This past week, a new campaign was launched in Dublin, Ireland seeking to end the use of the term “incompatible with life” to describe unborn children prenatally diagnosed with life-limiting conditions. The campaign, which is calling on the media as well as those in the medical and legal fields to stop using the term, is part of an effort by the group Every Life Counts, which represents families whose children have been diagnosed with such severe conditions as anencephaly and Trisomy 18.
These families object to the use of “incompatible with life” to describe their children on the grounds that it is a grossly offensive way to characterize profoundly disabled children as well as a medically inaccurate term.
Tracy Harkin, a spokeswoman for the group, stated that the term is “medically meaningless, incorrect, and enormously hurtful.” Harkin is the mother of 8-year-old Kathleen Rose who was born with Trisomy 13, a rare chromosomal disorder which results in severe physical and intellectual disability. Harkin said of her daughter, “We were told when she was born that she wouldn’t be able to do anything, that she’d just lie there. But she crawls around the house, pulls herself up and hugs us.” She added, “She’s full of love, that’s really what she is.”
Though Every Life Counts’ effort has started in Ireland, it seeks to become an international endeavour which could potentially change the way society thinks and speaks about babies who receive tragic prenatal diagnoses. Medical professionals from across the world have already expressed concern about the misleading nature of the phrase.
The importance of the way in which medical professionals describe a condition cannot be underestimated. Data from the medical journal Critical Care Medicine shows that what doctors tell parents about their child’s prognosis is often influenced by their own attitude toward neurological impairment. Additionally, a 2000 study in Prenatal Testing and Disability Rights found that a quarter of doctors admitted trying to influence a mother’s decision to continue or not with the pregnancy when faced with a difficult diagnosis. Most commonly they encouraged mothers to terminate. As the information they are given will frequently determine how parents handle the situation – including whether or not they decide to abort the child – the use of a value-laden description is problematic and suggests that such a term should be replaced by an accurate clinical description.
Recognizing that this issue goes beyond mere semantics and is, in fact, deeply significant for the perception and care of profoundly disabled babies, a group of medical practitioners is issuing a global statement entitled “the Geneva Declaration of Perinatal Care.” The Declaration affirms that the term “incompatible with life” is “not a medical diagnosis and should not be used when describing unborn children who may have a life-limiting condition.” These practitioners assert that no one can tell how long a baby diagnosed with a chromosomal abnormality or neural defect will live and that families who receive these tragic diagnoses should be offered the full support of perinatal hospice care.
The label “incompatible with life” portrays as a medical diagnosis what is really a judgment call about a profoundly disabled child’s quality of life. The term is not only offensive to parents who object to the implication that their children’s lives hold less value due to their potential brevity but also has serious implications as to how families perceive these disabilities and their decision-making process.
How we treat our most vulnerable members is a reflection on our civilization. The value and human dignity of these children cannot be measured by their conditions or the length of their lives. The term “incompatible with life” projects a profound disregard for the child and the care that they and their families need. More and more medical professionals are standing up to end the use of this term and defend the dignity of these children.
Nora Sullivan is a research assistant at Charlotte Lozier Institute and is pursuing graduate studies overseas.