Are you conflicted? Ethics in the NICU

[sadbuthappy]

I read this book called Baby at RiskI'm really hoping for a discussion. This book was published in 2006 so it's quite old given how fast medicine moves. And it has me conflicted about the history and how treatment is decided in the NICU. But I wanted to talk to actual nurses in the field to see how accurate it really is. Maybe the book is misleading. Here are some excerpts from the book about how some babies have been saved when maybe they shouldn’t have been considering what a low quality of life they go on to live. Stories like Michael from below scares me. It becomes more complicated when you think about the world’s allocation of resources. I know this is a difficult topic but I hope all of us can remain civil and not try to paint the other person in a bad light

Baby at Risk: The uncertain Legacies for Medical Miracles for babies, families, and society.

So from the book: none of this is my own words

NICUs are horrible, wonderful places. They save many lives and they cause much pain and suffering The question that has hovered around these unites since they were first developed in the late 1960s is whether we can have the good without the bad or if whether the current balance of benefits to burdens is worth it. - one doctor tells the author

Dr Siva "If you draw a line \[ NICU rescues\] that is where progress stops. If you push the envelope, things might improve. But it's a catch 22. The questions when do you keep pushing and when do you say 'enough is enough'.

" The NICU in the United States today has gotten completely out of hand. When I came into the field in the 1940s, the hospital environment for babies was simple- clean, warm. Nurses would feed the newborn babies. Those who were meant to survive did, and if they did survive they did well. They who couldn't make it were allowed to die; they were said to be stillborn. People in this country act as though there are no limits. Yet there is a limit because human reproduction is an imperfect process.I never wanted to be a neonatalogy to be a speciality because the focus is too narrow. It doesn't allow docotros to see what happens next to the children they save. It doesn't allow them to see the consequences of their interventions as they fulfill their personal rescue fantasties. " Dr. Bill Silverman(a pioneer of the field) told the author. Bill regretted that he has allowed his commitment to an "unshakable obligation to prolong life" to trump all other considerations. Only later did he learn and come to appreciate "that most parents feared disability much than death. They feared overrtreatment and said so very directly. Dr Bill Silverman grew increasingly uncomfortable with the neonatology with the technological imperative that hurt babies that was driving many intensivists to use new technologies because they existed even when they didn't make good sense and the team think approach that was allowing individual interventions to absolve them from personal responsibility for the pain and suffering the interventions were causing the babies and their families. The diffusion of responsibility allowed people not to worry about horrendous consequences of their actions.

Author talked about how babies born premature in 1950s were growing up blind from the oxygen gas in their intubators. The ventilators became the archetypal halfway technology getting babies only halfway to where they needed to be to lead healthy lives. A symbol of the first of the many medicines, therapies, the interventions that hurt the babies instead of healing them.

Some words from parents with had babies that were NICU graduates

"My son David was created by doctors. If the doctors could not give David a reasonable chance for a life of quality they should have let him die. And there's the old story- follow the money My insurance company paid $500,000 to this profit center. The doctors salvaged my son. They didn't save him. There are some things worse than death, an this is it " David was 13 years old when the author talked to him. He was functioning at the level of a three year old. He was born at 24 weeks.

Michael weighed one pound and fifteen ounces. He spent nine of his life life in the hospital and his days were fraught with interventions and crises -jaundice, bili light treatments, blood transfusions, brain bleeds, ventilator support, lung damage, poisonous levels of blood gases, breathing and heart problems. Michael is now six years, not toilet trained, will probably always need a feeding tube. His medical chart includes a daunting list: autism, bulbar palsy, behavioral difficulties, severe speech and language disorders, chronic lung disease, immunodeficiences, learning difficulties and so on.

Michael's mom Debby tells the author" I have to be honest and say I feel like we live in a prison. We're locked in the house because the outside world is not such a safe place for Michael, and yet neither is home. If NICUs are to continue to save extremely premature babies then the whole miracle baby myth needs to be dispelled. People need to realize that these babies comes at a price. No one warned us, for example, of the difficulties that kids with feeding tubes experience. We thought the tube would be in for a year and then be removed. But I've recently discovered that there is a chances that Michael will be in nappies at night for the rest of his life"

The author talked about the 2004 BBC documentary about 314 NICU graduates. 50 % had disabilities by the time they reached 2 and half of those disabilities were severe blindness, deafness, and cerebral palsy. 80 percent were dealing with physical or learning disabilities and impairments or both.

The author talked about NICUs had become profit centers and economic centers for certain hospitals. here is an article [https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2009.0897](https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2009.0897)

This passage near the end was thought provoking:

The NICU represents an "island mentality suggesting that economic development that improves the lives of a few peopl, while neglecting a vast peripheral population is a sound strategy for coping with the global crisis of resources and population. The NICU must be a temprorary historial phenomenom. Looking ahead fifty years to a world of a doubled population and even more greatly stressed world resources, it is incredible to think we will continue to invest social resources in such an extravagant and unbalanced way; and, if we we may well be charged by the next generations with inhumanity... \[as they\] count the lives that were not saved because our culture neglected the larger picture of life and death" Andy Jameton a philosopher wrote in around 1995. When the author asked him now he said he no longer thought that the NICUs would vanish because "profit centers are not very strict about whom they accept. Andy had come tho think more kindly about "rescue" although he felt that the US investment in rescue at the cost of public and environmental health was still "majorly excessive We need ways to do less and we need community decisions to decide what we are going to do".

But perhaps NICUs could make themselves more useful. They could be more discriminating. They could accept only babies whose chance for a healthy life was significant . They could stop accepting micropreemies and other babies, who, in low tech settings, would simply die- the ones who Bill Silverman had told me were once labeled stillborn. They could stop accepting babies whose "cures" were still just fantasies.

[NICU Guy, BSN, RN]

There have been a lot of advances in technology and protocols in the last decade when it comes to micro preemies. We minimize ROP by the use of upper limits of SaO2 for preemies. A 24 weeker will have a max limit of 92% SaO2 thus limiting the FiO2 required to maintain 92% and reducing the risk of ROP.

To minimize brain bleeds, the preemies heads are kept mid line and no elevating of the legs during diaper change. In addition, infants <1 kg are minimal interaction for the first 72 hrs of birth.

The excerpts you provided give the impression that the doctors bullied the parents into keeping their child alive. At least in my experience, the parents are the ones that push for "everything to be done" despite the doctors explanation of prognosis.

The ethical dilemma that I have is not the micro preemies, but the congenital anomalies that are incompatible with life. We spend a huge amount of resources to keep an infant alive for several months with no possibility of long term survival, mostly at family's request. The same can be said at the other end of the age spectrum. Many elderly people are kept alive for days or weeks in ICU because the family does not want to make the decision to let their loved one pass.

[adventure_rn, MSN, NP]

Woah, that's a lot of text.

I agree with NICU Guy. These days we do have prenatal consults with families to discuss risks, outcomes, and how aggressively parents want us to resuscitate.

On 6/28/2019 at 11:23 AM, sadbuthappy said:

If NICUs are to continue to save extremely premature babies then the whole miracle baby myth needs to be dispelled. People need to realize that these babies comes at a price. No one warned us, for example, of the difficulties that kids with feeding tubes experience. We thought the tube would be in for a year and then be removed. But I've recently discovered that there is a chances that Michael will be in nappies at night for the rest of his life"

Unfortunately, I think that the 'miracle baby' myth isn't a problem perpetuated by medical professionals, but by our society. We're pretty well-aware of how badly things can go. However, when you tell a family that you child might have a 5% chance for survival, they grasp onto that 5% and hope for the best.

One case in particular sticks out to me; I cared for a little 23-weeker IVF baby with a bilateral Grade IV head bleed (which is usually fatal), and his parents wrote a blog throughout his stay. Most of us thought he was going to die, or if he ever left the hospital that he'd be trach-dependent and brain-dead. When he was so sick, we had very serious discussions with his family about his brain bleeds and withdrawal of care. After he was discharged, I went back and read their blog from start to finish, and I was taken aback by how they described those first few days. They were really upset that we kept talking about the option to withdraw, and were furious that we were "asking us if we wanted to give up on our baby."

The thing is, we honestly don't know how those kids are going to do. The kid in my story above beat all of the odds and did astonishingly well. He probably has CP, but he went home without oxygen, he can feed himself, he talks, and he walks with assistance. He has delays, but his parents love the snot out of him, and they wouldn't trade him for the world. I've had plenty of kids who were born at around a pound and go on to meet (or even exceed) their milestones, even though many do not. We just honestly don't know which ones will do well and which ones will struggle.

In the end, we have to give the parents the options, and they have to decide what to do. I do think we could do a better job explaining what life at home with a severely, chronically ill kid could look like; I think we usually talk a lot about mortality risks, but not about what happens when you 'survive' but don't thrive. Unfortunately, you can't explain every possible complication and negative outcome when you honestly don't know how well or poorly a kid could do.

I do think that the book is a bit alarmist compared to recent data; I found this study from 2015 which found the following rates of morbidity in micro-preemies:

ROP (any eye problems, may need glasses/eye exams): 66% risk

Actual blindness: <1% risk

Hearing loss: 3% risk

CP: 6% risk

Cognitive delay: 9% risk

Just like parents have a selection bias for thinking that their baby will be the miracle baby, I think parents also have a selection bias that their baby won't have the possible complications we discuss. I think if you sat down a parent and said "There's a 6% chance your baby will have CP, 3% chance your baby will have hearing loss, and 10% chance your baby will have severe cognitive delays," they'd probably choose to resuscitate in the hopes that their baby would be in the 90% who don't have those things. The families in the book you described sound like the disgruntled 10% who are frustrated want someone to blame, even though they probably would have made the same decision even with all of the information (because most people would choose to resuscitate with a 90% chance that those things wouldn't happen). We don't have a magic ball to predict which kids will do well and which will do poorly.

I will say that I doubt highly doubt the idea of NICUs keep kids alive for profit. My understanding is that they aren't huge revenue generators compared to procedural areas like pediatric surgery. In fact, I've worked in NICUs (at highly reputable academic centers) were hospital admin flat out told us the NICU wasn't making enough money, so they were putting their resources into other profitable units.

[CdnNICUnurse]

Adventure_rn, BSN

i’m really curious about the stats that you posted about the micro-preemies....do you know what gestation they are talking about? I’m assuming it is American stats? I’m a Canadian NICU nurse for 13 years (yikes!!!) and from what I have seen in my work years, I find those statistics to be extremely low if they are talking about 22-24/6 weekers. I personally have never seen a 22 weeker survive (i’m Thankfully not in an inborn NICU, so the initial resuscitations are done by the birth hospital and then our transport team goes to get babe).

I’m wondering what you think of those stats and if they seem accurate with what you have seen through out your time In the NICU??

i can only speak for my particular unit here, but I often feel (and I know colleagues agree as this is a constant conversation at work between us nurses and RT’s!!) that in our discussions with parents, we give too much hope. I feel like we are often afraid of being honest about how bad it really is likely to be. I fully believe in positive thinking and giving a chance, but I also really believe in realistic expectations and the notion that not every life is supposed to be saved (that sounds truly horrible....it’s not meant to be though!). I feel like we also, very often, forget about the amount of suffering we have to cause .... and if chances are good, then it’s worth it....but if those efforts are extremely likely to be futile, and/or will only lead to a lifetime of constant intense pain and suffering.

All this to say, I am so thankful we have an amazing ethics team at our hospital, who spend a lot of their time with us in the NICU!!!

[sadbuthappy]

1 hour ago, CdnNICUnurse said:

Adventure_rn, BSN

i’m really curious about the stats that you posted about the micro-preemies....do you know what gestation they are talking about? I’m assuming it is American stats? I’m a Canadian NICU nurse for 13 years (yikes!!!) and from what I have seen in my work years, I find those statistics to be extremely low if they are talking about 22-24/6 weekers. I personally have never seen a 22 weeker survive (i’m Thankfully not in an inborn NICU, so the initial resuscitations are done by the birth hospital and then our transport team goes to get babe).

I’m wondering what you think of those stats and if they seem accurate with what you have seen through out your time In the NICU??

i can only speak for my particular unit here, but I often feel (and I know colleagues agree as this is a constant conversation at work between us nurses and RT’s!!) that in our discussions with parents, we give too much hope. I feel like we are often afraid of being honest about how bad it really is likely to be. I fully believe in positive thinking and giving a chance, but I also really believe in realistic expectations and the notion that not every life is supposed to be saved (that sounds truly horrible....it’s not meant to be though!). I feel like we also, very often, forget about the amount of suffering we have to cause .... and if chances are good, then it’s worth it....but if those efforts are extremely likely to be futile, and/or will only lead to a lifetime of constant intense pain and suffering.

All this to say, I am so thankful we have an amazing ethics team at our hospital, who spend a lot of their time with us in the NICU!!!

The fact that you guys have an ethics team is extremely reassuring. I thought I wanted to get a nicu nurse butthe ethics of some cases frightens me but if I was in a lower acuity nicu like level 2 or had a scenario like yours where there is an ethics team I can do my part of the job in peace

[FurBabyMom, MSN, RN]

2 hours ago, sadbuthappy said:

The fact that you guys have an ethics team is extremely reassuring. I thought I wanted to get a nicu nurse butthe ethics of some cases frightens me but if I was in a lower acuity nicu like level 2 or had a scenario like yours where there is an ethics team I can do my part of the job in peace

OR Nurse here - but I care for NICU kiddos when they come to us.

I agree with what NICU Guy said...it's the incompatiable with life kiddos which are more taxing. And like he pointed out, it exists with our elderly too - and I see that all the time (my job is both peds and adult).

I also agree with Adventure RN. Most inpatient units, but particularly critical care units, are not revenue generators. Those units are resource intensive, staffing costs are enormous, the technology to keep the patients alive is intricate and expensive... Procedure areas are the parts of the hospitals making the money under current systems. I would bet, that in nearly all hospitals in the US, the procedure areas are financing the rest of the hospital (this is true where I work, and administration admits it).

Regarding ethics committees - this is trend in I feel, most, academic medical centers. We have one, all of the large academic hospitals I've been in have had one.

[adventure_rn, MSN, NP]

11 hours ago, CdnNICUnurse said:

Adventure_rn, BSN

i’m really curious about the stats that you posted about the micro-preemies....do you know what gestation they are talking about? I’m assuming it is American stats? I’m a Canadian NICU nurse for 13 years (yikes!!!) and from what I have seen in my work years, I find those statistics to be extremely low if they are talking about 22-24/6 weekers. I personally have never seen a 22 weeker survive (i’m Thankfully not in an inborn NICU, so the initial resuscitations are done by the birth hospital and then our transport team goes to get babe).

I’m wondering what you think of those stats and if they seem accurate with what you have seen through out your time In the NICU??

i can only speak for my particular unit here, but I often feel (and I know colleagues agree as this is a constant conversation at work between us nurses and RT’s!!) that in our discussions with parents, we give too much hope. I feel like we are often afraid of being honest about how bad it really is likely to be. I fully believe in positive thinking and giving a chance, but I also really believe in realistic expectations and the notion that not every life is supposed to be saved (that sounds truly horrible....it’s not meant to be though!). I feel like we also, very often, forget about the amount of suffering we have to cause .... and if chances are good, then it’s worth it....but if those efforts are extremely likely to be futile, and/or will only lead to a lifetime of constant intense pain and suffering.

All this to say, I am so thankful we have an amazing ethics team at our hospital, who spend a lot of their time with us in the NICU!!!

I do believe that the micro definition in that study included kids who are a bit bigger and tend to do much better (I think it's weight-based for ELBW kids, but I believe the estimate includes up to 26-ish weekers). And it's definitely true that kids even a few weeks gestationally older tend to do much better, and there are more of them, which skews the data. Part of the challenge seems to be that there isn't as much data on the outcomes for the 23-24 week populations compared to older/larger populations.

The other really tricky thing about consulting parents prenatally is, like I said in my last post, we really can't say with certainty the extent of the child's deficits if they survive. With every body system, we have to give them the best and worst case scenario, since we really can't say what will happen; unfortunately, even when we explain that the worst case scenario is more likely, many families will cling to the best case scenario.

For instance, with neurodevelopmental deficits, we may say, "Your child is likely to have cognitive deficits to some extent; they may be severe to the point where you child will never walk or speak, or they may be more mild. While they're more likely to be severe, we really can't say with certainty to what extent they could occur." Or for respiratory dysfunction we might say, "You child will probably have chronic respiratory problems, which may be as mild as going home on a nasal cannula, or as severe as going home with a trach, but we honestly can't predict to what extent they'll occur."

So often, parents express that if there's some chance of hope (or some remote possibility that their baby could be ok), they don't want to feel as though they're giving up on them--because what if their baby is the miracle baby who could have beaten the odds, but they were never given the chance because their parents gave up on them. A lot of parents can't live with that possibility, even if it's an unlikely "miracle baby" situation.

I do agree that there's a huge gap between how honest providers think they're being with families compared to how much the family actually understands. I've definitely seen providers believe that they're being super-honest with families about poor outcomes, but they sugar-coat it so much for the sake of being 'therapeutic' that the family clearly doesn't get the point.

We've got a baby on ECMO right now who we really need to withdraw on. During rounds, our attending explicitly said (as a teaching moment for a resident), that his survival rate is about 2%, and that even if he survives he'll have tremendous morbidity. He's maxed out on pressors with his fingers and toes literally becoming necrotic and falling off. She made it very clear during rounds with the team that this kid is going to die, most likely with a long, drawn-out ICU death. She sat down to update the family and said, "He's very sick, and things are touch and go. I've seen kids who are sicker than him get better, but he's very sick right now. You know I'd never lie to you about how he's doing." She walked away from the conversation thinking she's communicated that he was mortally ill, possibly dying. The family took that update to mean, "He's sick but stable, and he could be getting better." The parents would probably feel much better about an early withdrawal if they understood his true prognosis, but since they don't, he'll probably languish in ICU limbo for a few more weeks to months. But unfortunately, I don't feel that it's my place to point out to the attending how poorly she got her point across.

But then again, he could be the miracle baby who gets better. Because we do, on rare occasion, see those kids. Just last month, we had a kid come back to our unit, walking, talking, dancing, snuggling with his parents (almost entirely developmentally appropriate) who had that exact same prognosis; he was languishing on ECMO with necrotic toes, and we were all convinced he'd die. Our providers don't feel that it's their place to assume or guarantee a good or bad outcome (since we never truly know).

Neuro deficits (or the extent of those deficits) are especially hard to predict because baby's brains are so plastic. We have kids with catastrophic fetal strokes which damage an entire hemisphere of their brains who go on to do ok-ish (compared to adults) because their brains can adapt. For that reason, I think providers are especially hesitant to prognosticate about how well kids will (or won't) do developmentally. Again, it's easy for them to say "delays are likely" without providing any clear insight on where they'll fall on the spectrum (from being late to hit milestones, to never being able to talk or walk independently). And like I said, when parents are definitely apt to hope for the best when presented with a spectrum.

[adventure_rn, MSN, NP]

33 minutes ago, adventure_rn said:

We've got a baby on ECMO right now who we really need to withdraw on. During rounds, our attending explicitly said (as a teaching moment for a resident), that his survival rate is about 2%, and that even if he survives he'll have tremendous morbidity. He's maxed out on pressors with his fingers and toes literally becoming necrotic and falling off. She made it very clear during rounds with the team that this kid is going to die, most likely with a long, drawn-out ICU death. She sat down to update the family and said, "He's very sick, and things are touch and go. I've seen kids who are sicker than him get better, but he's very sick right now. You know I'd never lie to you about how he's doing." She walked away from the conversation thinking she's communicated that he was mortally ill, possibly dying. The family took that update to mean, "He's sick but stable, and he could be getting better." The parents would probably feel much better about an early withdrawal if they understood his true prognosis, but since they don't, he'll probably languish in ICU limbo for a few more weeks to months. But unfortunately, I don't feel that it's my place to point out to the attending how poorly she got her point across.

I just wanted to point out the irony that this case would be perfect for the Hospital Ethics Committee (and I actually actively participate in my Hospital Ethics Committee), but I'd never personally bring it to their attention. A lot of Ethics Committees run into serious roadblocks with physician/provider politics and egos. Especially in the ICUs, providers often feel that they're best-equipped to make decisions, and they don't like feeling as though an Ethics Committee outsider coming in and telling them what to do. Even though anybody can request an ethics consult, doing so creates a ton of drama and politics if the request comes from anybody besides the medical team (at least in the handful of facilities where I've worked). This is something that our Ethics Committee has struggled with, as the medical team is often so deeply entrenched in the cases that they don't realize when they're in the midst of serious moral and ethical dilemmas.

[adventure_rn, MSN, NP]

Just wanted to point out that we have a heated pediatric ethics discussion going on in another forum (we got kind of sidetracked on the peds angle in the comments):

I can honestly say that I only experienced one major ethical dilemma the entire time I worked in NICU, but in PICU I feel like I'm confronted with soul-crushing ethical dilemmas All. The. Time. I felt exponentially less moral distress with our NICU standards of care, even when it comes to the resuscitation of nano-preemies.