1. RUNNINGHEAD: ETHICAL ISSUES FOR PRETERM INFANTS
Survival and Ethical Issues associated with Preterm Infants
Susan DeRosa
Dr. P Carando
PSY 500 H1
December 16, 2014

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Susan DeRosa | PSY500H1 BAY PATH UNIVERSITY
The National Center for Health Statistics reports that US infant mortality rates declined
12% between 2005 and 2011, specifically related to four of the five leading causes of infant
death: birth defects, preterm birth and low birth weight, SIDS, and maternal complications.
Furthermore, within the past 6 decades, the age of viability has been reduced by each decade by
one week since the 1960’s. Babies born between 34 and 36 weeks of pregnancy have a death rate
3x as high as babies born at full term (NCHS, 2011) mortality rates of babies born at 37 weeks of
pregnancy vs. 40 weeks is more than double. (Kluger, 2014). The good news is that babies
admitted for intensive neonatal care have increased survival at gestational ages 24 and 25; with
even further increases in infants where Neonatal Intensive Care Units have established
guidelines. (Berger, 2011). The improvements in survival are clearly defined throughout the
literature; but not as clearly defined is the actual improvement in quality of life, particularly for
those who are born preterm or very preterm.
Although infant mortality rates are improving, preterm babies will have some type of
neuromotor abnormality between 17-48% of the time (Moore, 2012). Improved outcomes on the
survival of preterm babies who reach a gestational age of 25 weeks or greater is not disputed; but
the pattern of major neonatal morbidity and the proportion of survivors effects for those less than
25 weeks of gestational age remain unchanged (Costeloe, 2012). Literature now suggests that a
multi-disciplinary approach to treatment choices, which include the family and multiple
caregivers, when combined with advanced interventions in critical care, offer the best short and
long term outcomes for preterm infants.
Treatment decisions are far from standardized across the globe. There are difficult ethical
and moral issues when determining whether to offer life sustaining measures, or limit treatment

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Susan DeRosa | PSY500H1 BAY PATH UNIVERSITY
to palliative care. The prevention of pain and suffering is supported by every member of the
family and healthcare staff; but it may not be enough. Information on the viability and survival
of very preterm infants and the recommendations or incorporation of advance directives is a
difficult but important discussion to have with family members and should be presented in a
multi-disciplinary approach by healthcare personnel.
Preterm infants with a gestational age of 25 are typically given neonatal intensive care
measures unless unfavorable prognosis has been determined. Infants at the edge of viability (22-
24 weeks) are more likely diagnosed with congenital anomalies and are significantly more
physiologically unstable and have the highest rate of mortality (Weiner 2014). The decision to
select intensive care intervention, or start palliative care in this population is extremely difficult
and complex. These decisions raise ethical issues that deserve serious considerations because of
their far-reaching consequences of persisting neurodevelopmental problems (Xiong 2012).
When counselling pregnant women and their partners, neonatologists, obstetricians,
midwives, and other healthcare professionals (some have utilized spiritual/religious advisors as
well) should provide the family with comprehensive information in a sensitive and supportive
way to build a basis of trust. Physicians, Nurses, and other professionals involved in the birthing
process should reflect and support the decision that is in the best interest of the infant and the
family; but this is easier said than done. It is very difficult to determine whether the intensive
care intervention is justified in very preterm births with a limited chance of survival. There is no
easy answer to this medical circumstance. Making a decision on death at such an early stage of
life is tragic. Literature is replete with epidemiologic data suggesting the parental income, and
education levels are predictors of long term success or failure for these infants; however, those
statistics are changing.

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Susan DeRosa | PSY500H1 BAY PATH UNIVERSITY
As a human race, we understand loss, and the need to focus on the rights of the
individual, but there is no standardized guideline on the medical management of very preterm
infants. In Switzerland, a revision of guidelines on perinatal care recommends that preterm
infants born at 22 weeks or less be given palliative care only, believing the burden of obstetric
intervention and neonatal care is not justified given the limited chance of survival (Berger,
2011).
In France, the guidelines recommend infants below 24 weeks should receive palliative
care in order to prevent pain and suffering. This is the only option offered at the present time. For
infants above 26 weeks or later, it is recommended offering life saving measures such as CPR
and full neonatal intensive care (Moriette, 2010) .
To add further ethical considerations to this topic, even beyond the guidelines of viability
established by gestational age; there is another troubling variable: medical staff perception of
viability. Healthcare professionals often use their personal experience to assess the viability of a
preterm infant and choose treatment methods based on their own perception. Less than 4% of
Neonatologists chose to fully resuscitate infants who weighed 500g and were 23 weeks in
gestational age compared to 90% of neonatologist who would fully resuscitate infants that
weighed 600gms and were 25 weeks in gestational age (DuPont-Thibodeau 2014). When
medical staff believe very preterm infants to have little prospect for intact survival they will not
offer optimal or urgent care; further illustrating the importance of family-centered involvement
and a multi-disciplinary approach in the decision to start or withdraw intensive care strategies
(Yu, 2005). Neonatologists consistently made practice decisions based on their personal
assessment of survivability to determine whether to offer life sustaining measures.

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Susan DeRosa | PSY500H1 BAY PATH UNIVERSITY
As one can see, guidelines for interventions in very preterm infants are not standardized,
nor does the medical community agree on end-of-life decisions for extremely low-gestational age
infants. DuPont-Thibodeau et al. recommend evaluations beyond the label of a gestational age
and implores the medical community to consider goals of care with a high degree of family
involvement. The views of the parents as well as the rights of the infant need to be considered
when arriving at the decision for care, and no longer should be left to the healthcare practitioners
to determine the value of preterm infant lives. Families need to be given comprehensive
information, so they can clearly understand the benefits as well as burdens of neonatal intensive
care. Healthcare personnel should be embracing dialogue to gain a deeper understanding of the
family’s perspective, moral code, religious beliefs, and cultural mores in order to assist in
treatment decisions.
Healthcare providers do carry a significant burden related to making these ethical
decisions. For infants born on the edge of viability, decisions to withdrawal treatment, implement
life supporting interventions, transfer to neonatal intensive care or perform palliative end-of-life
care is a very serious responsibility. Bioethical training for NICU nurses is becoming an essential
tool for creating opportunities for open dialogue to families. (Pasaron, 2013).
Every newborn has the right to life with dignity and compassionate family-centered care.
Early intervention to intensive care units improves the likelihood of long term survival in infants
above the gestational age of 22. Recent advances in Medicine, including improved diagnostic
tools like an MRI Brain Scan (Woodward 2006) and microsurgical procedures, may increase the
survival of preterm infants while reducing cognitive developmental dysfunction. The types of
interventions that will result in the greatest improvement in long term outcomes and quality of
life have yet to be determined.

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Susan DeRosa | PSY500H1 BAY PATH UNIVERSITY
Regardless of the gestational age, preterm infants on the edge of viability require
thoughtful, comprehensive and sensitive discussions with family members where all come to a
consensus of care that has the best interest of the infant in mind.

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Susan DeRosa | PSY500H1 BAY PATH UNIVERSITY
Citations:
Berger, T., Berter, T., S. El Alama, S., Fauchere, J.C., Hosli, I., Irion, O. Kind, C., Latal, B.,
Nelle, M., Pfister, R.E., Surbek, D. Truttmann, A.C., Wisser, J., Zimmermann, R. (2011)
Perinatal Care at the Limit of Viability between 22 and 26 Completed Weeks of
Gestation in Switzerland: 2011 Revision of Swiss Recommendations. European Journal
of Medical Sciences, 18.141:w13280, 1-13.
DuPont-Thibodeau A., Barrington, K. J., Farlow, B., Janvier, A., (2014) End-Of-Life Decisions
for extremely low gestational age infants: why simple rules for complicated decisions
should be avoided. Semin Perinatol 38(1), 31-37.
Duff, R., and Campbell, A. (1973) Moral and Ethical Dilemmas in the Special Care Nursery.
New Engl J Med 17(05), 289-290.
Costeloe, K. L., Hennessey E. M., Haider S., Stacey F., Marlow N. & Draper E.S. (2012) Short
term outcomes after extreme preterm birth in England: comparison of two birth
cohorts in 1995 and 2006 (the EPICure studies). BMJ, 345, e7976.
Kluger, J., (2014, May) Saving Preemies. Time Magazine Retrieved from URL:
http://time.com/108708/the-cutting-edge-medicine-saving-preemies/
Moore, T., Hennessey E., M., Myles J., Johnson S.J., Draper E.S. Costeloe K.L. & Marlow N.
(2012) Neurological and developmental outcome in extremely preterm children born
in England in 1995 and 2006: the EPICure studies. BMJ, 345, e7961.
Moriette G., Rameix, S. Azria, E., Fournie, A., Caevmaex L. Dageville, C., Gold, F., Kuhn, P.,

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Susan DeRosa | PSY500H1 BAY PATH UNIVERSITY
Storme, L., Simeoni, U. (2010) Very Premature births: dilemmas and management. Part
1. Outcome of infants born before 28 weeks of postmenstrual age, and definitions of a
gray zone. Arch. Pediatrics, May 17(5), 518-526.
Pasaron, R. (2013) Neonatal bioethical perspectives: practice considerations. Neonatal Network,
May-June 32(3), 184-192.
Xiong T., Gonzalez, F. Mu, D.Z. (2012) An Overview of risk factors for poor
neurodevelopmental outcome associated with prematurity. World J Pediatr, Nov 8(4),
293-300.
Weiner, J., Sharma, J., Lantos, J., Kilbride, H. (2014) Does diagnostic influence end-of-life
decisions in the neonatal intensive care unit? J Perinatol Sept (September 2014 epub
ahead of print) doi 10.1038/jp.2014.170
Woodward, L.J., Anderson P. J., Austin N.C., Howard, K., Inder, T.E. (2006) Neonatal MRI to
predict neurodevelopmental outcomes in preterm infants. N Engl J Med, Aug 355(7),
685-694.
Yu, V. (2005) Is neonatal intensive care justified in all preterm infants? Croat Med J, Oct 46(5),
744-50.