Guest Blogger: Allison M. Whelan*
So much of the political and legal debate about reproductive choice centers on abortion. In doing so, these debates obscure so many other reproductive choices women must make. And the choices are not easy—and the stakes are even greater in an era where any prenatal missteps might lead to aggressive state action, including criminal sanctions. There are thorny situations that confront medicine and ethics. For example, how should we think about families that choose to carry terminal fetuses to delivery only for the fetus to expire shortly after birth? Should such pregnancies be terminated early given that doctors and even the intended parents know the fetus will not survive? Where does the law stand on such issues? What is morally permissible?
Thousands of women and families face lethal prenatal diagnoses and perinatal loss every year. In 2006, there were 25,972 reported fetal deaths at twenty weeks or later. An additional 19,041 live-born infants died at less than twenty-eight days. Birth defects such as congenital malformations and chromosomal abnormalities are the leading cause of fetal-infant deaths. Lethal anomalies (i.e., Trisomy 13; anencephaly; hypoplastic left heart syndrome) are a subset of birth defects characterized by a radically shortened lifespan. In 2005, there were 6,925 fetal and infant deaths attributable to lethal anomalies in the U.S.
Advancements in prenatal diagnosis coinciding with improved access to legal abortions create medical options for patients, but also spur challenging ethical questions. For example, therapeutic abortions have become the “management of choice” for many women whose fetuses experience a “lethal condition”. However, termination may not be the preferred choice for all women and families. The concept of perinatal hospice fills this void and offers women valid options after a terminal fetal diagnosis. Although the concept is still relatively novel and unknown in much of the health profession and lay population, the development of perinatal hospice programs is growing.
Perinatal hospice is worth taking seriously. For example, perinatal hospice programs are multidisciplinary and their services begin at the time of diagnosis (rather than death), in recognition of “anticipatory grief,” a term describing the grieving process that begins prior to death when a death is probable or imminent. Those who have used these services say that perinatal hospice provides a supportive environment for parents to grieve and appreciate any time they have with their infant. Further, they say It affirms their role as parents and acknowledges that their loss is “as real” as the loss of any other loved one. Maybe perinatal hospice is a safe place where parents can “be parents.” It’s worth thinking about.
*Allison Whelan is a graduate student, University of Minnesota School of Law and Center for Bioethics
Thank you for raising awareness about the existence of perinatal hospice as an option when a mother receives an adverse diagnosis. I believe that an article of this nature is incomplete without mention of the literature that reveals that many women who terminate for fetal anomalies suffer prolonged depression and PTSD. All literature that relates to women who continued pregnancy has shown a very positive experience.
Also, the conditions listed as lethal anomalies (tri 13, anencephaly, HLHS) are not always lethal in the neonatal period. Indeed, survival of children with trisomy 13 was much greater in the 60’s (according to population studies) then it is now. This is important to note because women who continue pregnancy might reasonably not accept that their child will die soon after birth as the article here suggests. Their child might even be a candidate for life-prolonging treatment. For this reason, in my view, a good PH service will support an expectant mother and her family for the likely, but not always certain death of the newborn and not necessarily be limited to a plan of comfort care.
Here are two relevant articles:
Wool C. Systematic review of the literature: parental outcomes after diagnosis of fetal anomaly. Adv Neonatal Care. 2011 Jun;11(3):182-92. doi: 10.1097/ANC.0b013e31821bd92d.
Janvier A, Farlow B, Wilfond BS.The experience of families with children with trisomy 13 and 18 in social networks.Pediatrics. 2012 Aug;130(2):293-8. doi: 10.1542/peds.2012-0151
Thank you for the insightful comment – and that is an important thing to note. Given the advancing treatments and even the potential for misdiagnosis, perinatal hospice can provide the additional benefit of allowing reassessment at birth if the condition is found to be less serious than the original prognosis. This is yet another way perinatal hospice can expand women and families’ choices.
Thank you for writing about perinatal hospice as an alternative to abortion. I must say I agree with Barbara´s comment (above). Having myself carried to term a baby with trisomy 18, and later having offered peer support to several women carrying to term, I have the same experience – we all regard our journey as positive, regardless of whether their child dies in their womb, whether it lives for a short while, or whether it is still living.
I am advocating perinatal hospice in Norway, and there are now plans to at least make some national guidelines. Which is good. My main worry is the focus on hospice care after birth. In my mind, all prenatal diagnosis must lead to an offer of “hospice in the womb”, including less serious conditions like Down syndrome, Turner syndrome etc. They all need special care and attention to cope with their new situation in pregnancy, and intrauterine lethality is quite big also for these syndromes. In addition, conditions often cited as “lethal” are not, in fact, universally lethal. Children with trisomy 13 and 18 can live for years, even decades.
I am therefore of the opinion that “hospice in the womb” is also about making plans for all outcomes – including possible life and active interventions. It is all about opening up to possibilities and to life, not just focus on death.
Thank you for writing about the options available for mothers carrying a fetus with a “lethal” diagnosis. Both Barbara and Dr Berg make valid points that lethal does not apply in all cases. Survival statistics show that 5-8% of infants with trisomy 13 or 18 will survive to their first birthday, thus these disorders are not universally lethal. However, a withholding or lack of needed intervention can prevent survival and further suppress the survival statistics by which these infants are judged.
Having been involved for over two decades with the Support Organization for Trisomy 18, 13 and Related Disorders (SOFT), I can tell you there are survivors living with these disorders that did not receive special or invasive interventions at birth, my daughter being one. She was not prenatally diagnosed so no one was withholding care, she just did not need it. Today prenatal screening is a standard of care in pregnancy. Those who receive a “lethal” diagnosis for their fetus need balanced information in order to make decisions about termination or to continue the pregnancy. In the case of trisomy 13 or 18, the medical community usually provides negative information focusing on prognosis and disability and it is from other parents where families find positive information about how valued and loved these children are. SOFT became aware of Perinatal Palliative Care a few years ago and expectant parents report being routinely advised to use these programs. Please see http://www.trisomy.org Scroll to the bottom of the homepage to the Family Support section to see a birth plan and also see a description of Perinatal Palliative Care. I believe it is imperative that these programs allow parents to hope for the small possibility of survival and also support parents who choose to make plans for intervention, if desired, and appropriate to the circumstances of their infant.
I wholeheartedly concur with the responses above. Each child must be viewed as an individual and given options for treatment based on their needs rather than a focus on the underlying condition. In addition, there are survivors who grow and thrive with varying amounts and types of interventions which, again, emphasize individualizing care at birth and afterward. The provision of balanced information is key along with a corresponding open frame of mind to the range of outcomes for this population.
I also wanted to note my connection to children with rare incidence syndromes. I am Principal Investigator of the Tracking Rare Incidence Syndromes (TRIS) project (https://web.coehs.siu.edu/Grants/TRIS/). I have published articles and given presentations on long-term survivors with trisomy 18, 13 and 9 mosaic and their families. I also have classroom experience working with preschool-aged children with trisomy 18.
Bruns, D. A. (2013). Erring on the side of life: Children with rare trisomy conditions, medical interventions and quality of life. Journal of Genetic Disorders and Genetic Reports. doi: 10.4172/2324-9331.1000103
Bruns, D. A. & Schrey, C. (2012). Examining in-home care needs and work responsibilities for parents with children with a rare trisomy condition. International Journal of Developmental Disabilities, 58(3), 159-175.
Bruns, D. (2011). Birth history, physical characteristics, and medical conditions in long-term survivors with full trisomy 13. American Journal of Medical Genetics Part A, 155(11), 2634-2640.
Bruns, D. (2011). Presenting physical characteristics, medical conditions and developmental status of long-term survivors with trisomy 9 mosaicism. American Journal of Medical Genetics Part A, 155(5), 1033-1039.
Bruns, D. & Foerster, K. (2011). ‘We’ve been through it all together’: Supports for parents with children with rare trisomy conditions. Journal of Intellectual Disability Research, 55(4), 361–369.
Bruns, D. A. (2010). Neonatal experiences of newborns with full Trisomy 18. Advances in Neonatal Care, 10(1), 25-31.