.jpg){kind=small}
How Outcomes Influence Ethics
“I was present at one of the last family meetings where the pediatric surgeons explained that even with his medically complex diagnoses, he could still survive to get a liver transplant. They shared pictures of a couple of patients that looked as bad as this child that had had liver transplants and done well. I realized that I was looking through the eyes of a NICU nurse and what I saw was extreme in our NICU population, but not necessarily in an older child with similar problems.”
“It is also much harder for the bedside RN and RT to understand continuing care for an infant in that situation knowing that their parents have not been given a realistic picture of what outcomes are.”
“I believe that the neonatology data base is large enough to begin development of a guideline/protocol that would allow all physicians to provide parents with a realistic picture of what the developmental expectations will be for their child especially in those instances where the likelihood of profound developmental delays is most likely.”
The above quotes speak to the importance of data in relation to biomedical ethics. As my mentor at Yale always said, "Good ethics needs good data." What does that mean, however? We will delve into the meaning now.
One of the most beautiful things about neonatal patients is their ability to adapt to the challenges presented to them and continue forward for the rest of their lives. This ability to continue forward is often in the face of either overwhelming odds of death or an already confirmed disability. This ability to adapt and overcome also makes prenatal counseling and postnatal prognostication extraordinarily hard. We'll discuss the importance of good data in prenatal counseling for periviable infants, but the concepts apply to any patient category.
We'll start this discussion by noting that most infants born above 26 weeks' gestation do well. Infants born at 25 weeks' gestation also do well, well enough for neonatologists to consider resuscitation so overwhelmingly in the infant's best interests that it is an obligatory action. Contrast this to permissible resuscitation decisions made for infants born at 22-24 weeks' gestation, and there is a difference. The difference between the two actions (permissible to resuscitate versus obligatory to resuscitate) lies in the data.
Before we even tackle the data regarding neonates at 22-24 weeks' gestation, it is prudent to discuss how confident we are in estimating the gestational age. Notably, any data presented to the family for life or death decisions must be as accurate as possible, and those counseling must acknowledge any deficits in the accuracy. For example, an infant estimated to be 23 weeks' gestation based on mom's LMP can be anywhere from 21-25 weeks' gestation. The range of error for estimating gestational age by LMP is up to two weeks; the same holds for estimation by a second-trimester US. Estimation by a very early ultrasound can be off by a few days, thus more accurate. The only way to truly well the exact gestational age is if the fetus is the product of in vitro fertilization.
Why spend so much time belaboring this point? It speaks to the importance of data in making decisions. Imagine a scenario where a family with a fetus at 22 weeks' gestation is admitted for pre-term labor. Now, as you might imagine, counseling might be different based on how OB obtained the gestational age estimate. The difference may not be huge, but it is present. Suspect data also come from postnatal assessments of gestational age, given most fetuses mature at different rates.
With all of the potential errors listed above, one may consider gestational age to be the worst predictor of survival. In reality, it is the primary factor, certainly not the only, however, in determining viability. To combine gestational age estimates with other essential data, researchers created the National Institute of Child Health and Human Development (NICHD) neurodevelopmental outcome calculator. Those providing counseling use this calculator to help inform resuscitation decisions but not without risk. Notably, a resuscitation decision should not be made based solely on the calculator results.
If you plug the required data into the calculator, you will generate a report table based on several factors. I've added one such table below for a male infant born at 23 weeks' completed gestation without steroids with a birth weight of 600 grams as a singleton. Please review the table for a moment before we continue. Ok, provided you've reviewed the table, one striking difference should become apparent, the difference between the percent survival of infants who are actively treated and those who are not. Notably, the statistic reflecting survival with active treatment does not include infants' deaths for whom healthcare providers did not provide resuscitation. A link to the calculator is also provided. Fell free to plug in some numbers and experiment.
Why is this important? Well, in counseling, if you tell a parent that only 17% of patients with similar characteristics survived, you'd be giving them the wrong data! You are confirming a potential bias you may have against resuscitation at this gestational age by underestimating survival. Such an approach does not equal good counseling, given the counseling was not based on good data. For any situation, data used to inform decisions must be accurate to the situation with the appropriate denominator. Let's look a little closer at this table.
You may notice that the table also presents survival rates in hospital ranges. This observation leads us to the next consideration, local versus national data. For many years, the University of Iowa has had exceptional rates of survival for periviable infants. To suggest that a center that rarely resuscitates infants born at 23 weeks' will have similar results is erroneous. Thus, the data that matter most are local, applicable to the institution.
Another critical point to note is the change in data over time. For example, the survival for periviable infants has steadily increased since neonatology's inception, therefore citing data from 10 years ago is not as relevant as data from last year. Regrettably, the most up-to-date information may not be accessible, but health care providers must make a good faith effort to obtain it and counsel based on it. When data are older than desired, healthcare providers must share this with the family.
Essential points to consider regarding data are how it changes as the patient ages. For example, outcomes for periviable infants are associated with higher developmental impairment rates when examined at 18-26 months of age compared to when those children age. This fact means we often overestimate the degree of developmental impairment early on in a child's life. Again, this runs the risk of communicating inaccurate data, but it is the best information we sometimes have.
For any case where parents must make a decision, the healthcare provider must consider their data's strengths and weaknesses before counseling. Such considerations are vital when decisions to withdraw or forgo life-sustaining measures are at hand. In cases where there is no explicit needed action, especially if the data has significant weaknesses, the parents must have the latitude to decide what they believe is the next best course of action.
What then do we say to those who say, "Well, we need more data to help us decide!" We agree, but we have to take a step back. One problem with neonatology is that, overall, our numbers are low. For example, there are only so many babies with the rare problems many of our babies have. Given this fact, data are lacking for how many of our babies will "do" as a result of their afflictions. Ideally, with the advent of data systems and so-called "Big Data," more data will be available for counseling purposes in the future.
Please see below for a video discussing the importance of considering the best available data for resuscitation decisions and not providing counseling based on personal biases.
References:
©2021 NICUbiomedicalethics.com
Rectors and Visitors of the University of Virginia
Comentários