Pregnancy Exclusions: The Hidden Secret of Advance Directives

In an advance directive, a legal document known informally as a living will, individuals specify and record their preferences for future medical care such as decisions on life-sustaining treatments in the event that they become unable to make decisions. It may also record an appointed surrogate decision-maker to act in the patient’s best interests in cases where the directive does not cover a particular situation. These directives help healthcare providers respect patient autonomy by ensuring care aligns with the patient’s wishes. 

Imagine that a patient has carefully documented their medical preferences in an advance directive, confident that this document will be honored if they become incapacitated and unable to make medical decisions in the future. However, this patient faces an unwelcome surprise: their directive will not be fulfilled because they are pregnant. This limitation, often a bitter revelation for many patients, furthers an unethical policy — grounded in a broader pronatalist principle — that restricts a pregnant patient’s autonomy while emphasizing the life of the fetus.

More than half of U.S. states have exceptions known as pregnancy exclusions in their advance directive laws. These laws statutorily prohibit the choice to withhold/withdraw life-sustaining treatment when a patient is pregnant, even if such a prohibition conflicts with a patient’s advance directive, thus overriding a pregnant patient’s expressed medical preferences. The restrictions vary in terms of how states will apply a pregnant patient’s advance directive when they are on life support. In some states, a restriction might make the directive “void per se,” i.e., “void in all circumstances,” while others may make the restriction “void if the fetus can develop birth at some level of certainty.” Notably, these exclusions often are non-obvious or “hidden,” as many states that have a pregnancy restriction do not disclose the restriction in their advance directive forms, leaving many patients unaware that their directives might be thwarted if they are or become pregnant.

From an ethical standpoint, pregnancy exclusions “prima facie,” i.e., on their face, violate a patient’s autonomy and best interests, as a physician is compelled to breach the documented medical wishes of the patient. However, the hidden nature of the exclusions produces an additional ethical concern, as they also violate a patient’s informed consent during the creation of the advance directive. In medicine, informed consent is an essential duty within both law and ethics. It occurs when an individual has all the necessary information to make an informed decision about their medical care. The ethical core of informed consent is to respect patient autonomy by enabling well-informed decisions with their doctor, thereby fostering shared decision-making and trust in the patient-physician relationship. Indeed, research shows that patients who are aware of and involved in their treatment decisions are more likely to adhere to their care plan.  

While it may be challenging if individuals hesitate to confront adverse outcomes, advance care planning offers reassurance that their wishes will be honored.  This dialogue between patient and doctor highlights the importance of full disclosure for informed consent, as patients need to understand the circumstances influencing their directives. Physicians play a key role in making sure patients are aware of unlikely scenarios before signing. Importantly, a patient’s signature on a directive alone — without the adequate disclosure process — does not constitute informed consent; rather, informed consent is a process involving dialogue and trust between patient and physician.

However, if patients are never informed that pregnancy might render their wishes void, the process for making their advance directive cannot be truly informed. 

To tackle this ethical pitfall, there are two policy solutions: one focused on physicians’ ethical duties and another focused on the law. 

• The ethical duty requires physicians to inform patients about relevant legal exclusions to directives, like pregnancy exclusions during the informed consent process. Physicians should briefly explain relevant state laws, encourage questions, and clarify the patient’s options and outcomes to help patients make informed, unbiased choices. Obstetricians and gynecologists should ideally lead this discussion, but all physicians must disclose relevant information that could affect the directive, regardless of state laws. Failing to do so breaches their ethical duty and results in inadequate informed consent.

• Absent the total abolishment of pregnancy exclusions, laws should at minimum mandate physicians, hospitals, or entities to disclose the existence of any legal advance directive pregnancy exclusion to patients. The Patient Self Determination Act is a federal law requiring hospitals, skilled nursing facilities, home health agencies and other entities to provide patient confirmation of the “individual’s rights under state law to make decisions concerning such medical care, including the right to accept or refuse medical or surgical treatment and the right to formulate advance directives.” This disclosure mandate centers on patients’ rights under the law to create an advance directive, but does not extend to physicians or require clarification of limitations on this right, such as pregnancy exclusions. As noted earlier, state laws and policies are a hodgepodge, where some have advance directive forms disclosing pregnancy exclusions, while the majority of states do not. Amending laws to mandate disclosures to patients and require physicians, among others, to make these disclosures would ensure a more ethically informed consent process during the creation of advance directives.

Advance care planning helps honor patient wishes when they cannot communicate. An undisclosed pregnancy exclusion that alters the directive causes an ethical breach and erodes trust. Solutions to this problem can be found within both ethics and law and can address this challenge by: (1) highlighting physicians’ professional and ethical duty to inform patients about pregnancy exclusions and (2) pushing for laws to require such notification, thus better protecting autonomy and informed consent for patient-aligned decisions.