In Part 1 of this Series, we described the amicus curiae brief that we filed in the New York forced c-section case of Rinat Dray with a coalition of maternity care consumer advocacy organizations.
The amicus brief is a legal argument about informed consent and refusal in U.S. maternity care in six parts, with an appendix of 42 narratives written by women who experienced the violation of this right. We drew on these women’s voices throughout the brief, so that the court could hear directly from women about the significance of this right and its violation. The statistics can only be understood through the stories.
Here is the full Amicus Brief PDF, including the Appendix of women’s full stories, from which the quotes are drawn. We are also publishing the sections of this brief as separate blog posts over the coming weeks. Last week we shared the Statement of Interest of the amici organizations and the Summary of the Argument. In this week’s Part 2, we share sections I and II of the brief, on informed consent and refusal and its significance in maternity care.
Women should not be subject to being treated as if their voices don’t matter. – A. M. (TX)
I am not a mannequin, dummy, or teaching instrument. I am a patient too. – Anonymous 1 (TN)
Informed consent is a core principle of law and medical ethics. As the American Medical Association has explained, “Informed consent is a basic policy in both ethics and law that physicians must honor, unless the patient is unconscious or otherwise incapable of consenting and harm from failure to treat is imminent.” Patients have the right to be informed about the purpose of a proposed treatment, its risks and benefits, and the risks and benefits of alternatives, including the risks and benefits of declining care; to receive recommendations about a course of care; and to be supported in decisions about care, including the decision to decline recommended treatment. The principle recognizes that “an individual’s physical, emotional, and psychological integrity should be respected and upheld. This principle also recognizes the human capacity to self-govern and choose a course of action from among different alternative options.” This doctrine, grounded in both common and constitutional law, is recognized not only by courts in this country including the United States Supreme Court, but also around the world.
Amici, as organizations that advocate for the rights of women in pregnancy and childbirth, urge this Court to recognize that the right to informed consent is not diminished during pregnancy, and that the law does not tolerate violations of that right. This brief also examines the mechanisms by which such violations occur in maternity care and the harms that result. It explains that the lack of legal redress for such violations and resulting harms is associated with economic and liability factors that allow forced interventions to continue. Throughout this brief, personal narratives about forced maternity interventions illustrate the scope and impact of violations of informed consent. It is the hope of Amici that this brief will encourage judicial action to correct misunderstandings about the rights of pregnant women and thus incentivize maternity care providers to respect those rights.
II. Legal Recognition That Informed Consent Is Required During Maternity Care Would Have Widespread Positive Effects.
In law and bioethics, an individual’s right to bodily integrity and self-determination is absolute, even when the death of another is at stake. As the McFall v. Shimp court explained, in a case where one cousin sued another for potentially life-saving bone marrow:
“For our law to compel defendant to submit to an intrusion of his body would change every concept and principle upon which our society is founded. To do so would defeat the sanctity of the individual, and would impose a rule which would know no limits, and one could not imagine where the line would be drawn.”
The court refused to order forcible extraction of the bone marrow, even though it might have been life-saving, and it warned of the “revulsion to the judicial mind” that such forced procedure would cause, stating that it would “raise the spectre of the swastika and the Inquisition, reminiscent of the horrors this portends.”
Regrettably, the prospect of forced treatment, and its individual and societal repercussions, has failed to constrain the behavior of some hospitals and providers. Accounts received by Amici suggest that some obstetric providers believe they may ignore or override a woman’s explicit non-consent. Judicial action in this case would educate providers that informed consent and refusal rights apply with equal force throughout a woman’s life, including during labor and delivery.
The World Health Organization recently identified coercive and unconsented medical procedures in childbirth, like those illustrated in this brief and in Ms. Dray’s case, as breaches of women’s fundamental human rights. Consumer advocacy organizations, like Amici, have formed in response to such violations — violations that are not uncommon in this country. For example, a 2013 survey reported that 25% of women who had experienced an induction of labor or a cesarean section felt pressured to accept those interventions. A 2014 study found that women who perceived pressure to have a Cesarean section were more than five times more likely to have a one, more than six times more likely to have one with no medical basis, and nearly seven times more likely to have an unplanned cesarean. Moreover, 59% of women who received episiotomies did not give consent at all. Finally, 20-38% of women reported that the provider made the “final decision” about whether they would receive a planned cesarean surgery.
These numbers can be fully understood only by listening to the women they represent. Their words convey how the birth of a child can be experienced as assault. Women ask advocacy organizations if they have a legal right to refuse labor induction and surgery. An abstract right is a weak shield if maternity care providers do not believe that informed consent is required as part of the care they provide.
A. Clarification that the Right to Informed Consent and Refusal is Applicable During Maternity Care Would be Instructive.
Ms. Dray’s case and the personal narratives excerpted in this brief suggest that some maternity care providers and patients are unclear about the scope of rights to informed consent and informed refusal. For example:
During labor I had been pushing for about an hour when the Dr. told me he was going to give me an episiotomy, which I said “NO!” to. He did it anyway. This made the healing process much longer and more difficult, and it was totally unnecessary. I had said NO. He cut a part of my body AGAINST MY EXPLICIT INSTRUCTIONS. – C. S. (MO)
I was told if I hit the 40-week mark, I would be induced, no matter what. I did not know I could refuse any of her orders. – Anonymous 1 (TN)
… the doctor arrived, rushing into the ER and walked right up, w/out saying a word to me, sticking his arm in me (very painful!). After, he declared i was 12+cm dilated. He then looked at my husband, (who was being pushed to a corner, where i couldn’t even touch him, during all this) and i and said that he was “either going to take me in the next room and cut me open or he was going to use the vacuum extractor. Which is it?” I told him neither i nor our baby was in distress so there was no need for either one and that i wanted to proceed pushing naturally. He then repeated his threat, in which we both refused again. He then had four to five nurses hold me down while he forcibly used the vacuum! I tried to back away from it as i told him “no!” But he proceeded very brutally, lacerating my vaginal wall in the process. – K. G. (OH)
At some point while the midwife was checking me, she said that it might be time to break my water. I, in the vulnerable position of having someone’s hand already up my vagina, said, “Well wait, can we think about that first?” She said “I’m the one who will think about it” and then broke my water . . . ” – K. K. (NY)
I had expressly told my OB and the nursing staff that I did not, under any circumstances, want an episiotomy. During our pre-natal visits, I was assured by my OB that she would not perform the episiotomy . . . . My daughter’s head was crowning and at that moment, my OB said “I’m going to have to cut you.” and in that instant, she gave me an episiotomy. Later, after the birth, when she was stitching me up without any numbing medicine, I asked why she did it. Her reply was that it’s routine for every delivery! – D. M. (CO)
Women who attempt to exercise their right to informed consent in childbirth are too often told that they are “not allowed” to make decisions about their care due to hospital policy or “doctor’s orders.” When the standards of institutionalized maternity care leave no room for the legal right of a patient to decline interventions, the judiciary must declare that hospital policies do not trump the fundamental right to informed consent and refusal.
As soon as I entered my hospital room the nurse started putting an IV into my arm and I politely explained to her that I want a natural birth and I will not be using any forms of IVs, monitors, or anything confining me to my room so that I could walk the halls. She rudely replied “this is not an option, it’s hospital policy” and she went ahead and inserted the IV into my arm. Pitocin was given to me shortly after and I tried arguing that I did not want it because my contractions had already started but again they reminded me that I MUST have it because I was 2 weeks overdue. – B. S. C. (TX)
Only when my labor became quite fast and painful did I ask my husband to check the bag on the IV pole. He discovered that it was a bag of Pitocin, to which I had not consented. When we asked the nursing staff to remove the drug, we were told it was impossible to do so because the OB ordered it. – D. M. (CO)
B. Any Effort to Reduce the Rate of Surgical Births in This Country Must Ensure that Birthing Women Have a Right to Say “No” to Surgery.
Although the national C-section rate has risen from 4.5% in 1965 to 32.8% in 2012, increased surgeries have not improved outcomes. To the contrary, the United States is one of only eight nations with a rising maternal mortality rate. The CDC has urged that the C-section rate be reduced, and it has concluded that the state-to-state variations in rates of non-medically indicated cesarean surgery demonstrates that there is no systematic pattern of decision-making about its use. In other words, the variability of the c-section rate between states and providers appears to be random. Additionally, there is a little science and much personal provider preference behind the decision to perform a surgical birth. Indeed, “[m]any authors have shown that physician factors, rather than patient characteristics or obstetric diagnoses are the major driver for the difference in [C-section] rates within a hospital.”
The widespread violation of the patient’s right to refuse interventions, in a maternity care system with a massive overutilization of expensive interventions and some of the worst perinatal outcomes in the developed world, is nothing short of alarming. No one should face being taken captive by the medical system. No one should be operated on without their consent. We do not allow such infringements on men, non-pregnant women, parents, or the dead – even the procurement of life-saving organs requires proxy consent. It cannot follow, then, that society imposes a special duty on pregnant women to relinquish their civil rights to bodily integrity, autonomy, and informed consent whenever a physician demands. The American College of Obstetricians and Gynecologists agrees:
“Pregnant women’s autonomous decisions should be respected. Concerns about the impact of maternal decisions on fetal well-being should be discussed in the context of medical evidence and understood within the context of each woman’s broad social network, cultural beliefs, and values. In the absence of extraordinary circumstances, circumstances that, in fact, the Committee on Ethics cannot currently imagine, judicial authority should not be used to implement treatment regimens aimed at protecting the fetus, for such actions violate the pregnant woman’s autonomy.”
The prospect of violations of informed consent being permitted to continue with impunity – as a finding of no liability in the Dray case would essentially validate – should alarm us all, whether pregnant or not. These violations, far from affecting only pregnant or laboring women, speak to the universal right to control our own bodies and to maintain agency and dignity, even in vulnerable moments. They call into question whether courts will adhere to the basic principle of physical autonomy in American law, and enforce that principle with a finding of liability and damages. The core principle behind the fundamental duty of care that runs from doctor to patient is “that every human being of adult years and sound mind shall have the right to determine what shall be done with his own body.” Every human being. Including pregnant women.
I must stop and say I am stressed writing about this because I feel betrayed. I feel betrayed by my women doctors. I feel most betrayed by the Black woman resident who I thought would be my ally but she was my enemy. Later the Black woman doctor came back to check on me and recommended they use a buzzer on my stomach to awaken the baby. I was like, NO! She turned to my husband and said you need to talk to your wife. (You want my husband to go against my wishes? This is my body! I never said this while she was in the room. I am shy) The baby is not responding, she said. I asked AGAIN, Is she in danger? No but she needs to wake up. You are not putting that on my belly. That is not natural. If she is asleep there must be a reason. She asked my how old I was. I told her 23. Later I realized the doctor may have thought I was younger than I was (she had my chart, she could have looked it up) and that I didn’t know what I was talking about. I think she assumed I was uneducated about birth. My sister! Why? – C. D. F. (MI)
 American Medical Association, Opinion 8.08 – Informed Consent (June 2006), http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion808.page?.
American Medical Association, Informed Consent (Mar. 7, 2005), http://www.leg.state.nv.us/Session/77th2013/Exhibits/Senate/HHS/SHHS1054M.pdf.
American Medical Association, Opinion 10.02 – Patient Responsibilities (June 2001), http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion1002.page.
See Cruzan v. Dir., Mo. Dep’t. of Health, 497 U.S. 261, 271 (1990) (noting that “most courts have based a right to refuse treatment either solely on the common law right to informed consent or on both the common law right and a constitutional privacy right.”).
See, e.g., id. at 278 (competent person has a constitutionally-protected liberty interest in refusing unwanted medical treatment).
See, e.g., Konovalova v. Russia, no. 37873/04, at 5-8 (Eur. Ct. H.R. 2014) (holding that under the Right to Privacy and informed consent, women can refuse the presence of medical students when they give birth) (noting the importance of informed consent in international authority, including The Convention for the Protection of Human Rights and Dignity of the Human Being, The Committee on the Elimination of Discrimination Against Women, and A Declaration on the Promotion of Patients’ Rights in Europe).
Id. at 92.
World Health Org., WHO Statement: The prevention and elimination of disrespect and abuse during facility-based childbirth, 1 (2014) [hereinafter WHOPrevention], http://apps.who.int/iris/bitstream/10665/134588/1/WHO_RHR_14.23_eng.pdf?ua=1&ua=1.
Eugene R. Declercq, et al., Listening to Mothers III: Report of the Third National U.S. Survey of Women’s Childbearing Experiences, Childbirth Connection, 35 (May 2013) [hereinafter LtM III], http://transform.childbirthconnection.org/wp-content/uploads/2013/06/LTM-III_Pregnancy-and-Birth.pdf.
Judy Jou et al., Patient-Perceived Pressure from Clinicians for Labor Induction and Cesarean Delivery: A Population-Based Survey of U.S. Women, Health Serv. Res. (Sept. 2014). http://www.ncbi.nlm.nih.gov/pubmed/25250981.
Id. at 38.
Joyce A. Martin et al., Births: Final Data for 2012, Table 21, Nat’l Vital Stat. Rep., Centers for Disease Control and Prevention (Dec. 30, 2013), http://www.cdc.gov/nchs/data/nvsr/nvsr62/nvsr62_09.pdf – table21.
The Joint Commission, Specifications Manual for Joint Commission National Quality Measures (v2013A1), Perinatal Care/Cesarean Section, (2013) [hereinafter Joint Commission], https://manual.jointcommission.org/releases/TJC2013A/MIF0167.html
Anna Almendrala, The U.S. Is The Only Developed Nation With A Rising Maternal Mortality Rate, The Huffington Post (May 19, 2014, 8:12 AM), http://www.huffingtonpost.com/2014/05/19/us-maternal-mortality-rate_n_5340648.html
Wanda D. Barfield, CDC Expert Commentary, Reducing the C-section Rate (Aug. 25, 2014), http://www.medscape.com/viewarticle/830154.
See Steven L. Clark et al., Variation in the Rates of Operative Delivery in the United States, 196 Am. J. Obstetrics & Gynecolology 526e1 (2007). http://www.ncbi.nlm.nih.gov/pubmed/17547880. (noting the variations within geographical locations of c-section rates were random and attributable to lack of standardized decision-making and appropriate tools for making these decisions at patient’s bedside).
 American College of Obstetricians and Gynecologists Committee on Ethics, Committee Opinion No. 321: Maternal Decision Making, Ethics, and the Law (2005). http://www.acog.org/-/media/Committee-Opinions/Committee-on-Ethics/co321.pdf.
Schloendorff v. Soc’y of New York Hosp., 105 N.E. 92, 93 (N.Y. 1914) (Cardozo, J.).