Ethical Issues in the NICU

Dr. Maurice Pickard

You're listening to ReachMDXM, the channel for medical professionals. Welcome to the Clinician's Roundtable. I'm Dr. Maurice Pickard, your host, and with me today is Dr. John Lantos, Professor of Pediatrics, Associate Director of the McLean Center for Clinical Medical Ethics at the University of Chicago, and the John B. Francis Chair in Bioethics, Center for Practical Bioethics in Kansas City. Thank you, Dr. Lantos, for joining us. Good to be here. Today, we're going to be discussing some of the ethical issues that arise and perplex us all in the NICU, the Neo-Intensive Care Unit for Newborns. Dr. Lantos, could you tell me what are some of the most difficult problems you face on a regular basis?

Dr. John Lantos

Well, first of all, I am not a neonatologist, so I myself don't face them. But doctors who do work in the NICU face a common set of dilemmas that all focus on one simple problem, and that's uncertainty about the long-term prognosis. Let me give you a concrete example. The most common problem today that reflects this in neonatal intensive care units is deciding whether to treat babies who are born at the borderline of viability. Today, that would be somewhere between 22 and 25 weeks of gestation or babies who are born roughly after about six months of pregnancy rather than the normal nine months. Those babies weigh about a pound. If their lives are going to be saved, they require immediate intensive care treatment in the neonatal intensive care unit. That treatment will generally last about three months and will generally cost anywhere from $200,000 to $500,000.

Dr. John Lantos

And the long-term prognosis for babies who are treated like this is radically uncertain. Some babies survive without any long-term health or neurologic problems. Some babies die, and some babies are left with severe health problems as well as neurologic deficits. And it's impossible to say at the time when the decision must be made which group any particular baby is going to fall into. And that's the dilemma.

Dr. Maurice Pickard

If we exclude the children who are admitted to a NICU who have congenital abnormalities, which is an entirely different set of problems, we can divide children into those that will survive and those that will not survive immediately. What percentage of the children who are admitted because of low birth weight will immediately expire?

Dr. John Lantos

Well, it varies with each birth weight and gestational age, but in this controversial gray zone between 22 and 25 weeks gestation, the survival rates are roughly 5 to 10 percent at 22 weeks, and they go up to about 80 percent at 25 weeks with a pretty linear increase between those two, so maybe 25% at 23 weeks, 50% at 24 weeks.

Dr. Maurice Pickard

The longer the child is in the NICU, though, do you have a better idea or able to predict whether that child will survive to leave the hospital?

Dr. John Lantos

Yeah, that's a great question, and we've done a lot of work on that here at the University of Chicago, me and my friend and colleague Bill Meadow. Many neonatologists believe that that children declare themselves. That is, you initiate treatment, and after a day or two or three, you have a much better idea what the long-term prognosis is going to be. It turns out from our studies that you have a little better idea how the children are going to do, but certainly not enough to make the decision straightforward.

Dr. Maurice Pickard

So what does a doctor do when he talks with parents in this age group?

Dr. John Lantos

doctors take different approaches. Most official statements by, say, the American Academy of Pediatrics or the Canadian Pediatric Society or comparable groups in England or Australia suggest a process of shared decision-making and informed consent. In an ideal world, what that would look like would be the doctor sitting down with the parents. and explaining the uncertainties, as I just did, and the range of possible outcomes, and then helping the parents to come up with a decision that they think is best. In the real world, there's often not the time for that sort of decision-making, since many children who are born prematurely are born in circumstances that were impossible to predict prior to the actual birth. So in fact, what happens most of the time is that individual doctors or

Dr. Maurice Pickard

neonatal

Dr. John Lantos

intensive care units as a whole have informal policies. For example, they say, we don't treat babies at 23 weeks or less. We treat all babies at 25 weeks, and at 24, we initiate treatment and then have a discussion with the parents. Most parents, interestingly, choose treatment, and many studies have shown that they are much more likely to accept the possibility of their baby surviving with disabilities than the doctors are to recommend treatment in situations where such survival is likely.

Dr. Maurice Pickard

If you're just joining us, you're listening to Reach MDXM, the channel for medical professionals. I'm your host, Dr. Maurice Pickard, and with me today is Dr. John Lantos, and we've been discussing the ethical issues involved in the NICU with extremely low birth weight children. Of the children that begin to survive, that is, go past the third and fourth day in the NICU, What does the doctor tell the family about the likelihood of not having a normal child at the end of one year? And what are the statistics in this area?

Dr. John Lantos

Well, doctors all have different approaches, so that's a really hard one to generalize about. But I think most doctors try as hard as they can to convey the full range of uncertainty that is associated with continued treatment. There are Some clinical conditions that suggest a higher likelihood of disability, that is one of the more common problems that premature babies suffer from, is something called intracranial hemorrhage or intraventricular hemorrhage, that is bleeding into their brains. Babies who have a brain bleed overall have a worse prognosis for neurological or cognitive outcome, and I think most doctors would try to help the parents understand, you know, if their babies had a bleed, that things don't look as good as they would have otherwise. Babies who have a bad infection or sepsis or meningitis also have a worse prognosis. But other than that, there aren't really very good indicators that help doctors determine which babies are likely to survive and do well compared to which babies are likely to survive and do badly or die.

Dr. Maurice Pickard

In my experience with patients in an ICU, that is an adult practice, the longer the patient's in ICU, the less likely it seems that he's to survive. It sounds to me like the longer the patient is in a NICU, the more likely he is to survive. Does this have implication as far as the spirit of the staff? I know dealing with adult patients, often the nurses wonder why this patient who's 90 years old in dementia is still in ICU. the spirit might be entirely different in a NICU where the likelihood of the child going home the longer he stays is better.

Dr. John Lantos

Now, that's a great point. And it is a whole different epidemiology in the NICU than in the adult

Dr. Maurice Pickard

unit.

Dr. John Lantos

Babies who are admitted to the NICU with problems associated with prematurity generally get better if they survive longer. So the babies who are going to die tend to die quickly. And with each passing day, chances for a good outcome increase. Just the opposite is true, as you say, in the adult unit. So in a sense, what that does is sort of compress the window of opportunity for decision-making. A decision to stop treatment in the NICU generally has to take place if it's going to take place at all within the first couple of days. I think that's just the opposite in adult units.

Dr. Maurice Pickard

Do you think this should influence public policy in that the dollars that are spent in a NICU seem to be well spent in that the longer the patient stays and the more days that are involved, the more likely you are to get a baby going home? As opposed to the dollars spent in an adult ICU, the longer the patient stays, the more money that's spent, the less likely you're going to get a patient going home.

Dr. John Lantos

Well, there's certainly a public policy paradox here in the sense that NICUs have been subjected to much more rigorous cost-effectiveness analysis than have the adult units. What the cost-effectiveness analysis generally shows is that NICUs, as you point out, are much more cost-effective. On average, NICUs' cost-effectiveness ratios come to something like $3,000 or $4,000 a per quality adjusted life year compared to something like renal dialysis or bypass surgery, which is between $50,000 and $100,000 per quality adjusted life year. So yeah, if we were going to make a policy decision to spend our health care dollars where we get the most bang for the buck, we'd shut down all the adult units and build more NICUs.

Dr. Maurice Pickard

You know, a word that's almost disappearing from the medical literature, which was so popular, was futility of care. Would you care to comment on why we no longer talk about futility of care, both in the NICU and in the ICU?

Dr. John Lantos

Well, I'm not sure that's true. I think a lot of people talk about futility, and I think there are situations where treatment is either futile or nearly futile. I think the public policy or bioethics debate about futility had to do with whether doctors could unilaterally decide to stop treatment. overriding the stated wishes of either competent patients or their families. That is, could we say, we've determined this to be futile. We don't care what you want. I think in most states, Texas being an exception, the courts were not willing to give doctors that authority. And so the attempt to claim unilateral decision-making authority in futility situations is what's really dropped out of the literature.

Dr. Maurice Pickard

People talk about a drug or a treatment having an effect, but they don't often say, yes, it has an effect, but may have no benefit. I get the feeling, and I would like to hear what you say, that people haven't worked long enough on resolution pathways as to talking to the patient. Instead of using words like futility, which is a one-word answer for a much more complex thing. People, doctors, and patients should be spending more time in a more extended discourse so that the risks and benefits can be intelligently interpreted by the patients.

Dr. John Lantos

I couldn't agree with you more. And in fact, I think that has been the outcome of the futility debate and the fact that doctors were not legally empowered to... make these decisions unilaterally. It's forced exactly those sorts of conversations, which I think is a good thing.

Dr. Maurice Pickard

I want to thank Dr. John Lantos, who's been our guest, and we've been discussing ethical issues in the NICU. I'm Dr. Maurice Pickard, and you've been listening to the Clinician's Roundtable on ReachMDXM, the channel for medical professionals. For comments and questions, send your emails to xm at reachmd.com. Thank you for listening.