Informed consent is a foundational element of the ethical practice of modern medicine. Its purpose is to facilitate care in a manner that honors the autonomy of the patient while incorporating the medical expertise of the clinician. Informed consent is a process in which a patient and healthcare provider engage in information exchange and discussion about the patient’s condition and the nature of the proposed treatment. The clinician should identify the risks, benefits, and alternatives, including lack of treatment, thereby empowering the patient to be an active participant in her medical care. When engendered by a strong informed consent process, patient–physician communication has been associated with more realistic patient expectations, improved satisfaction, and a lower rate of medical malpractice claims.

Evidence of the physician’s engagement with the informed consent process may be found among consultation notes (paper or electronic), informational aids shared with patients, and signed consent forms acknowledging that the discussion has occurred. The act of reviewing and signing a written consent form ensures an opportunity for the patient to ask questions. It also provides additional documentation that consent was obtained. A signed consent form is not necessary for valid informed consent to exist; verbal consent from the patient is valid and sufficient. However, in instances in which the patient has not signed an informed consent form, anesthesia providers should nevertheless carefully document that a discussion of risks and benefits of anesthesia occurred, and that verbal informed consent was obtained before administration of anesthesia.

A robust and meaningful informed consent process includes the following hallmarks:

• 1.

  Disclosure of information: The physician must disclose the proposed treatment, its alternatives, including no treatment, as well as the risks and benefits.

• 2.

  The disclosure should be tailored to the patient and clinical situation.

• 3.

  The discussion should be provided in the patient’s preferred language and using accessible terminology rather than medical jargon.

• 4.

  A patient must have the capacity to understand the nature and consequences of the proposed treatments and their alternatives, and the ability to weigh the information to make a decision.

• 5.

  The patient’s decision must be given voluntarily, free from coercion.

• 6.

  Consent can be withdrawn at any time before the therapy/procedure has occurred.

Legal precedent established through case law provides guidance as to which risks ought to be disclosed, applying a standard that has come to be known as the “reasonable person” test. This standard, applicable in most states in the United States, requires disclosure of those risks that a “reasonable patient would consider material to the decision of whether to consent to a procedure offered.” In practical terms, this has been held to require disclosure of commonly occurring risks, as well as those risks that are rare but severe. Dornette suggested that significant risk is one that poses a high (10% or greater) incidence of a transient complication or a low (0.5% to 1% or less) incidence of permanent consequences. Broaddus and Chandrasekhar have recommended discussion of risks with high incidence, high morbidity, or adverse fetal effects. Investigation into the nature and prevalence of risks associated with obstetric anesthesia have been explored in a 5-year, multicenter study that examined 257,000 anesthetics. Of 187 serious complications that were identified, 85 were related to anesthesia. The most frequent serious events included high neuraxial blockade, unrecognized spinal catheter, and respiratory arrest.

Adequate informed consent does not require disclosure of every possible risk no matter how slight; overdisclosure can produce patient anxiety and confusion, and may overwhelm and have effects of negative suggestion, termed the “nocebo” effect. Some clinicians have questioned whether such detailed risk disclosure is even consistent with the dictum primum non nocere , and have suggested the impetus for thorough risk disclosure stems predominantly from medicolegal threat and fear of liability rather than truly exchanging relevant information in the interest of patient autonomy. These are complex questions, and clinical nuance precludes a universally applicable directive of how to provide optimal information disclosure in the clinical setting.

Therapeutic options and their associated risks and benefits should be disclosed to the patient; however, when a patient’s clinical condition strongly favors a particular course of treatment, that information should be clearly communicated. Increasingly, as the patient–physician model evolves away from a paternalistic structure to one of shared decision-making, uncertainty may arise regarding what limits, if any, ought to exist regarding patient decision-making. It can be difficult to balance competing interests, and there may be clinical scenarios in which a patient’s expressed wishes conflict with medically recommended care. It is important to recognize that patient autonomy in medical decision-making does not compel clinicians to offer or perform therapies/procedures that are unreasonable or not within the standard of care.

Shared decision-making is a process by which the physician expands upon the requirements of informed consent to establish a collaborative decision-making partnership with the patient. The shared decision-making approach involves medical providers and patients making healthcare decisions together. This communication technique is central to patient- and family-centered care; it is a major component of healthcare quality and safety and is embraced as a quality indicator. The medical providers explain the risks and benefits of each intervention and ensure that patients are fully informed about their options. They also help the patient elucidate her values and preferences. Explicitly asking “what matters to you?” can help the team align its interventions. Patients will reach a decision with their medical provider that aligns with what they feel is most congruent with their preferences. Meaningful dialogue is at the core of this relationship. The Agency for Healthcare Research and Quality outlines a five-step SHARE approach ( Table 32.1 ).

Conversations may also involve family members, friends, and other members of the care team, according to the preferences of the patient. Clear communication is critical and requires careful attention to both verbal and nonverbal cues. Explanations must avoid language that is overly technical and clinical but also remain specific enough to meaningfully provide an understanding of the complex clinical decisions faced by the patient. Through this approach, providers can develop a trusting connection with the patient and more effectively communicate the evidence for healthcare decisions.

Frequently, decision aids are utilized during the conversation to facilitate the patient’s understanding of the medical information presented. Decision aids used to facilitate shared decision-making are available online, on paper, or on video. A metaanalysis of 105 trials published through 2015 demonstrated that the use of decision aids resulted in increased patient knowledge, more accurate perceptions of treatment risks, better alignment of treatments with patient values, a decreased sense of conflict for patients, and greater patient participation. Most notably, decision aids improve outcomes for those with socioeconomic disadvantage, low literacy, and low education. These aids serve to increase knowledge, participation in decision-making, decision self-efficacy, and preference for collaborative decision-making; inform choice; and reduce decisional conflict. Just as cognitive aids can help guide operating room teams through the critical steps of a crisis, decision aids help patients absorb clinical evidence and communicate their preferences. The use of decision aids also helps clinicians set aside their traditional paternalistic role to be partners and coaches in the patient-centered process, and to present information that is easier for patients to understand. Decision aids can facilitate properly informing patients so that they can choose between various options (e.g., between different methods of pain management, between neuraxial and general anesthesia) based on their own values and preferences, even when the decision differs from their clinician’s preferred decision.

The process of shared decision-making appears to increase patients’ subsequent participation, compliance, and self-monitoring. According to observations, focus groups, and questionnaires conducted as part of the Making Good Decisions in Collaboration (MAGIC) program in the United Kingdom, even when shared decision-making conversations are imperfect or when there is a lack of complete agreement on best choices, the process of bringing perspectives together improves the likelihood that decisions are more informed and better accepted by patients, families, and staff. Using a “plan-do-study-act” rapid-cycle approach, MAGIC researchers determined that incorporating effective shared decision-making requires a holistic bundle of interventions to drive culture change and to establish a supportive healthcare delivery system. Younger patients, women, and those with more education are most likely to prefer shared decision-making, according to a study of anesthesia decision-making in Germany that measured preferences using the autonomy preference index and the preference for involvement in care scale. Based on a Swiss study of 197 clinician-patient dyads, anesthesia clinicians frequently overestimate how much shared decision-making occurs. In this study, Flierler et al. showed that 94% of surgical patients wanted to be involved in preoperative anesthetic management decisions. Patients had a stronger desire for a “balanced” decision-making process, wherein each party would have an equal contribution to decision-making (desired by 65% of patients versus 32% of clinicians). Satisfaction decreased when patients perceived insufficient opportunity for involvement, and when anesthesia providers underestimated patient preference for shared decision-making.

Shared decision-making not only improves provider–patient communication but has also been shown to promote desirable clinical outcomes. In a study by Prabhu et al., 90% of participants reported being satisfied with their pain management through a shared decision-making approach, even though providers ultimately reduced opioid prescribing by 50%. Patients cited the education regarding expectations and the risks and benefits of oxycodone as the most helpful part of the process. A 2015 systematic review of shared decision-making identified a positive relationship between shared decision-making and patient outcomes for 42 of 97 unique outcomes among 39 studies that met inclusion criteria. The authors noted differences in the way shared decision-making was measured (patient-reported, observer-reported, and clinician-reported). Regardless of measurement methods, 54% of affective-cognitive outcomes were positively associated with the patient’s perception that shared decision-making had occurred; such outcomes included improved patient satisfaction, resolved concerns and anxieties about illness, resolved decisional conflict, improved knowledge, and enhanced confidence in the decision. Thirty-seven percent of the behavioral outcomes studied were improved with the presence of shared decision-making, including greater medication adherence. Twenty-five percent of the clinical outcomes studied were improved when there was shared decision-making, with specific improvements in patient ratings of overall health, quality of life, depressive symptoms, and physiologic measures such as blood pressure. Evidence for improved clinical outcomes appears most robust for patients with chronic conditions that require self-management, such as hypertension. Certainly, unsatisfactory communication with patients has been associated with treatment noncompliance in diabetes mellitus, asthma, and chronic disease.

A potential disadvantage to a shared decision-making approach is that it takes time to engage patients in a lengthy discussion. An anesthesia provider may not be able to accomplish such a consultation while on a busy obstetric unit, or when consulted to facilitate emergency obstetric interventions. Patients who are in severe pain or active labor may not want to engage in the shared decision-making process and feel burdened by making multiple medical decisions at that time. Long-standing practices of medical paternalism and unethical practices by the medical establishment, particularly in people of color, may hamper true shared decision-making.

Ideally, patients with complex needs are referred to an anesthesia clinic during the antepartum period. However, even when meeting the patient for the first time on the obstetric unit, it is frequently possible to employ a shared decision-making approach at the time of hospital admission for a high-risk antepartum condition, for an induction of labor or early in labor, or prior to any need for labor analgesia. Shared decision-making is a particularly useful way to empower women who experience an unplanned birth outcome; examples include decisions about the primary anesthetic type for dilation and curettage, therapeutic management of post–dural puncture headache, or management of inadequate labor epidural analgesia.

Trauma-informed care is shared decision-making with an awareness and understanding of how previous individual or collective trauma impacts an individual’s mental, physical, social, or emotional health. The US Substance Abuse and Mental Health Services Administration (SAMHSA) defines trauma-informed care using four general principles of care: (1) realize the pervasive and widespread nature of trauma in our society; (2) recognize what unresolved trauma looks like in survivors (patients, family members, staff); (3) respond by incorporating knowledge into new practices, policies, and protocols; and (4) resist retraumatization of survivors. More recently, the US Centers for Disease Control and Prevention expanded on these concepts to establish six guiding principles for a trauma-informed approach to care, including a focus on (1) safety; (2) trustworthiness and transparency; (3) peer support; (4) collaboration and mutuality; (5) empowerment, voice, and choice; and (6) respect and understanding for an individual’s cultural, historical, and gender identity. Trauma-informed care involves an approach to care, including physical and behavioral healthcare, which commits to these principles, while also supporting an individual’s resilience and recovery when possible.

One of the first crucial steps in becoming a trauma-informed provider is to become trauma-aware. Providers must realize that trauma not only exists, but is pervasive in society, and that certain types of interpersonal trauma disproportionately affect women, especially Indigenous women and women of color, members of the LGBTQIA+ community, and individuals with intellectual or physical disabilities. These include childhood sexual trauma, adult sexual assault and rape, military sexual trauma, physical violence from intimate partner violence, loss of bodily autonomy due to state-mandated pregnancy where abortion is illegal, and birth trauma. The statistics regarding these types of trauma are sobering: approximately 20% to 33% of women will be the victims of childhood sexual trauma, approximately 33% of female veterans will self-report a history of military sexual trauma, and approximately 25% of women will experience severe physical violence from an intimate partner in their lifetimes. Pregnant adolescent patients have a mean Adverse Childhood Experience score of 5.1/10 when screened for 10 common types of childhood maltreatment identified in previous research. Birthing women who have a history of interpersonal trauma are at an increased risk of having a negative birth experience and developing postpartum mental health conditions, such as childbirth-related posttraumatic stress disorder (PTSD).

Trauma, however, is not limited to an individual’s life experience before pregnancy. It can occur de novo during childbirth. It is imperative that providers recognize the various types of birth trauma an individual may experience—up to 44% of birthing women report their birth experiences as traumatic. Numerous studies have identified intrapartum events associated with a traumatic birth experience and an increased risk for postpartum PTSD, including operative birth, obstetric emergencies, and infant complications. Postpartum hemorrhage, emergency responses, and early pregnancy loss have also been identified as predictors of postpartum mental health disorders, in addition to anesthesia-related events such as intraoperative pain, traumatic neuraxial block placement, severe post–dural puncture headache, and neurologic injuries. Importantly, an identifiable complication need not occur for an individual to perceive childbirth as traumatic. Recent studies suggest that a patient’s negative subjective experience of childbirth is a significant contributor to a traumatic experience and the subsequent development of postpartum PTSD. Other intrapartum factors such as minimal support during labor and delivery, loss of control, and fear of childbirth have also been identified as significant predictors of postpartum PTSD. Shared decision-making in subsequent pregnancies with individuals who have experienced birth trauma requires a thorough understanding of the traumatic nature of these events and the negative impact they may have on the patient’s current psychological state.

Awareness of the impact of trauma is essential for shared decision-making, but it is also crucial that providers apply this knowledge to clinical practice. SAMHSA’s fourth pil-lar of trauma-informed care states that all providers should resist retraumatizing survivors of trauma; however, the role of the anesthesia provider in preventing retraumatization has not been clearly elucidated. Adding to the challenge of avoiding retraumatization to this patient population is the fact that identification of survivors is not straightforward. Although universal screening for trauma is either required or recommended for obstetric providers by multiple agencies and organizations, including the American College of Obstetricians and Gynecologists (ACOG), it is not routinely performed, and many survivors of trauma have never voluntarily disclosed their history. Furthermore, there is no universally accepted screening tool to facilitate this process. However, various physical, psychological, and behavioral conditions have been associated with unresolved traumatic stress, and these can serve as an indicator of patients who may have suffered trauma ( Box 32.1 ). Although these conditions can raise suspicion for the presence of trauma in an individual’s life, they are not always accompanied by trauma and therefore should only be used to guide further conversations.

Inquiring about a history of trauma is not exclusively the responsibility of obstetricians, and anesthesia providers may find themselves in a position to either elicit this history or receive a patient disclosure. The National Health Service England and the UK Center for Early Child Development, in an effort to implement trauma-informed care practices, put forth general guidelines to help any provider when eliciting a trauma history or responding to a disclosure. These include:

• •

  Ask birthing women how their traumatic past continues to affect them generally and what they might need from you;

• •

  Avoid triggering PTSD reactions by learning potential triggers;

• •

  Assume, in the absence of disclosure, but in the presence of PTSD reactions (e.g., exaggerated startle, agitation, panic with the use of restraints, avoidance of male providers) that the birthing woman could be a survivor; and

• •

  Acknowledge the long-term effects of trauma, and that they are not alone and that you and/or others can help.

An alternative approach is for providers to assume that all birthing women have a history of trauma, thereby eliminating the need for screening. Shifting a patriarchal approach to care from “this is what we are doing today” to “what can we do together to achieve a mutually agreeable goal,” while focusing on what makes individuals feel safe, building trust, allowing them some choice and control, and respecting their autonomy, is applicable and valuable for all birthing women. Although available research is limited, the application of trauma-informed care principles in obstetric settings is not known to be associated with any negative consequences. Further, recent studies have shown that offering trauma-focused interventions such as psychotherapy and eye movement desensitization and reprocessing during pregnancy do not increase risk for maternal or fetal harm.

Trauma is unique to each individual; thus, it is crucial to direct shared decision-making and trauma-informed care approaches appropriately to the patient’s needs. Practice recommendations surrounding the peripartum period are based on general trauma-informed care principles and the authors’ extensive work with trauma survivors ( Box 32.2 ).

For the informed consent process to be both meaningful and legally adequate, the clinician needs to confirm that the patient has the capacity to make autonomous decisions about her care. Capacity requires the ability to (1) understand the relevant information, (2) appreciate the situation and its consequences, and (3) appreciate the reason for treatment options, and (4) communicate a choice. Competence to participate in legal proceedings is distinct from capacity to make medical decisions, though the two terms are often erroneously conflated.

Characteristics such as an individual’s level of education, preferred conversational language, and cultural background may influence how the individual processes information, but do not impair capacity to consent. It is the clinician’s responsibility to make the information accessible and understandable. Plain language should be utilized and technical medical jargon minimized ( Table 32.2 ). The consent process should occur in the patient’s preferred language with the use of a certified medical translator. Translation services are a federal legal requirement for healthcare in the United States (Title VI of the Civil Rights Act of 1964).

A patient’s decision-making capacity may be compromised temporarily or permanently by her condition, medications, or a combination of the two. Capacity to make a medical decision is decision-specific and context-specific; a patient may have capacity to make some medical decisions but might lack the capacity to make more complex medical decisions. Frequent capacity reassessment will maximize patient autonomy, particularly in cases of temporary impairment.

Any determination of clinical incapacity should be clearly documented in the medical record, including the clinical factors supporting the determination. State requirements vary; however, they commonly require the consensus of at least two treating clinicians. By definition, incapacitated patients cannot give informed consent. In emergency situations, physicians can provide necessary care under the doctrine of implied consent , which presumes that a reasonable person would have consented to the anticipated treatment (see later discussion).

Absent an emergency situation, incapacitated patients require a surrogate decision-maker who can engage with the informed consent process as if they were the patient. Legally, it is necessary both to establish the need for a surrogate decision-maker and to identify the most appropriate person to serve in this role. In some circumstances, the patient may have an advanced directive document that identifies a surrogate decision-maker. Frequently, people of child-bearing age do not have an advanced directive, and the surrogate decision-maker must be identified according to state statutory guidance. Some states provide clear statutory algorithms, typically reflecting relational hierarchy, while others provide only vague guidance as to appropriate surrogate decision-makers.

In cases of prolonged or permanent impairment, a court may make a determination of legal incompetence, and vest a surrogate with authority to make many kinds of decisions on behalf of the patient. The scope of decision-making authority varies, but often includes medical decision-making. Such legal determinations are usually made in the course of a petition for guardianship filed on behalf of the allegedly incapacitated individual, supported by evidence of clinical incapacity. If a court has determined that a person is legally incompetent and has named a surrogate decision-maker, decision-making authority can be revoked only if the patient or some other third party goes back to court and challenges the determination, either because circumstances have changed and the patient has regained capacity, or because the patient or third party appeals the initial determination of the court.

Surrogate decision-makers use a “substituted judgment” standard when making decisions on behalf of the patient. This standard obligates the surrogate to make the decision they believe the patient would have made, rather than the decision the surrogate prefers, and rather than the decision that might be otherwise deemed in the patient’s best interest. “The surrogate decision-maker (judge or guardian) should attempt to determine what the incapacitated person would decide regarding the proposed treatment or procedure were he or she competent.” When it is impossible to determine what decision the patient would have made, and there is little or no collateral information to help guide the surrogate, it may be necessary to switch to a “best interest” standard . If the surrogate appears to be unable to carry out this obligation, the surrogate’s authority for decision-making may be challenged, either through institutional processes or through the courts. Institutional ethics committees may be a useful resource in navigating questions of surrogate decision-making.

Highly complex decisions, such as those pertaining to withdrawal of life-sustaining treatment, change in resuscitation/code status, or major surgery, may be considered as “extraordinary” measures, and in some instances may warrant a multidisciplinary evaluation, occasionally even necessitating court involvement. The necessity to return to court to request specific authority for these “extraordinary” decisions is driven by state law, and so it is important to determine the breadth of a surrogate decision-maker’s authority to consent to various treatments and care plans within the laws of the state in which the treatment is being provided. Some patients may have identified a surrogate decision-maker through prior establishment of an advanced directive document, such as a durable healthcare power of attorney. Some advanced directives provide very specific guidance and limitations on the authority of the surrogate decision-maker, while others do not. It is important to determine whether an advanced directive exists and to consult the document for guidance.

There are unique challenges to obtaining consent and engaging in shared decision-making in the labor and delivery setting. These include balancing competing interests of the mother and fetus, the interaction with distressed patients who can be part of a complex family system, and interdisciplinary collaboration during rapidly evolving clinical situations. The anesthesia provider must work quickly to establish trust, elicit preferences for information and decision-making, and tailor shared decision-making to the patient, while coordinating decisions with other members of the interdisciplinary care team. This is no easy task. Misunderstandings, unmet expectations, patient dissatisfaction, and liability are potential outcomes.

Most women prefer to learn about labor analgesia options from their healthcare providers in the second or third trimester. However, not all obstetric providers are able to provide robust discussions regarding analgesia and anesthesia for labor and delivery in the prenatal period. Historically, consent for anesthesia was incorporated into consent for surgery, and direct participation of the anesthesia provider in the consent conversation was not mandated. Now, most states require separate consent conversations (and forms) for surgery and anesthesia procedures. Regardless of state mandate, a personalized consent conversation with the patient is important for optimal care and helps to establish the therapeutic patient–physician relationship. A good therapeutic relationship has been shown to protect against future medicolegal liability. This separate, focused discussion on the benefits and risks of anesthesia provides a unique opportunity to address misconceptions. In a survey study of 509 English-speaking parturients (63% White, 23% Hispanic, 14% African-American) admitted to a single institution, Toledo et al. showed that 39% of participants expressed concerns regarding neuraxial anesthesia. These ranged from general misunderstandings about the anesthetic (e.g., epidural analgesia slows down labor or causes cerebral palsy), fears about long-term complications of the procedure, and lack of trust in providers, to concerns regarding fetal effects of medications administered in the epidural space. Ideally, informed consent discussions about anesthesia services begin with an antepartum consultation or with the admission history and physical examination, and address possible delivery scenarios and corresponding anesthetic options in general terms. This conversation opens an ongoing dialogue to support shared decision-making, which continues throughout the hospitalization for delivery.

Some have questioned whether receiving information during labor influences a patient’s ability to understand and recall the discussion, and what mode of communication is most effective. To evaluate the ability of laboring women to recall the details of a preanesthetic discussion, and to determine whether verbal consent alone or a combination of verbal and written consent provided better recall, Gerancher et al. randomly assigned 113 laboring patients to one of two groups, those from whom verbal consent alone was obtained and those from whom verbal consent plus written consent was obtained. The verbal-plus-written consent group had significantly higher median (range) recall scores (90 [80 to 100]) than the verbal-only group (80 [70 to 90]). Only two patients (both in the verbal group) believed that they were unable (because of either inadequate information or situational stress) to give valid consent.

Clark et al. randomly assigned hospital inpatients to receive either a verbal anesthesia discussion alone or both a verbal anesthesia discussion and a preprinted anesthesia consent form. In contrast with the results of Gerancher et al., these investigators found that “patients remembered less of the information concerning anesthetic risks discussed during the preoperative interview if they received a preprinted, risk-specific anesthesia consent form at the beginning of the interview.” They speculated that “patients who see an anesthesia consent form for the first time during the preoperative interview may try to read and listen simultaneously, and with their attention divided, may remember less of the preoperative discussion.”

Many patients have strong opinions about their analgesic options, based on information gathered from their obstetric provider, websites, books, magazines, classes, and friends and family. In addition, factors such as patient-provider racial and ethnic discordance, implicit bias, structural racism, and maternal distrust of the healthcare system influence any discussion (see Chapter 14 ). The nature of the consent process will differ depending on the level of prior knowledge, health literacy, decision-making preferences, and clinical circumstances, but a paternalistic approach, grounded on the premise that patients cannot have the same clinical knowledge of the clinicians, can no longer be justified.

Generally, in emergency situations, healthcare professionals provide treatment under a “presumed consent” model. Absent any collateral information to the contrary from the patient or a surrogate decision-maker, a patient should receive care in their “best interest” in emergency situations, even if such a patient cannot provide informed consent. In many jurisdictions, family or the decision-making surrogate can refuse emergency care on behalf of the incapacitated patient if they can genuinely state that they know the patient would refuse such care were the patient able to consent themself. When in doubt as to the accuracy of the family’s refusal, it may be necessary to preserve the best interest of the patient in the face of uncertainty as to the patient’s wishes. If the healthcare providers treatment was authorized under a medical emergency, the emergency determination should be carefully documented. The documentation in the patient’s medical record should contain a description of the patient’s presenting condition, its immediacy, its magnitude, and the nature of the immediate threat or harm to the patient.

Traditionally, minors have not been allowed to provide informed consent, based on concerns that they may lack the experience or capacity to inform judgments related to healthcare decisions. Consequently, in most states, a minor child needs a parent or guardian to make legal decisions, including informed consent for treatment. In many states, pregnancy is an exception to this rule, and pregnant women less than 18 years of age may consent for procedures related to prenatal, intrapartum, and postpartum care, as well as interventions that benefit the fetus. Pregnant minors still need medical assessment for capacity to make medical decisions (see earlier discussion). Because state laws vary substantially and can evolve rapidly, specific laws will not be covered here, and clinicians should consult the current statutory and case law of their state for specific guidance. Institutional legal departments can provide practical interpretation if needed. Despite nuanced differences, many states have some form of statutory exemption for pregnant minors, often utilizing an “emancipated minor” or “mature minor” standard, which are terms defined by individual state statute.

Some states additionally recognize circumstances such as being married/divorced, being in the military, and living independently, to confer decision-making authority to minors. These legal theories permit minors, in applicable situations, to make their own medical decisions wholly or partially. Furthermore, medical care provided to minors under these doctrines may be considered confidential and prohibited from disclosure to parents and guardians. Institutional legal counsel should be consulted for case-specific concerns.

Many states allow minors to consent to their own contraception-oriented healthcare services. Title X under US federal law explicitly stipulates that family planning services must be provided to minors on a confidential basis, and the ACOG stresses the importance of confidentiality in counseling adolescents about contraception. Rules governing consent for permanent sterilization tend to be more restrictive, and may require involvement of parents or guardians on behalf of minor patients. In most states, the adolescent parturient may petition a court for the ability to consent to permanent sterilization, without the involvement of their parent or guardian.

Procedures to end pregnancy receive special legal treatment in the United States. In 2022, the US Supreme Court overturned a long-standing precedent that recognized federal protection of previability pregnancy termination. Following the Dobbs v. Jackson Women’s Health Organization decision, many state legislatures moved to make abortion illegal or to impose gestational age limits in the first or second trimester of pregnancy. In states where abortion remains legal, access to abortion care for minors may require parental or guardian consent, although some states allow for judicial bypass in situations of incest or sexual abuse by a parent. Most states allow for termination of pregnancy threatening the life of the mother; however, there is sparse guidance on how grave of a threat must exist for this exception to apply. Some states permit termination of pregnancy in instances of severe fetal anomalies, with varying limits as to gestational age. Current individual state laws should be consulted for definitive guidance.

In 2014, more than 900,000 births in the United States were to immigrant mothers, a threefold increase since 1970. In 2018, immigrants accounted for 13.7% of the US population, and the birth rate among immigrant women (7.5%) was higher than those born in the United States (5.7%). If current immigration trends continue, immigrants and their descendants will account for 88% of US population growth through 2065. This rise in diversity challenges the ability of healthcare providers and institutions to appropriately care for immigrant obstetric patients. Some studies have shown poorer obstetric and perinatal outcomes in immigrant versus native individuals. Limited language proficiency is associated with significant risk for poor maternal outcomes, which highlights the importance of native language communication in healthcare.

The language gap between a patient and healthcare provider is commonly bridged using an interpreter. The use of bilingual family members, especially children, is discouraged as their unfamiliarity with medical terminology and emotional ties to the patient may hinder the accurate transfer of information from patient to doctor and vice versa. Suboptimal interpretation not only impairs information exchange but can undermine the shared decision-making and informed consent processes. The use of professional medical interpreters is a resource-intensive tool not always available for all languages or after regular work hours. However, there is a growing industry of HIPAA-compliant (Health Insurance Portability and Accountability Act) video or phone interpreter services offered 24 hours a day, 7 days a week that may be an alternative option for some health systems.

In addition to language discordance, low levels of health literacy can impair patients’ ability to understand the information provided by their healthcare provider. Unlike functional literacy, which refers to an individual’s operational capacity to function in daily life through use of basic reading, writing, and computational skills, health literacy demands the use of more complex language skills as well as the ability to process numerical information. Health literacy is defined as the “degree to which individuals have capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” In 2004 the Institute of Medicine reported that “nearly half of all American adults—90 million people—have difficulty understanding and using health information, and there is a higher rate of hospitalization and use of emergency services among patients with limited health literacy.”

The 2003 National Assessment of Adult Literacy, conducted by the US Department of Education, assessed literacy in a representative sample of 19,000 US adults (ages 16 years and older) who spoke either English or Spanish with at least some English. The report found individuals at higher risk of having low health literacy are those who (1) identify with a minority ethnicity (Hispanic ethnicity and those speaking only Spanish at home prior to schooling had the lowest rates identified), (2) have government insurance (Medicaid/Medicare) without a high school degree, and (3) obtain medical information from nonprint media. Low health literacy also affects immigrants with limited English proficiency. In a prospective, matched cohort design investigation, Brice et al. compared the health literacy level of adult English-speaking patients to Spanish-speaking patients presenting to an emergency department in suburban North Carolina. The Test of Functional Health Literacy in Adults was administered to both groups. The results revealed that 74% of Spanish-speaking participants possess less-than-adequate functional health literacy, compared with 7% of the English-speaking cohort. In a 2017 survey of medically trained interpreters and anesthesia providers at a major teaching hospital in Boston, 43% of interpreters felt that “less than half of their patient population was sufficiently literate to read and consent in their native language.”

Unfortunately, many published materials available for public education in anesthesia are written at a level higher than what the public can understand. In a review of educational material downloaded from 24 national anesthesiology society websites, Govender et al. discovered all material was above an eighth-grade level, which is too complex for lay comprehension. The US Agency for Healthcare Research and Quality published a health literacy universal precautions toolkit for clinicians. Strategies for patient communication include (1) using plain, nonmedical language (see Table 32.2 ); (2) adopting the patient’s words to describe their condition; (3) limiting information to 3 to 5 points and repeating them; (4) being concrete and avoiding terms that could be interpreted in different ways; and (5) using graphics designed to demonstrate the most important concepts.

Educational aids such as written material (brochures, illustrations, models) and video-assisted patient education can be invaluable in the transfer of information to patients, particularly if the material is presented in the patient’s own language with minimal use of medical jargon. Additionally, the use of educational videos has been shown to decrease patient anxiety and increase patient satisfaction with medical care. Obstetric patients frequently need to make complex healthcare decisions in unfamiliar surroundings when their healthcare providers are burdened by time constraints. By standardizing the information presented on specific topics, supplemental educational aids can help minimize misleading information, censoring of information, or devaluing of information.

The Institute of Medicine in the United States describes patient-centered care as care that honors the individual patient and respects their choices, culture, ethnicity, social context, values, and informational needs. Effective communication between patients and care providers is a building block of patient-centered care and a cornerstone of patient safety and optimal healthcare delivery. Using interviews of pregnant individuals of Mexican origin to explore their expectations of healthcare providers, Baxley and Ibitayo noted that patients “wanted to hear everything, hear it directly, and have it presented to them as if from a friend.” For these study participants, faith was a major component of their culture and a strong influence on their perceptions of health outcomes. Similarly, newly arrived Somali couples expressed the importance of their beliefs and cultural values during perinatal interviews. In their culture, having many children is considered desirable. Thus, a high value is placed on a vaginal delivery; a cesarean delivery can limit the number of children and, in their culture, cesarean delivery is also believed to be associated with death.

Patient autonomy is an important principle to uphold in decision-making. In many cultures and social contexts, this autonomy is preserved even when power to make medical decisions is passed on to another individual. For example, a competent patient may choose to allow a partner or other family member to make “first-order” decisions regarding medical care. If their decision to defer to the judgment of another person is truly free and voluntary, then this “second-order” decision is authentic and autonomous. Although justified in principle, this can be difficult to carry out in practice. One can imagine a situation in which a nulliparous individual has decided that she does not want epidural analgesia for labor pain management and that medical management decisions have been willingly relinquished to her partner. If the patient changes her mind once labor pains have started, but the surrogate, with all good intentions, insists on the predetermined plan, the patient’s wishes are no longer being properly represented. In this setting, the will of the patient needs to be confirmed and takes priority over predetermined proxy arrangements. Strong-willed family members, intending to advocate for their loved ones, may seem angry and even threatening. Often, they respond to patience and empathy, nonconfrontational communication, and input from the laboring patient and other parties.

When a provider is aware that a patient has expressed a religious or culturally based objection to certain aspects of medical care (e.g., blood transfusion for a Jehovah’s Witness), that aspect of the care should not be provided even in an emergency context. If a blood transfusion would be required to save the life of an individual who has expressed objection to blood transfusion, absent any collateral information to the contrary, it is appropriate to withhold the blood transfusion. Detailed lists of blood products and blood conservation therapies are available to facilitate shared decision-making and to clarify the specific interventions individual patients will and will not accept. Certain therapies (e.g., cell salvage with a continuous circuit) may be acceptable to some individuals. It is also helpful to explicitly consider likely clinical scenarios in advance. Patients can change their minds about receiving life-saving interventions at any time point, but severe hemorrhage can impact decision-making capacity, so it is important to confirm the four elements of capacity to make medical decisions, including the ability to express a choice. An incapacitated patient with a previously documented clear objection to the provision of some or all care should not receive undesired interventions just because they do not have the capacity in an emergency situation.

Although an adult patient can decline life-saving medical treatment on their own behalf, parental refusal of care for their child is more complex. The courts generally recognize that the state’s interest in protecting the life and well-being of a child outweighs the parents’ right to make decisions for the child when that decision could result in a significantly poor outcome. In some jurisdictions, the default is that the parents retain such rights and providers must go to court to overcome that presumption. In other jurisdictions, providers faced with a similar situation have the right to provide care to the child over the objection of the parents, and the parents or guardians must go to court to attempt to obtain an injunction to bar the provision of such care.

A gestational carrier is a person contracted to carry a pregnancy with a fetus created from a donated ovum (rather than her own) on behalf of another family. The gestational carrier is considered the patient at all times throughout the pregnancy, regardless of the level of involvement of the intended parents during such time. Although gestational carriers may, and likely do, have a formal contract with the intended parents that specifies the gestational carrier’s obligations, any agreement is only applicable between the gestational carrier and the intended parents. Healthcare providers are not parties to such agreements and are not bound to any provisions contained therein. If a gestational carrier violates a provision, the intended parents may have a contractual recourse against the gestational carrier. This has no effect on the healthcare providers’ obligation to treat the gestational carrier as the patient and allow the gestational carrier to remain the sole decision-maker. Healthcare providers should always remember that the gestational carrier is their patient, and it is their obligation to only provide care to which the gestational carrier consents, irrespective of the intended parents’ position.

This arrangement is distinguished from a traditional surrogate, who carries a fetus originating from her own ovum on behalf of another family. In these situations, the surrogate is a legal parent to the child even after birth, until a traditional adoption has taken place.

During pregnancy, situations may arise in which the interests of the pregnant woman and those of the fetus appear to diverge, or even to conflict. Common scenarios in which maternal autonomy may impact fetal well-being include parental substance use, declining recommended antenatal diagnostic testing or treatment, and delaying indicated delivery. Pregnancy may compromise maternal health and well-being in a variety of situations, including abstinence from otherwise routine medications or activities, exacerbation of medical comorbidities such as severe cardiac disease or pulmonary hypertension, and deferring standard medical treatment such as chemotherapy and/or radiation for cancer.

Numerous examples of maternal–fetal conflict have risen to the level of judicial review. Typically, appellate courts’ decisions have prioritized the pregnant woman’s decisions over the presumed fetal consequences. An index case is illustrative. In 1987 at 25 weeks’ gestation, Angela Carder, a survivor of Ewing’s sarcoma, developed back pain and shortness of breath. A chest x-ray revealed a large, inoperable lung tumor, and subsequent evaluation confirmed terminal cancer recurrence. Initially, she consented to treatments that could prolong her life to 28 weeks’ gestation, at which point she would consent to cesarean delivery. Unfortunately, her condition deteriorated rapidly, and within a week, she elected palliative care. She declined delivery, deciding the risks to her own health and comfort were not worth the small chance of producing a viable infant in the context of ongoing intrauterine hypoxia and extreme preterm birth. Her husband, mother, and obstetrician agreed. With Angela Carder intubated and sedated on mechanical ventilation and deteriorating rapidly, the hospital sought judicial review of this course of action, asking whether a surgical delivery should be authorized to save the potentially viable fetus. The judge in the case decided in favor of the fetus. A cesarean delivery was performed at 26 weeks’ gestation by a hospital-appointed obstetrician, and the infant died approximately 2 hours after delivery while the mother died 2 days later. This case spawned extensive debate as to whether coercive intervention to protect the fetus is ever morally or legally justifiable. With the assistance of the American Civil Liberties Union, Angela’s parents sued the hospital, administrators, and physicians for claims, including battery, false imprisonment, discrimination, and medical malpractice. These civil lawsuits were settled and the hospital adopted a written policy concerning decision-making for pregnant patients. The court later reversed its initial decision authorizing the surgical delivery and ultimately issued an opinion setting forth the legal principles that should govern the doctor–parturient relationship. The court stated: “In virtually all cases the question of what is to be done is to be decided by the patient—the pregnant woman—on behalf of herself and the fetus. If the patient is incompetent … her decision must be ascertained through substituted judgment.” The court affirmed that the patient’s wishes, once ascertained, must be followed in “virtually all cases” unless there are “truly extraordinary or compelling reasons to override them.”

Many contemporary medical ethicists agree that a pregnant individual’s informed refusal of medical intervention should prevail as long as they have the capacity to make medical decisions. In the case of an incapacitated patient, a legal surrogate decision maker has the right to speak for the patient in refusing such medical intervention. Newer legislation and some high-profile legal cases (some involving criminal prosecution) have challenged this notion, indicating there are circumstances in which a pregnant individual’s rights to informed consent and bodily integrity may be subordinated to protect the unborn child. For example, in 2004, Melissa Rowland was charged by the state of Utah with murder for the stillbirth of one twin because she initially refused cesarean delivery, even though she later accepted delivery by cesarean and her second twin survived. She pleaded guilty to child endangerment in order to avoid more serious charges.

Many cases have focused on prosecuting pregnant women with substance use disorders. In 1991 Regina McKnight was convicted of homicide by child abuse, and served 8 years in jail, after she delivered a stillborn infant. The state of South Carolina blamed the stillbirth on her use of cocaine. In 2008 the South Carolina Supreme Court unanimously reversed her conviction on the grounds that she did not receive a fair trial, primarily on the basis that her attorney failed to challenge the science that was used to convict her.

In a similar case, Shekelia Ward delivered a live infant in 2008, and both she and her newborn tested positive for cocaine. The facility reported it to authorities for possible child abuse, and she was arrested, imprisoned, and charged with a felony—chemical endangerment of a child. Prosecutors cited an Alabama state statute enacted in 2006 for the purpose of prosecuting parents who exposed children to the toxins associated with methamphetamine production; the statute did not mention pregnant women or their fetuses.

These cases reflect the concept that a fetus can and should be treated as separate and legally, philosophically, and essentially independent from the mother. The refinement of techniques of intrauterine fetal imaging, testing, and treatment prompted the view that fetuses are independent patients who can be treated directly while in utero . The prominence of some ethical models with assertions that physicians have moral obligations to fetal patients separate from their obligations to pregnant women also contributed to these developments. Finally, a number of laws (primarily passed at the state level) were enacted with the aim of defining fetal rights separate from a pregnant woman’s rights. In 2011 (reaffirmed in 2022) the ACOG Committee on Healthcare for Underserved Women issued a statement addressing the role of the obstetrician in reporting substance use. This document described a “disturbing trend” in legal actions and policies that criminalize drug use during pregnancy when thought to be associated with fetal harm or adverse outcomes. Noting that women seeking obstetric care should not be exposed to criminal or civil penalties and that few treatment facilities are available to effectively treat substance use disorders in pregnancy, the ACOG concluded that the use of the legal system to address alcohol and substance use issues is inappropriate and urged that policy makers and legislators instead focus on strategies to address the needs of pregnant women with substance use disorders.

The American Medical Association (AMA) has taken a similar position, stating that (1) substance use disorder is a disease amenable to treatment, rather than criminal activity; and (2) there is a pressing need for maternal drug treatment and supportive child protective services. Any legislation that criminalizes maternal substance use disorders or requires physicians to function as agents of law enforcement will be opposed by the AMA.

There has been an evolution in the approach of the ACOG and medical ethicists on the best means to address maternal–fetal conflict. A 1999 ACOG opinion offered the following three options: (1) respect the patient’s autonomy and not proceed with the recommended intervention regardless of the consequences, (2) offer the patient the option of obtaining medical care from another individual before conditions become emergent, and (3) request that the court issue an order to permit the recommended treatment. In 2004 the ACOG addressed the situation in which healthcare providers may consider this last option (i.e., legal intervention against a pregnant woman). Specifically, the ACOG stated that the following criteria should be satisfied: (1) “there is a high probability of serious harm to the fetus in respecting the patient’s decision”; (2) “there is a high probability that the recommended treatment will prevent or substantially reduce harm to the fetus”; (3) “there are no comparably effective, less intrusive options to prevent harm to the fetus”; and (4) “there is a high probability that the recommended treatment [will] also benefit the pregnant woman or that the risks to the pregnant woman are relatively small.” The most recent 2016 ACOG recommendations emphasize the key principles of shared decision-making and discourage external coercion from the court system.

In summary, two approaches are available to the practitioner dealing with maternal–fetal conflict. One approach is to honor a competent pregnant patient’s refusal of care. The other approach, less favored by many medical ethicists and the ACOG, is to seek judicial authorization of treatment, which overrides a competent pregnant woman’s refusal of care. Institutional ethics committees may be a useful resource for navigating the perceived conflict while also supporting shared decision-making.

In honoring a competent patient’s desire to refuse medically recommended treatment, the healthcare providers should carefully document the woman’s competency and ability to provide informed consent. Every attempt should be made to counsel the patient to follow the treatment recommendations. Documentation should include how, when, and what information was provided to the patient and family regarding the significant risks to both the patient and fetus if the recommended care was not provided. If time permits, the treatment options should be reevaluated with the patient at frequent intervals, with detailed documentation in the patient’s medical record. Additionally, legal counsel for the healthcare providers and medical facility may wish to prepare an “assumption of risk” form for the patient to sign. This form represents another level of documentation (beyond the detailed notes in the patient’s medical record) demonstrating that the patient was fully informed about the risks associated with her refusal of treatment and that the patient voluntarily elected to accept those risks. However, such a release signed by the parents may not protect the physician and medical facility from a claim brought on behalf of the child who suffers an injury as a result of nonintervention. In some cases, the court has found that physicians have a duty to provide care to the unborn child.

Before deciding whether to seek court review, healthcare providers should identify what issue they want the court to resolve. Is it whether the pregnant woman is competent? Is it whether there is a superior state interest in preserving the life of the viable fetus and/or the pregnant woman despite the (competent) patient’s desire to refuse recommended care? Healthcare providers also should consider whether a court is the proper forum for resolving these issues or whether another forum (e.g., an institutional ethics committee) may be a better choice. If a patient care dilemma is put before a judge, the healthcare providers give up a large amount of control over the disposition of the case. Nonetheless, in the absence of a legally authorized decision-maker, if a patient’s competency is at issue and there is adequate time, court review to settle the patient’s competency may be beneficial and is supported by both the ACOG guidelines and the Angela Carder decision (see earlier discussion). It is beneficial to obtain authorization for the provision of medically recommended care without waiting until the situation becomes an emergency. If the patient is deemed incompetent, the court may either appoint a surrogate decision-maker or directly authorize (by court order) the provision of medically indicated care.

It is not unusual for physicians to disagree with their patients’ healthcare decisions, and such differences are expected. In some cases, physicians conclude that providing the requested care would present a personal moral problem—a conflict of conscience, which prompts them to refuse to provide the requested care. Conscientious refusals have become especially prevalent in the practice of reproductive medicine, an area characterized by deep societal divisions regarding the morality of contraception and pregnancy termination. The ACOG Committee on Ethics has acknowledged that “respect for conscience is one of many values important to the ethical practice of reproductive medicine.” The ACOG stated that when conscience implores physicians to refuse to perform abortion, sterilization, and/or provision of contraceptives, “they must provide potential patients with accurate and prior notice of their personal moral commitments.” The ACOG committee opinion also emphasized that providers have an obligation to provide medically indicated care in an emergency that threatens the patient’s health, in which referral is not possible.