Op-Ed: Encouraging Deceit

March 16, 2012

By Renée Boss, MD, MHS


The Arizona State Senate recently passed a bill, sponsored by Nancy Barto (R-Phoenix), targeting communication between pregnant women and their physicians. The bill, and other legislation like it around the country, represents multiple threats to women, families, and physicians.


The Arizona Senate version of this bill would protect physicians from legal culpability in a “wrongful birth” claim brought because of a child born with an undiagnosed genetic anomaly or syndrome, essentially freeing physicians not to disclose fetal conditions they suspect would lead to pregnancy termination.   For instance, if a routine prenatal ultrasound diagnoses a fetus with anencephaly, or absence of most of the brain and spinal cord, a physician could withhold that information from a family so as to prevent a decision to terminate the pregnancy.


Previously, the Arizona bill would also have protected physicians who choose not to inform a woman that she is pregnant at all, if the physician suspects that the woman would choose pregnancy termination (a “wrongful conception” or “wrongful pregnancy” claim.) For instance, if a woman presents with abdominal pain and a physician diagnoses an ectopic pregnancy – which threatens the life of the woman and could never result in a live infant— the physician could withhold that information from the woman so as to prevent her decision to terminate the pregnancy and save her own life.  Though this provision was eventually removed from the final Senate bill before it passed, it is another alarming indication of the very real threat to a woman’s control over her own health, and even life.


Given recent trends in the Arizona legislature, the bill has a good chance of being passed by the full House.  Twelve other states have similar “wrongful birth” or “wrongful life” laws barring malpractice claims against clinicians who withhold information from women about fetal health problems.  At the same time, multiple states have passed or are considering legislation that would force women to receive detailed information from prenatal ultrasounds prior to obtaining an abortion.


Despite the popularity of legislating on the issue, the number of “wrongful life” lawsuits in the United States is negligible.  Physicians are not behind the legislation.  In reality, the Arizona bill and others like it create additional hardship for women, families and their physicians. Families are robbed of the ability to learn that their growing fetus may have a serious genetic anomaly or condition.  The weeks to months after a prenatal diagnosis are critical, as families  undergo additional testing to further understand the fetal conditions, as they begin the anticipatory grieving that accompanies the loss of a healthy pregnancy, and as they prepare themselves and their other children for the difficult decisions ahead.  Many families, after learning that their fetus has a serious medical problem, choose to continue the pregnancy and hope that they will have at least a little bit of time with their child after birth.   The Arizona bill would eliminate the opportunity for families to make informed and loving decisions that they feel to be in the best interest of their family.  Some families do decide to proceed with a pregnancy termination, a legal right in the United States.


This legislation also threatens the physician-patient relationship, destroying physician integrity and allowing for personal and political agendas to shape medical decisions.   No two medical scenarios are the same, and inserting election-year politics into private, legal healthcare choices is a profound mistake.


Renée Boss, an associate faculty member at the Johns Hopkins Berman Institute of Bioethics and an assistant professor in the Division of Neonatal-Perinatal Medicine, has a special expertise in neonatal palliative care. She founded the Palliative Care Working Group in the division, and is a member of the Maryland Pediatric Palliative Care Coalition, and of the American Academy of Hospice and Palliative Medicine.


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