Baseline knowledge, background, readiness for discussion and decision-making, hopes and/or worries for their child, and health | “Most of the time parents say ‘doc could you at least try taking care of the baby?’ and we can but we wanna be sure that makes sense and is the right thing from the parents perspective as well.” (consult 22; line 114; neonatologist I) | |
| Of fetus or neonate | Gestational age, sex, singleton versus multiple pregnancy, exposure to betamethasone, prenatal diagnosis of congenital anomalies or genetic condition, and individual’s ability to perform versus population statistics | “Our best guess is we’re at 22 weeks and 5 days…we don’t know exactly where we are…And that’s kind of a big deal because—”/Pregnant woman: “A matter of a week can make a huge difference.”/“Exactly, yeah, we’re right at a very delicate spot, right w[h]ere survival chances area really starting to go [up].” (consult 19; line 40; neonatologist F) | |
| “…there’s a lot of variables, the steroid status; baby boys have worse outcomes than baby girls at this gestational age. They tend to be about 1-week more premature…and then the actual size he is when he’s born, those are the kind of things that help narrow it down.” (consult 12; line 181; neonatologist B) | |||
| Consequences of decision for the family | Ethical and/or moral | Avoidance of regret | Pregnant woman: “I don’t want unrealistic ex[pectations].”/Expectant father: “If there’s a chance, some chance of having a kid that has a good quality of life.”/Pregnant woman: “Yeah.”/Expectant father: “You wouldn’t want to play ‘what if’ your whole life.” (consult 24; line 297; neonatologist D) |
| Expectant parental perception of quality of life and acceptability of prognosis | Pregnant woman: “I have to make peace with the risk of regret.” (consult 24; line 875; neonatologist D) | ||
| Logistics | Financial, living situation, and family situation | “We’d have to work that out, and that’s where our social worker gets involved and, and talks with your insurance, whatever your arrangements are and just working on how do we get you guys home and, or at least closer to home, and sometimes we can do that, and sometimes it doesn’t work out for just all of the health care financing problems but we can try to do that if we, uh, if things are nice and stable and we can do that.” (consult 20; line 329; neonatologist F) | |
| External perception of decision | Expectant parental concern for others’ acceptance of their decision | Pregnant woman: “...do you guys go back in your back room and be like, God those [family’s last name] are so dumb; what are they doing? Like if only they knew, they could just make better decisions and let this baby go.” (consult 24; line 660; neonatologist D) |
| Category . | Subtype . | Explanation . | Example(s)a . |
|---|---|---|---|
| Timing of delivery | The date, time, and gestational age of the infant at delivery | “…there’s nothing that will make you look foolish like trying to guess when a baby’s going to be born.” (consult 20; line 365; neonatologist F) | |
| “…perhaps the most important thing I can tell you is we don’t know when your baby is going to be born. It may not be for a long time yet, and that’s great if that’s the way it works out.” (consult 19; line 5; neonatologist F) | |||
| NICU course | Infant survival | Likelihood of infant survival | “Yeah, the chance of survival in your baby I would…probably be somewhere in the 50%–60% range. But you don’t really know if your baby can survive unless we actually try.” (consult 4; line 233) |
| “But really, that’s very hard to pinpoint a number to tell you he’s got a 40% chance or a 20% chance or a 60% chance because we see a huge range.” (consult 12; line 178; neonatologist B) | |||
| Short-term outcomes | Risk of specific morbidity occurring during the NICU hospitalization and potential severity | “The other thing that we worry about with babies born this early is the development of the retina in the eye. That’s something that usually develops before babies are born. But especially babies born this early, that retina develops in the back of the eye and works its way forward, and it’s something that we have the ophthalmologist help us watch just to make sure that that continues to develop normally, cause sometimes being exposed to oxygen after a baby’s born can make that development abnormal. And sometimes, the ophthalmologist would have to intervene to help make that development more normal again…And that’s something that certainly doesn’t happen for every baby but just to let you guys, again, know kind of the spectrum for things that you can expect for [baby name].” (consult 3; line 220; neonatologists B, J) | |
| “…the third thing we worry about with these little guys…is whether or not their intestines can remain healthy…baby’s intestines aren’t really designed to be out in the environment quite yet…So what we do to avoid that problem is, again, keep things pretty cool for the first 3 days, nice and stable, nice and steady…So the first 5 days for [baby name], if he were born today, is really just to keep the intestines really intact so that it’s a good barrier to bugs and to help keep its functions developing…And if he gets up to full feedings without any hiccups, which happens periodically, but oftentimes, we have to kind of pump the brakes a bit, give him a day of rest at whatever level of feeding he’s at and then resume our advancement tomorrow…but if we do see that the intestines aren’t healthy, we stop feeds altogether, we start antibiotics, we treat it like it’s as serious as it can be because it can be life-threatening; and for kids who survive, having had that problem, it can be life-altering.” (consult 21; line 317; neonatologist C) | |||
| Long-term outcomes | Risk of specific morbidity past the initial NICU hospitalization and potential severity | “And that’s where things become hard is because we have babies that survive the NICU and have severe and sometimes even profound disability and we have babies that survive and go home from the NICU that don’t.” (consult 14; line 164; neonatologist E) | |
| “...but there absolutely are long-term survivors who…we know have gone on to get to graduate high school and moving on into adulthood, but this is the first generation we can say that so we don’t know all the effects long-term because we haven’t had decades and decades of survivors for babies born at 22, 23, 24 weeks…” (consult 12; line 393; neonatologist B) | |||
| Postnatal diagnosis | Accuracy and ability to predict | “…because that’s not a perfect test [head ultrasound]. It doesn’t tell us everything we need to know, but it does gives us a pretty good sense of the sorts of issues babies might have to deal with down the line.” (consult 10; line 239; neonatologist C) | |
| Length of stay | Duration of initial NICU hospitalization | “If things are more complicated, it can easily be longer depending on how the lungs do and there can be intestine problems There’s a lot of things that can slow things down. So, it can definitely be longer than that.” (consult 23; line 362; neonatologist F) | |
| Individual characteristics | Of physician | Specific role during clinical encounter (which decisions the provider is and is not responsible for) | “So, this gets confusing for families about who is making which decisions, but when to deliver and how to deliver your baby is up to the obstetricians and the Maternal Fetal Medicine folks. I’m not an obstetrician and I’m not a Fetal Medicine doctor. I take care of premature babies like the one that you’re currently carrying and help families sort through what to do when the baby is delivered and to prepare you for what may happen when the baby is delivered.” (consult 4; line 48; neonatologist D) |
| Of expectant parent | Baseline knowledge, background, readiness for discussion and decision-making, hopes and/or worries for their child, and health | “Most of the time parents say ‘doc could you at least try taking care of the baby?’ and we can but we wanna be sure that makes sense and is the right thing from the parents perspective as well.” (consult 22; line 114; neonatologist I) | |
| Of fetus or neonate | Gestational age, sex, singleton versus multiple pregnancy, exposure to betamethasone, prenatal diagnosis of congenital anomalies or genetic condition, and individual’s ability to perform versus population statistics | “Our best guess is we’re at 22 weeks and 5 days…we don’t know exactly where we are…And that’s kind of a big deal because—”/Pregnant woman: “A matter of a week can make a huge difference.”/“Exactly, yeah, we’re right at a very delicate spot, right w[h]ere survival chances area really starting to go [up].” (consult 19; line 40; neonatologist F) | |
| “…there’s a lot of variables, the steroid status; baby boys have worse outcomes than baby girls at this gestational age. They tend to be about 1-week more premature…and then the actual size he is when he’s born, those are the kind of things that help narrow it down.” (consult 12; line 181; neonatologist B) | |||
| Consequences of decision for the family | Ethical and/or moral | Avoidance of regret | Pregnant woman: “I don’t want unrealistic ex[pectations].”/Expectant father: “If there’s a chance, some chance of having a kid that has a good quality of life.”/Pregnant woman: “Yeah.”/Expectant father: “You wouldn’t want to play ‘what if’ your whole life.” (consult 24; line 297; neonatologist D) |
| Expectant parental perception of quality of life and acceptability of prognosis | Pregnant woman: “I have to make peace with the risk of regret.” (consult 24; line 875; neonatologist D) | ||
| Logistics | Financial, living situation, and family situation | “We’d have to work that out, and that’s where our social worker gets involved and, and talks with your insurance, whatever your arrangements are and just working on how do we get you guys home and, or at least closer to home, and sometimes we can do that, and sometimes it doesn’t work out for just all of the health care financing problems but we can try to do that if we, uh, if things are nice and stable and we can do that.” (consult 20; line 329; neonatologist F) | |
| External perception of decision | Expectant parental concern for others’ acceptance of their decision | Pregnant woman: “...do you guys go back in your back room and be like, God those [family’s last name] are so dumb; what are they doing? Like if only they knew, they could just make better decisions and let this baby go.” (consult 24; line 660; neonatologist D) |
Physician speaking unless otherwise noted.