“A person is a person no matter how small.” Horton Hears a Who, Dr Seuss

Perinatology– also known as maternal fetal medicine—is that branch of obstetrics concerned with the care of mother and fetus and the handling of high-risk pregnancies.

In recent yeatrs, perinatologists have been incorporating into their practice a new concept in perinatal care called the “perinatal hospice.” This care originated in 1996 with the controversy over “partial-birth abortion.” This abortion method involved the surgical procedure where the baby would be delivered to the shoulders as a breech, then deliberately held in place while a scissors or other sharp instrument was inserted through the baby’s posterior skull into the brain resulting in death. Many perinatologists believed this procedure so horrible that they sought to find a better way to care for our patients facing the hardest circumstances.(1)

Approximately 0.2-0.3% of newborns die as a result of lethal anomalies.(2) Lethal anomalies now constitute the leading cause of newborns’ deaths at term.(3) This, in concert with our new abilities to find and diagnose fetal anomalies before birth, has led to limited management choices for families.

Previous counseling prior to perinatal hospice generally involved only the recommendation to terminate the pregnancy. Doctors did so for a number of reasons: a desire to “spare” the mother and family a distressing experience, the family’s perceived need to “get it over with,” the physician’s felt need to “do something” and deal with the discomfort of bereaved parents, misinformation about avoiding complications of pregnancy, and a fear of increased maternal death.

The literature regarding termination of pregnancy for anomalies finds a different picture. Early, small studies provided an initial glimpse that termination losses were as intense as spontaneous losses. Zeanah, et al., in 1993 reported a case-control study of 23 individuals and found 17% (4/23) suffering depression and 23% (5/23) seeking psychiatric counseling at two months.(4) A more recent study of 253 women from 2-7 years after termination of pregnancy for fetal anomalies prior to 24 weeks by Korenromp et al., in 2005 found that pathologic grief persisted in 3% of patients (2/253) and that 17% (33/253) suffered from symptoms of posttraumatic stress.(5) Finally, Korenromp et al., in 2009 found persistent and significant grief responses at 4,8, and 16 months.(6) At 4 months 46% of women revealed pathologic levels of posttraumatic stress symptoms and at 16 months 21% still had pathologic levels of posttraumatic stress symptoms.(6)

Comparing grief from miscarriages with live birth, Janssen et al., in 1996 published a study of 227 women with first-trimester losses compared to a control group of 213 women who had a live birth.(7) The first 6 months after miscarriage showed an increased level of depression, anxiety, and physical symptoms in the miscarriage group, but by one year after the miscarriage there was no difference between the women who delivered a live baby or those who suffered a miscarriage — thus demonstrating recovery to baseline mental health with early miscarriages.(7)

The much-touted increase in maternal mortality in hospice care does not exist. In fact, the mortality rates with induced abortion from 16-20 weeks are quoted as 9.3/100,000 live births and the rate for pregnancy-related mortality is 10/100,000 live births.(8,9) Essentially, the mortality rates are the same for either of the management choices.

In this context we offer the new concept of the “perinatal hospice”: perinatal hospice is the prenatal diagnosis of a terminally ill fetus in-utero leading to perinatal hospice as part of the continuum of end-of-life care. MORE...