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DeMartino ES, Sperry BP, Doyle CK, et al. US State Regulation of Decisions for Pregnant Women Without Decisional Capacity. JAMA. 2019;321(16):1629–1631. doi:10.1001/jama.2019.2587
All US states have laws addressing decision making for individuals who cannot make their own medical decisions, including provisions for advance directives and processes authorizing relatives or interested persons to direct care as surrogate decision makers,1 although variation among state laws is increasingly recognized.2,3 However, the prevalence and content of state statutes and official advance directive documents addressing treatment decisions for decisionally incapacitated pregnant women is unknown.
Using the Nexis Uni and Fastcase databases, 3 authors (E.S.D., B.P.S., and C.K.D.) conducted parallel searches to identify statutes governing treatment decisions for incapacitated pregnant women effective in February 2019 from the 50 states and the District of Columbia. We compiled official state advance directive documents from each state’s legislature, administrative agency (eg, department of health), and bar association. We performed serial analyses to identify (1) presence or absence of language referencing pregnancy; (2) whether pregnancy affected advance directives, surrogate decision making on the woman’s behalf, or both; (3) whether likelihood of fetal survival was a criterion for decisions about withholding or withdrawing life-sustaining therapies; and (4) whether pregnancy restrictions codified in a given state’s statutes were noted in its official advance directive. Disagreements were resolved by discussion among all authors.
Thirty-nine states identified pregnancy as a condition that influences either an incapacitated woman’s advance directive or surrogate decision making (Figure). Of these, 8 states’ advance directive documents elicited a woman’s pregnancy-specific care preferences. Of the 31 states that restricted choices about withholding or withdrawing life-sustaining therapies from pregnant women, the restriction appeared in statutes in 29 states and only in advance directive documents in 2 states (Table). Of the 29 states with statutory pregnancy restrictions, 69% of official advance directive forms did not disclose their pregnancy restrictions.
Of the 31 states with a pregnancy restriction, 26 specifically invalidated a woman’s advance directive during pregnancy (Table). Nineteen states prohibited a surrogate decision maker from withdrawing life-sustaining therapies from a pregnant woman.
Nineteen of the 31 states with restrictions imposed these limits only when, in the opinion of the treating physician, the fetus could survive with continued application of life-sustaining therapies to the woman. The remaining 12 states required that life-sustaining therapies continue to be provided to a decisionally incapacitated pregnant woman until her fetus could be safely delivered.
Three states (Alaska, Georgia, and Oklahoma) required physicians to test for pregnancy before withholding or withdrawing life-sustaining therapies from female patients of childbearing age. Five states (Kentucky, New Hampshire, North Dakota, Pennsylvania, and South Dakota) specified that life-sustaining therapies may be discontinued if they cause the woman undue pain that cannot be alleviated by medication. Pennsylvania assumed the financial burden of providing ongoing life-sustaining therapies to a pregnant woman who lacks decisional capacity and has an end-stage medical condition or is permanently unconscious.4
Ethics and health law in the United States prioritize patient self-determination and freedom from unwanted medical treatment. When decision making capacity has been lost, these tenets can still be upheld by using advance directives or by respecting the choices of surrogate decision makers.5 However, this analysis suggests that a majority of US states restrict the health care options available to decisionally incapacitated women during pregnancy and do not disclose these restrictions in advance directive forms.
Although states have an obligation to be transparent about pregnancy restrictions, the heterogeneity among state laws and the justification for these restrictions warrant further ethical and legal scrutiny. Neither the frequency with which these statutes are encountered nor their effect on clinical practice is known. It is unclear whether the current legal framework achieves an ethical balance between the state’s interest in preserving fetal life and the interests incapacitated women may have in forgoing life-sustaining treatments.6
Accepted for Publication: February 27, 2019.
Correction: This article was corrected on September 3, 2019, for data errors due to omission of a statute that was not found by the search strategy.
Corresponding Author: Erin S. DeMartino, MD, Division of Pulmonary and Critical Care Medicine, Mayo Clinic, 200 First St SW, Rochester, MN 55905 (email@example.com).
Author Contributions: Dr DeMartino had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Concept and design: DeMartino, Sperry, Doyle, Kramer, Dudzinski, Mueller.
Acquisition, analysis, or interpretation of data: All authors.
Drafting of the manuscript: DeMartino, Sperry, Mueller.
Critical revision of the manuscript for important intellectual content: All authors.
Statistical analysis: Sperry, Doyle.
Administrative, technical, or material support: DeMartino, Sperry, Doyle.
Supervision: DeMartino, Sperry, Kramer, Mueller.
Conflict of Interest Disclosures: Dr Kramer reported grant funding from Greenwall Foundation. Dr Mueller reported receiving consulting fees from the Boston Scientific Patient Safety Advisory Board and personal fees from NEJM Journal Watch and American College of Physicians. No other disclosures were reported.
Additional Contributions: We thank Mark Siegler, MD, Department of Medicine, MacLean Center for Clinical Medical Ethics, University of Chicago, and Daniel P. Sulmasy, MD, PhD, Departments of Medicine and Philosophy, Pellegrino Center for Clinical Bioethics, Georgetown University, for contributions to the analysis and writing of the manuscript and Sei Unno, BA, Beazley Institute for Health Law and Policy, Loyola University Chicago School of Law, for contributions to data collection and analysis. No compensation was received.
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