Advancing the Science

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May 21, 2019

A pregnant pause

By Caitlin Doran

In many states, women can expect pregnancy to restrict their advance directives.

Pregnant woman lying in bed receives care from a female doctor and a female nurse.

Search online for what to do when getting ready for baby and you’ll find endless checklists of essentials every parent needs, from onesies and diapers to high tech strollers and baby monitors. The best lists also mention an important legal document that expectant parents should consider completing before baby arrives: an advance directive outlining the mother’s health care wishes should she become unable to make decisions or speak for herself.

However, according to a report recently published by researchers at Mayo Clinic and other institutions in the Journal of the American Medical Association (JAMA), what expectant parents often don’t realize – and what isn’t disclosed, even on most advance directive forms—is that the majority of U.S. states have laws on the books that restrict or invalidate a pregnant woman’s advance directive.

These states put a “pause” on these patients’ ability to control their health care. And they often do not communicate this fact this to patients, who fill out these forms in good faith.

Erin DeMartino poses, wearing a light blue jacket and a scarf.
Erin DeMartino, M.D.

The purpose of advance directives

Life can change in an instant, and even young adults can face a serious medical condition.  “When you become pregnant, that’s a good time to start looking ahead and thinking about an advance directive,“ says Erin DeMartino, M.D., a pulmonary and critical care physician at Mayo Clinic’s campus in Rochester and first author of the report published in JAMA.

Advance directives safeguard patient autonomy and control over life-and-death medical decisions that are difficult to foresee. They allow a patient to name a person who can make health care decisions on their behalf. They also give a patient the opportunity to state specific medical treatments they do or do not want.

“It’s ironic, “says Dr. DeMartino, “that when young women are faced with perhaps their first major medical situation—pregnancy and childbirth—their control of their own health destiny is often taken away by the State. And because this fact is usually not communicated on the official state advance directive documents, patients might not even know it.”

The ethical way forward requires increased transparency

Laws governing life-and-death decisions for pregnant mothers vary widely state-by-state. According to the report published in JAMA, 38 states have laws that identify pregnancy as a condition that affects decisions for incapacitated women. 30 of these states restrict a woman’s or her surrogate’s choice regarding withholding or withdrawing life-sustaining treatment and 25 states invalidate a woman’s advance directive.  Only 11 states disclose those restrictions on their advance directive documents.

Map showing limitations on decision making by state.

In this situation, transparency is essential, says Richard Sharp, Ph.D., director of the Mayo Clinic Biomedical Ethics Research Program. Patients should always be informed about potential situations that might prompt an advance directive to be restricted or temporarily revoked. “These important details should be spelled out in the forms that patients sign and in the educational materials that are often distributed to patients when they sign an advance directive,” says Dr. Sharp.

Map showing communication of restrictions by state

“It’s of fundamental importance that women understand what they’re signing, “agrees Dr. DeMartino. “If you’re using an advance directive, there should be no surprises when it comes to making your health care wishes known or in determining if those wishes will be carried out.” 

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Tags: advance directive, biomedical ethics, Erin DeMartino, Findings, pregnancy, Richard Sharp

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