In Ireland, prenatal diagnosis now enables pregnant women getting news about a disabling condition (likely to lead to death before or shortly after birth) to have a termination of pregnancy (TOP) . . . should they choose.
Choice, however, brings ethical challenges. For example, in 2008 UK researchers found "that although informed choice is highly valued in Western, individualistically orientated countries, it is less highly valued in nonWestern, more collectivist countries." And, in 2013, an English study noted that some women are unaccustomed to choosing, with one midwife saying, "particularly some of the Asian women. They've not had a choice of who they marry, what job they do or education, and then suddenly we expect them to make choices."
The implications of choice demand a nuanced approach in the context of TOP, and Cork-based researchers offer a useful insight into the potential value for some women, and their families, of choosing to continue their pregnancies despite a prenatal lethal diagnosis.
Healthcare professionals are potentially influential, even while intending to be nondirective
Report
Orla O'Connell is a midwife specialist in bereavement at Cork University Maternity Hospital, and a member of the Pregnancy Loss Research Group at the Infant Centre, University College Cork. She is also lead author of a recent study, published in the journal Midwifery, that draws on interviews with four mothers who continued with pregnancies, despite a prenatal diagnosis of anencephaly. The women's pregnancies occurred two to seven years before the study and prior to Ireland's referendum on TOP.
Anencephaly is a life-limiting condition, where the fetus develops without a major portion of their skull and brain and is fatal either before delivery or shortly after birth. In O’Connell’s study, all diagnoses were made between 16 and 24 weeks. Two women described themselves as having religious beliefs, one as atheist and one as a nonpractising believer. The researchers evaluated the emotional impact on mother; the decision-making process; the evolving relationship with baby; experiences that hurt and experiences that helped; and lasting impact. The emotional impact featured grief, shock and a loss of identity and sense of failure. For decision-making, the choice was between continuing pregnancy or travelling overseas for TOP. All four initially considered TOP and had this been an option in Ireland two mothers would have chosen it.
O’Connell gave her thoughts on the role of healthcare professionals (HCPs) in the decision-making process, especially in the present context of TOP legislation. “HCPs are potentially influential, even while intending to be nondirective,” she told The Irish Times, adding that when parents receive devastating news, they hang on to a HCP’s every word, deeming them experts. O’Connell explains that clinical guidance on fatal fetal abnormalities (FFAs) from the Royal College of Physicians of Ireland (RCPI) states that parents must receive value-neutral information from HCPs whose awareness of their own beliefs should moderate their degree of influence.
Value-neutral approach
“With legislation making TOP more accessible,” O’Connell observes, “it’s reasonable to expect that some HCPs will be challenged to ensure a value-neutral approach. Importantly, this applies both to those favouring TOP and those favouring continuations of pregnancy, but as the RCPI advises, ‘Respect for the values and decisions of parents is central to providing compassionate supportive care in pregnancies complicated by a FFA’.”
O’Connell’s response to whether positive outcomes might emerge from such ordeals provides a moving perspective on the human experience when exposed to life’s rawest edges: “The positives for these women included having an opportunity to know their baby, as they valued each day of this extremely precious pregnancy because that was all they would have. They learned to live in the present, as if the impending death sharpened their appreciation of not only their baby’s life but the value of their own lives.”
Seeing their baby’s deformity, adds O’Connell, helped in accepting the baby’s identity and that they were not for this world: “There was a sense of having respected their child’s natural life cycle and his or her place in the family, so the baby was a recognised family member and held a vibrant part of the family story.”
Professionals must both respect the value of each and every baby while also respecting the most difficult choice that a mother will ever have to make
O’Connell’s team’s findings, plus her own insights, highlight some notable points. For example, Irish maternity services have a global reputation in perinatal palliative care; despite TOP seeming to be the only way forward, the necessary travel-related delays gave an opportunity for reflection and adjustment; and after receiving a FFA diagnosis, says O’Connell, “mothers don’t have the capacity to know that they do have the capacity to withstand this and to learn to love this baby, and it’s important to slow down decision-making beyond one based on an initial shocked response.”
O’Connell’s team highlight ethical issues surrounding the nature of life and how even FFAs can contribute to its enhancement: “I’m aware,” explains O’Connell, “of a deepened appreciation of the intrinsic value of each life even when afflicted with a FFA. I’ve witnessed the healing impact of the profound loving connection between these babies and their mothers.”
It seems to me that in this age of evidence-based medicine, personal reflections such as those shared by O’Connell’s courageous interviewees and collated by her team are worth as much – perhaps more – than any number of randomised controlled trials.
Finally, O’Connell says, “HCPs must both respect the value of each and every baby while also respecting the most difficult choice that a mother will ever have to make. Perinatal palliative care, both for mothers who continue and for those who choose to terminate, honours all.”