Physician Responses to Uncertainty
| Category . | Subcategory . | Explanation . | Examplesa . |
|---|---|---|---|
| Provide more information | Statistics and/or numeric data | Description of population statistics, translating into risk of mortality and morbidity | “Babies that are born premature, and regardless of what may happen in the NICU, there is a risk of 10%–20% of cerebral palsy.” (consult 14; line 143; neonatologist E) |
| “…if you tried to save the life of a hundred babies who were born in this exact same condition that your son is in: 25 weeks, 400 grams with concerning patterns on the way the baby is getting nutrients and blood flow, the chance of survival would be 50%–60%. So, of the 100 babies that you did everything that you could, 50–60 of those 100 babies would survive. Now, of the we’ll say optimistically 60 babies who survived, your question then is how many of those will go on to have long-term problems like cerebral palsy and issues with learning and keep[ing] up with their classmates. And I would say probably 30%–50% of the babies who did survive would have long-term issues with learning issues or problems with cerebral palsy…” (consult 4; line 326; neonatologist D) | |||
| Spectrum of possibilities | Providing a wide array of possible outcomes, often a continuum | “…cerebral palsy can be something that’s strictly motor in that it affects the ability of the muscles to move in coordination with the brain. And for any premature baby, they are at risk to have some degree of cerebral palsy, and that’s where it gets a little bit difficult to predict whether there’ll be any cerebral palsy or how severe it will be. For some babies that are born extremely premature, maybe they can’t walk, and they may be in a wheelchair. For others, it may be just very, very mild and that they get extra physical therapy and their parents know that’s there, but it may not be something that’s even that apparent when they go off to school.” (consult 17; line 187; neonatologist E) | |
| “For some babies, what does it mean to be affected by prematurity? It means ‘Well, I took a little bit longer to grow and catch up in how big I was, and I’m a little bit more clumsy as I learn my motor skills, but the neighbors, my friends, no one else knows.’ For some kids it means ‘I was doing great; but when I got to third and fourth grade, I really had trouble paying attention in class, and that seemed to be more challenging for me than my friends.’ For other children, it may mean ‘I need a ventilator for several months.’” Rarely, a baby even goes home with a ventilator.” (consult 3; line 408; neonatologist B, J) | |||
| Specific details | Outlining the neonatal teams’ actions or response to certain outcomes. Often includes describing the physical space and team mechanics of the hospital system | “I would place a breathing tube into his airway to help him breathe because almost certainly his lungs wouldn’t be able to bring oxygen into his blood like they need to and so I would have to help him my best by placing a breathing tube into his airway.” (consult 10; line 87; neonatologist C) | |
| “…when the baby’s born… the first thing we’ll do is let the baby just sort of sit there still on the umbilical cord. Well, in most situations, we can do this and let a little extra blood go from the placenta to the baby. So, we don’t clamp the umbilical cord right away, most of the time, unless the baby really isn’t doing anything and we’re really concerned, like we need to get this baby some help right now. Then, we’ll take the baby to another room right next door. There’s actually a door between the 2 rooms, so we don’t have to go out in the hallway, and we’ll focus right away on keeping the baby warm, getting breathing started, and then pretty quickly, we’ll want to get IVs in.” (consult 20; line 368; neonatologist F) | |||
| Experiential knowledge | Storytelling (explaining what the provider has observed through their career) | “Used to be that earlier in my career, everything hinged on how the lungs were doing. Were the lungs mature enough so that the baby could survive? And when babies didn’t make it, if they didn’t survive, it could be you know hours to days before they died cause usually their lungs or sometimes their blood pressure wasn’t good. That can still happen, but now days when our youngest babies die, it is less likely to be in the first hours to days…” (consult 11; line 405; neonatologist I) | |
| “That’s how things tend to go, for what that’s worth. I’ve taken care of kids that have gone through the whole spectrum. I’ve taken care of kids who haven’t made it. I’ve taken care of kids who need a wheelchair to get around and have a lot of problems.” (consult 20; line 579; neonatologist F) | |||
| Identify when and/or how more certainty may be gained | Description of critical moments of information gathering specific to the individual neonate | “We resuscitate, we do full intensive care. That middle ground is we do a trial of resuscitation; so we do the resuscitation, we see how baby responds, we may go to the NICU, and then see how things go. [We] evaluate how are his lungs working? Are they working well enough we can support him? How is his brain doing? And we have nice points where we can sit down and talk about all of those things and how he is responding to our intervention and care.” (consult 2; line 281; neonatologist H) | |
| “After birth, we routinely, in the first week of life, will screen for bleeding in the brain with the head ultrasound, and we do another head ultrasound much closer to your due date to look for evidence of any injury of hypoxia or lack of oxygen. Well, that’s a long time to wait and, truthfully, I feel like families have to wait even longer. Because the ultimate brain test is really is our developmental skills.” (consult 16; line 205; neonatologist B) | |||
| “…in the face of uncertainty, let’s try to do things that will… give the baby a chance and preserve the opportunity for parents to help decide… do we continue with medicines and machines… or is it just not working out for this particular baby… sometimes, that becomes apparent over time…” (consult 6; line 507; neonatologist I) | |||
| Acknowledging the limits of medicine | Inability of medical practice, knowledge, and/or the community to provide clarity or meaningful intervention | “…I just don’t have any good way of predicting when or how long are you going to be pregnant (laughs). I certainly don’t know that. And even if I knew, okay this is going to be the day, there’s no way I could tell you how things are going to turn out in terms of survival and what he’d have to go through to get there, and how are things going to turn out in the long run. There’s just no way to know, and that’s the really hard thing about all of this.” (consult 19; line 222; neonatologist F) | |
| Pregnant woman: “that’s one of the things that is so frustrating about medicine. I mean, obviously, you have to make some boundaries, but it seems so arbitrary sometimes” (consult 24; line 483; neonatologist D) | |||
| Acknowledgment and acceptance of uncertainty | Naming of uncertainty in a specific situation; accepting that uncertainty exists, and it cannot always be modified | “We’re in a tight spot because there is not a lot of clear answers at this point or clear predictions of exactly how your baby will do. That’s hard to make decisions when there is uncertainty about that.” (consult 14; line 550; neonatologist E) | |
| “…what we’re dealing with, again, is a lot of uncertainty about what’s going to happen with this little guy when he’s ultimately delivered and the inability to predict how he’s going to do either during the first couple of hours after he’s born or, ultimately, what’s he’s going to be like if he were to survive when he’s 10 or 20 years old. Those conversations haven’t really changed much. We don’t have a lot of new meaningful data to say ‘wow, we’ve got a big game-changer here’.” (consult 24; line 490; neonatologist D) | |||
| Holding hope | To remain hopeful for a positive outcome in the face of uncertainty | “The fact is that we deal with a lot of uncertainty at this point in the pregnancy when we talk to moms and dads about what to expect. And we worry about some of those outcomes that I talked about, some of those complications that I talked about. Though balance it out with being hopeful that about half the babies will survive, and half of those babies will survive with good outcome.” (consult 17; line 242; neonatologist E) | |
| “…it’s hard to add any degree of certainty because the fact is there is reason to worry, and that’s the doom and gloom part of the conversation. And then there is reason to be hopeful, too, and that I absolutely care for babies at 23 weeks that have had long intensive care courses that have gone home, and they come back and visited me years later, and they’re very, very well and are going to school and may be wearing glasses from, you know, complications with the eyes to related to prematurity, but otherwise have very good quality of life and their parents are very, very hap[py].” (consult 14; line 585; neonatologist E) | |||
| Pregnant woman: “…my brain is saying you need to do comfort care; this is like just completely ridiculous; let’s not go through this; let’s not put the baby through this. But then my heart is like…”/Expectant father: “What if?” (consult 24; line 849; neonatologist D) | |||
| Relationship building | Building a relationship between provider and expectant family. May take many forms, including but not limited to the following: providing reassurance, promise of future provider availability, promise of truthfulness, listening to expectant parents and/or to the neonate, and checking for understanding | “Until the day that we can predict the future, everything that we do comes from good communication. I tell you what I’m thinking. My partners tell you what they’re thinking, and by the same token, it’s very helpful if you tell us what you’re thinking.” (consult 5; line 110; neonatologist A) | |
| “And I certainly, despite having many of these conversations, can’t even being to imagine what it’s like as a mom and dad.” (consult 14; line 255; neonatologist E) | |||
| “…really that kind of critical window is at 22 to 24 weeks where we’d really want to partner with you and your husband [to] determine what will be best here as you move through the next couple of weeks.” (consult 1; line 236; neonatologist H) |
| Category . | Subcategory . | Explanation . | Examplesa . |
|---|---|---|---|
| Provide more information | Statistics and/or numeric data | Description of population statistics, translating into risk of mortality and morbidity | “Babies that are born premature, and regardless of what may happen in the NICU, there is a risk of 10%–20% of cerebral palsy.” (consult 14; line 143; neonatologist E) |
| “…if you tried to save the life of a hundred babies who were born in this exact same condition that your son is in: 25 weeks, 400 grams with concerning patterns on the way the baby is getting nutrients and blood flow, the chance of survival would be 50%–60%. So, of the 100 babies that you did everything that you could, 50–60 of those 100 babies would survive. Now, of the we’ll say optimistically 60 babies who survived, your question then is how many of those will go on to have long-term problems like cerebral palsy and issues with learning and keep[ing] up with their classmates. And I would say probably 30%–50% of the babies who did survive would have long-term issues with learning issues or problems with cerebral palsy…” (consult 4; line 326; neonatologist D) | |||
| Spectrum of possibilities | Providing a wide array of possible outcomes, often a continuum | “…cerebral palsy can be something that’s strictly motor in that it affects the ability of the muscles to move in coordination with the brain. And for any premature baby, they are at risk to have some degree of cerebral palsy, and that’s where it gets a little bit difficult to predict whether there’ll be any cerebral palsy or how severe it will be. For some babies that are born extremely premature, maybe they can’t walk, and they may be in a wheelchair. For others, it may be just very, very mild and that they get extra physical therapy and their parents know that’s there, but it may not be something that’s even that apparent when they go off to school.” (consult 17; line 187; neonatologist E) | |
| “For some babies, what does it mean to be affected by prematurity? It means ‘Well, I took a little bit longer to grow and catch up in how big I was, and I’m a little bit more clumsy as I learn my motor skills, but the neighbors, my friends, no one else knows.’ For some kids it means ‘I was doing great; but when I got to third and fourth grade, I really had trouble paying attention in class, and that seemed to be more challenging for me than my friends.’ For other children, it may mean ‘I need a ventilator for several months.’” Rarely, a baby even goes home with a ventilator.” (consult 3; line 408; neonatologist B, J) | |||
| Specific details | Outlining the neonatal teams’ actions or response to certain outcomes. Often includes describing the physical space and team mechanics of the hospital system | “I would place a breathing tube into his airway to help him breathe because almost certainly his lungs wouldn’t be able to bring oxygen into his blood like they need to and so I would have to help him my best by placing a breathing tube into his airway.” (consult 10; line 87; neonatologist C) | |
| “…when the baby’s born… the first thing we’ll do is let the baby just sort of sit there still on the umbilical cord. Well, in most situations, we can do this and let a little extra blood go from the placenta to the baby. So, we don’t clamp the umbilical cord right away, most of the time, unless the baby really isn’t doing anything and we’re really concerned, like we need to get this baby some help right now. Then, we’ll take the baby to another room right next door. There’s actually a door between the 2 rooms, so we don’t have to go out in the hallway, and we’ll focus right away on keeping the baby warm, getting breathing started, and then pretty quickly, we’ll want to get IVs in.” (consult 20; line 368; neonatologist F) | |||
| Experiential knowledge | Storytelling (explaining what the provider has observed through their career) | “Used to be that earlier in my career, everything hinged on how the lungs were doing. Were the lungs mature enough so that the baby could survive? And when babies didn’t make it, if they didn’t survive, it could be you know hours to days before they died cause usually their lungs or sometimes their blood pressure wasn’t good. That can still happen, but now days when our youngest babies die, it is less likely to be in the first hours to days…” (consult 11; line 405; neonatologist I) | |
| “That’s how things tend to go, for what that’s worth. I’ve taken care of kids that have gone through the whole spectrum. I’ve taken care of kids who haven’t made it. I’ve taken care of kids who need a wheelchair to get around and have a lot of problems.” (consult 20; line 579; neonatologist F) | |||
| Identify when and/or how more certainty may be gained | Description of critical moments of information gathering specific to the individual neonate | “We resuscitate, we do full intensive care. That middle ground is we do a trial of resuscitation; so we do the resuscitation, we see how baby responds, we may go to the NICU, and then see how things go. [We] evaluate how are his lungs working? Are they working well enough we can support him? How is his brain doing? And we have nice points where we can sit down and talk about all of those things and how he is responding to our intervention and care.” (consult 2; line 281; neonatologist H) | |
| “After birth, we routinely, in the first week of life, will screen for bleeding in the brain with the head ultrasound, and we do another head ultrasound much closer to your due date to look for evidence of any injury of hypoxia or lack of oxygen. Well, that’s a long time to wait and, truthfully, I feel like families have to wait even longer. Because the ultimate brain test is really is our developmental skills.” (consult 16; line 205; neonatologist B) | |||
| “…in the face of uncertainty, let’s try to do things that will… give the baby a chance and preserve the opportunity for parents to help decide… do we continue with medicines and machines… or is it just not working out for this particular baby… sometimes, that becomes apparent over time…” (consult 6; line 507; neonatologist I) | |||
| Acknowledging the limits of medicine | Inability of medical practice, knowledge, and/or the community to provide clarity or meaningful intervention | “…I just don’t have any good way of predicting when or how long are you going to be pregnant (laughs). I certainly don’t know that. And even if I knew, okay this is going to be the day, there’s no way I could tell you how things are going to turn out in terms of survival and what he’d have to go through to get there, and how are things going to turn out in the long run. There’s just no way to know, and that’s the really hard thing about all of this.” (consult 19; line 222; neonatologist F) | |
| Pregnant woman: “that’s one of the things that is so frustrating about medicine. I mean, obviously, you have to make some boundaries, but it seems so arbitrary sometimes” (consult 24; line 483; neonatologist D) | |||
| Acknowledgment and acceptance of uncertainty | Naming of uncertainty in a specific situation; accepting that uncertainty exists, and it cannot always be modified | “We’re in a tight spot because there is not a lot of clear answers at this point or clear predictions of exactly how your baby will do. That’s hard to make decisions when there is uncertainty about that.” (consult 14; line 550; neonatologist E) | |
| “…what we’re dealing with, again, is a lot of uncertainty about what’s going to happen with this little guy when he’s ultimately delivered and the inability to predict how he’s going to do either during the first couple of hours after he’s born or, ultimately, what’s he’s going to be like if he were to survive when he’s 10 or 20 years old. Those conversations haven’t really changed much. We don’t have a lot of new meaningful data to say ‘wow, we’ve got a big game-changer here’.” (consult 24; line 490; neonatologist D) | |||
| Holding hope | To remain hopeful for a positive outcome in the face of uncertainty | “The fact is that we deal with a lot of uncertainty at this point in the pregnancy when we talk to moms and dads about what to expect. And we worry about some of those outcomes that I talked about, some of those complications that I talked about. Though balance it out with being hopeful that about half the babies will survive, and half of those babies will survive with good outcome.” (consult 17; line 242; neonatologist E) | |
| “…it’s hard to add any degree of certainty because the fact is there is reason to worry, and that’s the doom and gloom part of the conversation. And then there is reason to be hopeful, too, and that I absolutely care for babies at 23 weeks that have had long intensive care courses that have gone home, and they come back and visited me years later, and they’re very, very well and are going to school and may be wearing glasses from, you know, complications with the eyes to related to prematurity, but otherwise have very good quality of life and their parents are very, very hap[py].” (consult 14; line 585; neonatologist E) | |||
| Pregnant woman: “…my brain is saying you need to do comfort care; this is like just completely ridiculous; let’s not go through this; let’s not put the baby through this. But then my heart is like…”/Expectant father: “What if?” (consult 24; line 849; neonatologist D) | |||
| Relationship building | Building a relationship between provider and expectant family. May take many forms, including but not limited to the following: providing reassurance, promise of future provider availability, promise of truthfulness, listening to expectant parents and/or to the neonate, and checking for understanding | “Until the day that we can predict the future, everything that we do comes from good communication. I tell you what I’m thinking. My partners tell you what they’re thinking, and by the same token, it’s very helpful if you tell us what you’re thinking.” (consult 5; line 110; neonatologist A) | |
| “And I certainly, despite having many of these conversations, can’t even being to imagine what it’s like as a mom and dad.” (consult 14; line 255; neonatologist E) | |||
| “…really that kind of critical window is at 22 to 24 weeks where we’d really want to partner with you and your husband [to] determine what will be best here as you move through the next couple of weeks.” (consult 1; line 236; neonatologist H) |
Physician speaking unless otherwise noted.