Bodily Autonomy & the Patient’s Right to Refuse Medical Care

Author

Jen Castle and Danika Severino Wynn

Publish date

February 6, 2024

Bodily Autonomy & the Patient’s Right to Refuse Medical Care

This editorial can be found in the February 2024 issue of the American Journal of Bioethics.

The Supreme Court’s decision in Dobbs v. Jackson Women’s Health Organization plunged the United States into a devastating public health crisis. While we have some evidence of the deep harms that abortion bans and restrictions have inflicted across the country, it will take years for us to fully understand the breadth of the short- and long-term consequences to our nation’s health care system and people’s reproductive health and lives. Abortion bans will further worsen poor maternal and infant mortality rates. Research has demonstrated that mothers living in states that banned abortion after Dobbs were already “up to three times more likely to die during pregnancy, childbirth, or soon after giving birth” and that babies born in those states were “30% more likely to die in their first month of life” in the six year period leading up to the decision.

As the authors of “The Two Front War on Reproductive Rights—When The Right To Abortion Is Banned, Can The Right To Refuse Obstetrical Interventions Be Far Behind?” explained, there is also a deep ethical issue at play that is not being taken seriously enough by the media, legislators, and the public, and we are grateful for the authors’ attention to this issue. The right to bodily autonomy includes a patient’s right to refuse medical care. The current reality that people in some states can be denied the ability to decide when to end a pregnancy risks bolstering the myth of fetal personhood.

As of mid-December 2023, there are two high-profile cases related to pregnancy care and policing currently playing out on a national stage. Kate Cox is a Texas-based woman who sought an abortion due to the fetus’s fatal diagnosis of trisomy 18—care that she needed to protect her future fertility. After the state of Texas moved to block a lower court ruling granting her access to an abortion, Ms. Cox was ultimately forced to seek care outside of the state of Texas. Brittany Watts of Ohio has been accused of “abuse of a corpse” for having a miscarriage at home. Ms. Watts’s fate is yet to be decided. The stark, disturbing reality underlying both cases is that even a non-viable fetus has more rights than a pregnant or recently pregnant person.

While Minkoff, Vullikanti, and Marshall primarily focus on the theoretical idea that the right to refuse treatment could be diminished as a result of the Dobbs decision, this right has always been threatened for certain communities across the country, even when Roe was the law of the land. Black, Indigenous, and other people of color, LGBTQ+ communities, undocumented people, those who are incarcerated, those who do not speak English, and those in low-income communities have been neglected, harmed, and even targeted by an American health care system that is deeply rooted in racism. This is especially clear to see in data on sexual and reproductive health, including obstetric care and abortion care. There has always been a chasm between the legal right to abortion and the actual accessibility of timely, desired care and information from a trusted provider.

Research makes clear the discriminatory practices of the criminalization of pregnant people; it is most certainly at play in the case of Ms. Watts, a Black woman. According to Pregnancy Justice’s most recent report, “… poor Black pregnant people and poor white pregnant people bore the brunt of the consequences of pregnancy criminalization” and “nearly 85% of cases involved criminal charges against a pregnant person who was deemed legally ‘indigent,’ meaning that they faced considerable financial hardship such that incurring legal fees would mean they would be unable to afford basic life necessities.” There has been a significant uptick of pregnancy criminalization cases since 2006 with the majority occurring in “states in the country that either had judicial decisions that expanded definitions of ‘child’ to include fetuses in their criminal laws, or, in the context of Tennessee, had a law in place that explicitly criminalized the pregnant person if the newborn was born exposed to or harmed by a drugs”.

Data prior to the Dobbs decision show the United States already has extreme inequities in maternal morbidity and mortality between states and between races and ethnic groups. For example, the latest statistics from the CDC demonstrate that Black women are nearly three times more likely to die from pregnancy related causes than their white counterparts. The dehumanization of pregnant people due to racism is one of the reasons for these abhorrent statistics. Davis defines obstetric racism as the convergence of obstetric violence and medical racism and posits that this is a threat to positive birthing outcomes, specifically for Black people.

Criminalization of a pregnant person due to their pregnancy outcome, as in Ms. Watts’s case, is a form of dehumanization. This criminalization strips a pregnant person of their bodily autonomy and indicates that their individual rights are less important than the pregnancy. Historically, gynecologic research was conducted by early physicians, who were exclusively white men, without consent, on many Black enslaved people in ways that were traumatic, violent, and caused harm. While we often refer to the examples Anarcha, Betsy, and Lucy—three victims of Dr. J. Marion Sims’s horrific experiments—when discussing racism and lack of autonomy in health care, this issue is still salient. Assaults on the bodily autonomy of pregnant and birthing people continue to be documented in hospitals across the country. These assaults are sometimes purposeful but more often are the result of the patriarchal model of obstetric care, which puts the health care provider in a place of power and diminishes the decision-making and control of the pregnant or birthing person. This can lead to a lack of informed consent before procedures like cervical exams or interventions in prenatal care or birth, drug testing without consent or knowledge of a patient, or in the most serious cases even performing cesarean sections against a person’s will.

In its Committee Opinion, “Refusal of Medically Recommended Treatment During Pregnancy” (June 2016), ACOG asserts that, “Pregnancy is not an exception to the principle that a decisionally capable patient has the right to refuse treatment, even treatment needed to maintain life. Therefore, a decisionally capable pregnant woman’s decision to refuse recommended medical or surgical interventions should be respected”. Preliminary research from UT Austin and UCSF found that since the Dobbs decision, pregnant people with bleeding complications, ectopic pregnancies, and early miscarriages all had worse outcomes because doctors were afraid of providing care that would be considered to be against the law. This reflects the chilling effect on providers that abortion rights advocates have been warning about for years, particularly in advance of Texas’s near-total abortion ban—S.B. 8—which the Supreme Court allowed to take effect months before it decided Dobbs. In fact, abortion bans have already forced health care providers into situations in which they are forced to abandon aspects of their professional guidelines and ethics, or risk punitive consequences. The Texas attorney general interceded in Ms. Cox’s case and threatened the hospital and staff who had been granted an exception to provide her necessary care. By extension, it is not difficult to envision a not-too-distant future where medical personnel feel further coerced, both implicitly and explicitly, into performing non-consensual interventions during pregnancy, labor, and delivery, lest they come under suspicion by hostile state governments for adverse fetal outcomes.

As we continue to advocate for the right of pregnant people to access abortion, it is also critical to ensure that all communities receive care that is free from obstetric racism or violence, without stigma or fear of criminalization. The overturning of Roe has given rise to a dangerous sense of entitlement where patriarchy and white supremacy collide, such that politicians now claim authority not just to intercede on behalf of a viable fetus, but also on behalf of a non-viable fetus, even at the risk of morbidity and mortality to the pregnant person. As Minkoff, Vullikanti, and Marshall note, this takes away decision-making from the pregnant person. Following that argument, it is not a stretch to anticipate the grave injustice of state intervention throughout pregnancy, willfully disregarding the unique choices and needs of the pregnant person and the people in their lives.

Jen Castle and Danika Severino Wynn

Planned Parenthood Federation of America

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