Surrogate Decision Making in the Case of a Pregnant Woman Newly Disabled With Brain Injury

Brain injuries are never planned. Brain injuries also disproportionately affect young adults who are busy with young adult tasks such as school, selecting careers, dating, choosing whom to marry, and whether to become parents. Young adults have rarely spent much time thinking about advance directives or wills, and almost never have left guidance for decision making in the event of brain injury. Thus, brain injuries often pose some of the most difficult dilemmas in medicine and certainly for those who must make decisions on behalf of the person with brain injury, specifically, the family and health care team. Many of these dilemmas have received exhaustive attention, particularly when the legal and moral issues involve questions of starting and stopping life-sustaining treatments [1-4]. I am grateful that Alberto J. Panero, DO, chief resident at the Department of Rehabilitation Medicine, University of Miami and Jackson Memorial Hospital, brought to my attention the following case that raises questions not only about how best to make decisions on behalf of a woman with a new brain injury but also her fetus. Next to brain injuries, maternal-fetal conflicts and discussions of indications for pregnancy terminations pose some of the most difficult and emotional dilemmas in medicine. The patient is a 25-year-old gravid 3, para 0 woman with 2 prior elective pregnancy terminations who presented as an unrestrained passenger in a motor vehicle collision, with an initial Glasgow Coma Scale of 7. Serial imaging showed worsening subdural hematoma with midline shift; therefore, she underwent an emergent decompressive craniectomy. She was admitted to the brain injury rehabilitation floor approximately 10 days later with a Rancho IV level and was discovered to have a viable pregnancy, which dated 9 weeks and 5 days. The obstetrics and gynecology and the brain injury teams were consulted to discuss the medical risks for both the patient and the fetus of continuing versus terminating the pregnancy. The ethics consultation service was consulted to facilitate the process for surrogate decision making. Her family and boyfriend were in disagreement about whether she knew about the pregnancy before the brain injury or would want to continue the pregnancy. I have posed several questions for consideration, which I have asked the following expert commentators to explore: Joseph J. Fins, MD, MACP, The E. William Davis, Jr., M.D. Professor of Medical Ethics, Chief, Division of Medical Ethics, Department of Medicine and Public Health, Weill Medical College, Cornell University, New York, New York; Cassing Hammond, MD, Director, Section and Fellowship in Family Planning and Contraception, Associate Professor in Obstetrics and Gynecology, Northwestern University Feinberg School of Medicine, Chicago, Illinois; and Preya S. Tarsney, JD, bioethicist, Donnelley Ethics Program, Rehabilitation Institute of Chicago, Chicago, Illinois. After the commentaries, Dr Panero and his colleague Dr Martinez will present a postlude of what actually happened with the patient in question. I am particularly appreciative of the fact that Dr Panero sought out the patient and her mother to both get an update as well as consent to use her story (with appropriate disguising of details). The intersection of brain injury with the polemics of maternal-fetal rights coupled with the challenge of family discord makes this case potentially contentious. If handled badly, then it is newsworthy. Just imagine an amalgam of the most challenging aspects of the landmark abortion rights case, Roe v Wade [1] mixed with the end-of-life drama of Quinlan [2] and the family dynamics of Schiavo [3]. There are almost too many features with which to contend. The goal then is to start simply and begin with the basics and the medical facts. How does the pregnancy affect the status and prognosis of the patient, and, conversely, how viable is the pregnancy given maternal brain injury? Although the fate of the patient and fetus may appear to be at odds as the case is presented, there is no escaping the fact that fetal demise will result if the patient were not to survive. This suggests that the needs of the patient and fetus are not oppositional and that there is a mutuality of maternal and fetal interests, at least initially. This further suggests that the immediate and I would contend uncontested objective is maternal survival. This should be the unequivocal goal of care, given that neither potential surrogate has asked that life-sustaining therapy be withheld or withdrawn. Aligning the maternal-fetal dynamic in this way is important because it slows the pace of decision making. The clinical team can work together with the patient's parents and boyfriend in the shared common pursuit of restoring maternal health and well-being. Time remains to address the termination question, and it would have been a mistake to feel compelled to force that decision, as it were, prematurely, because the fact pattern may change. For example, the decision may look different should the patient develop a complication related to pregnancy. If gestational diabetes, pregnancy-related hypertension, or bleeding associated with disseminated intravascular coagulation were to complicate the patient's recovery, then all potential surrogates might agree that termination is indicated to save the mother's life. Conversely, if the pregnancy and recovery progress in tandem and the patient improves, then decisions about sustaining the pregnancy might also evolve. The notion of patient improvement is important to underline. Because of the complex relationship between the evolution of the right to die [4] and brain injury [5], if this case were to arrive in most U.S. hospitals, then the patient's prognosis would be unequivocally viewed as grim and incompatible with pregnancy, much less motherhood. Although there might be a poor outcome, it is not guaranteed. [6]. Although the patient will have significant disability, her recovery could progress to the point that she might be able to provide a perspective on her pregnancy and willingness to go to term. Although she might recover with significant disability, the disability itself is not a contraindication to good parenting. Like many aspects related to brain injury, time is on our side [7]. Forestalling the big question about termination can help clarify the patient's prognosis and the state of the pregnancy, making choices clearer. A time out is also helpful in this particular case, because there is a wrinkle in the narrative that needs to be ironed out: There are inconsistent claims about the patient's knowledge and desire to become pregnant. This small detail forms what the philosopher John Dewey would call the problematic situation, that set of circumstances whose recognition allows for deeper inquiry [4]. That problematic situation, that curiosity, is that the patient was "discovered" to have had a viable pregnancy, 10 days into her hospital course. One would have thought that whoever had knowledge of the pregnancy would have brought that salient detail forward at the outset, either to protect the patient or to safeguard the fetus. So why was that information not shared sooner? My guess is that whoever claimed knowledge of the pregnancy, the grief-stricken boyfriend or the mother desirous of a grandchild by which to remember her daughter, did not know that she was pregnant. They might have convinced themselves otherwise; such is the power of grief and anticipatory bereavement. Alternately, knowledge was misrepresented to try to save what was left of their now shattered lives. Of course, these are speculations, hypotheses that need to be refuted or validated by the medical and narrative facts, details that need to be cautiously ascertained through skilful exploration and mediation. I would ask each surrogate what he or she knew about the patient's prior wishes, pointing out that this information would greatly influence the course of care. Importantly, I would distinguish the patient's wishes from substituted judgment, what the surrogate believed the patient would want. If knowledge of the patient's wishes were elusive, I would next explore the surrogate's views of the pregnancy in light of the trauma of brain injury. In this focused exploration of trauma and grief, I would be informed by the literature on postmortem sperm retrieval (PMSR), which powerfully demonstrates how the pain of loss is translated into a desire to have a child through sperm harvest. The desire to continue a pregnancy after severe brain injury is an equally generative response to loss and decline. Several years ago, colleagues and I published guidelines on PMSR [8], which I believe have applicability to this case. Our guidelines suggested that a decision about insemination be delayed for 1 year to mitigate the distortions of acute grief and to allow the spouse to seek counseling. The pace of pregnancy provides a similar, although not unlimited, opportunity for deliberation. Our guidelines also required evidence of intended paternity before insemination. Although the patient probably never considered this mix of motherhood and brain injury, was this a desired pregnancy? Was it intended? Is the report of the surrogate on the patient's views accurate or distorted by his or her own sadness and/or desires? In my view, the evidence required to establish intent should be high so as not to compel a woman to become a mother against her will, especially because she has already had 2 terminations. Unfortunately, the PMSR guidelines provide mixed signals on whether the views of the boyfriend or of the parents should prevail when there is no evidence of the patient's premorbid wishes. In the case of PMSR, consent was limited to the decedent's wife whose own desire for motherhood would be a precondition for insemination. In the case of our pregnant patient, the boyfriend, who should be tested to assure paternity, should be given deference as a prospective parent. Although his standing would be unequivocal if he were married to the patient, his protopaternal rights should probably trump those of the parents with respect to the continuation or termination of the pregnancy. Obviously, it would be best if all parties achieved consensus on these difficult decisions. In summary, this case calls for a pregnant pause, a time out, to avoid a rush to judgment. This delay allows the medical situation to evolve, the surrogates to find common ground, and the narrative to be cultivated. The complexity of this case, and many cases that involve severe brain injury [9], calls for nothing less. Few obstetricians will ever attend a pregnant patient who has severe traumatic brain injury. Several researchers have published literature reviews, each one noting the ethical dilemmas that confront the health care team and emphasizing the need for integrated care. Unfortunately, as Catlin and Volat [1] note, "classical ethical principles do not seem to work: neither the woman nor the fetus has autonomy, neither can give informed consent and neither can refuse treatment." Too often, the health care team seeks refuge by adhering to a risk-benefit formula ultimately insufficient to guide the deeply complicated question of whether and when to terminate pregnancy. When confronting a pregnant patient who is severely injured, the first question nonobstetricians ask obstetricians concerns the relative risk of pregnancy termination versus abortion. This is an easy question to answer, at least in places where patients have access to safe, legal abortion. In the United States, the risk of maternal death from childbirth is 14-fold greater than the risk of death from abortion [2]. Few medical procedures rival the safety profile of first-trimester surgical abortion. Fewer than 1% of patients who undergo first-trimester abortion experience any serious complication. Indeed, the risk of maternal death from a first trimester abortion is less than the risk of death from a single injection of penicillin [3]. Traumatic brain injury and other medical comorbidities accentuate the safety advantage of abortion relative to continuation of pregnancy. The patient who terminates a pregnancy avoids both the immediate risks of pregnancy, such as a higher likelihood of venous thromboembolism, as well as those conditions more likely to develop during later gestation, such as preeclampsia, preterm labor, and complications related to abnormal placentation. The obstetrician-gynecologist can help the patient's family and other health care providers by dispelling common misperceptions about the safety of abortion and by providing a reasonable description of risks that might complicate ongoing pregnancy. Critically injured patients with traumatic brain injury who continue pregnancy, for example, are more likely to experience pituitary failure, infectious morbidity, cardiovascular instability, and other conditions that jeopardize the health of both the mother and the fetus [4]. They will require central lines for monitoring blood pressure, pressors for the treatment of hypotension, and replacement of thyroid hormone and corticosteroids. They will require some form of enteral or parenteral nutrition, which necessitates either feeding tubes or chronic use of hyperalimentation. The patient's need for mechanical ventilation will change with advancing gestation. She will likely experience periodic infections that require the use of antibiotics, and she will remain at heightened risk of venous thromboembolism throughout pregnancy and the puerperium. Obstetric management usually entails serial ultrasound to evaluate fetal growth, periodic monitoring of fetal heart tones, and tocodynamometry to evaluate contractions. Unfortunately, it is difficult to quantify risks associated with continued pregnancy given the lack of cohort studies that assess the risk of preterm birth, fetal growth restriction, thromboembolic phenomenon, and other maternal and fetal morbidities. Would precisely defined risks really change the decisions of those charged with making substituted judgments on behalf of patients who are severely injured? As a family planning subspecialist often called upon to counsel women who are and confronting severely I do not believe Although the relative risk of abortion versus continuing pregnancy is already well women on a risk-benefit formula when making such a can the best the patient, her and other of the health care abortion often complications that to and, in some for their decision to undergo termination who make substituted decisions often these but might find themselves with pregnancy the the of abortion has in response to the of abortion procedures that at surgical which usually lack access to and other health more by have how to assess needs in a way that Many particularly those with the of family planning and also these for example, often find that health care pregnancy by a risk versus often use a focused on their to care for a this in A patient and her confront a severe fetal care a of issues that the patient and will throughout the of pregnancy and after Although the to such a the woman remains when she significant One of the best to the is to ask will care for this for a child both fetal and maternal risks but most women to a different a more to the that the patient where she care providers who care of a woman with a severe brain injury need to ask the family the than on the patient's and for example, the health care team should ask the family how the patient would to the question of for the Would she want to have a child if she could not care for Would she want to have a child that likely required Would she want to care for a child who has of against the mother as a [6]. A that on the to care for a child avoids to abortion and to the most women actually will also help to the family the patient's and in the her own As a of 3, a and a who in a rehabilitation I certainly have a to this case. I feel for this young woman and her my I would my as the ethics on the case, and, in so I would on the ethical question to be and the best process to facilitate surrogate decision making to this question. The question what would this in her want to do given the of all the information have at our My first would be to get the parties to the surrogate If this had happened in would first ask whether the patient has an advance and, if then would a surrogate to the [1] and the family whom that would If this person is then would the an person a in the of a what know about this case, because this young woman is not her adult or adult would likely as the what does as the surrogate really substituted to make a decision about whether or not to terminate the pregnancy. The surrogate should in the of the patient and make the decision as the patient would not as the surrogate would Thus, all that is is this patient's it is the through which new such as and so should be at this is As the case this patient is a young adult and may not have her on big much less what she would if she had a severe brain injury and would now be with a complicate it is well that there may be a of or after a traumatic brain injury [2]. In other in of what this woman would may be her surrogate to make a decision for that he or she is help the surrogate make a substituted judgment, I would ask questions that are to the patient's or which can of and so For I would about how this patient about her the this is and what she may have were the that her to have 2 in the I would ask if those are for her or if that or for this I would look for information from the boyfriend or to give more details about what the patient about this pregnancy. I would also the family to explore whether should be consulted In that I would that the surrogate the time to with with a brain injury their to get a of the of with a brain injury. in I know that there are many that are simply not accurate of what it is to with and to care for with a If the evidence is as to what this young woman would likely then would look to the patient's and explore the risks and of continuing with the pregnancy versus terminating the pregnancy. Like many complex medical are and have the of a young woman who may need further procedures and treatments that might with the of the fetus the This is where my medical colleagues would the risks and to would then be to the surrogate to these risks and this process as a I also as a in of providing emotional to the of family and who may be Although I have never a one in this I know what it to be at the when decisions are of and can go a I would start by that this is a difficult for the surrogate or the family to be in and I would set the on small issues and try to set a In I would that I am to help and would address and confront the in the the As a who is also to with the medical I would that there is for in this specifically, if the surrogate to terminate the pregnancy, there are health care who may feel that be in the abortion or in for the patient as she the The such to refuse to in these procedures if have or to in such and it from or in their Although many that there are to this and from state to is more in the of abortion than in other of medicine. Indeed, almost state has own abortion in to the [3]. I believe that it is important to in this and to with the medical team about this at the because want to a for to the best care which that force to do against their if can this at the of a case and allow to then those who feel by their to can get than which any in of care for the That in my view, ethics are not in a to because need to out all the and to help their way through these decisions. I will where I by that to these of are and probably for the of out the next for this young are Her story will start and with her the and the and her surrogate decision will be to the to all the together to make a decision on her The of the ethics is to guide and the surrogate through that In a case in which neither the patient nor the has a pregnancy, the is in a challenging or she must find a way to the patient's medical that these are as risk as to the fetus. the must find a way to protect the rights of the patient and the to the wishes of the patient before the The boyfriend before the motor vehicle collision, the patient and he had to terminate the pregnancy and to do was about the of with the she had received and the potential on the fetus. ethics and risk management was called to the of substituted and legal Our case particularly difficult because the patient as a level 1 and, because her family in were not for decision making. to the a was next in to be her and was the the time the patient was admitted to the patient's mother in had been and was now able to in the decision making. when the boyfriend a termination of pregnancy, if he to be the legal in the first therefore, thought that it was best to with the The patient's mother that the boyfriend should be the given that he was at she would require a to the United she to remain in the In the United States, the v that a woman has a to whether to or terminate her pregnancy as as she is the time to terminate [2]. Although the of termination of pregnancy raises an ethical maternal-fetal The ethical is further if the woman does not have In that the patient's was not by the pregnancy, the obstetrics team did not have an to terminate the pregnancy and the termination was to be The case was further complicated in that the state of does not allow a to have a fetus or The would have to a by a state to allow the termination of pregnancy to from the initial from the motor vehicle collision, the hospital may many risk The patient was given underwent 2 surgical procedures and received from and that the and the risk of from the the safety was The to the was to be between and For less than 5 the risk for or is and the risk for as an adult are less that 1% The risks of only therefore, the and the mother were informed that the should have had no significant on the A of all received by the patient was by the were between A and which that there was no evidence of risk to the fetus but the risk could not be Our patient common complications after a traumatic brain injury. The most significant were and The patient was in and severely and her in therapy As she of her she and the issues are with the use of or posed a potential to the fetus because are which that studies have an on the fetus and that there are no studies in potential may use of the in pregnant women potential This the of maternal-fetal to her and these complications to the point in which the health was now the was that the of the potential risks for fetal from and obstetrics the patient was first on the to her in her but and continued to The decision was to treatment with the which is the for women who are pregnant and have and/or After there were significant in her severe The patient that she was pregnant and often pregnant. She on her when asked if she to terminate or the pregnancy. The was to that the patient's and were and, more that the patient and the had access to and termination of pregnancy, and to make that all were presented to both the patient and the The risk management team consulted with the legal counsel to that state and were and that there were no legal that would influence the an advance which was not because almost no 25-year-old person will have the only objective evidence was the of the In that the boyfriend and the mother both that she had prior terminations of pregnancy, the ethics thought that this information an of her teams were in the and the family with the medical and of care of the medical team in a legal and As by [5], a team is when with ethical issues that a of and/or family counseling. this had all the objective evidence the patient's medical issues and and had a good of the health and of maternal-fetal was to have a that the the patient's mother in from and case and of the team and ethics The case was presented to all parties and all questions from patient's and The team that there were not any to to the a termination of pregnancy the The was on how and where to seek legal counsel to go through with the termination of pregnancy the was also with and medical guidance on what to do in the and if he not to terminate the pregnancy or if a his The patient was from at a Rancho to the that she was not to have medical management of her pregnancy. In the the not to seek a termination of pregnancy The mother from 1 later and the care and later the The patient to a The has not been in the of the or the patient, provides child The patient continued to make significant progress and 2 years after the is now at a Rancho She a in and in and of her does have and can become in the of new For this she from her mother and is with and Although she does not remember much of her she that she has her and is grateful for the medical care she our and in making decisions cases of termination of pregnancy when neither the patient nor the has an that our objective by in pregnant women with new brain injury. termination of pregnancy. MD, medical of Department of Rehabilitation Medicine, University of Jackson Memorial The patient and her mother were and both to use their case for the of the and both the The was and her information has