This week advocates will launch a declaration at the United Nations in Geneva to stop use of the term “incompatible with life” to describe children with life-limiting conditions such as anencephaly and Trisomy 13. The Geneva Declaration on Perinatal Care is an effort, backed by medical practitioners and parents of profoundly disabled children, to end the use of the term on the grounds that it is both medically inaccurate as well as a grossly offensive way to characterize a child with a severe disability.
Tracy Harkin, a spokeswoman for the Irish group Every Life Counts, which supports the declaration, 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 resulting 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.”
The growing list of medical practitioners signing on to the document recognize that this issue does not come down to simple semantics but can have serious consequences on both societal perception of the child as well as their 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 medicine and perinatal hospice care.
The way in which medical professionals describe a condition is vitally important. 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. 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 parents are given will frequently determine how they handle the situation – including whether or not they decide to abort the child – the use of a value-laden description is deeply problematic and should be replaced by an accurate clinical description.
The dismissal of a child’s life due to such a mischaracterization as “incompatible with life” also seriously hinders the medical community’s ability to advance and effectively treat these conditions. In 2013, U.S. Congresswoman Jaime Herrera Beutler (R-WA) announced that her unborn child had been prenatally diagnosed with Potter’s syndrome — a condition notable for the absence of kidneys and the severe lack of amniotic fluid in the womb. Despite doctors’ suggestion that the Congresswoman and her husband terminate the pregnancy, they opted for treatment of their daughter’s condition instead.
Herrera Beutler underwent injections of saline solution into the baby’s amniotic sac, enabling the child to grow properly. Abigail Beutler was born in July 2013 and is considered a medical miracle. The treatment that enabled Abigail to live is now a hope for other parents who receive the same prenatal diagnosis. Such an advancement would not be possible, however, if the Beutlers had accepted the characterization of their daughter as “incompatible with life.”
This derogatory label portrays as a medical diagnosis what is really a judgment on 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 than a healthy child’s, but also has serious implications as to how families perceive these disabilities and their decision-making process.
The intrinsic value of these children cannot be measured by their medical diagnoses or the length of their lives. The term “incompatible with life” projects a profound disregard for the child’s life and the compassion that they and their families need. The Geneva Declaration is a call to us all to treat society’s most vulnerable with all the care and respect that their human dignity demands.
Nora Sullivan is an associate scholar at the Charlotte Lozier Institute, the education and research arm of the Susan B. Anthony List. Nora is currently working on her Master’s Degree in Public Affairs at University College Dublin in Ireland.