Published online August 31, 2007PEDIATRICS Vol. 120 No. 3 September 2007, pp. 519-526 (doi:10.1542/peds.2006-2966)
ARTICLE
Resuscitation in the "Gray Zone" of Viability: Determining Physician Preferences and Predicting Infant OutcomesJaideep Singh, MD, MPHa,b, Jon Fanaroff, MD, JDc, Bree Andrews, MD, MPHa, Leslie Caldarelli, MDa, Joanne Lagatta, MDa, Susan Plesha-Troyke, OTa, John Lantos, MDa,b and William Meadow, MD, PhDa,b
a Department of Pediatricsb MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, Illinoisc Department of Pediatrics, Case Western Reserve University, Cleveland, Ohio
OBJECTIVE. We assessed physician preferences and physician prognostic abilities regarding delivery room management of exceedingly low birth weight/short gestation infants.
METHODS. We surveyed US neonatologists to assess their behavior in the delivery room when confronted with infants with gestational ages of 22 to 26 weeks. We identified 102 infants in our NICU with birth weights/gestational ages of 400 g/23 weeks to 750 g/26 weeks, whose follow-up care was ensured because of their participation in ongoing clinical trials. We determined 4 proxy measures for "how the infant looked" in the delivery room (Apgar scores at 1 and 5 minutes and heart rates at 1 and 5 minutes) and assessed the predictive value of each marker for subsequent death or neurologic morbidity.
RESULTS. For infants with birth weights of <500>600 g and gestational ages of 25 weeks, >90% of neonatologists considered resuscitation obligatory. For infants with birth weights of 500 to 600 g and gestational ages of 23 to 24 weeks, only one third of neonatologists responded that parental preference would determine whether they resuscitated the infant in the delivery room. The majority wanted "to see what the infant looked like." For 102 infants with birth weights of 750 g, Apgar scores at 1 and 5 minutes and heart rates at 1 and 5 minutes were neither sensitive nor predictive for death before discharge, survival with a neurologic abnormality, or intact neurologic survival.
CONCLUSIONS. The "gray zone" for delivery room resuscitation seems to be between 500 and 600 g and 23 and 24 weeks. For infants born in that zone, neonatologists' reliance on accurate prediction of death or morbidity in the delivery room may be misplaced.
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48 comments:
Helen, Stacy, someone --
Could you help me with the conclusion of this? I'm not sure I get what they're saying.
Andrea
Before my son was born, there was never any question about resuscitation. He was a 26-weeker, steroid complete. Even upon seeing him, it was still a gray area. He weighed 597 g with Apgars of 4 and 6 at one and five minutes, respectively. Upon assessment, he resembled a 23-weeker, but even the docs said they would have had a hard time NOT resuscitating him because he was a 26-weeker, whose outcomes are generally good (88% survival rate - only 20% disability). I would be hard-pressed to resuscitate another micropreemie (though I will readily admit that in the delivery room I'd probably reconsider). What the docs all told me was it was impossible to refuse to resuscitate based on gestational age/weight/Apgars and the like. They've seen the least likely babies to survive flourish and babies with every opportunity of survival pass away.
What the authors are saying is that neonatologists who think they get any kind of valuable information from seeing "how the baby looks" in the delivery room are deluding themselves and the family.
The measures of "how the baby looks" tend to be the Apgar scores or, later in the NICU, such assessments as the SNAP score). However, these measures do a poor job of predicting who will die (after a futile course in the NICU) or live with severe disability.
Other research has shown that gestational age measures taken prenatally are better predictors and can be used for decision making at delivery before the neonatologists need to become involved at all.
Well, my thought is, is that until the Baby Doe Laws and Born Alive laws are abolished, it doesn't really mean much to be talking about "physician preferences" does it? I mean, really, when their hands are tied with ridiculous laws like this, and parents are coming in to the OB unit with the expectation that their one pounder is going to be that March of Dimes miracle baby. .they're gonna resuscitate. The neonatologist is kinda sandwiched between a rock and a hard place.
One of my gals was a 24-25 weeker 21 years ago with apgars of 1 and 3 - there's no way she should have been intubated, but she was. .thanks to the the Baby Doe Laws. Then when her grade IV bilateral IVH appeared 2 days later, she was seizing and on full vent support, we asked that life support be withdrawn, with blessings and support of the Catholic Church, and still, we could not stop this madness. She suffered horribly and 21 years later still does. .
I think that this should be a political issue thrown out there and debated this next presidential election. Anyone have ideas on how to put this on someone's plate and have them take notice?
Apparently, those laws affected my preemie also. His apgars were 0 and 1, yet he was intubated. We have home video of him seizing shortly after entering the NICU. The nurses thought he was seizing. The doctors didn't. His bilateral severe brain bleeds were found through ultrasound two days later. You all can easily predict his outcome.
To Sarah:
The neonatologists were just a bit optimistic on the disability part.
New data from the Vermont-Oxford Network (from babies bron between 1998 and 2003) shows that babies born at 26-27 weeks gestational age have a 30.1% chance of severe disability diagnosable by age two.
In this cohort of 1,431 babies born at 26 - 27 weeks there was a mortality rate of 15% (14.7% to be exact).
Do they define severe disability? I'm asking, as one of my daughters who has Aspergers, Non-verbal Learning Disorder (NLD) and mild-mod CP was classified on one of these blogs by a neonatologist as "mild" according to the EpiCure study - presumably because she has a high IQ, no blindness, deafness and can walk independently.
However, she will never live independently or have a "career" - most likely a part-time job will be what she will be able to manage due to her emotional lability. Anytime she becomes stressed, she collapses and quits, usually ending up on some new antidepressant - it's happened with school and jobs multiple times. To me that is pretty severe in comparison to same-age peers.
So, in a round-about-way, and call me a pessimist, I guess I'm skeptical about mild, mod, severe classifications until a preemie reaches college-age and handling adult life. What may be a 30% severity issue at age 2 will most likely climb *considerably* with aging and developmental requirements. And, even those classified with mild, moderate disabilities (as with one of my daughters) they may not really be all that mild or moderate when it comes to real-world functioning.
And another thought on outcome data. .the home visit I had today with the college-age preemie with spastic quadriplegia and mom, got me thinking about how accurate neonatal reporting is. . .this mom said that when her child was an infant, he/she continually arched his/her back, couldn't put weight on his/her feet, screamed incessantly. When taking him/her back for a followup with the neonatologist, the neonatologist told her all was normal - that it was her (mom) who was neurotic "causing" this behavior. She apparantly came apart in his office and screamed at him that something was very wrong here and why was he ignoring it? She then took her child to a local pediatrician after doing some research - the pediatrician diagnosed the CP.
Being that this former preemie was a 32 weeker, is it possible that neonatology in some instances is under-reporting abnormalities seen in clinic so as to not be looking as though they are putting out too many higher gestational age disabled preemies?
I'm not exactly sure what the Born Alive laws actually entail other than to acknowledge that the words "person", "human being", "child", and "individual", shall include every infant member of the species homo sapiens who is born alive at any stage of development. Am I missing a piece of this law?
This does not translate that every baby born alive is to be resuscitated. The Baby Doe law doesn't say this either.
On Sunday my niece, Keiry Sarai Rodriguez was born alive.
She died shortly after birth with no medical intervention. She was a 21 weeker. Had she been born next week, it wouldn't have made a difference at our local NICU. Only if she had been a 23.1 weeker would things have been different provided my in laws consented to resuscitation, which I know they would have.
There are limits that every NICU has. It's not like every infant who is born alive is treated medically.
If I am missing nothing about the Born Alive law then I don't see anything wrong with it. Most certainly Keiry was a baby, was an individual, was a person loved very deeply. I had the honor of holding her shortly after she had passed. There have been conversations here about "fetuses" and how "un-baby-like" extremely early gestation babies appear. Of course it wasn't like holding a typical newborn, but she was certainly beautiful. The image of her perfect, tiny face is burnt into my mind forever.
At her funeral today she was honored like any other person who has passed in our family is. Her little body was laid to rest with the other babies who have passed too soon in the Children's Garden at Hope cemetary. She is forever a daughter, a sister, a granddaughter, a niece, and a cousin.
I am not saying she should have been resuscitated...as I wrote on my blog, I just don't see any evidence of 21 weekers being routinely resuscitated and I can't find any statistics on survival at 21 weeks.
I know as parents of preemies we have tough lives. Lots of doctors appointments, worries about the future, medical bills, emotional stress...I could go on and on as you all know. But let's not forget that we have a child to kiss goodnight every night. And even though from reading, it seems like some wish their child had not been resuscitated, had they not you would feel a different kind of pain...the pain of losing a child.
I think some will argue this is a better pain because it would mean the end of their child's suffering. I feel deeply for the suffering parents talk about here.
It is a nearly impossible dilema. What about the parents whose preemies are doing well? What about those who do not have the severe issues? After a lot of thought and reflection, I've decided there are no easy answers.
All I know is I wish pregnancy was easier, I wish babies never came too early, and I wish no parent ever had to bury their child.
Helen,
My son was born at the University of Iowa, and here:
http://www.uihealthcare.com/topics/medicaldepartments/pediatrics/neonatalintensivecareunit/index.html#LookForN
they show their outcomes for babies born from 1995 to 1998. I was told statistics from 1998 to 2001 (which they have yet to publish). I'll be honest though. When the neonatologist came in to see me while I was strapped to magnesium for the second day, he told me of disabilities ranging anywhere from glasses to severe mental retardation and CP, and I thought "Oh crap. I can handle glasses." My brain simply wouldn't accept anything other than the best possible outcome.
23wktwinsmommy, I am so sorry for the loss of your niece.
To Sarah,
I have, so far, been unable to locate the stats using the link you gave (though I'll keep looking).
I do have to agree with Terri w/2 about the ways neonatologists often try to define significant disability away.
The 30% severe disability stat from Vermont-Oxford is really only the tip of the iceberg of moderate to severe disability that will eventually be found in these children (more on this later).
Depending on the follow-up criteria used at any given NICU follow-up clinic, it may be showing something different from the Vermont-Oxford stats in which member NICUs try, as best they can, to standardize follow-up procedures and definitions.
Here's how Vermont-Oxford defines severe handicap at age 2:
-- Cerebral palsy
and/or
--inability to walk with support
and/or
--motor delay (PDI <70)
and/or
--visual loss in both eyes
and/or
-- hearing loss requiring amplification
and/or
--MDI <70 (retardation)
Helen:
Sorry about that. The link got cut off. If you type in University of Iowa neonatology outcomes prematurity in Google, it's the second selection with the title "What to look for in a a Neonatal Intensive Care Unit"... If I try to copy the link it just gets cut off. Oh, and no one ever told me of the severity of disabilities. I doubt it would have changed my mind at the time, because like I said, my brain only heard ... glasses. I didn't want to believe anything other than the best possible outcome. It wasn't until I started reading and perusing that was a little shocked at how devastating prematurity is, and what I'm finding to be the worst part of it is there is virtually no support or respite for situations like mine. This bothers me more than the disabilities. The Jane Doe laws are 'right to life' but it's more like 'right to fetus' because when the actual living part comes around the help is absolutely nil! (at least in my state, which is Illinois.. but that's another topic).
To Sarah,
We need genuine support for our families and children and realistic information for parents-to-be, new parents, and the public.
One of the reasons we have so few services is that most people believe the NICU spin: that life is normal for 80% of parents with preemies.
To tell new parents "Well, he might need glasses" is so totally wrong! It doesn't come *close* to getting at the reality of our children's lives!
It is my feeling that IF we changed the laws, and IF we got honest, we would still be in a bind. The bind is this: that, culturally, we feel entitled to good outcomes (from medicine) and we feel entitled to life. It is embedded in our culture, this entitlement mentality.
However, in these feelings of entitlements, we are not realistic. We are NOT entitled to anything. Not rose gardens. Not freedom from pain and suffering. Not normalcy.
People in other parts of the world and from other cultures or in other times in history,know that their lives and the lives of their children may be snuffed out without warning, without explanation.
Someone asked me yesterday about how difficult is it to work in the NICU. My answer: If it is just me and the baby, all is well, even with a very sick infant who may die. It is only when I have to explain to parents, help them cope, that it is very, very painful. I can be perfectly okay helping a baby to go, to die--until the family is there. Then it becomes difficult.
Analogy: If anyone dies at any age, and we consider their suffering, their trajectory in life, we may say "Okay. It is a mercy. It is time." But when we consider those left behind, those bereft, those family members and friends who will MISS the loved one who has died, then we have a lot of pain. The death actually makes sense until we consider those left behind . . .
As far as knowing this ahead of time, in the delivery room, for an infant/preemie. This is tricky, and we are not always right in our assessments. And if we do not keep up with and reflect upon the stats from Vermon-Oxford and other research, we will not have a clue.
We have said many times that it should be up to the parents. But parents have contracted with doctors and hospitals and form a partnership with them in the safe delivery of their children . . . so the reality is that everyone in that partnership has a vote.
I think that the best-case scenario is one that we cannot know about--it is done in private in the delivery room. The doctor and the parents decide, on the spot, about the condition of the infant, the convictions and wishes of the parents, and weigh it all, and decide to resuscitate or not to resuscitate. These cases do not make it into Vermont-Oxford study. They cannot. They are privately done, and they may not consider all the "rules of the game," such as Baby Doe laws . . . which is as it should be, as far as I'm concerned.
The other option we have talked about is to NOT present yourself at the hospital, if you are only 23 or 24 weeks pregnant. Handle the birth at home, as a miscarriage. In this way, the decision is yours and you take full responsibility. In order to do this (going back to our cultural underpinnings in paragraph 1), you have to believe that you are not entitled to all things rosy and fine--that you will have adversity, you will deal with it as best you can, and you can let go . . .
Some people think that medical people have a certain toughness--which I try to describe above. I don't think of this as being tough, but as being more realistic, and doing away with unrealistic feelings of entitlement.
terri w/ 2,
Yes, indeed! Your skepticism is well founded...What might appear to be a "mild to moderate" degree of disability in childhood can become much more problematic when that person tries to make a reasonable living. I've been practically tearing my hair out in frustration in trying to appropriately resolve that exact situation. NLD--also at times excruciatingly familiar--is one of those things that because it isn't a blatantly obvious or well-known and understood disability, many either give you a hard time or are so befuddled they don't know what to do. In either case, it makes life more complicated than it ought to be.
Guess they can't base "success" or "failure" of neonatal resuscitation and/or treatment on what preemies "look like" as babies after all. But my guess is that they don't have the funds to conduct long-term studies, and that they don't want to face the relatively high numbers of former preemies with disabilities that have a high degree of impact on their functioning. (Statistics and strict definitions notwithstanding!) If they saw what their supposedly "mild to moderate" people were living with as adults, that might very well force an overhaul of the policies surrounding resuscitation. Of course, there would be many people who would be loath to even consider that possibility, which would create its own set of problems.
To continue...can't say as I really know what I'd do if I were the mother of a baby they were deciding whether or not should be resuscitated because I've never been in that situation, but I heard plenty about it from my own parents. But I would think it would be tough in some ways to make a truly rational decision when its your own child at the center of the debate. It's not the preferences of physicians that should be primary; it's the preferences of parents. And if the parents don't know enough or can't reach a rational decision, there should be a team effort on the part of involved medical staff to find ways to at least include the parents in the decision-making process.
I think, from researching the literature, that the Baby Doe laws were originally designed to prevent the deaths of babies simply because they were disabled. But...the other side to that coin would be, who is the medical establishment or the government to force parents to raise a child with problems that could very well be beyond their parenting abilities, coping skills and financial means to handle? It's an extremely thorny issue that needs much closer examination rather than hasty laws thrown together in a life or death situation. Most parents--mine included--have so much invested in their child that there would be no question as to the initiation or continuation of treatment. But the lack of choice implicit in the laws is certainly problematic. I think Sarah nailed the problem squarely on the head. You don't know which babies will thrive and which will wind up succumbing to their problems, so really you have to try and treat them all to some degree, even if that doesn't seem quite right. It's not a perfect solution, so it just reinforces the need to continue looking long and hard at the entire issue.
Some long-term data from the POPS study in the Netherlands:
At age 19 years of age, only about 5% of infants born at 25 to 26 weekers had no problems. Death or moderate to severe handicap were the outcomes in about 85% of cases.
At 27 weeks gestational age about 15% had no problems. Slightly over 60% either died or had moderate to severe problems.
At 28 weeks gestational age about 15% had no problems. Around 60% either died or survived with moderate to severe problems.
At 29 weeks about 20% had no problems and about 50% died or had moderate to severe problems.
At 30 weeks slightly over 20% had no problems. About 45% either died or had moderate to severe problems.
At 31 weeks, about 30% had no problems. Death or moderate to severe problems were outcomes for about 40%.
(I'm getting these figures from a graph so the numbers aren't exact.)
Here's how the categories of problems were determined.
IQ:
85 or above -- no problem
70 to 85 -- mild
problem
55 to 70 moderate problem
below 55 severe problem
Hearing loss in best ear:
below or equal to 25 dB -- no problem
between 25 and 55 dB moderate problem
below 55 dB severe problem
Vision:
ascertained form participants self-report although being blind or severely visually impaired was slassed as a moderate problem
Neuromotor (based on a number of tests of walking, coordination, posture, and muscle tone according to Dutch norms)
Health status focusing on vision, hearing, speech, ambulation, dexterity, and cognition, self-care, daily activities, social integration, economic self-sufficiency.)
Educational attainment.
***
Among all 19 year old survivors born at 25 to 31 weeks):
27.2% had no problems according to these measures
41.1% had mild problems
31.7% had moderate to severe problems
Among survivors:
40% at 25 to 26 weeks gestation had moderate to severe problems.
29% of those born at 31 weeks had moderate to severe problems.
The authors state:
One might speculate that advances in medcal technology...might have led to a reduction in[recent] rates of disabilites. However, because of these advances, ever-increasing numbers of extremely sick and immature infants now have a chance to survive and may add to the total number of children with problems in functioning in the community.
Recent Dutch cohort studies confirmed that improvements in perinatal and neonatal care have led to an increased survival of especially extremely preterm infants.
However, increased survival has resulted in more morbidity.
We therefore suggest that our results have relevance to survivors of current neonatal intensive care.
[Hille et al. Functional outcomes and participation in young adulthood for very preterm and very low birth weight infants: The Dutch project on preterm and small for gestational age infants at 19 years of age. _Pediatrics_2007;120:e587-e595.]
Most parents--mine included--have so much invested in their child that there would be no question as to the initiation or continuation of treatment. But the lack of choice implicit in the laws is certainly problematic. I think Sarah nailed the problem squarely on the head. You don't know which babies will thrive and which will wind up succumbing to their problems, so really you have to try and treat them all to some degree, even if that doesn't seem quite right. It's not a perfect solution, so it just reinforces the need to continue looking long and hard at the entire issue.
Medrecgal,
I don't understand this logic AT ALL ... WHY do you think because misguided or just plain disingenuous medical professionals want to "claim" that outcome is difficult to assess that it means treatment of all is mandatory ? Nothing could be less logical. Simply because a person became pregnant (by plan or lack of planning), does NOT mean that they intended for their lives to be permanently and devastatingly altered, nor does it mean that it is their intention or plan to conscribe another (still as yet unborn) person to a life of pain, disability, alienation and dependancy. A does not equal B, is it true that there are parents who could not imagine doing anything less than the most heroic measures, regardless of how poor the outcome or how high the price both in terms of suffering and money. Yes of course there are. But there are parents (I know MANY) who did NOT want that done - so anything that enforces a treatment mentality (law or institutional policy) disrespects parents who have just as much "right" to have their wishes, beliefs and feelings acknowledged and supported as the 'full court press' parents do. The result of both actions is devastating to the family that felt the opposite way - parents who felt their wishes for extreme measures was dismissed, live the rest of their lives wondering "what if", conversely, parents who wanted to provide their preemie with appropriate comfort care and be given a chance to say goodby in a dignified way, must instead spend everyday watching a child suffer and wonder "why". Anything which tries to place one group of parents above the other is a devastating paradigm.
The laws and the policies try to hide behind the complete lie that there is 'no way to guess outcome' ... it's just not true. There are tons and tons of peer reviewed published data that lets anyone who doesn't want to hide from the truth the chance to acknowledge that outcome is not a nebulous mystery.
I completely agree with Chris that so much of this stems from the reprehensible American fantasy that we are 'entitled' to so much that no one is truly entitled to. In other places in the world, the perspective is so much less narcissistic.
All the best,
Sheila
Sheila, I think you are right on target. One of our preemies had extremely severe problems at birth...so severe that we just assumed that no doctor would even try medical heroics in such a case. But during the NICU stay when we asked about his potential future, all we were told was that his future was unknown and the brain could rewire itself. Later, when we took him to the 6-month followup clinic, the summary that was later mailed to us stated that babies who were so sick at birth and had such a complicated course in the NICU could not be expected to meet developmental milestones! Aha! They KNEW this all along! We never received another invitation for followup. Further, his twin who all this time I considered to have a mild disability, is actually moderately disabled according to the POPS study that Helen posted.
Oh, and I don't believe we are entitled to a life free of pain or problems. But I do think parents are entitled to an honest assessment of their newborns and to the right to make decisions concerning extreme medical interventions.
To Sheila, and to medrecgal who said "most parents, mine included...",
Actually, when asked the question, most have stated (in polls, at any rate) that they *don't* want
everything done and about 80% or more want the right *not* to resuscitate and/or treat their baby when the outcomes are likely to be poor. Adults make the same statements regarding their own care.
We also know that most pregnant women want prenatal testing, and that a large majority who receive negative information on outcomes choose abortion.
I would like to see a situation in which two hospitals in a given community provide all expectant parents, well in advance, with honest and complete information about projected treatment and outcomes at each stage of possible live birth throughout pregnancy.
Hospital "A" would give parents the right to refuse resuscitation when they (the parents) feel the burdens of treatment outweigh the benefits.
Hospital "B" would be committed to treat everyone aggressively.
Let the parents then vote with their feet.
Hi Helen,
I don't think that "most" parents want heroic measures - I'm sorry my note was clear as mud. I definitely think there is a large, and underserved population of parents who were steam-rolled by a NICU industry on steroids that is out on the flimsiest ethical limb.
sheila
To Sheila,
I think you are right.
What I'm trying to say is that I don't think the current situation is due to narcissim. When given full information and real options, parents tend to make different choices.
But, as you point out, parents are *not* informed in a realistic or timely manner. They may also be bullied (subtly or not so subtly) into opting to do "everything."
Once parents bring home a living child, it is hard to do anything but defend the "decision" they made -- however uninformed or pressured it was. This is just human nature.
But when given a real chance to bail out beforehand...most will chose to do so.
Helen,
Re: parents being "bullied into opting to do everything"; I guess I must have been a fluke, then, because that was exactly the OPPOSITE of what happened to mine. Maybe the tide has changed in 30 years; maybe the technology has become so totally pervasive (and also invasive) that the medical profession in general can't see straight enough to know when to stop. I liked your "two hospitals" idea, though; that way it would really be the choice of the parents and not of the doctors.
Sheila,
Well, since you wrote that you "don't understand this logic at all", I'll try to explain it: I don't think it's right to swing in either extreme direction. I said "treat them all TO SOME DEGREE"; I wasn't suggesting that every baby would get every treatment possible, just that they shouldn't be just left to die without doing ANYTHING.
Where does it say that admitting to not knowing the likely outcome is "a complete lie"? Are doctors God? Is it possible that there are still many avenues to research that would influence such knowledge of outcome? If my doctors had used your logic, I would be DEAD. So maybe MY logic is a little flawed by the knowledge that some people using a different one would have cost me my LIFE. I'm not suggesting "heroic measures" are always appropriate; I'm suggesting that for as much technology is out there at their disposal, doctors and other medical professionals don't know EVERYTHING. It isn't always a cover-up when they don't provide every last bit of information. There is, after all, a huge difference between large studies that cover a multitude of situations and an individual family with a particular baby with the problem(s) studied. The studies can't tell everything.
I think when taking into account certain religious beliefs and cultural values it is very difficult to say "most" parents would chose not to treat extremely preterm babies. I think there is a significant part of the population who would feel like opting not to treat is a form of abortion or mercy killing.
Many Christians, especially the Pentecostals I know would in no way consent to allowing their baby to die. I know there are Catholics who would feel the same way, as well as other people whose faith is a large part of their lives.
I also think about women who have been trying for years to have a baby and this is their last chance.
Even when told the possibilites and even probablities, I truly think many people will hang on to the belief that their child could defy the odds, or believe that no matter what the outcome, they will love this child and will do whatever it takes to give them the very best life possible.
Of course I agree there will be people who will opt not to resuscitate if given the option. There may even be MORE people who opt not to...but I disagree that "most" people would not chose resuscitation. And this opinion is in no way because I am covering for my choice to resuscitate. As I've admitted in the past...asking if I wanted to save my babies while I lay in bed in labor was in no way preparing me to make a rational choice..even though of course I do not regret my decision, how could I? I have two children who I love with all of my heart. I could never wish I didn't have them in my life.
While I was in the NICU for four months I saw first hand how people's faith in God prevented them from making a decision to end life. On such example was a Catholic family with twin daughters. One daughter was extremely sick. The neonatologists told the family there was no chance. They told them to discontinue care and end her suffering. They refused. They believed that it was in God's hands, that whatever decision HE made they would accept. They just could not consent to giving up. They believed there was a possibility of a miracle. Even though I personally disagreed with their decision because I saw the baby's sats in the 30s for hours and I knew she was dying, I can't condemn them for this belief. Because we may not live our lives with such faith and belief in God it may be hard to realize that many people do.
I just think we are counting out a large portion of our country if we believe most people will not chose resuscitation.
And a little off topic, but what happens when you have a baby whom the parents have opted not to resuscitate but is continuing to breathe hour after hour. How long does this go on? I ask because while in the NICU I was shown a picture on the wall of NICU graduates of an 11 year old former 23 weeker. The parents had opted not to treat him, only he "wouldn't die." He was brought up to the NICU and treated and obviously survived. Maybe this is not as common for a 23 weeker, but there was a 25 weeker who came up to the NICU breathing room air while my kiddos were there. So, what do we do about these situations? Just wait it out no matter how long? And how many parents are going to be okay with that? Holding their baby while he/she continues to breathe, and breathe, and breathe.
To 23 weeks twins mom who said:
"I think when taking into account certain religious beliefs and cultural values it is very difficult to say "most" parents would chose not to treat extremely preterm babies."
People of all faiths were included in the polls of the general population that resulted in the 70 to 80% who wish to have the right not to treat or resuscitate a severly compromised baby.
The general population was also used as the basis for studies of the percentage of women who wanted prenatal diagnosis and who chose abortion when the fetus turned out to have problems.
Fair enough, but as Americans I think we really enjoy having the *right* to make decisions, but I think this is different than asking parents if they WOULD chose not to resuscitate. Which of course isn't even a very significant question because it may be easier to say what you would or wouldn't do without having ever been in the situation. Where are the statistics on people who chose resuscitation versus those who don't?
To medrecgal:
Although no doctor (or anyone else) can know *everything* -- including whether or not the sun will rise tomorrow -- neonatologists and obstetricians *do* (or should) know enough to let parents make informed decisions about how they want to proceed.
To say -- when you *know* the outcomes are >50% to 100% death/disability, and that even the 'good' outcomes are achieved with great suffering --
"Gee, we just don't know" or "The brain can rewire itself" or "He may have to wear glasses" is at best misleading, and, at worst, outright lying.
To ask parents to bet the rest of their lives, and their child's life, on such misleading "information," in my view, is just plain wrong.
To 23 weeks twins mommy:
Those women who choose abortion rather than having an impaired child clearly opted against resuscitation.
I am told that many late term abortions are requested by neonatal staff, or their family members, who have gone into preterm labor. I think this should tell us something.
And there is now a test that can tell (as early as 16 weeks) whether or not a woman is destined to deliver prematurely and whether or not infection/inflammation is involved (as it usually is). Right now the test is being used in South Korea, and talked about at medical conferences.
If it becomes widely available, it will be interesting to see what women and their families do with that information.
Helen,
So in the mean time without the test to determine preterm delivery being widely used here in the US,(thereby meaning women would not have the option to abort in order to avoid this issue), in the cases of women who do deliver prematurely, say at between 22-25 weeks, how long do you think it is ethically responsible to allow a baby to continue breathing without intervention?
Anyone else I would like to hear your opinions too, but Helen is so good at replying directly back to comments, so I am asking her directly since that part of my comment hasn't been responded to yet.
How long is it ethically responsible to let a baby go on breathing without intervention?
I have seen various scenarios in the NICU, which is to say, it has been case-by-case:
Once there was an infant with a birth defect incompatible with life. This baby was removed from life support . . . but a nasal cannula was left in place, so that the infant wouldn't suffer from air hunger. The bedside nurse assesses the baby for distress/pain, and provides oxygen and pain medication so that the infant will not suffer.
I have seen kids just gradually breathe more and more slowly, with sats dropping the way twinsx2 mommy states. They may have been medicated for pain, which may, in turn, further depress their respiratory drive. At some point, we may turn off the monitor or turn off the monitor alarms. It is only when we have to call the parents in for the death that we leave the monitor on, calling them to give them adequate time to get in.
When the parents are there, we remove all leads and tubes, and place the baby into the parents' arms, and provide a place of privacy. We tell the parents that the baby will breathe more and more slowly, and his/her color may change. A nurse or a doctor goes in to the parents from time to time to see how they are doing. It is the doctor who must pronounce the time of death . . . Parents may wish to hold the baby even after death . . . Various cultural behaviors and practices happen---large family gatherings, loud wailing, tearing of clothing, etc.
I have removed a baby to the morgue, and then gone back and retrieved the baby, so that the parents can see them/have them again. They thought they were ready to let go; and then they weren't ready. There is a great deal of variability, even within a single culture . . .
Another baby with a birth defect incompatible with life, went on for 3 days, breathing with only a 3-chambered heart! Her mother was with her in a private room the entire time. The child died i
on the 3rd night . . . This death had been preceeded by 7 weeks of misery, with the mother angry and unwilling to let her baby go. It turned out, in the end, to be one of the most peaceful and beautiful deaths I have ever witnessed.
My own Vic was removed from the monitor (he had self-extubated several times) and he was made a DNR by the docs and his birth mother--that has kept breathing now for 12 1/2 years.
Case-by-case is the only way to go-figure.
Chris and Vic
Helen,
That type of head in the sand, patronizing attitude you described isn't ever appropriate, because it assumes that parents are ignorant enough to believe that there will be a "perfect" outcome. However, I also believe it isn't appropriate for physicians or other medical personnel involved in a preemie's care to be so blunt as to say things like, "We aren't even going to try because there's no chance it will help, and your baby would be better off dead." Unless a baby has catastrophic problems that are obviously lethal or severely life-limiting, this attitude strikes me as inappropriately harsh. (There are some situations where this is true, but it should not be expressed in such all or nothing terms.) As I suggested before, there has to be a middle ground where parents can make reasonable decisions and not be completely blindsided by too much information. The fact that this doesn't exist yet is evidence that there is a long way to go in educating everyone involved in neonatology.
Perhaps the focus needs to be directed at outcomes and long-term consequences rather than trying to save ever-smaller and increasingly sicker babies. (After all, as I've heard it said before, there's a reason pregnancy was designed to last about 40 weeks, give or take a couple.) I know, it's a money thing, but this lack of long term vision may be at least partly responsible for the kinds of outcomes described in the various studies you've posted here. If they don't see it, they don't have to acknowledge it.
Medrecgal spoke about shifting the focus from trying to save smaller and sicker babies . . . to focus on long-term outcomes.
Here is what I think neonatologists and neonatology would say, if they were willing to soul-search and get honest:
1) But my strength is in emergency medicine and intensive care--thus, I feel I am at my best at a resuscitation and/or stabilizing a critically ill neonate. I do not want to/do not feel my strength lies in focusing on long-term outcomes (sometimes referred to as rehab issues).
2) Honestly, I cannot keep up with the research, and wish to reserve judgment on the controversies in neonatology. (In our discussions, we note that even the most essential ethical issues seem to be controversial.) I wish to reserve judgment because it helps me decide the course of each individual neonate on a case-by-case basis. (Or because the neo has had limited experience with a particular case scenario, or because the practice to which s/he belongs has a particular view and standard about this kind of a case, or because of the medico-legal atmosphere in this hospital, in this state at this time in history. Or many other reasons--or excuses, if you want to look at it in that way, for NOT examining this closely NOW.)
I feel that the best way to influence the decisions made upon the birth of a very premature child are:
1) Imagine the best case scenario--the baby of your dreams and living happily ever after; and immediately imagine the worst-case scenario. And face off with both scenarios with the other parent. No dodging. No denial. If you guys spent x-amount on baby furniture, car seat, and layette, and discussed it and spent time/energy, give this kind of discussion just as much time/energy/money. Do the homework. Pin down the OB and the neonatologist at your local hospital. Get them to print off research studies so you can truly be informed prior to any future decisions.
2) Examine your own beliefs, your own ethical values. Try to project a 1-year, 3-year, 6-year, 10-year, 18-year plan for you and your children. Include your career and whether you are willing to set it aside. Include the possibility of alientation or divorce from the other parent--for example, what do you think would fatally weaken your relationship? A child with a disability, perhaps, that required full-time care from one of you or from a highly-qualified nurse at home?
Can you afford this? Emotionally? Financially? What kind of health insurance would you need? Would this mean you could not have other kids? What kind of support system would caring for this child require? What happens when you are too old/infirm to care for a child who will never live independently? When you die? What will become of your child?
3) Have you known well the circumstances of anyone who had a sick newborn, a preemie, a child with disabilities? What do you remember of these people from your childhood--when you were in an impressionable stage? Have you been privvy to the frustrations of these families in your adult life? What experience has your mate had with sickness/injury/disability? Is there a family in your church?Do you feel you have enough "background" to guide you?
Or would you like to read some stories, some blogs, see some movies/documentaries? Would you like to volunteer to help these families? Would you consider doing respite care for such a family?
4) Can you talk to your mate and your doctor about anything and everything surrounding these touchy issues? What would hold you back from talk to them? What would you feel/do if there was disagreement? How long would it take to work out a compromise? (Once you are pregnant, you have 9 months or less!)
5) How dispassionate can you be about this and other sensitive issues? Are you able to make decisions based on facts and research, or would your emotions overrule? Do you WANT to make decisions based on fact (mostly) or emotion (mostly)?
6) How much are you influenced by others---do you think that the doctor would be smarter about this than you? Who has the right to make the decisions? You, the parent? or the doc? How much would you be influenced by family or by church? Your mate?
Maybe, if we ourselves did not get the chance to approach our issues this way, maybe we can help our own kids, or our nieces and nephews to approach their future as parents in a more reflective way.
Chris and Vic
23wkstwins asks:
(thereby meaning women would not have the option to abort in order to avoid this issue), in the cases of women who do deliver prematurely, say at between 22-25 weeks, how long do you think it is ethically responsible to allow a baby to continue breathing without intervention?
For me ... this is a simple situation. If the parents do not want their child connected to the Borg. The answer is indefinitely, until the child died or just continued to breath and lives. I think the problem here is that there is a highly dramatized and polarized view of what "nothing" is ... 'nothing' ... is not NOTHING, people read "no aggressive/extraordinary measures" and draw a mental picture of a blood/amniotic fluid covered fetus left in a metal tray while folks go about their business. "Nothing" actually means, the preemie is gently and carefully cleaned, warmed, wrapped in a swaddle, placed in a quiet, warm, place with appropriate pain control. The infants parents are encouraged to hold the baby, talk to the baby, take photos, take foot prints, take as much time as they want with their prematurely born child. It doesn't matter if the time they get is a few minutes, a few hours or even (though this would be rare except in the case of an older gestation baby born with a condition incompatible with life) a few days.
Just because a fetus/infant is making respiratory effort, doesn't mean that its outcome is something his or her parents want for their child or their family.
I don't know when "crash cart medicine" became the standard ... there was a time when the ethics of medicine would have first considered the impact of "doing 'everything'" ... But it's come down to a place where 'doing everything' is now the accepted cultural standard .... but our society is about as cruel and unaccepting of the result of that effort as it could be. They don't want to allow death with dignity ... but after we force life upon you, you darn well better not have anything which prevents you from being a completely normal, productive member of society free of learning or other disabilites ... otherwise, they need you to quietly move to the back of the bus and suffer your fate out of the sensitive view of the public.
sheila
Dear Sheila;
This statement is perhaps one of the most profound things I've read on the subject of the ethics of saving preemies. .thank you. Even C. Everett Koop - advisor to Prez Reagan who passed the dreaded Baby Doe Laws, warned that we must be sure to support those children who are saved as a result of this law - yeah - I see THAT's happened. .
Sheila profoundly said: "I don't know when "crash cart medicine" became the standard ... there was a time when the ethics of medicine would have first considered the impact of "doing 'everything'" ... But it's come down to a place where 'doing everything' is now the accepted cultural standard .... but our society is about as cruel and unaccepting of the result of that effort as it could be. They don't want to allow death with dignity ... but after we force life upon you, you darn well better not have anything which prevents you from being a completely normal, productive member of society free of learning or other disabilites ... otherwise, they need you to quietly move to the back of the bus and suffer your fate out of the sensitive view of the public."
To 23weekstwinsmommy who said:
"Helen,
"... how long do you think it is ethically responsible to allow a baby to continue breathing without intervention?"
I'm all for babies breathing without intervention!
To medrecgal who said:
"Helen,
That type of head in the sand, patronizing attitude you described isn't ever appropriate, because it assumes that parents are ignorant enough to believe that there will be a "perfect outcome."
***
However, the examples I gave come from parents posting on this blog describing what they have recently been told in the NICU or, at least, what they heard.
You correcectly charecterize these statements as "patronizing" -- and that is putting it mildly!
***
As for the docs, whom you depict as saying:
"We aren't even going to try because there's no chance it will help, and your baby would be better off dead."
***
I have never (credibly) heard of this being said to a parent in the NICU.
Docs have every motivation, every incentive to "try," especially when the parents *want* treatment.
Except in the most *extreme* cases where treatment arguably becomes nothing more than pointless child abuse, doctors are *not* going to say these things.
Helen Wrote:
Docs have every motivation, every incentive to "try," especially when the parents *want* treatment.
Except in the most *extreme* cases where treatment arguably becomes nothing more than pointless child abuse, doctors are *not* going to say these things.
No, not neccessarily. Doc's are human, with emotions, and opinions, same as anyone else. The conversation I had with my son's neo after the discovery of his brain bleed will forever be etched into my mind. He very, VERY bluntly stated that my son was irreparably damaged, and that death would be the appropriate and merciful end. At that time I was 3 days post a completely unexpected emergency c-section pre-term birth. Everything was new, and overwhelming. I had nothing else to go by. But when I asked if he was telling me to remove support, he replied No, because he felt that my son could probably breathe enough on his own to sustain life, but not enough to keep his O2 levels high enough to prevent further damage. Then he said it was a SHAME his lungs were in such good shape.
Yes, Doctors can and will say these things.
A theory/thought has been kicked around for a number of years between my best friend of 20 years - also a mother of a preemie - 28 weeker with a bilateral grade IV IVH like my daughter - born in the same NICU a year apart. .
Both of us at that time had top notch health insurance. .both of our families had double coverage both of our husbands as well as ourselves had health plans through our employers.
We wonder if NICU's have any type of policy about keeping babies with grade IV IH's going if the parents are well insured. Both of our kids had DNRs because they were both failing so badly, yet both of our kids survived. My friend witnessed bagging on a baby that was a DNR, so are DNR's frequently ignored in the NICU if parents have excellent health insurance? In light of the HMO horror stories, it does make one wonder. .
Future of Hope wrote:
"The conversation I had with my son's neo after the discovery of his brain bleed will forever be etched into my mind. He very, VERY bluntly stated that my son was irreparably damaged, and that death would be the appropriate merciful end."
You are fortunate that you had a neo who was honest. We had the exact opposite experience. While the neos didn't say our baby (VLBW, not a micropreemie & normal gestational weight) would be normal, they didn't say he would not be normal and avoided answering our questions. Answers were generalized, filled with hope but not specific. Our baby was born "extremely depressed" according to records but technically DOA and had bilateral severe brain bleeds followed by kidney failure and a bunch of other complications. He was comatose for a while. So, we were not "ignorant" to expect that he would be "perfect," but the NICU staff, both doctors and nurses, gave us every reason to believe he might still recover well and have some abilities...such was walking or talking or seeing. He has none of those, but he can hear to a certain degree, and he is responsive to people.
Years later, although his disabilities are among the most severe imaginable, I still can't say what we would have done had the neos been honest about his likely future. However, had I known how vigorously and for how long they would attempt resuscitation on what then was an extremely pre-term infant, I might have asked that resuscitation be discontinued if my child did not respond immediately.
We were not told ahead of time their definition of "resuscitation." It obviously meant to keep trying for a long, long time no matter what.
In my opinion, the poor outcome from the very beginning is probably the most likely reason that the neos were not honest with us. I think they just didn't want us to know they had messed up so badly. After all, it would be months or years before we realized the true impact.
For the record, we love our child no matter what, and even though he suffers immensely, his life does have value and meaning for eternity.
But if I accomplish nothing else from this experience, I hope expectant parents will become a lot more medical saavy, and I hope doctors will be more accountable to parents as well as more accountable for their decisions, especially those made without parental input.
I think that accountability you speak of may be wishful thinking considering that many neos with blogs of their own out there seem to be trying to negate that our kids are even out here with this level of need.
Additionally, I am really aggravated by the opinion that babies must be aggressively saved, resuscitated, whatever, because if we don't, we will lose some that *might* have been normal. To me that says my daughter's 21 years of suffering is just not important because - golly gee - we have normal survivors out there. It is so negating.
To future of hope who said:
"The conversation I had with my son's neo after the discovery of his brain bleed will forever be etched into my mind. He very, VERY bluntly stated that my son was irreparably damaged, and that death would be the appropriate and merciful end. At that time I was 3 days post a completely unexpected emergency c-section pre-term birth. Everything was new, and overwhelming. I had nothing else to go by. But when I asked if he was telling me to remove support, he replied No, because he felt that my son could probably breathe enough on his own to sustain life, but not enough to keep his O2 levels high enough to prevent further damage."
****
This doctor was honestly telling you the probable result of your son's damage to that point, but that is very different from saying he wasn't even going to *try* to treat him. And, as it turned out, he wasn't telling to convince you to remove support at all, quite the opposite!
He stated that *not* trying might lead to survival with even more damage. This is questionable.
A more honest statement might have included these words:
"We just don't know, even after decades of providing NICU therapy, how much oxygen these babies need to prevent damage or how much oxygen is actaully harmful to their brains, lungs, eyes and other organs.
"In fact there is good evidence that the O2 levels we've always thought were good were actually way too high, and have caused and/or worsened damage for countless premature infants. We just don't really know.
"But we do know that being on a ventilator causes and/or worsens brain damage -- the longer the baby is on the ventilator the worse it usually becomes. And then there is the permanent lung damage...and the collateral damage to other organs from TPN, infections, blood pressure instabilities, toxicities, and the horrendous stress of constant pain -- all these are the unavoidable side-effects of NICU treatment.
"Many of these babies will also require steroids at some point in their ventilator course, drugs that are known to be neurotoxic and which (conservatively) have been estimated to cause thousands of additional cases of cerebral palsy and cognitive/psychiatric impairment in preemies in the US each year. And then there are the shut downs in lung growth, the seemingly permanent abnormalities of the immune and adrenal systems, and much more, none of it good, attributed to the use of steroids in preemies.
"We can try to keep your child alive, but it will almost certainly be at the cost of further damage to his brain and other organs and immense suffering to him and your family, both immediately and throughout life.
What would you like us to do, or not do?"
****
Sadly, that would have been a more complete and honest conversation.
Helen wrote:
We can try to keep your child alive, but it will almost certainly be at the cost of further damage to his brain and other organs and immense suffering to him and your family, both immediately and throughout life.
What would you like us to do, or not do?"
****
Sadly, that would have been a more complete and honest conversation.
To Helen and anonymous 10:28 -
I really don't think that what the Neo had to say in that inital conversation was helpful in the slightest, nor do I think there would have been much more to gain if the conversation had continued to unfold in the way that Helen has suggested that it should have. The reason being is that the Neo in question led with his opinion, not with the facts. His complete dismissal of the worth of my son's life in the first sentence of our conversation was SO offputting, that nothing else that he had to say could be given the weight and consideration that it deserved. Thankfully, this was a teaching hospital, and he was not the only source of information that I had. Over the next several days, I was able to get my hands on a wealth of information about possible outcomes and complications - none of it encouraging, but most of it helpful. Because of this, we made my son DNR, as well as made the choice to take each additional care step one decision at a time. As is obvious from my previous posts, my son survived - actually, from an NICU viewpoint, he thrived. Off the vent at 7 days, off oxygen at 21 days, and home at 8 weeks even - over a month before his due date. He never needed a shunt, never coded, never seized. There were no decisions to be made. Short of withdrawing the basics of care - namely nutrition and warmth, there would have been no way to end my son's life. I truly believe that if he had legally been able to, that particular Neo would have reccommended doing just that.
There has to be a balance, both in the NICU and in the outside world. Cold hard facts and scientific data are necessary, but they must be balanced with compassion and honest give and take communication. As others have also commented, the data doesn't tell the whole story.
To future of hope:
You say that "There were no decisions to be made. Short of withdrawing the basics of care - namely nutrition and warmth, there would have been no way to end my son's life."
Then where/how did the ventilator come in? What was your son's gestational age at birth? Were you given any chance to discuss his condition and your wishes before day 3? Were you given any prenatal counseling or choices about initial resuscitation?
If, from your perspective you see nothing that could have been done differently, and if you are comfortable with the process and outcome, then there is no problem here.
However, I see several things that could have been done differently here, if that had been your personal choice.
Helen Wrote:
Then where/how did the ventilator come in? What was your son's gestational age at birth? Were you given any chance to discuss his condition and your wishes before day 3? Were you given any prenatal counseling or choices about initial resuscitation?
My son was born at 26 weeks gestation, weighing in at a "hefty" 2 lbs 2 oz. He was the product of a textbook pregnancy, right up to the day of his birth. The only (in hindsight) symptom of labor that I had was a constant but mild lower backache. Around 3 in the afternoon I suddenly felt pelvic pressure, and was concerned enough to call my OB. He had me checked out just to humor me, but humor turned into grim reality very quickly when it was discovered that I was dialated to 10. A quick ultrasound revealed a breech baby, and an emergent C-Section was done. My son was born at a small regional hospital, with-out an NICU - with no neo in attendance. No one in the delivery room expected a viable infant - and then he cried..... The room exploded into action, he was intubated and transported to a level 3 NICU in a neighboring city. - Here I think was THE moment of decision in his life, and no, I was not given the option. If he had presented at birth blue and still, the decision would have been different, and there too I would not have been given the option. Is that how it should have worked? Maybe not, but we were a family in total and unexpected crisis and at that time, we were incapable of doing any more than we were doing.
As to discussing his condition and our wishes before day three - we were in separate hospitals, I had not even seen my son. I was kept up to date on his condition, which remained at critical but stable. I was given basic information on the development of 26 weekers, as well as possible complications, but nothing in depth. My education could have, and should have, been much more complete.
The IVH was discovered by routine ultrasound on day 3, several hours before I was discharged and able to go to the 2nd hospital. I understand your point that this was the 2nd crucial "decision point". I am not so sure that it was. He was already on the lowest vent settings possible, but he still needed the extra push - he was extubated 3 1/2 days later. Would he have died if we had removed the vent earlier, or would he have simply struggled? I don't know, and neither do you. The docs felt that it would be the latter. We DID make the hard decisions, we were ready to let him go - what we chose not to do was to FORCE him to go.
To future of hope:
I personally support decision making about resuscitation at delivery for babies at 26 weeks and below (and there are guidelines supporting this view).
However, at 26 weeks, I can't think of many neonatologists/obstetricians who currently allow non-resuscitation decisions. (This seems to be based more on doing what the other guys are doing, than on evidence concerning outcomes, but that is beside the point here.)
Having been in a similar situation myself (following a preterm birth at 29 weeks, with major accompanying/ensuing damage), I can understand how you were not in a position to know, or do, anything differently.
But the neonatologists probably were. They certainly were in our case, and still continued no-holds-barred treatment.
And that is the continuing reality: NICU treatment is going to proceed no matter what the parents want or say. I think this is wrong.
It is my hope that future families will come into these situations with more information and more latitude for decision-making than we did.
In them meantime, whatever was decided (actively or passively) by you or me or by the docs, we still have to live with the consequences and do the best we can for our children and our families.
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