Case Study
A 21-year-old gravida 2, para 1 woman at 23 weeks’ gestation with twin pregnancy presents with headaches and blurred vision. Her history is significant for an inoperable grade IV anaplastic astrocytoma with a history of two prior craniotomies for resection and a completed course of radiation therapy. Comorbidities included morbid obesity, childhood asthma, history of transient ischemic attacks, and seizure disorder.
Neurosurgery consultation deems the tumor to be in an unresectable location. Neuro-oncology is consulted and agrees that her prognosis is poor and could progress to become fatal before the fetuses reach term. Unfortunately, without surgical resection, her options are either radiation or chemotherapy. The typical chemotherapeutic agents are teratogenic in pregnancy. Radiation Oncology states that radiation is not an option because it may contribute to more edema formation and would likely hasten her death.
Given the need to begin a treatment regimen soon, the patient is offered options of termination of pregnancy versus prolongation of pregnancy. Termination would allow immediate treatment, which might prolong her life by weeks to months. She is counseled that she has the option of deferring all treatment, which would avoid exposure of the fetuses to chemotherapy, but at the cost of likely resulting in her death in a much shorter time period and potentially even during pregnancy. After multidisciplinary discussions, the patient decides to continue her pregnancy to benefit her unborn children.
Extensive discussions are also held with the patient and family regarding her code (resuscitation) status. The patient opts for full code resuscitation, and after 4 minutes to proceed with perimortem section to increase the chances of maternal resuscitation. The patient’s mother is also designated as the medical power of attorney.
Key Points
This case illustrates the approach to a terminally ill pregnant patient who has full capacity to make decisions that will affect her future treatment.
Informed consent should include the patient as an active partner in decision making with the health providers.
The importance of an advance directive by the patient in this situation is emphasized.
Is a “Do Not Resuscitate” order appropriate in this situation, and if so, how can it be implemented in someone who is pregnant?
Does the mother have the right to make a decision that may conflict with the well-being of her babies?
If she had opted for termination of pregnancy, would that be allowed because it conflicts with fetal interests? And if she had opted for “Do Not Resuscitate” (DNR) status, could that be implemented in the setting of pregnancy?
Discussion
Consent and Capacity in Pregnancy
Informed consent ensures that maternal wishes are respected, adhered to, and executed during the birthing event and ensures active involvement of the patient in her medical treatment. In a pregnant patient, variables such as capacity to think and process informed consent during labor, time limitations especially in urgent situations, and unexpected changes of labor course can make decision making more complicated for the treatment care team.1 The process requires a patient with capacity, disclosure of information, voluntarily decisions, and cooperation with the plan.2
Advance Directives in Pregnant Patients
An advance directive is a formal document that dictates a patient’s explicit wishes regarding her future health status and treatment. A durable power of attorney is established for healthcare, and this is a person who is appointed as the patient’s surrogate decision maker or healthcare proxy. This person will execute the patient’s wishes when the patient is incapable of doing so.
The wishes stated in the advance directive should be respected and carried out by the healthcare providers. If the decisions made by the patient and relayed by the surrogate decision maker cause the physician or healthcare provider to experience moral distress or ethical conflict, patient care should be transferred to someone with more experience and who is more comfortable with the choices.
In this situation, the patient opted to continue pregnancy even though it was detrimental to her health status. The obstetricians offered her termination of pregnancy before fetal viability could be reached. This would have enabled her to proceed with chemotherapy and radiation therapy to prolong her life. However, after careful consideration, the mother decided to continue with her pregnancy, and plans were made to deliver the twins after 24-week viability status was achieved.
Two issues require discussion here.
1. Maternal-Fetal Conflict of Interest
If the patient had opted to terminate the pregnancy, conflict of interests between the rights of the mother and needs of the fetuses could have occurred. Most ethicists would argue that the medical provider’s duty lies with the primary patient – the mother. Patient autonomy must be respected, with the mother accepting responsibility for negative outcomes based on her own choices. In reviewing the case of Melissa Rowland, charged with murdering her fetus by refusing a cesarean delivery, the authors conclude that “[t]he best protection for a fetus lies in the protection of the rights of the individual best positioned and most highly motivated to defend its interests: an informed and empowered mother.”3 In the same way, paternal desires do not trump those of the mother. Open dialogue and compromise should always be sought, but the parturient maintains decision-making power.
In this specific case, the patient had an inoperable brain tumor with a very poor prognosis. Despite the prognosis, the patient wished to remain full code. However, if the patient had opted for a DNR status, depending on her geographic location, her end-of-life wishes could be overtaken by the rights of the fetus. The laws governing care to a pregnant mother in this situation vary by state. Given that this case occurred in Texas, current policy in the Texas Health and Safety Code 166.049 states that “[a] person may not withdraw or withhold life-sustaining treatment under this subchapter from a pregnant patient.” This was discussed early on with the patient and her family. Texas is one of approximately a dozen states that have specific legislation that requires life-sustaining treatment to pregnant women overriding any advance directives. Several other states may allow women to write in their wishes with regard to pregnancy, and their instructions should be followed.
The American College of Obstetrics and Gynecology (ACOG) has drafted ethical guidelines to follow in case of maternal-fetal conflict of interest.4 The American Medical Association (AMA) has similar guidelines. It is extremely important for hospitals to have policies in place when such an extremely rare case occurs in their institutions.
The key point is that maternal autonomy and expressed wishes in a competent state of mind should be respected and followed through. The International Federation of Gynaecology and Obstetrics (FIGO) has similar policies.6 There should also be room for decision making by a proxy when available. Resorting to a court-ordered decision should be the last resort in such situations.
However, in developing world, the concept of patient autonomy and individual choices may not apply because the social structure and family dynamics play an important role in many countries. Most hospitals do not have set guidelines to handle ethical issues such as this. Doing what is morally right for the patient and prioritizing the patient’s wishes are widely regarded as correct by providers all over the world.
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