Know Your Right to Informed Consent

Intro

You have the right to informed consent. This post will help you understand that right, so you are empowered to make the best knowledge-based decisions for you and your family in birth.  

Dr. Julie Cantor is near and dear to the Needed Community. She is an expert on issues at the intersection of medicine and law, with a penchant for reproductive rights. She advocates for related issues through representing clients, teaching, and writing, including through publications in the New England Journal of Medicine. In line with Needed’s focus on integrating multiple perspectives, her work beautifully weaves multiple disciplines, including medicine, medical ethics, art, history, law, and modern culture. A faculty member at the UCLA School of Law, Dr. Cantor is a graduate of Stanford University (BA / MA), Berkeley Law (JD), and the Yale School of Medicine (MD). She is also the founder of Harlen, a brand that elevates women’s work bags to Modern Careerpieces—handcrafted in Italy with exclusively Italian materials—and holds fast to a mission to advocate for girls' education, empowerment, and equality.

Why Informed Consent?

In a typical American birth, even the most well-intended clinicians may intervene unnecessarily with medication, procedures, and other interventions that are not supported by medical evidence. The practices can be more steeped in culture than data. Frustratingly, these interventions may not improve outcomes but, conversely and ironically, may lead to harms. American law ensures your right to informed consent; in other words, you have the right to make an informed decision about these interventions. But if you are not aware of your right to information and to consent, or if you feel coerced, you may end up in a situation that you really didn’t choose. Knowing your rights is essential so you and your team can get the information you need and support you in exercising your rights. 

What is Informed Consent? 

Informed consent means that your clinician has explained the proposed intervention, reasonable alternatives to it, and the material risks, benefits, and uncertainties related to each alternative, including risks of foregoing treatment altogether. You have the right to refuse medical care and to understand the risks of doing so. If you have refused a particular intervention, you still have the right to change your mind and accept care. And, if you have given your consent to a particular intervention, you still have the right to change your mind, revoke your consent, and refuse care. You are in the driver’s seat when it comes to making decisions about your body.

It’s also really important to understand that true informed consent is not just signing a form; it is a process. While the American College of Obstetricians and Gynecologists Committee on Ethics has noted in its Opinion No. 390 that informed consent is “the willing acceptance of a medical intervention by a patient after adequate disclosure by the physician of the nature of the intervention with its risks and benefits and of the alternatives with their risks and benefits,” it is theoretically envisioned as a two-way conversation and a respectful process.

Are clinicians required to obtain informed consent for care?

Yes. As the American Medical Association’s Code of Medical Ethics Opinion 2.1.1 states, “Informed consent to treatment is fundamental in both ethics and law. Patients have the right to receive information and ask questions about recommended treatments so that they can make well-considered decisions about care.”  Physicians have both ethical and legal requirements to shepherd patients through treatment — here, prenatal care and birth — with information, respect, and consent. Empowered patients can serve on a check here and ask for the information they need to make an informed decision.

Does informed consent change in pregnancy?

Some people like to debate this point, but, in my view, this is not debatable. Women do not give up their rights to autonomy and bodily integrity when they become pregnant. Otherwise they become little more than fetal vessels. In American law, we do not have to sacrifice our bodies to save others, and, as the Court of Appeals for the District of Columbia, one of the most esteemed federal circuit courts, has explained, “a fetus cannot have rights in this respect superior to those of a person who has already been born.” In re A.C., 573 A.2d 1235, 1244 (D.C.App. 1990). So if we do not have to submit to state-issued intrusions of our bodies to save others by, for example, donating bone marrow or a kidney, we cannot somehow require more of pregnant women. They are not a special separate class of people with lesser rights than American law guarantees for all other adults. And that position is in line with, among other things, Opinion No. 664 of the American College of Obstetricians and Gynecologists Committee on Ethics, which notes, "Pregnancy does not lessen or limit the requirement to obtain informed consent or to honor a pregnant woman’s refusal of recommended treatment.”

Is this the case everywhere in the United States?

There have been a number of cases, even recently, where physicians and hospitals “overrode” a pregnant patient’s informed refusal of care. Three come to mind immediately.  One happened in 2014 at a hospital on Long Island, where a woman named Rinat Dray did not give her consent for a c-section, and her physicians operated anyway. A similar forced c-section case arose in the late 1990s at Tallahassee Memorial Hospital in Florida.  That patient, Laura Pemberton, later sued the hospital in federal court for violating her constitutional and other rights. She lost that case and did not appeal to a higher court. Tallahassee Memorial Hospital was also the site of another forced care case, that of Samantha Burton. The hospital obtained a court order from a state court to force her to remain in the hospital on bed rest — a practice that, itself, lacks data to support it — and force her to submit to any intervention recommended by a staff obstetrician. She sued in state court, and that opinion suggests that if the fetus is proven to be viable that the mother’s rights may be “balanced” against the fetus’s “rights,” potentially leading to forced care. So women should be on notice of these cases and review my recommendations below about the best ways to avoid these terrifying situations.

Are there any other exceptions to informed consent?

Yes. A few that apply here are, first, the exception that a relatively simple and common intervention may not merit a substantial discussion. Think about a blood test. A physician does not generally discuss the risks and benefits of one with you because they are obvious and straightforward. Another relevant exception is the emergency exception. Here, people who come into the hospital in dire states of emergency need to be stabilized, and that’s the immediate concern — not discussing the pros and cons of, say, putting a tube down your trachea so you can breathe. Though emergencies can arise during birth, the emergency exception envisions a patient who is unconscious or otherwise unable to give consent — not someone who is competent but refuses care. In other words, the emergency exception should not be used by clinicians as an end-run around informed consent requirements.  

Where does the right come from?

The right to informed consent is rooted in the common law — judge-made law found in both state and federal case opinions. In American law, the right can be found in a 1914 case from the Court of Appeals of New York, that state's highest court, in which Judge — later Justice — Benjamin N. Cardozo wrote, "Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient’s consent commits an assault, for which he is liable in damages.”  Schloendorff v. Society of New York Hospitals, 105 N.E. 92, 93 (N.Y. 1914). In some states, statutes also codify the right. In California, the key case on the issue comes from the California Supreme Court. In 1972, it held that a physician is required to disclose “all information relevant to a meaningful decisional process.” Since then, California's appellate courts have built on that framework, finding, for example, that a doctor must disclose “all material information necessary to the decision to undergo the procedure, including a reasonable explanation of the procedure, its likelihood of success, the risks involved in accepting or rejecting the proposed procedure, and any other information a skilled practitioner in good standing would disclose to the patient under the same or similar circumstances.”  Mathis v. Morrissey, 13 Cal.Rptr.2d 819, 827 (Cal. Ct. App. 1992).

Do you have any recommendations for women in making sure informed consent is carried out?

Your best defense is a good offense, so assemble your team early, even before you are pregnant.  A trusting relationship with open communication appears to be an important factor in a satisfying empowered birth experience, so finding your people and seeking care from them — for example, well-woman care from a midwife or an obstetrician-gynecologist — offers a way to begin a relationship and assess a practice style without the time pressure of a pregnancy.

When assembling that team, ask questions.  Do not be afraid or ashamed to present hypothetical scenarios in which you might not consent to routine but non-evidence-based care, like routine electronic fetal monitoring.  Would the clinician be amenable to intermittent monitoring? If not, that may be important information for you to consider.

Also, choose your place of birth wisely.  Look up their rates of c-sections if you are concerned about unnecessary interventions.  And ask you team if they will support you if the in-house staff disagrees with a care decision that you have chosen?  Medicine is a hierarchy, so make sure that your clinician has the power to trump an in-house labor and delivery nurse’s recommendation, for example, if it is not aligned with your wishes.

Ultimately, be a savvy consumer.  Know your rights and your choices, and surround yourself with people who will support your decisions and whose judgment you trust.

Do you have suggestions for additional research on the subject?

Here are some resources on informed consent, forced care, and empowered birth in the United States. Starred items are my favorites.  These lists are not exhaustive.

Documentaries

• ***Born in the USA 
• The Mama Sherpas
• Birth Story: Ina May Gaskin & the Farm Midwives 
• The Business of Being Born 

Books

• ***Jennifer Block, Pushed: The Painful Truth About Childbirth and Modern Maternity Care
• ***Jessica Mitford, The American Way of Birth
• Suzanne Arms, Immaculate Deception II: Myth, Magic and Birth
• Rachel Roth, Making Women Pay: The Hidden Costs of Fetal Rights
• Henci Goer & Rhonda Wheeler, The Thinking Woman’s Guide to a Better Birth
• Marsden Wagner, Born in the USA: How a Broken Maternity System Must Be Fixed to Put Women and Children First
• Edwin van Teijlingen, Midwifery and the Medicalization of Childbirth: Comparative Perspectives

References and Other Resources

ACOG Committee Opinion No. 390, Ethical Decision Making in Obstetrics and Gynecology (2007, reaffirmed 2019)

ACOG Committee Opinion No. 439, Informed Consent (2009, reaffirmed 2015)

ACOG Committee Opinion No. 664, Refusal of Medically Recommended Treatment During Pregnancy (2016)

AMA Code of Ethics Opinion 2.1.1

California Civil Jury Instructions No. 532 Informed Consent — Definition (2017 edition)

California Code of Regulations § 784.29, Informed Consent to Medical Treatment

California Hospital Association Consent Manual, 43rd Edition (2016)

Cobbs v. Grant, 8 Cal.3d 229 (1972)

McFall v. Shimp, 10 P.D & C.3d 90 (Allegheny County Ct. 1978)

In re A.C., 573 A.2d 1235 (D.C.App. 1990)

Schloendorff v. Society of New York Hospitals, 105 N.E. 92, 92 (N.Y. 1914)