Ethical Considerations of Extremely Low Birth Weight Babies
Premature birth is a worldwide crisis affecting over 15 million babies per year (http://www.who.int/mediacentre/factsheets/fs363/en/). The definition of a prematurity is a birth that takes place more than three weeks early (37-weeks gestation). Prematurity affects one in ten births (www.marchofdimes.com). The premature infant has not had enough time in the womb to develop and this causes short- and long-term complications (http://www.mayoclinic.org/diseases-conditions/premature-birth/basics/complications/con-20020050)
While there are no hard and fast guidelines to determine the viability of life of a premature child, common practice in neonatology normally uses 24-weeks gestation to determine whether an extremely low birth weight infant is offered resuscitation (Harker, personal communication, September 10, 2014). The thesis of this paper will explore the ethical problem faced by many in the field of prematurity: how early is too early to resuscitate a very low birth weight infant? Under what circumstances does a neonatologist resuscitate earlier than common practice and when does one accept natural law?
In the journal Pediatrics, “the birth of a newborn weighing <400 g can present a dilemma because these newborns are often considered nonviable irrespective of gestation” (Muraskas, Rau, Castillo, Gianopoulos, & Boyd, 2011). Additionally, “most neonatologists consider a gestational age of<25 weeks beyond the grey zone of viability and consider resuscitation obligatory on the ethical grounds of the ‘best interests’ of the newborn” (Muraskas, Rau, Castillo, Gianopoulos, & Boyd, 2011).
Complex decision-making and ethical considerations are explored on whether to resuscitate an extremely low birth weight premature infant. The topic of discussion primarily revolves around the quality of life such a micro-premature infant might lead when considering the vast number of potential disabilities likely at such an early gestation.
Dr. Lee Harker, a neonatologist at Asante-Rogue Valley Medical Center in Medford, Oregon, says that ideally she’ll meet with and discuss the outcomes of a very low birth weight, micro-premature infant with the family ahead of time and follow parents’ wishes. At 24-weeks gestation if there is no opportunity for pre-discussion ahead of time, she is obligated to provide resuscitation. Dr. Harker recommends having a plan in place in advance of making these hard, time sensitive ethical decisions (Harker, personal communication, September 10, 2014).
At this early gestation, one must consider the role ethical egoism plays in the decision making of the parent. Ethical egoism views “what is right is good for me” (Wall, 1995). However, there are other difficult ethical issues to be taken in to consideration.
First, our world has a finite amount of money to pour in to healthcare. Act utilitarianism says that each situation should be viewed differently and we must follow the principle of “the greatest good for the greatest number” (Wall, 1995). Theoretically nothing is too costly to save a child but the hard and cruel reality is that our world has finite dollars. At some point the cost in saving a 24-week very low birth weight micro-premature infant whose quality of life may be significantly diminished must be seen through an economic lens (Harker, personal communication, September 10th, 2014). If we are to apply Bentham’s consequentialist theory to the case of a very low birth weight infant at <400 grams and 24-weeks gestation, he would say one should not resuscitate as we have a social responsibility to do what is best for the greatest number of people. By resuscitating an infant <400 grams that is developmentally less than 24-weeks gestation, the costs associated to the medical care and risk(s) of severe disability outweigh that of allowing for a natural death to occur (Wall, 1995).
A second ethical issue one might explore is the quality of life a very low birth weight micro-premature infant might have if they survive. I posed a theoretical case of two babies to Dr. Harker for ethical analysis. Baby A is 24-weeks gestation and about to be born to a teenaged mother who didn’t know she was pregnant and noticeably addicted to illegal drugs. Baby B, also 24-weeks gestation, is the first pregnancy of a young, professional, happily married couple that is eagerly expecting their first child. The ethical situation presented is: does the quality of life of this child impact a Neonatologist’s decision to resuscitate?
According to Dr. Harker, the circumstances of one’s family does not influence whether a Neonatologist recommends moving forward with resuscitation. It significantly impacts how the parent works with NICU personnel and it may determine whether the infant is released to the parent after the NICU stay but it does not drive the decision to resuscitate. The system does not legitimately take familial circumstances in to account in deciding to resuscitate (Harker, personal communication, September 10th, 2014).
Immanuel Kant, a famous German philosopher, would recognize Dr. Harker’s heartfelt recognition of the value of life at 24-weeks gestation as “acting from duty” (Wall, 1995). Kant states that one who acts with good will both follows acceptable moral rules and does the right thing for the right reason (Wall, 1995). Medical research and evidence based care identify good pathways for proceeding with complicated ethical situations, according to Dr. Harker. The shared goal between NICU personnel and the parent of a very low birth weight baby is the best outcome for the baby, however, communicating to a parent in the midst of a sense they’ve lost all control is extraordinarily challenging. There is no such thing as truly informed consent as it’s biased on the part of the presenter (normally a neonatologist) and the parents have to have some amount of trust that the medical team will act in the best interest of their baby (Harker, personal communication, September 10th, 2014). Kant would argue that the best approach from an ethical position would be to follow acceptable guidelines based on medical research that states <400 grams and less than 24-weeks should not be resuscitated. The right reason for this ethical decision is based upon what medical personnel and researchers currently know about gestational development and the extremely high risk of severe developmental disabilities.
In closing, the ethical issues presented on extremely low birth weight infants will continue to be considered indefinitely. The world’s most premature infant, born at 21 weeks, 5 days gestation was born 1-lb and 11-inches long though such miracle births are extremely rare (http://www.dailymail.co.uk/health/article-1380282/Earliest-surviving-premature-baby-goes-home-parents.html). Freida met the 400 gram weight though significantly less than the gestational development of 24-weeks. While it is possible to survive with aggressive resuscitation, the question remains: do we and for what reasons? There are always exceptions like Frieda that make the medical field want to extend the resources to save a child but such an outcome is very rare (Harker, personal communication, September 10th, 2014).
Premature birth remains a major health crisis that affects one in ten births worldwide. Of these premature births, only half have known etiology. The other half may be a known etiology such as pre-eclampsia or a shortened cervix but medicine struggles to identify patients in advance of the premature birth crisis. This translates in to the fact that prematurity can strike when a mother least expects it and regardless of one’s economic or familial circumstances. There is no prevention for prematurity (yet). The medical community must identify in advance of the crisis of premature birth what actions ought to be taken and within what guidelines. Currently, the guidelines are 24-weeks gestation and 400 grams. And it could change if a medical discovery is made that will allow for an earlier or smaller delivery. For now, ethics in science agree on 24-weeks and 400 grams.
Muraskas, J. K., Rau, B. J., Castillo, P. R., Gianopoulos, J., & Boyd, L. A. (2011). Long-
term Follow-up of 2 Newborns With a Combined Birth Weight of 540 Grams. Pediatrics, 129(1), E174-E178. Retrieved September 10, 2014.
Wall, T. F. (n.d.). Thinking Critically About Moral Problems. In Ethics (pp. 9-55).
Wadsworth Cengage Learning.