Lazy

This morning I came to work to find one of our tiny babies struggling to breathe. She had extubated herself last evening and the neonatologist on call - in the hospital - had left her off the ventilator to see if she would do okay on her own, which was a very reasonable decision given the baby's condition. Unfortunately, he (the neonatologist) didn't follow up with her. He did not order a blood gas (a blood test to see the amount of carbon dioxide, oxygen, and acid in the blood), and even cancelled a previously scheduled blood gas for the morning. To make matters worse, the nurse called him at 6 a.m. reporting the baby's increased work of breathing, and he didn't get out of bed to come check her. Badly done, sir, badly done. I checked a blood gas when I arrived, only to find her carbon dioxide level sky high, so I put here back on the ventilator, and she's doing fine now. ( I don't write this to make me sound like a hero; it was pretty routine stuff I did.)

The neonatologist on call was a moonlighter at our hospital who normally works elsewhere. He's a smart guy, board certified, knows his stuff. He certainly is bright enough that he could have properly taken care of the baby - if he had been there. But it really frosted me that he let the baby get like that.

Doctors can screw up in different ways. They can be very busy and overlook something; they can be faced with a difficult decision and make the wrong judgement, while trying their best; and they can be lazy. I think many people can understand mistakes of the first kinds, although they don't want them to happen with their own baby, but this lazy thing is hard to take. There is no excuse for this doctor not coming to check the baby when notified of the harder breathing. We weren't so busy that he was exhausted and couldn't make it out of bed. He simply was lazy.

Don't get me wrong. I'm no saint and, like other doctors, have made my share of mistakes. But someone once said that 90% of life is simply showing up, or something like that, and we should at least be able to do that.

Money

It’s not news to anyone that physicians in the U.S. make good money. Even the lowest paid specialties are at the upper end of the pay spectrum. But should doctors make a lot of money? Most of my colleagues would say yes, but I’m sure there is a fair amount of resentment of our salaries, especially if one is not well off financially and must pay some hefty doctors’ bills. That person wouldn’t look kindly on the physician speeding by in their Lexus or Cadillac.

On the one hand, doctors can make a good case for their high salaries. It takes a lot of education and training to become a physician, and our jobs carry a pretty big responsibility. If anyone is going to make a big salary, shouldn’t it be the people who deal with health and, sometimes, true life and death issues? Besides, certain attorneys, business people, and entertainers make a lot of money, and it’s hard to say they deserve it more than we. And don’t even get me started about professional athletes.

But still….in almost all instances where a patient has to pay a bill, it is a relatively poorer person giving money to a relatively richer person. Usually I’m insulated from the money collecting aspect, letting the hospital do that while I receive a salary, but not always. I got a letter once from the mother of a baby we took care of in the NICU. Her baby was doing fine, but she asked if we would forgo the last $600 of her bill. Her blue collar family had struggled to pay most of the bill but now were stuck. My heart almost bled when I read that. Here I was, able to buy almost any clothes I want, or able to dine out at a nice restaurant whenever I want without having to hardly think about the cost, taking money from this family.

Sometimes at work we have quiet days, where I have time to sit in my office and read or relax, and it seems almost criminal to be getting money for this. But other times are different. When you’re standing at the bedside of a baby with dangerously low oxygen saturations (low levels of oxygen in their blood), and you’ve done everything you can think of to raise them, and the parents are sitting there looking at you waiting for you to make their baby better – then we’re deserving every penny we get.

Futility

In a recent post entitled "Inappropriate", I discussed a baby with holoprosencephaly and opined that it would be the best thing for him to die in his sleep, without a home monitor to help prevent that. Several people who left comments mentioned the issue of quality of life, implying that quality of life is a factor in deciding whether to withdraw or withhold life support for an impaired child.

It is my understanding of the laws in the U.S., though, that we are not allowed to use poor quality of life as a reason for withholding or withdrawing care. We cannot discriminate against people with impairments; withholding life support would constitute discrimination.

We are allowed to stop support, however, when continued treatment is futile or prolongs suffering. And there is the rub: how do we determine futility? And do we sometimes say we are stopping support because of futility when we are really stopping it because of quality of life issues?

For example, we are not allowed to withhold life saving treatment from a child with Down's syndrome, a chromosomal defect that causes mental retardation and other birth defects. However, we are allowed to - and usually do - withhold treatment from children with Trisomy 13 or 18, which are also chromosomal defects that cause mental retardation - a much more severe retardation than that of Down's syndrome kids - as well as other birth defects.

Eighty or ninety per cent of babies with Trisomy 13 or 18 die by age one year. They often die because they simply stop breathing; the respiratory center of their brain, responsible for regulating their breathing, doesn't work properly. They can also die because of other birth defects, such as serious heart problems. If a normal child were to stop breathing, we would begin support with a ventilator. This is not usually offered Trisomy 13 or 18 patients. We say we don't offer it because it would be futile; the baby would eventually die from another problem caused by the Trisomy. But the truth is, many of the Trisomy 13 and 18 children if put on a ventilator, if their heart defect were repaired, and a feeding tube placed, and anti-reflux surgery done, could possibly live for years. It would not, in my opinion, be a life of high quality (and I am not advocating it be done.) Most of these patients cannot even smile, let alone walk or talk or indicate their desires, but they would be alive. So when we withhold life support from them, are we really doing it because it would be futile, or because the quality of life would be so poor?

In reality, the distinction between futility and poor quality of life is not so clear.

Discrepancy

Consider two scenarios.

One, an eight year old boy and his family are counselled by a pediatric oncologist about treatment for his lymphoma. She gives the child a 50% to 60% chance of survival with the best treatment, a combination of chemotherapy and radiation, with the child having about a 50% chance of serious brain damage from the treatment. The parents decline the treatment and opt to give the child comfort care at home.

Two, a woman pregnant at 24 weeks gestation and in preterm labor and her husband are counselled by a neonatologist about the baby's chances of survival if she delivers at this gestation. The baby has a 50% to 60% chance of survival if resuscitated fully at birth and put on life support, with about a 5o% chance of serious brain damage if he survives. The parents decline to have the baby resuscitated and opt for comfort care only.

The above vignettes are fictional, although the numbers for the 24 week pregnancy are accurate, and I and many other neonatologists have had a similar discussion with parents many times. I wonder, though, what the response in each case was to the parents' refusal of aggressive treatment. I suspect that for the 8 year old, there would be many who think it appropriate to call the child protective services agency or the courts to force the child to have treatment. For the baby, though, it is well accepted that parents can decline treatment and let the baby die. (There is an article in the January Pediatrics that describes one hospital's guidelines about resuscitating babies that shows the majority of caregivers would accept the parents' decision to forego resuscitation. I think their experience is similar to most NICU's around the country.) I have never heard of anyone trying to get the courts to force resuscitation of a just born extremely premature baby.

Yet what is the difference between the two patients, the eight year old with lymphoma and the few minutes old premature baby? Both are alive, separate from the mother. What is it about the very beginning of life that allows us to let the baby die when we might insist on treatment for the 8 year old? Is it because over 8 years we have had time to become attached to the child, to see him develop a personality?

Or is there no difference? If we insist on treatment for the one, should we do the same for the other? Is it age discrimination if we allow the baby to die and not the 8 year old?

This is not merely a hypothetical situation. Every day decisions are made whether to resuscitate babies of 23 to 24 weeks gestation, at the so called "border of viability." Personally I have a little trouble denying care to them when we would not allow that to happen if the child were older. (And, in fact, most parents at 24 weeks gestation do opt to have their baby receive full support.) But there is a discrepancy, and I can't quite figure it out.

Recriminations

I hate it when a baby dies. I hate it for all the usual reasons: because no one likes to see a cute, innocent baby die, because you know it's not just the loss of a human but also the loss of the parents' hopes and dreams, of a father's dream of teaching a child how to pitch a baseball, of a mother's dream of putting ribbons in her hair and taking her shopping for a prom dress. I hate it because the parents are crying, and the nurses are sad. I hate it because you wonder whether you were inadequate as a physician.

There are more mundane reasons for not liking it too. There's the frustration of filling out a death certificate, knowing that you'll be called by the funeral home in a day or two to complete another one because our hospital always loses the original one. There's the awkwardness of asking the parents about the body's "disposition." Do they know what funeral home they would like to use? Do they have money for a funeral? Would they like an autopsy? Do they know what an autopsy is?

But the thing I hate the most are the recriminations. It's not so bad when a very premature baby dies shortly after birth because he was simply born too early. Not to sound callous, but those are just a fact of life. We have limits as to how early we can save a baby and all the staff understand that. But when a baby lives for several weeks or months and then dies, there are always some accusations that quietly make their way around the unit. The baby should have been on antibiotics. The baby should have been transferred earlier, later, or not at all. The nurse shouldn't have done this or that. The normal comradery and team feeling of the unit are temporarily damaged.

It is, I guess, a natural reaction. People have become attached to the baby and express their frustration. And fortunately the recriminations don't last long before the unit gets back to the job of thinking about, and caring for, the living.

Convincing

It happened again this morning. I was speaking to the mother of a baby we were transferring to the NICU, and she spoke to me as if it were my fault the baby needed to go there. This has happened many times before. Almost all parents are worried when their baby has to go to the NICU. Some, however, remain kind and grateful for your work. Others get angry, and take the anger out on you, and it’s a little hard to take sometimes.

I know I’m being petty. I know the parents are just upset and aren’t really mad at me (usually.) I know if my own baby were sick I might not be on my best behavior either. I also know that since many of my patients are African –American and I’m not, they have good reasons historically to be a bit mistrustful.

But I, like most physicians, just want what is best for the patient. Why wouldn’t I? I like babies and kids and otherwise would not have gone into pediatrics and neonatology. It gets a little wearying to have to talk the parents into letting you do what’s right for the baby. Sometimes I just want to say to them, “Look, it’s not my fault your baby is sick.” (I actually did say that once. Trust me, it wasn’t helpful.) So I just try to do my best to be patient and put myself into the parent’s shoes. Usually the parents come around and are fine later on.

It would be nice, though, if they were that way from the beginning.

Inappropiate II

If you haven't already read the comments from Dream Mom to my February 14 post entitled "Inappropriate," please do so. She is the mother of a special needs child who writes eloquently and poignantly of her difficulty in agreeing to a "DNR" (do not resuscitate) order for her child, even though she knows it might be the best thing for him.

To me, this points out a real problem in our country with these situations, which is, we expect or need the parents to say it's okay not to resuscitate their child. In other words, the parent has to say, in effect, let my child die, which is a huge thing to ask of them.

This becomes even more problematic when it is time to disconnect life support from a child for whom continued treatment is futile and/or for whom continued treatment prolongs suffering. Legally, we need the parents to give permission to do this. Emotionally, it is a huge burden for them. They must say yes, it's okay to stop the ventilator; to themselves, it might seem like they are saying, yes, it's okay to kill my child.

There must be a better way, although I cannot think of one that is foolproof. One alternative would be to have the physician, or a team of physicians, decide when to stop life support. However, although most of the doctors I know would make appropriate decisions, there are some out there who consider it their duty , or preference, to not let babies survive who will have any sort of significant handicap. Perhaps an ethics committee could take part in the decision, but again, there is no guarantee the participants would make reasonable decisions.

So we are stuck with this burden for the parents. Even when it is obvious that it is the right thing to do, it must be one of the most difficult things in life to do. When I am in this situation, I try to make it as easy as possible for the parents to acquiesce, to not force them to make a statement, "Yes, stop the ventilator for my child", but rather to say it for them and have them only nod or murmur assent. I don't know if that helps or not; I hope I never have to find out as a parent myself.

P.S. Please welcome Dream Mom to the blogosphere.

Inappropriate

Recently we sent home a baby who had holoprosencephaly. At first we thought he might just have a cleft lip and palate, but his eyes were a little too close and his head a little too small, and unfortunately a head ultrasound showed the holoprosencephaly. I say unfortunately because holoprosencephaly is a devastating defect of the brain, where the brain never divides into two hemispheres but remains a poorly functioning rudimentary brain. Children with it are severely impaired.

I discussed this finding with the mother and her father, the baby's grandfather, who are very nice people. Although I tried to be gentle, I was pretty explicit with them, using phrases like "he won't walk or talk." They took it about as well as you would expect a family to take it.

A few days ago I saw a pediatrician who had seen the baby as an outpatient. The child, not surprisingly, was having multiple problems, including seizures, dehydration, and an inability to keep his temperature up. But the part that bothered me was that some physician had put this baby on a cardiorespiratory monitor at home, for the purpose of preventing a death when the baby was unattended. This act, to me, was simply an abdication of responsibility. The best thing that could happen to this baby would be to pass away peacefully in his sleep. To provide a monitor not only prevents that (maybe), but also give the parents false hope. The pediatrician told me the parents were being very unrealistic and thought this baby was going to be fine. The response to that should be to keep talking truthfully but empathetically to them, not to buy into their unrealistic hopes.

Don't get me wrong. I'm not someone who thinks all impaired children should be killed or that we need to obtain an eugenic society. But prolonging a dismal life is no good either. Sometimes the best we can do for a patient is not so good, but merely the least bad thing. Whoever prescribed the monitor took the easy route in the short run, acquiescing to the parents' request instead of taking the time to tell them why a monitor was inappropriate.

Mistrust

There is a news article today about a baby born in a toilet at home. It may seem weird to a lay person, but actually toilet deliveries are not that uncommon. Apparently the urge to push to deliver a baby is not unlike the urge to push to have a bowel movement. You can figure out the rest yourself.

I'm just a little mistrustful, though, of women who don't make it to the hospital in time to deliver there. The same goes for women who do not get prenatal care. I hate to be judgmental, but the sad fact is that some of these women use illicit drugs or have had run-ins with the law or child protective service agencies. They may avoid prenatal care to avoid prosecution or to avoid having their baby removed from them by the protective services folks.

So I've developed a simple screening question of all moms with unintended home deliveries or no prenatal care. I ask them if their other children live with them. If they don't, there is something wrong, because in our society you usually have to mess up pretty bad to get your kids taken away.

Remarkably, the mothers are pretty truthful about the answer. Maybe it's because they've just given birth, and that induces truthfulness, or maybe they know that we'll figure it out some other way, but they usually admit it if their kids are not with them. And then we have to do the unpleasant duty of beginning the process to separate a mother from her child.

Fathers

I feel a little sorry for fathers in the delivery room, because let’s face it, they’re pretty useless there. At best, if they’ve been to a birthing class they can maybe count while their wife or girlfriend breathes or pushes, but any nurse could do that just as well, or perhaps they can give a small amount of emotional support to the mother. At worst, they can foul things up by fainting or needing to be led from the room because they can’t take it anymore. The fact that their wife or girlfriend is doing one of the most difficult human tasks in life – as the saying goes, there’s a reason they call it labor - can only emphasize their feeling of inadequacy. Mind you, I don’t blame the father for this. The delivery room is a new and scary situation for them, and that is compounded by the worry they have for their significant other and child.

Unfortunately, some genius many years ago came up with the idea of making the father feel useful by having them cut the umbilical cord. This has been the bane of neonatologists ever since. We’ll be called to a delivery because there is concern about the baby’s health, perhaps because of meconium stained fluid, maybe because the baby’s heart rate is low, only to have to wait to receive the baby while the father painstakingly cuts the cord. Give us a break, people! If you want us to be there for the baby, then give us the baby as soon as possible.

I’m not sure how cutting the cord is even symbolically important. Is it supposed to mean that now the baby is no longer dependent on the mother alone, but on both parents? If so, then why has the practice spread to include grandmothers, aunts, and other bystanders cutting the cord?

Dads, let the mother have all the attention and glory in the delivery room. They deserve it, and a puny thing like cutting the cord won’t begin to change that. Rest easy with the knowledge that there will be plenty for you to do, and plenty of rewards, in the years ahead. Stick around – too many fathers don’t – the real work of fatherhood is just beginning.

Potential

In a recent article about homeless people, a newspaper columnist said that at one time all of these homeless people were babies. He is, obviously, correct. I am often struck by the nearly unlimited potential of the babies and wonder how they will turn out as they are shaped by their environment. Will they be just like their parents? Will the baby of the drug addict become an addict too? Will the baby of the father who stole a tote bag with dvd’s and cash from another family – and who was caught on security TV monitors doing so - turn out to be a thief? Will the baby whose teen-aged mom used to do her homework while visiting in the NICU – wow, I wish I saw more of our parents doing that – and who told me of her plans for law school, turn out to be the one who breaks out of the cycle of low education, bad jobs, young single parenthood, and poverty? (I’m rooting for her to do that.)

I realize that every baby is not a blank slate, but is in fact already partly programmed by his or her genes. But how much can they change according to their upbringing? In adjacent incubators we have two babies who will be brought up worlds apart from each other. One is the baby of a heroin addict; the other is a baby of a teen-age Muslim mother who just arrived from the Middle East one week ago, the day before she delivered. The former may bounce from foster home to foster home, but will be able to strive for almost any choice she likes. The latter will be raised in a stable home with great family support – but will she be a free woman, or will she have to be quiet in the presence of doctors and let the men around her do all the talking? And which of those two has it better?

Far be it from me to judge. The answer, of course, varies with the person answering. I'm just glad I get to take care of them when they're closest to being a blank slate.

Biting

A mother of one of our babies bit one of the OB nurses yesterday. It broke skin and everything, a real hard bite. She was high on cocaine, heroin, and apparently some prescription mind altering drug at the time. Fortunately, her baby is doing well, as is the nurse. We're waiting for the baby's withdrawal signs to start. The mother was calmed down today, but I still kept a little distance between us when I talked to her about her baby.

I'm not sure what to think about drug-using mothers. A lot of people get mad at them, because of what they are doing to their babies, which is a natural first reaction. But it doesn't do any good to get mad at them. It's not like they're going to change their behavior because a health care professional chews them out. And it certainly doesn't help you gain rapport with them when you scold them.

Actually, many of the drug using mothers are quite nice, when they're not trying to bite someone, and I sort of enjoy talking to them. They are as varied as any other group of people. I often wonder what kind of upbringing they have had that made them get involved in such a sad and destructive lifestyle. My time with them is so fleeting that I can't really help them much, except perhaps to give them a few kind words that they seldom hear. So we refer their babies to the county protective services agency, and our social worker tries to get them into a treatment program.

And a year later they're back again and we start all over.

Television

It's everywhere.

I can't believe the ubiquity of television, even in a hospital. It's bad enough that it has to be on in the nurses' lounge so often - I can hear it when I'm trying to write at the nurses' station -but they don't turn it off when they leave the lounge. It's left on, to provide a constant background accompaniment or pacifier, or something. Parents of the babies can hear it, which contributes not at all to a professional atmosphere in what is supposed to be an intensive care unit. People must leave it on constantly in their homes, and be so used to it they do the same thing at work.

But the place it drives me craziest is in the delivery room. The TV's there just stay on and on, through labor, delivery, and recovery. You would think they might get turned off when it's time to push, but no, again they are accepted as such a constant, normal part of life that no one besides me seems to even realize that turning the TV off might be the appropriate thing to do. And it's often the seamiest shows, too. I don't know how many deliveries I've been to where shows like "Cheaters" and "Elimidate" helped usher a new life into the world. I"m not one who thinks every delivery has to be the most absolutely special event in the world, but it is a significant and emotional happening for most people. Do you really want Jerry Springer at your baby's delivery?

Explanation

The premature baby lay in the incubator, attached to a ventilator through a tube in her mouth, with catheters coming from her umbilicus and monitor leads from her chest. You would think anyone would recognize her as a sick baby, but her father, after visiting her for the first time, came to the nursing station and said cheerily, "So, is Baby Doe eating okay and everything?" We needed to have a serious discussion about his baby's condition. When I went to see the mother of the same baby, eighteen hours after birth, she too was unworried and said, "Is she gaining weight okay?"

When I went to medical school, I never realized how hard it would be to get some patients to understand things, not because I didn't try hard, not because the patients or parents didn't pay attention - although that's a whole issue by itself - but simply because the gap in our knowledge bases is so wide. It's tempting to sneer at the parents' ignorance, to denigrate them as idiots, but that's not fair - they have no way of knowing. Yet to bridge that huge gap is no easy thing. Doctors are often criticized for not explaining things well to their patients, but what makes anyone think it's possible to explain some very complex conditions to people with limited educations and understanding?

Bronchopulmonary dysplasia, for example, is a complicated chronic disease of many premature babies. For years I've tried to explain it well to parents, but often neither they nor I are satisfied with the explanation. But why do we expect it to be easy? I've had four years of college, four years of medical school, plus several years of training and practice beyond that, and I, like other neonatologists, don't completely understand bronchopulmonary dysplasia. There is no way these parents will understand it. So we simplify, but every time we simplify we lose a little reality; we repeat, but when we repeat, we see the attention ebbing.

Incarceration

The mother of the slightly premature baby was very nice and had seemed to have her life together, in spite of the fact that her other children were not in her custody. We were a bit surprised, then, when on the day of the baby's discharge two women we had never seen before walked to his bedside with clothes and a car seat for him.

"Excuse me", I said, "but who are you and how are you related to the baby?" It turned out they were the maternal grandmother and aunt of the baby.

" May I ask why you're here, and where the mom is?"

"She's in jail", the grandmother said quietly.

Unsure of what to say next - it's not often we have to reply to the statement that someone's in jail -I finally asked "What's she in jail for?"

The grandmother paused, and finally said, with a mixture of sheepishness and frustration, "Lots of things."

Clearly, a rapid consult with our social worker was needed, and fortunately after a bit of checking, we were able to send the baby home with grandmother. A fair number of our kids are raised by their grandmothers, because their moms are not up to the task, and I often wonder if that's a good thing. Many people seem reassured by the grandmothers' maturity and experience with babies. But aren't these grandmothers the same ones who raised the mother who is now deemed unable to care for her child? Do we have any assurance that she'll do a better job with this child?

Of course not. But it's a safe haven, and that, today, is the best we can get for many kids.